# Updates on AVERY. (good news update pg 33 post 489!)



## NHAnn

I thought my first post on this board would be about my dear mom....8 years ago (at age 72)she had brain surgery for 2 anuerysms, she stroked, she was comatose for many weeks, in rehab for many mroe and in a nursing home since.  But she has defied all odds, and surpassed all projections as to extent of recovery, even from world renowned neurosurgeons at Mass General.  When Marsha started this board, I posted mom's pic at her 80th birthday in September, with her 83 yr old sister.  A couple of weeks after the party she fell and broke her hip.  She developed pnuemonia nd we almost lost her one night when she was in extremem resiratory distress.  But she rallied and a week after the hip surgery was backat the nursing home and kicking butt at physical therapy and winning bingo games as usual.  

Thanksgiving morning we got a call that she had been taken to the ER...she has pneumonia again.   

But yesterday afternoon we were dealt another devastating blow...not about my mom, about my most precious first grandchild, my 5 year old Avery. He was diagnosed with luekemia. I can't even get my mind around this. He was not feeling well at the T-day table, I was a bit distracted worried about mom, but DIL said he hadn't been himself for a week or so. I noticed his color was off and he was unusually whiney and tired but I thought maybe he was getting a little cold, and they also mentioned he'd had a flu shot Monday. DH did remark on the way home that he was concerned about how sick he looked. Apparently he got worse Friday ...and yesterday they decided not to wait for his Monday appt and got him in to the doc yeaterday afternoon. Based on the physical exam and some rushed preliminary blood work they said he appeared to have luekemia, wanted him to go ASAP to Dartmouth Hitchcock Medical Center in Hanover, an hour or so from here, for a transfusion. They said plan on him being there at least a week, probably 2, maybe more depending on the further testing and treatment. They called us to come stay with his two little sisters. DIL's mom came up from Mass today and took over there. We do not know much more today, waiting for word on today's testing and meetings with pediatric oncologist. I can't even grasp that...pediatric oncologist.... I know medicine is wonderful now and he is in good hands there...but my heart is breaking. Please pray for my little guy.

edited to change title....we're out of shock and denial mode and ready for the battle!!


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## King Triton

I'm so sorry about your news.    When life gets too much, just give it to God and let him deal with it.  It's in God's hands now.  My thoughts and prayers are with you.  

I'm sending you some extra pixie dust your way.


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## Mackey Mouse

Ann... I just read this, I have pm'd you, and we will start praying for the little one....Hang in there, know we are here for you.. 

Dear God, how many more of us with these dreaded diseases...


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## meeskamouska

Your grandson will be in our prayers and thoughts....it is always harder to deal with these things when they happen to young ones.  But don't forget kids have a lot of fight in them and are stronger and smarter than we give them credit for.


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## WDWLVR

Ann - you and your grandson will be in my prayers!


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## safetymom

I will keep you all in my prayers.  It is so tough to watch a child suffer with an illness.


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## minkydog

I'm so sorry to hear this. I work in a children's hospital and I can assure you, they will do everything in their power to help him. It just isn't fair. Kids shouldn't get cancer.  Where is that kicking the dog icon when you need it?


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## disfanatiks

Many prayers being said for Avery, dear friend.  I always will remember his Christmas Sweater picture a few years back.  One of my all time favorite pictures.  

As the above poster said, in the Children's Hospitals they work as hard as they can.  This is so true as you know George used to work at a children's hospital.  

Always know I am here for you.  I am praying for peace for you and the family during this time.  

"God is our refuge and strength, always ready to help in times of trouble." 
(Psalms 46:1) 

Teri


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## luvsmickeymouse

I am so sorry to hear of your news.  Prayers and hugs are with you.  Dartmouth Hitchcock is wonderful.  My kids go there for their surgery.  They were born with a cleft lip and palate.  In my opinion they have the best Doctors.  Best wishes for your grandson.  Please keep us updated.


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## Blueeyes101817

Im so sorry to hear this..your grandson will be in my prayers


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## kejoda

Ann my heart is breaking for you.  Prayers for your little guy and the rest of your family.


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## TheDisneyGirl02

You and your entire family are in my thoughts and prayers.  I hope that your mother continues to improve and your grandson gets well very soon.


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## Pea-n-Me

We've already talked, but just wanted to offer you a    here, too.


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## Mackey Mouse

Ann, please keep us posted here, we are praying for your family... Hugs


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## goofy4tink

I'm so sorry Ann.....man, you've had more than your share I would say. I'll be praying for your grandson as well as your mom. Dear God....when is this going to stop!!!!!  Too many stories of this dread disease. Know that we are here for you.....praying, praying, praying!!!!!


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## NHAnn

thank you all...from my heart..  

we have learned it is "ALL"  acute lymphoblastic luekemia, a common type of childhood luekemia.  Testing and treatment plannning continues today .


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## Mackey Mouse

OK...so we start planning and do treatment and we beat this darn thing with the power of prayer.. 

God, I am so angry lately.......geez, a sweet little baby.. I do not get it..   Hugs to you Ann... we are here for you.....


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## Christine

Ann, my thoughts and prayers are with you, Avery, and your entire family.


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## minkydog

NHAnn said:
			
		

> thank you all...from my heart..
> 
> we have learned it is "ALL"  acute lymphoblastic luekemia, a common type of childhood luekemia.  Testing and treatment plannning continues today .



Just wanted to give you a word of hope. My little niece developed ALL at the age of 18 months. She was treated aggresively for 2yrs. It was a rough go for awhile there, but she is now a wonderful, vibrant 10yo with no health problems.  We'll pray for the same experience for your Avery


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## JunieJay

Ann - Avery has been in my prayers and will continue to be in my prayers.  God bless him.


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## NHAnn

minkydog said:
			
		

> Just wanted to give you a word of hope. My little niece developed ALL at the age of 18 months. She was treated aggresively for 2yrs. It was a rough go for awhile there, but she is now a wonderful, vibrant 10yo with no health problems.  We'll pray for the same experience for your Avery



Thank you!!  It is a ray of hope to hear successes!!  

and thank you all again for the support and prayers!!


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## CarolAnnC

Ann, I am keeping your little grandson in my prayers for his speedy recovery.  My younger DD was diagnosed at age 12 with a serious heart condition, and we were set up with a pediatric cardiologist at Dartmouth Hitchcock to save us from driving so frequently into Boston Children's Hospital.  The doctors worked in tandem and I have nothing but wonderful things to say about Dartmouth Hitchcock.

They have come so very far with childhood leukemia and I am thankful he is close to such a wonderful facility.  Hugs to you..


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## Fan2CSkr

I will be praying for Avery.


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## disfanatiks

Ann, 

Continued prayers for Avery.  I have thought about you all day. 

You are loved and so is your dear family.  

Hang in there, dear friend.  I just know little Avery is going be just fine just like his Grannie Annie    was.  Your illness prepared you to be a strength for little Avery.   

Love, 
Teri


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## escape

Sending more prayers for Avery and family, you and your mom.


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## j's m

Ann, I will keep little Avery and your whole family in my prayers.


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## LVSWL

Like you, I cannot even grasp how something can happen to anyone, much less a precious child. You and your family, your mom and Avery will be in my thoughts and prayers.


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## NeedaVacation03

Many    to your family.  I will add your family to my prayers.


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## NHAnn

We got to see Avery last night!    We drove his daddy up to Hanover and home, so he could have some time in the car each way to rest, talk, or whatever without having to drive.  

Avery looks great, the transfusions really helped his color and energy level.  
S&DIL met with a nurse coordinator as well as their oncologist while we were there.  I was with Avery during most of this, allowing S&DIL to focus on the discussions.  We were were around for bits of it but I mainly tried to engage him in showing me stuff around the floor, and games in his room.  WHata marvelous facility they have.

Avery had his marrow biopsy yesterday morning and tolerated it very well.
He will have a spinal tap today and the first chemo treatment.  
If all goes w/o a hitch he will be in the hospital for 2-3 weeks and then can be released and the continuing treatment can be outpaotient and home.

I thnak you all again for all yoru prayers and support!


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## MNSusan

So glad to hear Avery is being well cared for and treatment is beginning.  You have many many friends on this board (and another I know of) that are praying for your little guy.


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## snappy

I am glad you got to visit with Avery last night, Ann.  I am sure seeing him was a major boost for you and your DH.  How thoughtful of you to drive up so your son could relax and talk about things without concentrating on the drive.

It definitely sounds like Avery is in the right place. I really like the way they are moving full speed ahead with both tests and treatment. Looking forward to the day that you post he is home again. 

Thanks Macky Mouse for this new board.  Ann has friends all over the dis boards,  This is the perfect place to keep us all updated.  What a brilliant idea! When MinnieM3 and her husband were posting during the spring and summer, the posts would sometimes be on the GAGWTA thread and sometimes on the general Community board.  That board moves so fast, it was easy to miss their updates.

There will be sadness here but also great comfort to be had.  The name of the new board is a perfect choice.  I hope others needing care and compassion for whatever reason will find it and join in.


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## TruBlu

Ann,
I am so glad that Avery is already getting the treatment he needs.  What a blessing to have such fantastic doctors so close by!

My sweet baby will turn 5 this Friday.  Each time I hug him I think of Avery and send up extra prayers for him.

Stay strong!  
Tracey


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## safetymom

Ann, that is great that Avery is tolerating the treatments.  I am sure it was good to see him.  I will keep you all in my prayers.


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## debster812

Oh Ann.  

Great Big Giant hugs to all of you.  Sounds like you guys are in the right place, and gearing up to fight the good fight.  You'll be AMAZED at how Avery tolerates all of this.  

You know that I do a great deal of volunteering with the Jimmy Fund, and I've had the pleasure of meeting several young warrior survivors of ALL.  These kids are amazing.  

PLEASE let me know if there is anything I can do.  

Debbie


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## Cherry

Ann, I am praying for you and your family.  I am a grandmother, too, and I just can't imagine how terrible it would be for one of them to be seriously ill.  I know your heart is aching, and I am praying especially hard for you to be able to stay strong and help your son and daughter-in-law through this.  No one should have to go through this, but especially not little ones.  

Hugs to your whole family -- especially Avery.


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## scarlett873

Just wanted to add my {{{{{hugs}}}}} to the mix! You guys are in my thoughts...


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## laurabelle

Ann- I'm glad you all are in fightin' mode! I know that you'll be an incredible source of help and strength to your family...prayers for Avery and all of you!


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## Mickeyfaniam

Hi Ann
I had no idea this board or thread was even here or I'd have been here sooner. Thanks for the link! I'm glad to know you are getting answers and good treatment.
I think about this all day each day since I read it! Avery and the family have been in my prayers and will continue to be there!
Hugs Ann


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## disfanatiks

More prayers being said.  (All over Jacksonville   ) 

I am glad you were able to see him.  It sounds like things are off to a good start.


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## SSSneezy

Ann, I feel that I know you without ever seeing you.  How terrifying for your family, but how wonderful that treatment has started so quickly.  Many prayers are being said for Avery and for all of you.


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## lyeag

Keeping Avery in my prayers.


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## travellady

Avery is in my thoughts and prayers.  Worrying about a sick child is one of the worse worries there is but keep your head high and know the cure rate for this disease is quite high.


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## Mackey Mouse

Glad for the update Ann....children are just so tough and come at this with great strength......Hugs to all, keeping Avery in my prayers...


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## Mom2Ashli

Ann - You family will be in our thoughts and prayers.


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## Pea-n-Me

I'm glad things are going well, Ann. Keeping you all in my prayers.


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## disfanatiks

Prayers for Avery and you all this morning and throughout the day.


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## Amy23

I am so sorry to hear about Avery.  Like someone else had said, it is even harder to hear when it is someone that young.  I will be praying for him also.


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## MerryPoppins

Continued prayers for little Avery and all of you.  I'm thinking of you often, and each time I say another prayer.


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## NHAnn

I am very happy to report that Avery is doing very well     and I know that the prayers and postive thoughts and support of all my extended family, in RL and here on the DIS and the internet, have had an impact.

He had a spinal tap yesterday to check the spoinal fluid for concentration of the leukemia cells.  At the same time they gave him his first dose of chemo, a direct hit to the spinal fluid.  Then last night he had more IV chemo.

Today he had oral chemo, and IV meds including steroids to control side effects. And meds to help his kidney function...the chemo will kill the leukemia cells and he will expel them through his urine.  Of course THAT causes side effects too...like increased appetite.  His oncologist said that for today his job is to "play, eat, drink, and pee".   He did real well at all of those endeavors today.  

Apparently some of the adolescent patients have taken a liking to him and have shown him how to "ride" his IV tower as he makes his way around the floor.  Today his mom was pushing him around and toppled the IV pole,  2 IV bags, him, and the 7 stuffed animals along for the ride attached to the various clamps and hooks.  DIL said about 50 people came running.  He got a little air in his lines but everyone was unscathed except for DIL who said it was probably the first of many embarrassing "medical mom" moments...
so she too is drawing strength and maintaining her sense of humor   

The docs are VERY pleased with his progress thus far I thank you again so much!!


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## Mickeyfaniam

good to hear that he's doing so well Ann!

And I did read about that IV topple   

continued prayers....


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## snappy

Gosh, I bet your DIL was mortified but I love her medical mom moment.

That is one that should be published somewhere.

Hang in there mom and Ann.

Glad the little guy's prgress is on track.


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## Pea-n-Me




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## NHAnn

Well, the poor guy's chemo caught up to him last night...I guess he had headaches, nausea and vomiting during the night.       They are tweaking some of the meds to counter the side effects.  
They are still talking thought, about a possible release to home and outpatient chemo, early next week, so that is still positive!  (My guess is if he is stable and they can reasonably counter the side effects, then he is better off at home than in hospital...less germs there!!)   

many thanks again for your prayers!


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## disfanatiks

Continued prayers and love coming your way.


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## Nala56

Ann, Avery and family in my prayers tonight.  I know two girls, both were in 3rd grade when diagnosed, today both in high school with perfect health.  You would never know they had cancer, so never lose hope.  

Avery is one lucky grandchild to have you for his grandma.  I know you have been through so much of late, but your courage and strength are amazing.


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## Mrs.Milo

Still praying, hoping they get the side effects worked out so he feels better and can come home soon.


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## Mackey Mouse

Praying like a mad woman that this sweetie gets to come home and do it all out patient......he will be happier at home.. God Bless him.. 

Hugs to you Ann.. got you covered...


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## kg66

Hi Ann, I'm new to these boards, but not new to the DIS, and have been following your story of Avery. What a Grandma you are! Keep up the great work, you're the glue keeping your family together. Plus you're keeping everyone here informed so they can support you. So many of us are feeling your pain right now, and are keeping all of you in our thoughts and prayers. So sorry to hear that he's suffering from the side effects of the Chemo. Hopefully it won't take long to tweak the drugs to find the right combo for him, and he'll be home to continue his treatment. Wouldn't that be the only Christmas gift you needed? Hugs from Canada, and prayers too!
Kathy


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## Mickeyfaniam

more hugs and prayers Ann


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## snappy

Hope Avery had a better night last night, Ann.

I think you are on the right track, home would be healthier for Avery and would assist in keeping the family members together while he fights this.


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## Saphire

Continued prayers and best wishes for Avery!


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## JunieJay

I'm sorry Avery was sick the other night Ann.  Hoping he is better today and gets to come home.  Praying for him and you and your whole family every day honey!


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## disfanatiks

Continued prayers.


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## MNSusan

Oh, I DO hope Avery will be able to be at home soon.  Nothing like the comfort of your own surroundings.  And have I mentioned that I just LOVE his name?  I do!


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## NHAnn

Oh my...guess what!?!?!?

They are going to  release him...probably tomorrow afternoon!  Saturday!

They were talking Monday but are now saying tomorrow!  They are loading DS&DIL with binders and pamhlets and instructions and phone numbers...and a visting nurse will come too,and he'll be back to the hospital Tuesday for OP chemo....but they (and we) are so looking forward to him being home...

I know the prayers and support of all of you, all our wide network of extended family and friends, has given strength to Avery and his family, and will continue to do so.........


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## JunieJay

Ann!!!  That is absolutely fantastic!!     What a little trooper Avery is, I am so pleased he is doing so well.  God bless his little heart!


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## MerryPoppins

Just stopping by to see if we had word that Avery came home.  I know that being in the hospital is hard.  I'm so glad that they decided he'd do okay at home.  The holidays in the hospital are rough for grownups.  I'm sure it's even worse for a little guy.

God bless him.  I'm still praying.


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## lyeag

Wonderful news!!!!  I hope that things go smoothly with the transition to home, and that Avery continues to get stronger each day.


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## madaboutMickey

So glad to hear about Avery.  Will continue to keep him and your family in my prayers.


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## Mackey Mouse

I am so glad they are releasing him Ann.....it must be such a boost for him to come home to his family and you all will take such good care of him.. 

Hugs to you all....


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## snappy

Did Avery and company make it home yesterday, Ann?


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## NHAnn

Avery's home!
They came home late last night...his morning blood draw didn't have the levels they wanted to see, so they kept him for another transfusion and they didn't arrive home until about 9 pm.

Today was an adjustment day.  His little sisters were thrilled that mom dad AND  brother were all home.     Avery slept well last night but as today progressed seemed a bit bummed that being home does not necessarily mean he is not still sick, and still needs medicine and rest and liquids. But they had a good day.  We saw them tonight for a bit, we had done a run to Target and the grocery store to get some stuff they realized they needed as they got settled in today.  Real hugs feel good.  Still hate seeing my little guy so sick, but it was good to see them getting settled in at home.  

Coincidentally, my mom got released fromt he hospital in Massachusetts, back to the nursing home, late yesterday afternoon too.  SO...I'm trying to take it all as positive...this week will be better than last!


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## j's m

Glad to hear they're both home.

I can understand poor Avery thinking he's coming home so he's going to feel better, too.  Here's hoping this week he continues to progress and feel much better. Being home should also make it not so scary for him.

Glad to hear your mom is out of the hospital, too.  Just keep repeating, this week will be better and things are looking up.


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## Blueeyes101817

Glad to hear Avery is home!!!


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## snappy

Yippee!!   

Glad he's home!!


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## TruBlu

Ann,
I am so glad that your little sweetie got to come home.  Hopefully it will make it all a little easier for him.

Do you think it would cheer him up to get some cards in the mail?  I know that my boys would love to make one to send him.  If you think he would like it PM me.

I'm still praying for you all!
Tracey


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## ilovejack02

Ill be saying lots of prayers for Mr. Avery!! I know two young adults that had ALL as children. Im happy to report both are doing great, one is recently  married and living a great life and the other a gorgeous redhead across the street from me comes home from college for the weekend about once a month and its always a joy to see her!
Hope you folks have a great holiday and that Avery gets better and better with every passing day. 
Tell DIL that she needs to get with a support group of other parents from the hospital. My neighbor has been cancer free for prob 10 yrs now and her mother STILL is VERY CLOSE with the other mommies from the hospital.


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## NHAnn

ilovejack02...I did recommend to DIL that she investigate support groups.  I know myself from my breast cancer treatment that the support of someone who has gone through or is going through it, is an immense help.  She has a couple of individuals that have gone through this that she can contact but so far no formal "group".  But then again, she has not had time to go through all of the volumes of papers, pamphlets and so forth that the hospital gave her.  Perhaps there is info there because it IS a large regional facility and I'm sure they have programs.  So far at home she's been busy  getting organized with a big calendar and the necessary/new household supplies as well as actual care of Avery.  I'm  thinking maybe when she is at the hopstital for the Outpatient treatments she may have a little time to read and investigate the non-medical services available.  It is so nice to read of success stories like your neighbor!   

Avery did well today, he had a spinal tap and IV chemo, and another bone marrow biopsy to check his levels after 1 week of chemo treatment.  He was looking forward to Chinese food for dinner after getting home    His platelet count was a little lower than they wanted to see so he had a transfusion as well.  The low platelets put him at risk for infection, so that is a concern, with a compromised immune system.  We hope his side effects from this dose of chemo will not be as severe as last week and pass quickly.  One more step in the journey   

Thank you all again for your thougths and prayers!!


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## luvsmickeymouse

I am glad that Avery is home.  Prayers and hugs that he will get stronger every day.  Dartmouth Hitchcock is great.  You may already know this, but Irving Oil Co. is offering the gas vouchers.  We go to Dartmouth Hitchcock often and those vouchers have been a tremendous help for us.


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## debster812

Ann,

I like the sounds of his course of treatment so far.  My DH actually has an appt on Tuesday for his monthly platelet donation, so he'll be thinking of Avery while he's on the aphoresis machine.  

You know I do a good amount of volunteering with the Jimmy Fund.  Just say the word, and I can drop an email to one of my contacts, and get you guys in touch with some support groups.  Don't hesitate, OK?  

You're in our thoughts and prayers here. 

Debbie


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## Mickeyfaniam

Continued prayers and Hugs Ann!!


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## Saphire

Continued prayers for Avery that his treatment will be completely effective and that he will stay strong as he fights. He has many people lifting him up in prayer and I hope you can feel our support and very best wishes!


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## NHAnn

Well....we had some good and some not-so good news today.  The not-so good was that Avery had a little nausea/vomiting last night as a result of Tuesday's chemo, went to bed early, but awoke very early this morning with a lot of bone pain, in his backa dn ribs and then his hands.  He was also running a little fever which they needed to watch, it got to within a degree of the 100.5 that would require him to be back in the hospital for anitbiotics and observation.  Fortunately the fever stayed on the low side of the trigger point and they got a prescription called in for tylenol with codiene.  The best news today though was the results of his bone marrow and spinal fluid analyses Tuesday.  The spinal is still all clear and the bone marrow numbers dropped significantly in the one week of chemo!      From 80% to 4%!!  5% or under is technically considered remission so that is great news.  He will still have 2 more weeks of this chemo but can skip the spinal tap and bone marrow draw next week. If thinsg maintain or improve further then he switches after the 3 weeks to a different kind of chemo to target any leukemia "hiding" in other parts of the body (other than the bone marrow or blood).   His immune system is not in good shape, so they are very concerned about exposure to bacterial/viral infections.
But in this day by day battle, I think think today's results are overall ont he plus side for my brave little guy!!  Thanks again for all your thougths and prayers!!


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## kg66

Ann, that's wonderful news! If your precious little guy doesn't have to go through the spinal tap and the bone marrow aspiration this coming week that's great! The less pain the better for children suffering any horrible disease! Thanks for sharing your news. Hopefully the nausea/vomitting won't last. And if he changes the chemo drugs that will be the end of the side effects from the chemo. Great news, thanks for sharing. We'll keep the prayers coming.  Kathy


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## NHAnn

This has not been a good day for my little guy.

He is back at Dartmouth.  He was in a lot of pain and still unable to keep anyting down and his temp actually dropped. below normal...
this afternoon they said to bring him in.  DIL took him up and DSS is home with the girls.
He maybe has some kind of viral or bacterial infection, maybe his kidneys, or maybe some kind of seizure. He's in pedi ICU.  There seems to be some uncertainty as to what is actually going on, as this is not "normal" chemo side effects.  So frightening.


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## lyeag

I am so sorry to hear he is back at the hospital.  I will say an extra prayer that they quickly find out what is going on and get him back home.


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## travellady

My heart sank when I read the latest Avery update.  I will say a prayer for him tonight.


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## snappy

Oh, Ann, I am so sorry Avery is back in the hospital and having these problems.  Hoping the docs can get this under control ASAP.

Continuing to pray for Avery here.


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## NHAnn

Thank you for your prayers and thoughts.  It was a very rough night, for Avery and DIL at DHMC and for all of us at home. The word this morning is they seem to think the infection is in his PICC line or near where it enters his body.  They are getting a certai bacteria when they take blood through te line. They have analyzed the bacteria and are giving him a targeted antibiotic.  They hydrated him and gave him his other meds which he could not keep down yesterday.  They took blood ebery 2 hours through the night, and the poor kid was hallucinating for awhile too though that has subsided.  His potassium levels are dropping and sodium rising which I guess are good signs.  He is finally sleeping after being up since 1:00 am Friday morning.


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## safetymom

I am sorry to hear that he had a rough night.  I sure hope they get the infection under control and he can rest and start feeling better.


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## snappy

It is very hard to hear what Avery and your family is going through. I hope his sleep is healing for him. 

I am relieved the docs sound like they are onto where the infection originates.
I cannot imagine how hard it was for your DIL to see Avery in this distress. I am glad they were watching him so closely at home and got him to the hospital when they did.

Time for more good news.


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## Pea-n-Me

Wow, Ann, catching up. First good news, then bad. My thoughts and prayers are with you all. I hope Avery's feeling better soon.


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## j's m

Ann, more prayers for Avery and your family. I hope the antibiotic works soon, and he can come back home.


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## TruBlu

Ann,
Avery was on my mind a lot this weekend.  I've been praying for your sweet boy.

Tracey


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## NHAnn

I don't have good news today.

Poor Avery is just wracked with infections and complications.  They have called DS to come to the hospital to be with DIL and Avery.  
They were flat out told that he might not make it through this.

I'm really having trouble praying to a God who could let this happen...but on my SIL's advice I'm trying to connect in my mind directly to Avery and tell him all the reasons why he should fight to stay here with us.


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## Nala56

I'm so sorry Avery is not doing well.  I'll double my prayers for the little guy and for you and your family.  I don't understand why little kids get sick, it just doesn't make sense.  Please know you are in my thoughts.


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## Pea-n-Me

Ann, my mother and I are saying this prayer for Avery. I'm posting it here for anyone else who might like to say it also.   



> *Prayer to St. Jude for our Child who is Sick*
> 
> St. Jude, the glorious apostle faithful servant and friend of Jesus, the patron of hopeless cases of things despaired of, pray for our child who is sick and so miserable. Make use we implore you of this particular privilege accorded to you, to bring visible and speedy help where help is almost despaired of. Come to our assistance in this great time of need, that I may receive the consolations and succor of Heaven in all my necessities, tribulations and sufferings, particularly to help our child to get better from his illness and to give him good health and to guide his path, and that we may bless God with you and all the elect forever. I promise you, O Blessed St. Jude, to be ever mindful of this great favor, and I will never cease to honor you as my special and powerful patron and to do all in my power to encourage devotion to you. Amen.


----------



## snappy

Ann, I am devestated that Avery is so sick.  I will say the wonderful pryer Linda posted many times tonight for Avery and your family.  I am with you in spirit.

Your SIL's advice to concentrate on Avery is good, very constructive at this moment.


----------



## NHAnn

Thank you for posting that Linda... it helped me to focus a little.
I thank you all for your kindness and prayers.


----------



## Saphire

I am so sorry about this recent news. How difficult this must be for all of you.   I am beseeching God to rid Avery's body of that infection and to restore his health.


----------



## disfanatiks

If there was any way that I could take the pain that you are feeling away, please know that I would.    

Many many prayers are being lifted for little Avery and for all of you.  
Special prayers are in my heart and will be lifted up to God for you, dear friend.  

I know right now that it seems like God has abandoned Avery and your family, but please know He has not.  I just believe this with all that I am.   I do not understand why this has happened to Avery, but I am just praying that God's grace and mercy will be apparent in these next few days.   

George and I love you and John dearly and we are hurting along with you.


----------



## JunieJay

Ann, I am just devastated for your family.  I'm praying honey.  I just said a prayer to St. Jude as well.  Keep us posted as you can.


----------



## safetymom

Ann, I am so sorry he has to suffer like this.  Sending prayers and hugs for all of you.


----------



## MerryPoppins

I'm going to pass the word to everyone close to me, to pray hard and often for Avery and your whole family.  I'm so sorry he's not doing better.  

Just remember, God doesn't send trials our way.  They come on their own.  He just uses them to help us grow.  He'll be there to hold you in His arms through the good and the bad... and Avery too.

Please keep us informed.  I'll be thinking of you.


----------



## Mackey Mouse

I just got home from taking Tom to his oncologist on the Cape and was catching up on Avery.. we will be starting chemo closer to home. 

I have just said the prayer to St. Jude and am printing it out to keep by my computer....I wish I had more faith, you know what I mean.. like some of you have this great faith, (my Tommy has this kind of faith).....I am sitting here teary eyed and saying why??   I do not understand this little boy having to suffer..  

Ann, I will continue to pray for Avery's recovery....I have Tom on the case too, please know we are here for you and keep us in the loop.   

Hugs to you, keep strong....I can only imagine what you are feeling right now, my heart aches..


----------



## Mickeyfaniam

I am so sorry Ann that Avery isn't doing well! I can't even find the words to express myself. But do know that we are thinking of you here & Avery and praying


----------



## Mickey's sunshine

Ann, I am at a loss as what to say but I do want you to know I am saying extra prayers and good thoughts.  I am sending out truck loads of good vibes, prayers, good thoughts...etc....Avery's way and to you and your family.   

You fight this little man, you have sisters to pick on for many many years to come.   You have to date crazy girls and then get married to a sweet one.  You hang in there Avery!!!!!   

Love you Ann, please let me/us know if we can do anything else for you.


----------



## Dan Murphy

Ann, Christine just let me know how Avery is doing. 's    Your little grandson has been in my prayers since learning of his illness some time back.  He will overcome this current setback. 

Ann, Linda, I too have a real devotion and belief in St Jude, over 35 years (long story).  The tougher the hurdles the more St Jude seems to intercede.  I have said his prayer many times, and now again.  Please do not despair, have hope.

Hugs,

Dan


----------



## annrae

Dear Ann:  I am so saddened to hear about Avery not doing too well.  I hope your family will be strenghtened by all the prayers being sent your way, blessed with love and encouraged with hope.  Barbara


----------



## Mrs.Milo

Prayers for Avery and all his family


----------



## Mackey Mouse

First place I look when I come on......I do hope that Avery had a better night and is doing better this morning..   I am continuing my prayers and will wait to hear from Ann.. 

Good morning everyone who is following this post with lots of prayers for Avery.. 

Hugs to Avery.....


----------



## NHAnn

I have no news this morning.
I will post as soon as I know anything.

Thank you all for the prayers and thoughts....it is uplifting and strength-giving.


----------



## Mickeyfaniam

Avery is on my mind throughout the day Ann!
Prayers continued....


----------



## TruBlu

Oh Ann,
I am so sad to read this news today.  I am going to call my church right now and get Avery on our prayer list.  Stay strong and know that all your friends here are praying!

-Tracey


----------



## Mickey's sunshine

Still praying.....  hope everyone was able to get some needed rest.   Stay strong little man.      

We are here for you Ann!


----------



## Pea-n-Me

No news is good news, Ann.   

I felt so badly yesterday, imagining how you must be feeling. Please don't lose hope or faith. Here's something else that might help you focus: during the night I pictured Avery wrapped safely in the arms of the Blessed Mother and your whole family bathed in God's healing light. Lots and lots of love surrounding you all. Try to find a quiet place to go even for a few minutes and concentrate on something like this. The relaxing and healing effects can last throughout the day. (Sorry it's not much, but it's at least a little something to grasp onto.)

I'm hoping things start to look better for Avery today. All of you (and your caregivers) are very much in my thoughts and prayers today.


----------



## Pea-n-Me

Dan Murphy said:
			
		

> Ann, Linda, I too have a real devotion and belief in St Jude, over 35 years (long story). The tougher the hurdles the more St Jude seems to intercede. I have said his prayer many times, and now again.


I would like to hear that story sometime, Dan. My mother is also a strong believer in the powers of St. Jude, St. Anthony and others. She still sits with her rosary and ancient box of prayer cards every night and prays. I tell her she must have a direct line because it seems her prayers are almost always answered.


----------



## TruBlu

Ann,
An email just went out to everyone on the prayer chain at my church.  We are praying.

-Tracey


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## NHAnn

Thank you all.
There is little to report since last night, as Linda says though I suppose no news is good news.  Things have not gotten any worse and Avery is quiet and comfortable today.  There is a terrible infection in his system though, and so hard to fight it with his immune system so compromised from the leukemia and start of chemo. They are still awaiting cultures as to what exactly it is but have been told it doesn't really matter at this point, all the alternatives are life threatening in his current state.  There is always hope, and I'm praying for his immune system to kick into gear and battle back from this.

I thank you all from my heart for your prayers for Avery and my family, and your kindness to me.


----------



## CookieGVB

Ann, I'm so, so sorry that you are going through this with little Avery.  

This is a powerful place for prayers...I've seen it over and over again.  Avery will come through this. Hang in there.


----------



## MerryPoppins

I've lined up an army of prayer warriors.  I told six friends last night, who in turn passed the word on to some of their friends.  We're all praying without ceasing.  My mother listened to the story, prayed and passed on the word.  Then she called me back.  She said she had a real feeling of peace and believes that Avery will pull through this.  I found that comforting and thought I'd share that with you.

I once read an account of a near-death experience where the person "saw" prayers going up to heaven.  She said each prayer was like a beam of light shining up.  Some were strong beams and others were smaller.  Know that heaven is being illuminated with many, bright beams of light for Avery.

Please let us know if you hear anything.


----------



## safetymom

Ann, we saw a miracle with my father from the power of prayer.  I will pray that you all start to see an improvement with Avery.


----------



## lyeag

Continued prayers for Avery.


----------



## Mackey Mouse

Hugs and prayers to Avery.....c'mon now beat that infection, you can do it.  

I know how hard it is though when their immune system is compromised, but Avery you can do it.. 

Hugs to you Ann...hang in there.....we are a powerful praying group.


----------



## NHAnn

No further news at this point.

The prayer volume from my extended DIS family alone is absolutely amazing.....there are individuals and groups all over the US and Canada praying for him.


----------



## disfanatiks

for all of you today.  

More prayers being said each and every hour.  The scripture on mind throughout last night and today was from I Thessalonians 5:17.  "Pray without ceasing..."  

And this is just what we have been doing for Little Avery. 

My co-worker Gwen said to me today when I gave her an update..."Avery is our superhero and we will focus on that and his healing."  Right there in the middle of the department we shared a hug and a tear and hope.  And the beauty of that is until later today she had never even seen a picture of little Avery.  He is touching so many people.


----------



## NHAnn

Well...I have good news, in that I have no bad news!   
We just talked to both Avery's dad and mom.  It was wonderful to talk to my DIL, it has been days.  She is an amazing young woman.  SHe's asking ME if _I'm_ OK!!  And she extends her thanks and awe at all the prayers and thoughts and kindness being shown to our family.

Avery's condition is still grave, but there are some positives.  The infection seems to not be spreading as rapidly.  His kidney functioning is improved, the liver not so much but still better than yesterday. He is resting more comfortably depsite all the tubes and such.  He watched a little TV today and commented about SpongeBob's toasted marshmallows looking like cotton balls.  The fact that he spoke about it with the tube down his throat amazed his daddy more than the comment itself.
He also was concerned that both DS and DIL were there with him ...and said "If you are both here, who is taking care of my sisters?"  He was relieved to hear that his Nana, DIL's mom, was with them.  

DIL says Avery needs some of his sister Delaney's spunk for this battle, she is such a spitfire and he is so laid back.  I told DIL to tell him that he needs to go to WDW and show Kadie the ropes since she wasn't born when we went a couple of years ago.  DIL said when we get past this we are ALL going to WDW for a MONTH!!   

SO, his condition is still grave, but they are talking about the next few days being critical, as opposed to yesterday when they they didn't seem to be offering much hope for there even being a next few days.  

So we shall continue to pray and send Avery our strength and positive energy...and again I thank you all so much for yoru support


----------



## Pea-n-Me

> His kidney functioning is improved


Excellent news, Ann. He's moving in the right direction.


----------



## Jake & Crew

Just found your thread, catching up and praying through it.  I felt the power of prayer, literally felt a peace wash over me, with my battle last year.  I am passing that peace and strength to Avery, you, S & DIL, the sisters, the nana, your husband !  You all need and have it.  

Most of all push that anger away, it drains too much all positive energy straight to little Avery, he needs all the power he can get!!!!


----------



## Mackey Mouse

So glad to hear the news Ann, it is a step in the right direction.    And the praying continues for Avery at my house and everyone else here posting on the thread.   It is a good thing...

Now Ann, take some time for you today, please.   Put your feet up or go take a brisk walk or even better, buy yourself something nice that will make you happy.. I am worried about you too...

Hugs to you guys....this is hard enough to do under normal circumstances, but around the Holidays it can be even tougher.....take care of yourself and your immediately family, we have Avery on full time praying care here...


----------



## Dan Murphy

Uplifting and upbeat news, Ann.  Good to hear.  Continued prayers, good wishes for Avery, and all of you. 's


----------



## Mickey's sunshine

Good Morning Ann.   Some encouraging news about the kidneys!   I am continuing to pray for Avery.   I agree with Marsha, try to take a little time for you today.  I bet you and hubby are stressed beyond the max.  

Ok Mr. Avery, you keep fighting this, get strong.   

prayers, good thoughts and love coming your way.  {{{{hugs}}}}}


----------



## safetymom

Ann, I am glad to hear that the news is better today.  I agree with the others, take some time for yourself today.  You need to take care of you while you are taking care of others.


----------



## snappy

Very glad to hear good news after all the scary info from the weekend.  I hope the kidneys continue to improve and that the liver turns the corner as well. 

Thanks so much for posting the news.  I feel like I am in this fight with your family, Ann. I think of you guys throughout the day.


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## MerryPoppins

I'm so glad to see some good news!  I know it's a small step, but it's a small step in the right direction.  

I continue to pray and I'll call my friends and family that are praying  with the latest update.  Keep us informed.


----------



## Pea-n-Me

How's the little guy doing today, Ann?


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## Mickeyfaniam

glad to hear the good news about the kidneys improving. More good wishes & prayers coming Avery's was as well as the whole family!!


----------



## annrae

Hi Ann:  I hope things will improve even more today for Avery.  You are a strong support for your DS and DIL but don't forget about ANN.  It is very difficult to have faith sometime but faith can place a candle in the darkest night.  Barbara


----------



## SideshowBob

Also hoping every day, a bit better, until ALL better.

Thoughts and prayers with you ALL.


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## disfanatiks

Continued prayers and hugs.


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## TruBlu

Just checking in on little Avery.  I hope today is a better day.  I'm still praying for a Christmas miracle!!!


----------



## NHAnn

Today has been a good day, in that there have been no changes.  

The docs continue to express concern that even if his body develops some white blood cells to fight the infection itself (instead of just keeping it from further spread with antibiotics), that effort by his body can result in strain on his ability to breathe, heart function, etc.    

So we will continue to pray for strength and energy.

I have told them that there is literally an army of well wishers, prayer groups etc, all over the continent and beyond that are sending their positive healing energy.  They are humbled and grateful.


----------



## safetymom

Thank you for the update.  I will continue to pray for all of you.


----------



## Mackey Mouse

Ann... hugs to you and thanks for the update... 

We are still praying here, c'mon Avery fight those nasty bad guys....

Interestingly Tom's oncologist referred to the cancer cells as terrorists in your body hiding out and attacking when you least expect it with no warning....grrrrrrrrrr


----------



## Mackey Mouse

OK. just checking and yes I was up at 5:00am, not sleeping well. 

Anyway, Ann.. prayers for Avery this morning and for you too.. 

How did he do overnight?


----------



## safetymom

Ann, I am hoping that there is some improvement today.  

Mackey, remember to take care of yourself!


----------



## JunieJay

Still praying Ann.  Drew asks me every morning how Avery is doing.  When Avery gets better you can tell him about all the new friends he has.


----------



## NHAnn

No word this morning yet...usually they wait until mid-morning after the doctor rounds to let us know how he's doing.
He had a lot of fluid build up yesterday and needed a little more pain med to stay comfortable but all the "number" and "count" stuff stayed stable. 

As for me....I had a dentist appt yesterday afternoon and have to go back today to have work started on 3, yep THREE crowns  Heck only 1 tooth was bothering me     It is interesting though how perspective changes things...normally I freak at the thoguht of any dental work beyond a cleaning  - but ..."whatever"


----------



## safetymom

Ann, he is one adorable little boy.  I hope you get your Christmas wish.


----------



## mbb

NHAnn said:
			
		

> ....So we will continue to pray for strength and energy.
> 
> I have told them that there is literally an army of well wishers, prayer groups etc, all over the continent and beyond that are sending their positive healing energy......



East coast of Canada...keeping all of you in our thoughts and prayers


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## Mickeyfaniam

checking in on Avery.... hope he's feeling better today. The picture is adorable Ann   
continued prayers......


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## Saphire

What a sweet picture.   Continued fervent prayer from my corner of the world for this precious little boy.


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## WebmasterMaryJo

Hi Ann, 

Mackey Mouse just told me about little Avery.  I will include him in my prayers, and ask that our prayer group at work add him, too.

Many special blessings to you and yours from Southern California.


----------



## WebmasterMaryJo

Hi again,

Here is the response from my coworker Dee Dee (who has been given the special gift of beautiful prayers)

Yes MaryJo, I will send it to our prayer group and I will keep little Avery and his family lifted up in prayer.
"May the Lord do a mighty healing work in Avery's little body"


----------



## Mackey Mouse

Love ya MJ... 

Thanks to those who are praying and sending the word out for more prayers for Avery...

Ann, update when you can, we are here for you..


----------



## Blueeyes101817

Ann-
The picture in your sig is adorable..i hope you get your christmas wish...know that Avery and your family is in my prayers


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## NHAnn

A basically uneventful night last night...and this is OK.  
Doctors rounds this morning indicate teeny tiny changes in the  right direction in the white blood cells, but they warn that if/when the WBC do gear up to do battle with the infection it will cause increased pain ...and breathing difficulty since there is a lot of infection in the chest wall.   But they're taking it a step at a time and continuing to focus on the positive. 
I am in awe of DIL and DS in their strength in coping with this....

thanks again for your prayers and good wishes


----------



## safetymom

Little steps in the right direction is great.  I am glad to hear it.


----------



## TruBlu

Ann,
I am so glad that he is moving in the right direction.  We'll be praying until he is home with his sisters again!

That is the sweetest picture I've ever seen!  It is so nice to have an image of him in my mind as I pray for him.  I sure would love to give him a big hug and a kiss!!!

-Tracey


----------



## Mackey Mouse

I am so glad to put his sweet face with my prayers......

That update does sound encouraging, although I do hate the pain part.....I hate when they are in pain...including my own sweetie.. 

Anyhow, still praying, update when you can... this is a powerful thread..


----------



## luvwinnie

New to this particular board...adding my prayers for Avery. He is adorable.


----------



## Towncrier

Prayers said for Avery and for you Ann. I wasn't even aware that this board existed until I saw one of your posts on the Community Board.


----------



## Mickey's sunshine

Still praying here Ann.     

Avery, keep fighting little man.


----------



## disfanatiks

Continued prayers.


----------



## NHAnn

That pic, as cute as it is, is from 4 years ago  
Here is a more recent one...last Easter!






We had some more hopeful news today, that the good type of WBC are still slowly increasing which means his immune system is trying to kick into gear. This could bring some new concerns of course with an increase in pain levels, but we are trying very hard to focus on just the good news and continue to send Avery only healing positive thoughts and prayers!!

Thank you again for all your continued prayers and support, it is so deeply appreciated by my whole family.


----------



## snappy

It is so heart warming to hear a bit of good news.  I am focusing on sending good vibes to Avery tonight so he can sleep without pain.

I agree with you, your son and DIL are amazing.  It must be taking every ounce of their strength.

It sounds like they have an ever growing cheering squad around the world.  I hope they continue to feel the prayers, hopes and well-wishes.

Thanks for posting the pictures.  He is truly a beautiful child.


----------



## TruBlu

Ann,
He is such a handsome little man!!!  I am so happy that he is still moving in the right direction.  I sent an update out to the prayer chain at my church today.  We are all still praying!  

Tracey


----------



## MerryPoppins

I just checked in tonight to see if you'd heard anything.  I'm focusing on the good news and praying for him to have the strength to power through the pain.  With all our prayers behind him he can do this!  He's got a terrific support group!

Thanks for the picture.  It helps me to "see" who I am praying for.  Now I have a face to attatch to the name.  He's darling!  I'll keep praying and I'll pass on the latest update.


----------



## Shellie722

Oh, Ann , he is adorable! I didn't know this board was even here til I saw you mention it on another thread or I would have been here sooner. I am glad for a bit of good news tonight and will continue to keep Avery as well as your whole family in my thoughts and prayers. (((HUGS)))


----------



## Mackey Mouse

Cute baby, adorable boy.....you all make beautiful children up there in New Hampshire... 

We need to get that smile back on that face and as fast as we can and without too much pain... So let's go Avery, you show them how tough New Englanders are and kick those bad guys out of your body.......

Hugs to you Ann and we are praying here... thanks for keeping us updated.  I am so happy to see some of our original Disers coming to this thread to support Ann and her family.. 

Go Avery!!!!!!!!


----------



## Pea-n-Me

Keeping that cutie in my thoughts and prayers.


----------



## snappy

Sending more prayers from down here in Louisiana. Started at 5 am.

Go get 'em, Avery!!!


----------



## Mickeyfaniam

very handsome boy Ann   
thanks for sharing that picture!!

continued prayers...


----------



## NHAnn

Firday morning report:  there was more pain/restlessness issues during the night but after 3 am Avery slept better and this morning's labs showed some more positive results...the neutrofils (sp?) which are the infection fighting white blood cells have gone from 50 Tues to 150 yesterday to 300 this morning!!     This is excellent as far as infection fighting, but the resulting swelling and pain issues are likely to increase as well.  
What a fighter he is, and what power we are seeing with all the prayers and positive energy he's getting!!


----------



## Saphire

That is good news today, Ann. Will be praying for his pain and swelling to stay under control. Hang in there!


----------



## lyeag

I have been busy doing all sorts of last minute things before we leave tomorrow, but I wanted to check in to see if there were any updates.  I am so thrilled he is improving!  I will continue to keep him and the whole family in my prayers.

Also Ann, if you think it might brighten his day, I would be more than willing to send him a postcard from Mickey.  PM me sometime today with an address, and I will shoot one out early next week so he will get it by Christmas.  

Laura


----------



## MerryPoppins

He's a fighter!  Way to go Avery!    

What great news.  I'll keep praying for those numbers to keep creeping in the right direction and for pain and swelling to be at a minimum.


----------



## Mackey Mouse

I am praying for infection fighting, but am also praying no pain as well.....I hate the pain part of it, it breaks my heart.  

Hugs Ann, you take care of you too.....more prayers coming from Cape Cod..


----------



## Pea-n-Me




----------



## NHAnn

uuughh...the roller coaster continues...
this afternoon Avery was taken to have his central line removed and it will be checked if this is where one of his pesky infections ( a yeast fungus?) has originated, it has not responded to the anti-fungal meds he's been getting.  They will put in 2 PIC lines in his arm again, which confuses me since they thought maybe the orginal PIC line was where an infection took hold when he landed back there last weekend.   

Apparently the new lines can't be used for several hours after insertion...meaning no IV meds, dangerous in his fragile state...I am just praying so hard he fights through this...


----------



## disfanatiks

We have been praying since 2:15pm and will continue.


----------



## Mackey Mouse

Ok....praying hard here....I know that infection can get in through those lines...darn it all, that is how Tom ended up with cellulitis, of course, they will not admit that but other nurses have told me that is how bacteria gets in.. 

So, if they put in new pic lines, they cannot use it right away..  Can he take medication by mouth because they do have to get the meds, right?  

Oh Ann.. hugs to you, and to Avery, please God take care of him....get him off this rollercoaster and back to some normalcy so that he can fight this disease.


----------



## annrae

Just praying so hard for all of you tonight - I have a feeling that Avery is going to turn the well-corner very soon.  It is heartbreaking to see a child so ill when we as mothers, grandmothers are supposed to make everything "better" for our little ones.  Barbara


----------



## MerryPoppins

I'm praying even harder.  Hang in there Avery.  You can beat this!


----------



## Blueeyes101817

You guys are still in my prayers..you can beat this Avery!


----------



## snappy

I am so rooting for Avery's little body to fight that infection.

I hope he and his parents get a break soon and the tide turns with the infection so they can breathe easier.

Like Merry, I find the pictures help me focus my prayers on that little guy. It is shocking that a child who looks so very healthy in those pictures could be dealing with this now.


----------



## NHAnn

His procedure went well and we are hoping for an uneventful, restful night.     It will take about 30 hours, which is this time tomorrow night, for them to determine whether the yeast thing was in the central line (that would be good since it's now out) or in his blood system itself (not good because the anti-fungal meds don't seem to be working)

Marsha I do not know how they handled meds for the few hours he couldn't use the new lines   

THanks again everyone for your prayers and thoughts


----------



## Mackey Mouse

God love this sweet boy.....thanks Ann for keeping us updated...this is the first place I come each morning and before I go to bed.   Praying for Avery tonight as I fall asleep and hope that he has a good night with no problems.   Ann, I hope you are sleeping too, stress is not good for any of us, so please do try to rest when you can and eat too....

Hugs to you all and night..


----------



## disfanatiks

Ann, 

I am thinking of you early this morning and hope that you had a restful night.  Praying today for positive news and a sense of peace and strength for you all today and each day that comes.  We are holding you all close in our prayers and our hearts and sending only positive thoughts your way.  Even in our evening dinner prayers, Savannah has added Avery.  Although many miles separate us, please know that we are with you in spirit.  

 Teri


----------



## NHAnn

Today we have a small u-haul and a few helpers coming to move our larger furniture....yes in all this craziness we are moving across town to our new home....sort of piecemeal since it is just across town.  (thank goodness   )

No news is good news throughout the night!! Usually it is mid-late morning when we get an update after morning rounds so I will update as soon as I can.  

Again we are so uplifted by the support from you all!!


----------



## Dan Murphy

Such darn cute pictures, Ann, both the older one and the new one.  What a handsome little guy.  

Good to hear the updates; prayers and good wishes continue for Avery, Ann.  

Take things easy on yourselves with all the work stuff.


----------



## safetymom

Ann, looking forward to positive news today.  Wow, you are one strong lady moving in the midst of this.  Sending


----------



## Mackey Mouse

Checking in to see how Avery is doing.....update us when you can and try not to stress yourself about the move, it will get done....

Hugs all around and prayers this am for Avery....hope you had a good night and are on the mend today..


----------



## NHAnn

Avery has begun to get breathing assistance froma respirator (PAP) today.
 A doc told them DS and DIL this morning that in his current condition they could be looking at this critical stage being at least 2 weeks- maybe as long as 6 weeks, and they are feeling rather overwhelmed at managing it all....Avery's illness, the girls, implications for work and life in general.   

So it all makes trying to manage a move not very important at all    and we are all just taking it moment by moment.

A brain-addled faux pas on my part just happened...DD calls from school awhile ago... and in my head for the last 2 weeks I have had her coming home for Xmas breaks on Monday, the 18th. (she has her car ar school and it is under an hour away.)   SO anyway, she said she was getting dropped off at the student parking lot to get her car and bring it back to the dorm.  So me thinking she's headed out off campus later to the mall or movie or dinner says.."Oh where are you going?"   Uuuuummmm  HELLOO mom, I'm coming home for break!!  OOPS!       Guess no favorite home-cooked meal was planned...LOL


----------



## safetymom

Oh my goodness.  My heart is breaking for all of you.  Hugs to all of you.  More prayers on the way.


----------



## Mickeyfaniam

NHAnn said:
			
		

> A brain-addled faux pas on my part just happened...DD calls from school awhile ago... and in my head for the last 2 weeks I have had her coming home for Xmas breaks on Monday, the 18th. (she has her car ar school and it is under an hour away.)   SO anyway, she said she was getting dropped off at the student parking lot to get her car and bring it back to the dorm.  So me thinking she's headed out off campus later to the mall or movie or dinner says.."Oh where are you going?"   Uuuuummmm  HELLOO mom, I'm coming home for break!!  OOPS!       Guess no favorite home-cooked meal was planned...LOL


Thats funny Ann...but I'm sure you're forgiven   

Continued prayers for Avery......


----------



## Mackey Mouse

Checking in on Avery.....read the update and thought to myself how do you carry on with the everyday of it and maintain your job and the rest of your family... God Bless your daughter and her husband, they must be so worn out.   Hugs to all and most especially to Avery, lots of prayers and healing hugs coming your way.. 

I am with Safetymom.. my heart is breaking here too.. Ann, hang in there, you are one strong woman and I am praying for you too...


----------



## j's m

Ann, I'll continue to pray for Avery to fight the infection. He is such a beautiful boy, it's so hard to look at that face and hear what he's going through.  Just keep the faith that all our prayers will work.


----------



## Mrs.Milo

Ann, continued prayers for Avery and for strength for your DS & DIL, and 2 little sisters @ home.


----------



## Mackey Mouse

Checking in this Sunday Morning.. Avery is on my mind quite a bit.. I do hope he had a peaceful night and that the doctors are doing everything possible to help this sweetie.. 

Ann, hope you too got some sleep......Grandmothers need their rest so that they hold everyone together.....

Update when you can, I know usually late in the afternoon.. prayers going up now...


----------



## lyeag

Checking in.  We are in Mobile, AL. , where we spent the night.  I said many prayers for Avery in the car.  He is in my thoughts and prayers.  I will keep checking for updates.  Take care of yourself with being pulled in so many directions.


----------



## NHAnn

Good morning!
DH spoke to DS around dinnertime, he sounded much better than when they spoke in the morning.  DS and DIL were upset at the thought of the respirator at first, but Avery seems more comfortable with it assisting his breathing...and they were hoping all three could get a little mroe rest last night without the constant worry and monitoring of the balance between pain relief meds causing shallow respiration.  

DH and Megster and I had a nice dinner together at the new TGIFridays near here.  We then braved the Xmas shopping crowds and went to the Mall where I used some coupons at JCPenney and Linens N Things and got excellent deals on bedding for our new king-sized bed.  (I'd had sticker shock earlier when looking at king bedding  ) Nothing like a real good bargain to lift the spirits.  Then we got a good night's sleep....DD is actually STILL in bed...I could see the from the light from her room that her laptop was still on after midnight when I went to sleep....she's still on "dorm hours" of course 

So...here's hoping to an uneventful Sunday for little Avery, maybe some improvements in labs after a good night's rest....


----------



## safetymom

I am glad to hear he had a restful night.  I am sure it felt good to you to go out for awhile.  I am keeping up the prayers and hoping for continued good news.


----------



## Mickeyfaniam

Ann, as I read your post, I am in absolute awe of how the parents & family who have to deal with all of this, do so .....
continued prayers for the little guy and for his parents & famliy! My heart really goes out to them


----------



## Mackey Mouse

Ann.. I love reading when he is doing better.   I know they were worried about the respirator, I have to admit it caused me to pause, but the alternative of shallow breathing from meds is not good... I am glad he is breathing better and got some sleep... once he is on the mend, they will get it out of there and he will do fine.. I feel it..


----------



## disfanatiks

Thank you for the update.  I hope that they were able to get some much needed rest.  

Continued prayers.


----------



## NHAnn

On balance, very good report this morning...the neutrofils dramatically increased overnight and all his other labs look very good as well.  The only downside is the blood cultures would indicate the yeast thing is systemic in his blood, not what they were hoping (hope was it was in the central line or one concentrated "ball" in his body somewhere but no sign of that in all the scans and such).  However, on balance ....a pretty much uninterrupted night of rest for all three of them     and his little body seems to be getting in gear to do more battle.  
Hoping for an uneventful day today......


----------



## Mackey Mouse

OK.. so systemic in his blood....what do they do for that?  Hit it with stronger antibiotics????  I am learning here as well as praying.   

I am glad that the other labs look good and hopefully we can get rid of this yeast thing....is this common?? 

Keep the faith and more prayers going out there for Avery..   Ann, you are doing great, thanks for keeping us in the loop.


----------



## NHAnn

Mackey Mouse said:
			
		

> OK.. so systemic in his blood....what do they do for that?  Hit it with stronger antibiotics????  I am learning here as well as praying.


MY understanding is they hit it with anti-fungal meds as opposed to antibiotics.
 His little body has so much going on that its slowly building resources are probably confused as to where to focus! (that's MY "md" opinion --"mom doctor")   

Many many thanks Marsha ,and all of you , for the  prayers and support!!


----------



## MerryPoppins

I added Avery to our prayers at church today, as well.  And I keep sending him messages to hang in there.  I'm glad his little warrior cells are kicking in.  I'm starting to feel like a cheerleader.    Go Avery, go!    I'm going to send a small package to your house next week for him.  Maybe as he starts feeling better it will lift his spirits.


----------



## TruBlu

Hi Ann,
I have a message for your from DS5 (he is sitting beside me dictating)....
I love Avery, and I'm going to pray for him every day!  I want him to be really, really happy.  I hope he will be better soon.  And I think he would like this   

Love,
Cam

WE'RE STILL PRAYING!!!!!


----------



## Blueeyes101817

Thank you for keeping us updated..your family is in my prayers still..i check this thread several times a day!


----------



## Saphire

More prayers for Avery...Please God, heal this little child. May tomorrow be a good day for him.


----------



## NHAnn

Another night of some healing and rest....his lab numbers look very good this morning     and he and his parents had good rest last night

thanks again for the continued prayers!!


----------



## TruBlu

Ann,
I am so glad for the positive news this morning!!!  Keep fighting sweet boy!!!


----------



## safetymom

Ann, that is wonderful news.


----------



## Mackey Mouse

Hi Ann.. 

Love hearing the lab numbers are good.. 

Avery, you are doing great, buddy, keep up the good work.. 

Of course, more prayers each day..


----------



## Towncrier

Continued prayers for continued improvements for Avery. Prayers too for the caregivers that they may find the right treatments to cure your precious little man.


----------



## NancyIL

Ann, I've been following this thread, and  want you to know that Avery and your family are in my thoughts and prayers.


----------



## Blueeyes101817

im glad to hear some positive news this morning!!! hope for some more g ood news for your family!


----------



## NHAnn

TruBlu...what a little sweetie your Cam is!! 

Hi Nancy, nice to "see" you and thank you!

And to all the rest of you too of course.

I think we are in a "no news is good news" phase but DIL said today the docs keep saying he will be "sicker"    as the white blood cells multiply and swarm to attack all the bad guys.  I'm going to  take the attitude that they keep giving very very worst case scenarios and send even more prayers and positive energy out for his recovery!!


----------



## JunieJay

TruBlu said:
			
		

> Hi Ann,
> I have a message for your from DS5 (he is sitting beside me dictating)....
> I love Avery, and I'm going to pray for him every day!  I want him to be really, really happy.  I hope he will be better soon.  And I think he would like this
> 
> Love,
> Cam
> 
> WE'RE STILL PRAYING!!!!!



Oh my goodness this has me in tears.  What a sweet boy.   

Still praying Ann.


----------



## Jake & Crew

Just want to let you knoe I am still praying for Avery, his parents, sisters, aunts/uncles and of course grandparents.  What a rollercoaster for all of you hope you feel all the positive energy and peace that the people on this thread are sending you.  There are many here who pray and never (or rarely) post ..... Keep up your strength, hope and faith.  

I also pray everytime for your granddaughters, I know how scary this is for ALL the children in the family. Positive thoughts beaming up north to all of you!


----------



## madaboutMickey

More prayers for you, Avery and the rest of your family.


----------



## Shellie722

continued thoughts and prayers for Avery, his parents, sisters, and of course for you and John, Ann. (((HUGS)))


----------



## Mickeyfaniam

continued prayers for Avery & family  ..........


----------



## Mackey Mouse

Hugs to Avery and family, hope he had a decent night and there are some more improvements coming his way.. 

Keeping the prayers coming..


----------



## MerryPoppins

Just checking in again.  More prayers for strength and to take away pain headed that direction.  Hope he was able to rest last night.  Our little warrior needs rest to fight the good fight.  Update us as you are able.

How is the move going?  It's good that you can do it in bits and pieces, but I know that has to be added stress.  Take good care of yourself.


----------



## NHAnn

Thank you all!

It has been another quiet (quiet is good) day so far. Another fairly restful night last night.... No unexpected developments.  Higher white blood cells have resulted in increased swelling and a little more pain reaction but with pain meds and fluid management measures it sounds like they are on top of this.  DS and DIL have instituted an incentive program giving chocolate to doctors with good news and expanded that to include chocolate for dcotors with no BAD news.    Comforting to see that they are maintaining grace and humor in such difficult circumstances.  

If the next few days result , he can continue fighting the infection and there are no unxpected setbacks, the doctors sound like they will admit to the possibility of real recovery so that we can get back to the business of leukemia fighting!   

Gotta keep the faith


----------



## NHAnn

MerryPoppins said:
			
		

> How is the move going?  It's good that you can do it in bits and pieces, but I know that has to be added stress.  Take good care of yourself.



We accomplished a good amount over the weekend and DH has arranged for cable (TV and internet) installation later this week.  I told him I am not going anywhere until I have my internet


----------



## Mickeyfaniam

NHAnn said:
			
		

> We accomplished a good amount over the weekend and DH has arranged for cable (TV and internet) installation later this week.  I told him I am not going anywhere until I have my internet


can't blame you for that Ann... I wouldn't either


----------



## TruBlu

How's our boy today Ann?


----------



## Mackey Mouse

Just checking on our boy... loved the chocolate story and glad he is holding his own.. 

Keeping him covered in prayers.. hugs to you Ann, hang in there.. 

Love, 
Marsha


----------



## gemjoy

How is Avery today?  Continued prayers being sent your way!!!    Glad to hear your S & DIL are keeping their spirits up... I can't imagine how difficult this must be for them... my heart goes out to them for sure.  They are blessed to have you though Ann... Continue to keep us posted ~ we're all praying for his continued recovery and cure!   GOD bless!


----------



## NHAnn

Avery had a little fever overnight but it was gone with old-fashioned blanket removal and cool cloths...no tylenol needed even.  Some med adjustment going on that caused it they think.  Avery's hair has started to fall out....methinks this is going to bother parents more than Avery initially...but DIL has announced a "best hat" contest for when Avery gets out of the woods and back to fighting the leukemia.   
This morning's great news is that the last blood sample for the yeast infection has grown nothing in 48 hours.  Before this, it was growing in less than 30.  This means at LEAST it is slowing down...again the right direction. 
Other lab numbers are showing improvement or holding steady as well...more good news!

I am so thankful for the prayers and positive energy being sent to my brave guy....


----------



## gemjoy

Thanks so much for the update!  That is great news about the blood sample!!!!   Looks like you've got a little fighter on your hands!  And what a great idea your DIL had about the hat contest... I'm betting he'll find that fun ~ and I'm sure everyone will be wearing silly hats.  Keep the good news coming Ann!  We're pulling for little Avery!  GOD bless.


----------



## Mackey Mouse

Well that is good news tonight.. 

I just read this to Katholyn, Nativetxn, who called from Texas and she wanted to tell you, Ann, that you have her good thoughts and prayers and so does Avery... 

From me, more prayers, and hugs to you... sounds like we are going in the right direction...


----------



## goofy4tink

So glad to hear some tests are coming out with good results. Hang in there Anne...there are a lot of prayers being said for Avery and his family. We'll all be praying for you guys for the long run.


----------



## NHAnn

great report on Avery's infection fighting neutrafils...a great increase, and his swelling is ever so slightly decreasing.....still waiting to see if any yeast in the last culture ...but another day of little improvements and no major setbacks!!


----------



## Mackey Mouse

Sounds great Ann... way to go Avery....keep fighting and we will handle the praying... 

Hugs to you Ann!!!!


----------



## kejoda

Prayers are still being said in MN for Avery Ann.   Glad to hear about the improvements.


----------



## safetymom

Ann, that is wonderful news!!!  I am so happy for all of you.


----------



## annrae

Great news today Ann and every good day is a step closer to a healthy little boy.  Barbara


----------



## TruBlu

Way to go Avery!


----------



## Pea-n-Me

Great news, Ann. I hope the nurses got some chocolates too.


----------



## NHAnn

The nurses generally get the most chocolate Linda...they are wonderful there.

*NO* chocolate for the urology resident this afternoon (actually DS says the resident owes them chocolate!) who saw Avery (for the first time)this afternoon and made some very grim pronouncements about the swelling in his "area" of expertise, included some horrific survival statistics on a procedure that would "probably" be needed soon...then he left.  After a few scarey hours which included ultrasound and getting the resident's superiors in for a look...all is actually A-OK at this point and his overall body swelling is going down so they will just keep an eye...as they have been doing    

On balance though....a very GOOD day despite the scare (roller coaster!!)  THis mornings labs were great...those neutrafils were at their highest level yet, over 1000, and no yeast has grown in the blood culture for 72 hours!!  Prior samples were showing it within 30 hours or so.  These are great signs, that he is fighting and his body is giving it a battle   


thank you again for keeping him in your thoughts and prayers!!


----------



## Saphire

What encouraging and hopeful news today, Ann, I am so pleased to hear it!


----------



## Mickeyfaniam

Yikes! Sorry you had such a scare by that resident. Glad to read that things are looking up though


----------



## Mackey Mouse

Yup... some doctors just love to deliver that scary stuff and then they disappear......grrrrrrrr, he deserves to get coal in his stocking for Christmas scaring everyone like that.. 

You know you can speak the truth and not use shock value to tell what is going on.. really, there are ways to say it without killing the people having to hear it.   I am speaking from experience here and those meanies, I call them that, they are no longer allowed near my husband... sorry, that is the way it is.. 

Now back to Avery... you go Avery, you are doing well and fighting....good for you.   To Mom and Dad, sounds like you need to replenish your chocolate but no chocolate for that resident.. grrrrrrr again.  

Hugs Ann, thanks for keeping us in the loop.. we are still praying here.   

I do not know if I know the answer to this or not, but wondered after I read something, you cannot see him right now?  and when do you they think you can see him, if you are not now?  Sometimes it is good to see your nana......for both people...

Just thinking out loud this am.. hugs


----------



## doodlebugs

Praying for Avery and your family.


----------



## NancyIL

Ann - if the hospital ever asks your family to fill out an evaluation of the care that was received - you could strongly suggest that the urology resident  consider being in  "research" rather than "patient care"! 

 I'm so glad to hear that Avery  is  holding his own and making some improvement almost daily! Continued prayers on his behalf.


----------



## Dan Murphy

Stopping by for updates, Ann.  Sounds like a step at a time, making progress.  

Continued good wishes and prayers, and the Blessings of the Christmastime to Avery, and all of you guys.


----------



## NHAnn

Good idea Nancy!

Marsha...because of the sheer volume of immediate family members, DH's ex and spouse, DIL's parents (and 1 grandparents still living)...DS and DIL's siblings (we have 4 other kids besides Avery's daddy, - 3 more stepchildren...each with a spouse or significant Other,  and my DD) there are 6 more grandkids besides Avery...and the number of non-family members who have close personal relationships with DS and/or DIL...they decided that they just cannot "manage" the visitors aspect yet, even though technically it could be allowed on a very limited basis.

This morning was another roller coaster  but things are settling after a few hours and some tests, to a continued positive direction.


----------



## TruBlu

Ann,
Since the DIS will be down we wont be able to check in on Avery tonight, but the boys and I will still be praying!

Hopefully when Avery is all better they can meet at Disney and ride Splash Mountain together!  

I hope you have a Merry Christmas!
Tracey


----------



## Blueeyes101817

Since the dis will be going down, wanted toc ome and post...your family is in my prayers through the holiday season!


----------



## MerryPoppins

I just wanted to check in before the boards go down.  I'm still praying and thinking positive thoughts.  

I've been wondering, how are Avery's sisters holding up?  You said he has sisters, right?  I bet it's hard for them, and even worse with the holidays.  I'm thinking of them too.

Hang in there and we'll look forward to some good news when the boards return.


----------



## NHAnn

Thank you all, very much....
and wishing you and yours a very special holiday weekend!!


----------



## j's m

Ann, more prayers and good wishes for Avery and the whole family. We'll continue to pray while the boards are down and hope for really good news when you can post again.


----------



## Mackey Mouse

Hugs to Avery and prayers of course.. even with the boards down, he is in my thoughts constantly.. little sweetie.. 

Merry Christmas to everyone here..


----------



## Mackey Mouse

Ann, please update when you can.. I have been thinking of Avery for days now, Christmas Eve mass I offered my intentions for him....and of course my husband and the rest of us who need prayers.


----------



## NHAnn

A quick update to tell you he is holding his own, still steady improvement in his numbers...I had the most wonderful Xmas "gift" and got to see him yesterday morning.    

No time for details ...sorry...I am in between houses and computerless at the new house...insanely busy and tired...but happy

thank you for the Christams Miracle prayers I think they are working !


----------



## Mackey Mouse

Ann.. I am so glad you got to see him... we are keeping him in our prayers.. 

You take care of yourselves too.. Hugs


----------



## snappy

What a present, Ann.

I hope you are able to enjoy more time in your new house soon.  I know you are looking forward to it, well that is an understatement.

This is not time to let up on prayers for Avery.  I continue to have him and his family on my mind and in my prayers.

Thanks for posting about your visit.


----------



## rie'smom

Hugs and prayers to you Ann and to Avery and your whole family.


----------



## Blueeyes101817

Glad you got to see Avery!
You guys are still in my prayers


----------



## NHAnn

I typed out an update earlier...I don't know what happened to it  

Avery's blood counts are continuing to be positive.  He has had both chest tubes removed in t he last couple of days and he is "peeing" a lot of fluid so some of his overall swelling is lessening. But he is having a lot of discomfort from a lot of distention in his belly...gas basically.  They have put a tube all the way down his throat to his belly to try to relieve this so that in itself in uncomfortable.  But he is increasingly alert and communicative .  
ALso he had a bone marrow aspiration today.  The fact that they even felt they could do this is a good sign, as it has a potential risk of introducing infection ot the marrow which would be very very bad.  But his numbers have so steadily moved inthe right direction these last few days, they decided they could do this....which means they are beginning to think about the next step in battling the leukemia if his immunity strengthens at the same rate .....which means they attack it and wipe it out again....scarey thought....but I am so in awe of the power of prayers and positive thoughts now....
hard to believe it's a month since diagnosis....


----------



## Jake & Crew

Ann

Been off the boards the past week, could not wait to get on and get to the last page.....missed what has happened since the 19th but am thrilled he is in such a positive position he can attack it so aggressively!  ( Been aggressively attacking my own this week which why I have been off line, but think and pray for Avery often.)

The pain must killing all of you to watch, know how much you want to make it your own and take it away.  Focus on the positive, he is so comforted by your love and we all will keep praying he gets as much comfort as possible.  Most of all, we will keep focused on beating the monster forever so he can go back to be a little boy with a long, happy life!!

Stay strong, stay sane, laugh and love everyday!!!  You are so needed by your family, you are so loved by your Dis family...we will keep praying for your strength!


----------



## Mickeyfaniam

checking in Ann.. sounding positive.....thats good
Continued hugs & prayers for you and the family


----------



## Shellie722

Glad to see some positive results here!!! Continues thoughts and prayers for Avery and your whole family, Ann.


----------



## madaboutMickey

Great to hear he is improving!  Will continue to keep him and your family in my prayers.


----------



## Saphire

NHAnn said:


> I am so in awe of the power of prayers and positive thoughts now....



Me too.  Continued prayers for Avery.


----------



## Mackey Mouse

Came on tonight and had to check.....I am so glad to hear that the numbers are going in the right direction and he is so alert.   God love him.. and I am still praying here. 

Hugs to Avery and to NHAnn for keeping us in the loop here, I can only imagine how your life is upside down right now and yet you still make the time to let us know what is going on with Avery.


----------



## pumba

NHANN.......you and your family are never far from my thoughts even if I am not here.......Please know that I am praying and keeping those prayers going for Avery .......Just know they will be great.....

And Marsha......same goes for MY TOMMY........he has a special place in my heart that is reserved for him......


----------



## NHAnn

Marie!!   I know you are with me in spirit  and I appreciate it 

Avery's white blood counts have continued to show very positive encouraging results and the yeast infection seems to be conquered.  The last 36  hours or so though, he has been having fevers off and on.  A lot of things cultured and scanned and analyzed today...they are not sure the source.  I am thinking myself that this is the the result of the revived umune system reacting to all the tubes and meds and such. (That's my story and I'm stickin' to it!!!) Which they talked about a week or so ago (that once his WBC went up he'd be sicker when the WBCs attacked the infection(s) ----but now feel they need to scan this and culture that and talk about potential new infections     Sigh
Also...Avery has always had allergies and sensitivities to "stuff"  dust,pollen...had skin sensitivities like eczema...so can you imagine this little body reacting to chemo and then VERY strong antifungals and antibiotics and tubes everywhere??  Apparently today the place where the chest tube was removed was itchy and inflamed--and the little bugger stuck his figner right INTO the hole to scratch it...until they taped it all up with layers of plastic and gauze...good grief!!  He totally grossed out his mom!!  
One very very good piece of news today was that the preliminary results of yesterdays' bone marrow aspiration showed no leukemic cells.  This is preliminary and doesn't mean there are none there...it does mean though that in the last couple of weeks while battling the infections, the leukemia has been kept at bay by the steroids.  And when he is  able to resume chemo treatment for the leukemia, it will be at the "consolidation" phase rather than have to repeat or extend  the "induction" phase he was in when he had the setback.   
So  we are all trying to keep up the prayers and psoitive thoughts for his continued progress!!  Thanks!!!


----------



## Mackey Mouse

I loved reading that this morning.. 

Way to go Avery, keep up the good work.. we will keep up the praying and who knows we may just pray you right out of that hospital.

Hugs to you Ann....


----------



## Mickeyfaniam

more praying Ann  

and too funny about the scratching


----------



## TruBlu

Fantastic report Ann!  Just reading it brought tears to my eyes.  There is no stopping your little man!!!!  I can't wait to read that he is home with his family. 

Isn't the power of prayer amazing???


----------



## NHAnn

Avery had another quiet day...quiet is good, and more chocolate for the doctors!    is temp has fluctuated but not spiking as high as yesterday, a good thing too. 
He actually had some PT today, work a little on those muscles as he has been in bed for three weeks straight now. He's complaining of some pain in his right shoulder, and also where they took out his chest tube on the left.  But they are trying to ease up on narcotic painkillers, so as to let his digestive system work a little better, which would lessen the abdominal swelling and allow his lungs to expand better, which would hasten removal of the respirator..... and the hip bone's connected to the thigh bone and the thigh bone's connected to the knee bone, and so on and so forth 

Keeping those prayers and positive thoughts going !!


----------



## Blueeyes101817

prayers still being said for avery and your family!


----------



## NHAnn

We had a nice visit with Avery and DS and DIL this morning! He had been given some pain med while we were there but he did recognize us and apparently early in the day he had some wonderful really lucid  "Avery" moments with his daddy before the days poking and prodding began.  eE is such a trooper!

He is doing well tho still in ICU...things are much more quiet and boring...we like quiet and boring!    Only 3 "tubes" remaining...the respirator one, the catheter and the PIC line.  

THANK YOU again for the prayers and support!


----------



## safetymom

That is wonderful that you got to see him.  I am thrilled that he continues to make progress.  I still have you all in my prayers.  Thank you for the updates.


----------



## kejoda

I can't tell you how happy I am to come here to see good news.   You must be over the moon Ann.  


As always continued prayers for you all.


----------



## kathleena

Hello neighbor

I've just read through this thread.  Avery and your family have been through so much in a month, but I was happy to read that he is getting better from the infection.  Many prayers for you and your family and little Avery coming over from Maine.

I am also praying for another leukemia patient, this one a young woman, just graduated from law school, who has both ALL and AML.  Both she, and a grandson of my cousin who had cancer, set up a free website on Caring Bridge to help them keep in touch with loved ones and friends.  Just including the link in case you would like to do so yourself.

http://www.caringbridge.org/


----------



## Mackey Mouse

Love these updates on Avery, always check to see how he is doing and heading to church now where I will offer prayers for him.. 

Hugs to Ann.. hang in there, you are all doing great.


----------



## MerryPoppins

Ann, I've been away all week, so I was anxious to get back to my computer and check on our little patient.  Sounds like things are going well.

I was away all week at a youth retreat.  I was the "mom" for a group of about 20 kids from 10th through the 12th grade.  It was a really spiritual group and I told them about Avery.  Several of them had tears in their eyes and they all wanted you to know that he'll be in their prayers.  In fact, each group wrote a prayer to share and he was included in each one.  It really touched them that he was so young and fighting so hard.  We had a healing service and I had them lay hands on me in Avery's name.  I hope that is okay with you.

One cool thing was that we had a girl that didn't particularly want to be there.  Here parents were worried about her lack of concern with her grades and possibly the crowd she was running with. Avery's story obviously touched her deeply.  She wanted to know if she could talk to a group of ladies at her church who pray while they sew prayer blankets and then they send the blanket to the person they were praying for.  When we went home she was talking to me about trying harder to get along with her parents.  I really think talking about Avery made her look at her own life.  See how bad situations can have positive results?


----------



## NHAnn

Merry...that is truly touching and   do not mind at all  

Today DH and I took care of Avery's two little sisters, while DIL's mom went home for the day to Massachusetts.  We had a good day and the girls are doing well despite missing their parents and big brother.

Avery's issues today center around concern about his GI system...it is just not resuming it''s function the way it was expected to with the other progress he's made.  They are concerned about possible abdominal infection outside the GI tract and considering ways to approach or test for this.


----------



## Belle1997

I am so glad to here the positive news on Avery. Wow. Poor kid and family but great news he is beating the odds and doing well. Prayers still coming for this long journey. 

Guess you better get a new  load of chocolate these doctors are doing a great job


----------



## Mackey Mouse

Just checking in here on our little buddy, Avery, read Ann's report.   So now more prayers for healing that GI area and more prayers for no more infection..

Hugs all around..


----------



## Dan Murphy

Here we are, Ann, a new year, a new light, Avery's year to be well again.  Continued prayers and good wishes for Avery.

And good wishes and prayers for your concerns there too, kathleena.


----------



## Blueeyes101817

I always come and check updates every morning..I told my family about Avery and we all are praying


----------



## NHAnn

A full CT scan today showed very large pockets of "abcesses" throughout the left side of Avery's torso.   They feel the revitalized white blood cells are attacking this and this is the cause of his discomfort as well as fevers and rashes.  They aslo feel this is the "original" infection  
ANd now...dilemmas/debates on what to do.  They did do a procedure to insert a drain to analyze  the fluid..if it is mainly sterile fluid (with the white blood cells having done their thing) the body can reabsorb the fluid onits own over the next few weeks.  Problem with that is it further delays resuming chemo for the leukemia.  More invasive surgery to remove any infected tissue is another tactic that might be considered, which of course has it's own risks...I will update as things unfold.

We are trying to focus on this as another challenge to be overcome, another bump in the road on this journey to recovery that we are determined to complete.


----------



## Pea-n-Me




----------



## Saphire

Praying for wisdom and guidance for those doctors as they decide what the best approach is for that infection.


----------



## MerryPoppins

More prayers headed your way.  May the doctors use the best judgement in their decisions.  After all, they have tons of prayers going up that God will steer them in the right direction.


----------



## Mickeyfaniam




----------



## Mackey Mouse

Morning all and prayers for Avery as always.. take care Ann and family and hopefully we can pray him through whatever he needs to get healthy again.. 

Hugs to all..


----------



## snappy

I just saw the news about the abcesses.  Praying hard for Avery.

Laurie


----------



## DISNEYLOVER70

Prayers and  for Avery, you and your family.


----------



## NHAnn

Avery's in surgery this afternoon to get at those abcesses.

Our local paper had a story about him this morning!

http://www.concordmonitor.com/apps/pbcs.dll/article?AID=/20070102/REPOSITORY/701020361


----------



## Mackey Mouse

Just got back from chemo with Tom and came here to read about Avery.. 

I hope all goes well on the surgeries and they get those damn abscesses.. 

Hugs to you Ann and to your family... I am praying..


----------



## Teacher03

and prayers for Avery.  You are also in our prayers.


----------



## Blueeyes101817

and prayers


----------



## NHAnn

Surgery went very well!!     I think our boy will meet this challenge with the same success as the past ones...with all the love and support and prayers surrounding him!!


----------



## Mackey Mouse

I am so glad it went well Ann... Bravo to you Avery.. you show those doctors how tough you are and beat this thing.. 

Of course, more prayers... and hugs!!!!


----------



## MerryPoppins

I'm so glad!  We went out to the movies and dinner and Avery was constantly in my thoughts.  I came to the boards the first thing when we got home.  What fantastic news!  Those doctors seem to know what they are doing.  Give them some chocolate.


----------



## TruBlu

Ann,
I just read the article and I'm typing thru tears!  His picture was just so cute!  It is really heartbreaking to think of him so sick.  We are still praying here.  I'm very happy to hear that the surgery went well.
 
Tracey


----------



## Mickeyfaniam

Just read the article Ann and I too, am typing through tears.
But so happy to read the surgery went well! continued hugs & prayers .....


----------



## snappy

That article was amazing, very touching.  Thanks for posting it, Ann.


----------



## gemjoy

just popping in to send more prayers!!!


----------



## annrae

I read the article Ann and it was so very touching.  Very happy to hear that Avery did so well with the surgical procedure he underwent over the weekend. Hopefully, everything is going to be uphill now.  Try to rest and enjoy yourself at WDW Ann.  Hugs Barbara


----------



## MerryPoppins

I just stopped by to check on our boy.  I guess no news is good news.  Hope he is recovering from the surgery and feeling better every day.


----------



## fan of the TTA

i do hope everything goes well.

you have my thaughts


----------



## Mackey Mouse

Checking on Avery... hope is doing well and more prayers coming his way.. 

Hugs to you Ann, stay strong.


----------



## Jake & Crew

Ann just a quick  

Been off for a while, but am back in full force.  Prayed for Avery often.

Did not even know about the surgery until tonight, but had very peaceful positive thoughts whenever I was praying for Avery so I know in the big picture he is doing great,even if it feels like 1 step forward 2 steps back, I know he headed in the right direction.  Hope the surgery relieved HUGE amounts of pain, no child should feel such agonies.

Will continue positive thinking and praying for all of you! 

Great article what an inspiration he is to so many.

 How is the fundraising going?


----------



## MerryPoppins

Just letting you know that Avery (and the family) remain in my frequent thoughts and prayers.  We never heard from you today, but again I guess that no news is good news.  Lots of hugs and positive thoughts.


----------



## Mackey Mouse

Hope Avery had a peaceful night and is meeting this morning in good spirits and not any pain, that is my prayer every day... 

Let us know when you can Ann.. hugs.


----------



## j's m

Ann, just letting you know that I've been thinking of Avery and your family, and praying for his recovery.  I read the newspaper article, a definite tear jerker but a wonderful view into a precious boy and his family. Please update us with some good news.


----------



## snappy

Hope our not hearing from you means BOTH that Avery is more than holding his own AND that you are having an outstanding trip, Ann.

Remember me to the mouse, please.


----------



## Hanover

This family's strength is phenominal.

We are praying and keeping the entire family in our thoughts.


----------



## Towncrier

The family has a website for Avery that you can get a link to from Ann if you send her a PM. If you sign his guestbook, you can opt to receive emails whenever his journal is updated.

Continued prayers for Avery and for the entire family as well as for his caregivers.


----------



## NHAnn

I have had computer problems today, but seem to be back up and running.

Avery continues to hold his own, and all the prayers and positive thoughts continue to aide him and support his family. He was able to resume some chemo treatments and today was a good "quiet" day.

I did not post the link to Caringbridge earlier out of repect for his immedate family's personal privacy (his parents had asked that I not give any of their personal data on this large public site)...several of you have sent things for him, via me, and many of you have sent prayers  and good wishes, and many of you been such personal support to me...I cannot express how deeply we appreciate it all. And I hope I did not offend any of you by not sharing that site earlier.  In any event, since the newspaper article, it is all very public out there anyway . DSS and DIL are getting calls and e-mails from their former high school and college classmates.

thanks!!


----------



## snappy

Good news, Ann.

I really love reading Avery's story.  Your son and daughter are two awesome people, two awesome parents.

Reflects well on you and your DH.

Hope you all are having a bit of fun this week.

Thinking of you all.


----------



## NHAnn

snappy said:


> Your son and daughter are two awesome people, two awesome parents.
> 
> Reflects well on you and your DH.



Well, I can't take a lot of credit on DS...he is actually my stepson and DH and I married when he was in his late teens    But the apple doesn't fall far from t he tree, for sure     and DIL...I just adore her.

Avery is holding his own these days....he is an amazing fighter for sure.


----------



## Belle1997

checking on the updates. Glad to hear Avery is holding his own. What a little fighter he is. But the way I would love to read the article. Can you pm me with it. I did not find the link in these post. Thanks.

And thank you for keeping us informed on Avery I know I really care and hope and pray for his continue recovery and health.


----------



## Jake & Crew

Ann

No offense taken, please do not even go there.  Our prayers, thoughts, positive energy are for all of you, most of all Avery.  There is no Emily Post in the world of cancer, just love and support.

Praying for Avery to sleep well tonight.  Hopepfully the Pats kept his spirits up today.


----------



## Mackey Mouse

Hoping Avery had a good night and enjoyed the game with his Dad... I hope.   

Take care of one another.. and more prayers..


----------



## Blueeyes101817

Hope Avery is having a good day today!


----------



## TruBlu

Just checking-in.  Hope each day is getting better and better for little Avery!


----------



## NHAnn

Hello...back on after a couple days of computer issues. again...
Thanking you all for continued prayers....Avery had chemo the other day and his white blood count has dropped again ....and there seems to be some disagreement on t e medical team as to whether this is attributable to the chemo or not...but we shall see, and we continue to stand by Avery in this battle!!  He is such a champ!


----------



## Jake & Crew

, he is a champ.......this is the worst roller coaster in the world......more prayers and positives Avery's way.

Does his hospital ever consult with Dana Farber or Childrens???


----------



## Mackey Mouse

I would think that it was related to the chemo, but then again I am a lay person.. 

Tom's platelets are low, that is due to chemo, as far as I know.   I sometimes wonder if they truly know how debilitating this chemo is.  

Ok.. enough of that, praying for the little guy and hoping he is doing well today..


----------



## Belle1997

Thanks for the update. Avery is still in my prayers. What a little trouper. Praying for strength for the family.


----------



## TruBlu

Ann,
I hope you are all doing well today.  Avery is constantly in my thoughts and prayers.  My boys and I check for an update every night before bedtime prayers and always say special prayers for him.

I hope you are all taking care of yourselves so that you will be stronger for him!

How is the new house?  Are you completely moved in yet?


----------



## NHAnn

Jake-no consults that I am aware of at this point 
Trublu- we are hoping to be actually living there within 10 days.  Keep your fingers crossed!
Marsha-there are so many times his parents and the rest of us predict or speculate accurately about the ripple effects of all these treatmetns and procedures and side effects....the different specialities (radiology, oncology, infectious disease....all seem to want to sort of fingerpoint at others or claim ignorance on the negatives and self-congratulate ont he positive.  But enough of that, as you say, I'm convinced it is Avery himself and his army of warriors and pray-ers that are getting him through this and will bring him out to victory at some point!!!

If you can, at 3 PM today.....send a prayer and/or positive energy/thoughts for Avery....

He's having a spinal tap IF they are successful again like last week in finding a safe entry point amidst the swelling. They will inject chemo at the same time. This would prevent (or at least put off) the need for an ommaya port (which basically is permanent hole in his skull). Last week it (the spinal entry worked.successfully..DSS asked for focused prayers at 3 when Avery goes down to surgery.

thank you my friends!!!


----------



## safetymom

Prayers will be said at 3.  I hope everything goes well.


----------



## Saphire

NHAnn said:


> If you can, at 3 PM today.....send a prayer and/or positive energy/thoughts for Avery....



Absolutely. I will lift him up in prayer this afternoon, especially at 3:00.


----------



## TruBlu

We'll be praying here, too.  I just called my Mom, and she and my boys will be praying for our sweet little friend!!!


----------



## TruBlu

We're praying.  Let us know how it goes.


----------



## Mickeyfaniam

hugs & prayers continued Ann.....


----------



## Mackey Mouse

How did the little guy do?? I hope ok, I hate the sounds of the port in his head, but I know they do this.....Tom had one in his clavicle went into the main vein in the heart for his chemo first time around.   

I hope he can manage without it... God love him.. praying for him and you Ann and the family... Please let us know how he is..


----------



## TruBlu

I hope Avery is doing well today.  How did it go yesterday?

Cameron (DS5) asked about him first thing this morning.  We call him our hero!


----------



## NHAnn

Hi friends....
Well they were not able to give Avery his chemo yesterday, they did not have enough safe clearance for the spinal.  But the port is still on hold until at least Monday, so things could change by then.  MEanwhile, today he is having surgical procedures to remove a couple of drains and biopsy some bumps on his legs.  He breating tube will come out today or tomorrow they say.

Meanwhile.....in this Epic called Avery's Anatomy, we had a little episode which we will call  Grammie's Great Adventure: Yesterday I started feeling an odd pressure/pulling sensation in my right chest, intensified when I tried to take a deep breathe- about 20 minutes before quitting time, I got a little panicky when it didn't pass. When I got home I just knew something was wrong, called my doctor, they directed me to the hospital's satellite Urgent  Walk-in center . DH drove me, DD met us there. 

They started all kinds of tests/blood work to rule out  heart attack, pulmonary embolism (clot) and stuff.  Of assitional concern is the clinical trial medication I am on has potential vascular type side effects.  I ended up being transported by ambulance (that was a first!) to the regular ER because they don't have a CT scan at the walk in. Better to go via ambulance , they take you right in anyway!! Fnally the CT scan around 9 diagnosed a pneumothorax, they had missed it on the initial chest X Ray at the walk in care, but the ER doc and the cardiothoracic surgeon bothsaid it was easily missed.  It is  a partial collapse of the rt lung. . they put in a small more "comfortable" (yea right!) chest tube te purpose is to drain or inflate something something  and get theings repaired. I went back to the hosp today to get another X Ray and YAY they took it out.  (IT was more sore than it did before they put it in, but it's a differnt sensation! Got no sleep, my leftover Vicodins from 18 months ago apparently are stale or didn't get them started soon enough.

Usually these are caused by trauma of some sort but can occasionally happen spontaneously...yep that's me, Miss Spontanaeity??? Bleeeeehhhhhhh
Does give me renewed awe and inspiration at what Avery is handling........


----------



## Mackey Mouse

Oh Ann...

Yikes.

Hugs to you, I hope you asked the doctor for some more pain pills to have onhand.. just in case.  I am glad they took the chest tube out today though.   You never know, you never know what is around the corner.. 

No chemo for Tom either, his counts are not great, but you know what, it is what it is...when the counts are better, they can do chemo.  I just want to go somewhere warm and escape.. 

Please take care of yourself and I am praying no port for Avery....hugs all around.


----------



## safetymom

Ann, you sure have had more than your fair share of medical emergencies.  I will keep you both in my prayers.


----------



## Jake & Crew

Ann

This one is for *you* 

Will be praying all weekend that Monday is a good day for the tap for Avery.

I know this is sensitive, but may be time for Boston, it is so close ......my neighbor would not be here today if his doctor from Hasbro (childrens in Providence) did not get him to Boston.  

We so want to trust our docs, know they do the best they can but even mine said he would not be offended if I went to Boston for  a consult as my case keeps defying the "natural course", he even said he would get me a referral, I am thinking of doing that but due to my last treatment can not be examined until Feb/Mar and the CT last month was good so will decide for sure on 1/24 when I go back to the oncologist.

Will pray for Averyand his parents!


----------



## Mackey Mouse

I forget what Ann told us was the hospital.  If it is the Hitchcock one affiliated with Dartmouth that is a very good hospital too.


----------



## NHAnn

Yes, he is at CHaD (the Children's Hospital at Dartmouth), at the Dartmouth Hitchcock Medical Center in Hanover NH, it is a very highly regarded teaching hospital, generally on par with the Boston facilities.  I am not even sure if he could even be taken to Boston at this point.  I do think though, just from my own knowledge - with my mom and having grown up in the Boston suburbs, that the Boston facilities should be taken advantage of, for a consult at least.  I just really haven't found it the right time to mention/ask/suggest to  DS and DIL that it would be a good idea.  

Avery had some surgery yesterday to remove a couple of tubes but then put in a couple more drainage tubes for the abcesses in his back/trunk area.  Also they biopsied one of a few "bumps" on his leg....not sur ewhat that is all about.  On the good news front, they should be taking out his breathing tube today.  Lately I feel like just saying:  "Can we just let him BE for a few days?? Let him rest, heal? "   Quit poking and cutting and so forth, everything one team does causes a problem for another team, effects of one med does something else and another specialty comes in and addresses that and blames somethign off the wall.....
uuugghhh

I myself am feeling better this morning, had a very good night's sleep after none the night before!


----------



## MerryPoppins

Just wanted you to know that even when I don't post, I'm following Avery's progress.  I get updates from the hospital now and I pray with renewed vigor each time I hear how things are going.

Hang in there.  Kids are resilient.  He's a fighter and he'll make it through all this just fine.  I have faith.  We may lose power with this horrible ice storm that we're experiencing, but nothing will stop my prayers!


----------



## annrae

MerryPoppins said:


> Just wanted you to know that even when I don't post, I'm following Avery's progress.  I get updates from the hospital now and I pray with renewed vigor each time I hear how things are going.
> 
> Hang in there.  Kids are resilient.  He's a fighter and he'll make it through all this just fine.  I have faith.  We may lose power with this horrible ice storm that we're experiencing, but nothing will stop my prayers!


I heard on the news today about the ice storm you are experiencing.  I, myself, would much rather have a good old fashioned snow storm rather than the awful ice.  We were without power for 14 days at one time in Upstate New York and it is amazing how many times I wanted to turn the lights on!  Anything, just anything, is ok I guess relative to what Avery and Avery's family is going through at this time.  It seems to be a vicious circle for them.  As you say, children are resilient and Avery is definitely a fighter which sometimes is half the battle.  Hugs to everyone  Barbara


----------



## kathleena

Many hugs to Ann and Avery!!!!!!

Praying for a tap before Monday.........


----------



## TruBlu

What a strong little boy.  Does he understand why they are doing all these things to him, or is he feeling too bad to care?  It just breaks my heart.

I agree.  I wish they would give him a couple of days to bounce back some.
 

Still praying!

Hugs to you too Ann.  I'm glad you are feeling a little better.


----------



## Belle1997

Wow hope you are feeling better NHAnn. That was just scary. My heart goes out for little Avery. Spinal taps are nasty I have had two and face another one in a week. Poor little guy feeling bad already and having all the needed procedures is just is awful. Glad to hear the breathing tube is coming out. Praying that no more complications arise. I read this every day and pray for God's grace to your whole family through this. Thanks for keeping us updated.


----------



## Mackey Mouse

God love him, he has been through so much.. 

Well, heading to church and he will be on my prayer list, you too Ann, please take care of yourself. 

I do hear about the poking and proding....sweet baby...I am sure they are doing what is the very best in care for him..  Maybe a consult if you can get him stable, but I have learned with daughters and sons, sometimes you have to wait for that best time....I hear ya Ann.. 

Hope you have a restful day today and that Avery does well also..


----------



## NHAnn

Avery's breathing tube was taken out this morning and he is doing great breathing on his own, no difficulty w/the transition!
His mom and dad had a nice morning, he sat and played a video game with them even, and they were so happy to see HIS smiling face without the tubes!!


----------



## Blueeyes101817

NHAnn said:


> Avery's breathing tube was taken out this morning and he is doing great breathing on his own, no difficulty w/the transition!
> His mom and dad had a nice morning, he sat and played a video game with them even, and they were so happy to see HIS smiling face without the tubes!!



thats great news!


----------



## MerryPoppins

Awww, that's wonderful news.  Sounds like a great day for all of them.


----------



## Jake & Crew

Love the good days, will just keep praying Avery gets more and more of them!

Understand you are in a tricky spot about the consult question, will pray for that too.


----------



## Belle1997

Oh great news. A happy milestone


----------



## Mackey Mouse

Woohoo.. way to go Avery... I can only imagine what a relief it is for the parents, grandparents and of course Avery to get that tube out..

Keeping him in my prayers..


----------



## NHAnn

Today, the catheter came out....and now just a couple of drainage tubes for what's left of abcessed areas in his back!   They NOW plan to give him a few days to rest, and restart chemo Thursday.  Because he is less sedated and less narcotic meds with the breathing tube out, he is really "with it" for the first time in a month.  This is causing him some anxiety, all these docs and nurses and techs who "know him" after caring for his the last month have been coming in to say hi to the alert Avery and he's a little overwhelmed.  Also he is having some nausea due to getting off the narcotics but it is hoped that the nausea will abate and his emotions will smooth out as well.


----------



## Dan Murphy

Some good updates there, Ann, great news.  Little steps of progress add up to big steps.  Continued prayers. 's


----------



## Mackey Mouse

Lots of hugs and prayers for a peaceful night for Avery without nausea....he is doing so good.. Bravo to him.  

Hugs Ann.. thanks for keeping us updated.... more prayers coming his way.


----------



## kathleena

Many prayers to little Avery for a restful night.


----------



## TruBlu

More steps in the right direction!!!  Way to go Avery!!!


----------



## Mickeyfaniam

some good news Ann  
continued prayers ......


----------



## Saphire

I am so pleased to hear about the daily progress Avery is making, and will continue to pray for this special little boy.


----------



## lyeag

Any news today??  I haven't posted, but I have been keeping up and keeping up with the prayers.


----------



## TruBlu

I'm hoping that no news is GOOD NEWS!


----------



## NHAnn

Wonderful news today....
Avery had his last 2 drainage tubes removed, and had his spinal chemo today.
They are talking about moving him to the regular pediatric floor if the next couple of days go well with reaction to the chemo.  
We are hoping and praying that his little body and his strong spirit and the support of prayers will keep him on the road to recovery, that  his immune system can withstand each chemo dose until he is home and healthy!!


----------



## Jake & Crew

Just said a prayer for HOME AND HEALTHY!!!

Good steps forward Ann, lots of people and prayers are behind Avery and your family every step of this journey.

LOVE the good news days.....


----------



## Mackey Mouse

Oh.. way to go Avery... I do hope that he tolerates the chemo well, it is difficult to do.   So glad the tubes are coming out and he can be on a pedi ward with other children.....just knowing there are others around you can be uplifting..

Take care Ann....still praying. hugs to Avery.


----------



## TruBlu

Praying for HOME AND HEALTHY here too!!! (Actually, I'm praying for Avery to be able to tell his GRANDKIDS about this experience!!! )


----------



## j's m

Glad to hear some good news about Avery. The prayers will continue, give him a hug when you next see him.


----------



## NHAnn

*Avery has been moved out of ICU and onto the regular pediatric floor!!!*

I've been crying happy grateful tears all day!!

We hope to visit this weekend!!


----------



## Pea-n-Me

Wonderful news, Ann.


----------



## lyeag

Way to go Avery!!!  What wonderful news.  I hope he gets a good night's rest and an even better day tomorrow!


----------



## Saphire

NHAnn said:


> *Avery has been moved out of ICU and onto the regular pediatric floor!!!*



Wonderful!   Just wonderful.


----------



## Mackey Mouse

Woohoo for Avery..   

That is just the best news for him and the family.   Enjoy your day today with smiles, wind too and sunshine..   Hugs.


----------



## Belle1997

Yeah  Avery you go kid what a fighter.  

So glad to hear he is doing so much better. God's little miracle 

What a long way he has come and fought back against the odds. The power of prayer is just so amazing. Though I have never met you or Avery my heart just goes out to him and his family. I will keep praying for a full recovery


----------



## Blueeyes101817

great news!!


----------



## TruBlu

NHAnn said:


> *Avery has been moved out of ICU and onto the regular pediatric floor!!!*


When I told my boys they both let out really loud whoops of joy, jumped up, started dancing, and did a big high five!  You would have thought we won the lottery!


----------



## Mackey Mouse

Heading to church in a bit, Avery will be on my prayer list there too..   Hope yesterday worked out great and the sun is shining this morning for our little buddy..


----------



## Jake & Crew

Three cheers for the champ!!!  Who cares if the Colts are going to the Super Bowl......Avery going to the floor is SO MUCH BETTTER!!!!!!

Continued prayers and


----------



## Mackey Mouse

How is Avery doing today.. hope he is enjoying his new digs and meeting other children when he is well enough.. 

I watched this special on Danny Thomas' St. Jude Hospital the other night and all I could think of was Avery.. and I was weeping and praying...


----------



## NHAnn

My little guy is doing pretty well, they straightened out a snafu with weaning him off his narcotics and he's better today than over the weekend.  He has gone for wheelchair and wagon rides and even short walks.  His sisters visited him today, they were able to share hugs and kisses for the first time in 6 weeks... and 3 yr old Delaney told him he looked cute with no hair  
Another spinal tap will be Thursday and they are alreadydiscussing type/dose for chemo, his numbers look good after last weeks, so  

Again, thanks from my heart for your prayers and support.

PS....we are about 80% moved and sleeping at our new house.  Also having computer/internet connection issues with my laptop/router so am on an old W98 desktop with no current virucide  (long story)....if I disappear for awhile it's lack of time or computer issues!!  WIll keep you updated as I can!!


----------



## Mackey Mouse

Ann.. that was such a great post to read......he got to see his sisters.   Wow, that is special and he was walking a bit.. now if he just can keep those numbers up so that they continue the chemo and make him all better... Enough for this sweetie..


----------



## TruBlu

What a wonderful report!  Just thinking of him with his sisters has me all weepy this morning!  BUT in a GOOD way!!!


----------



## Deesknee

I'm new to this board. I have read most of this post. Avery is now added to my prayer list. I'm glad to hear things are now heading in a positive manner.


----------



## Mickeyfaniam

great news Ann  
and continued prayers....


----------



## MerryPoppins

Glad to hear things keep getting better for Avery.  I'm still praying for our little guy.


----------



## goldcupmom

Glad to see Avery is making some strides in the right direction.  I'm continuing to pray for him and all your family, Ann.  Thanks for keeping us posted. 

Hopefully you will be settled in your new home soon!


----------



## Belle1997

Hi just to let you know I am checking to see how Avery is doing. Hope that he is still doing well. What a brave little boy.


----------



## Deesknee

Just checking to see how Avery is doing before I go to bed. He and his loved ones will be in my bedtime prayers.


----------



## NHAnn

Well, they had been starting to talk about a release date for Avery, but that is on hold now   He needs a surgical procedure they have scheduled for tomorrow to remove/drain some infected "gunk"  (the doctors said "think peanut butter/boogers consistency"      ) down the left side of his back under the skin.  It sounds like they will have to make a long incision and clean it out and put in antibacterial sponges which will need to be changed /decreased (surgically) every few days over at least a couple of weeks. 
On the plus side, his immune system counts are still looking good and his spirits are good.  Thank you for your continued prayers! 

I have not been on line as much lately...I am busy/stressed with just moving , some extensive dental work (3 crowns and a root canal)...but thinking of you all and grateful for your support!!


----------



## MerryPoppins

The peanut butter gunk sounds horrible.   Poor little guy.

But I'm glad he's in good spirits and continues to make progress.  It's wonderful that they're even talking about release dates, isn't it?  He's fought so hard.  I'm very proud of him.  What a little trooper he is.

How are his parents holding up?  I know this has been very stressful for them.

I'm continuing to pray.


----------



## j's m

Ann, thanks for the update, I was praying everything was ok. I'm glad you were "just" busy. I hate root canal.

That surgical procedure sounds awful, I hope it goes well. He must be such a brave little boy.  to all of you.


----------



## Mackey Mouse

Hugs Ann.....I cannot believe they are talking about releasing him from the hospital......I mean it seems like yesterday we were beside ourselves with worry.. I know it probably did not go by fast for you all though.. 

Anyway, take care of you, get that move done and all that dental work out of the way so that you can enjoy his sweet face up close and personal when he gets home..


----------



## Deesknee

What a tough little guy. Glad to hear his spirits are good and that they are talking about releasing him. I'm sorry to hear he has to go thru this surgery.  I hope you are able to relax with him in your arms in your new home very soon. Good luck with all your dental work.

God bless. You and your tough guy are in my prayers continually.


----------



## Belle1997

Oh I am so glad they are talking release date. And so sorry he still has more surgery ahead. But every little step forward is a gift  I was so worried this little guy would not even make it to Christmas. He has come so far. What a little fighter and I am sure all the prayers of all the people all over the world sure makes a difference.

Thanks for the update. Was getting a little worried.

Hugs to you and sorry about the root canals nasty stuff.


----------



## TruBlu

Just sending some love Avery's way... 

How are you all doing Ann?


----------



## Saphire

Still remembering Avery and praying for a release from the hospital soon!


----------



## NHAnn

Hey you all...life's been crazy as usual...I came down with a chest cold late last that has settled into laryngitis this week, feeling kinda blah but just can't take the time out to rest and get rid of it once and for all...between work and the new house.  This too shall pass.

Avery has been doing GREAT...the procedure and follow ups on that drainage issue in his back have progresed very successfully.  He is spending much more time out of bed, out and about the hospital just for scenery changes and doing PT and such. Nothing has been mentioned about a release date the last few days.  My gut is telling me that it's coming --but because of the hopes and then setbacks before, I think DS and DIL are not saying anything to anyone.  I think they don't want to "jinx" things and that it will be sudden to the rest of us when they say "Avery is going home..."


----------



## rlduvall

Wonderful, wonderful news.


----------



## j's m

Great news about Avery, Ann. So glad he's up and about.  

Sorry you're not feeling well, but it's no surprise you're run down with everything going on. Hope you feel better soon. Take care.


----------



## madaboutMickey

Continued prayers for you and your family, especially Avery.


----------



## Mackey Mouse

I have been thinking about Avery on our trip to WDW and could not wait to get back and check on him.. 

So glad that he is doing better Ann, wow...amazing how resilient children are, they bounce back after horrifying experiences... I have him in my prayers still and hopefully we can get him home to his family and just visiting hospital on an outpatient basis.. 

You take care of you too.....hugs all around.


----------



## Mickeyfaniam

glad to see things are going better for Avery. I hope you're correct and that he will be going home soon. {{{HUGS}}} to you And of course continued prayers for Avery


----------



## NHAnn

Avery is doing great!  he's been having antibacterial sponges inserted and then changed out every 2-3 days this past week...this is in his back where there was an area of abcess/infection that would not drain through tubes.  It's healing very well, smaller sponge each time.  This appears to be the final hurdle before possible release and back to outpatient chemo for the leukemia.  Keeping fingers/toes and everything crossed and praying too of course.  In between procedures  he is feeling well enough to be doing some PT, excursions to the medical center's food court and shopping areas, children's playroom and even the teen lounge where there's a big screen TV.  His humor and personality are back full force.


----------



## Pinnie

Continued thoughts and prayers for Avery and his family.

blessings

pinnie


----------



## Jake & Crew

so glad things are moving in the positive direction.....still here and will keep praying for Avery to go home and most of all return to complete health as quickly as possible


----------



## TruBlu

SO HAPPY TO HEAR THIS GREAT NEWS! 

My little Cam is still praying for Avery every night.  We read your update just before bed last night, so Cam's prayer went like this...

Dear God please make Avery better, and better, and better, and better, and better... (he said that over and over for about 5 minutes)... and better, so he can go home with his sisters!  

And, he told me that when Avery's cancer is all gone and he feels better we are having a play date!    I can't wait for that day!


----------



## Deesknee

So happy to hear Avery is doing well. He and family continue to be on my prayer list.


----------



## j's m

Ann, I'm so happy the news continues to be good. Just the fact that he is up and around is wonderful. I'll continue to pray that all the other bad stuff stops and he can just concentrate on the leukemia.


----------



## NHAnn

Big news.....they are planning to release Avery home on Tuesday!!  
He will stll have the vacuum dranaige for the incision in his back...he will be having PT at home each day as well as daily visiting nurse, and day trips up to Hanover twice a week for the time being....but this is just so amazing (and a bit scarey).  In 6-8 weeks he will be in another intensive chemo phase which can be tricky, but they are hopeful his strength level will withstand any little bugs that dare to come knocking.
He, and his whole family are in great spirits and looking forward to adjusting to another "new normal"


----------



## MerryPoppins

I'll keep my fingers and toes crossed that all goes well.  And of course, I'll keep praying for that little angel.


----------



## Belle1997

This is so amazing. He has come so far!!!! I prayed for Avery last night. And have done so over this stressful time. So nice to see he is getting home. A little miracle we can all be thankful for.


----------



## Dan Murphy

Great updates to see, Ann.    What a good read. 

Continued prayers for Avery and all the family.


----------



## Saphire

NHAnn said:


> Big news.....they are planning to release Avery home on Tuesday!!
> He, and his whole family are in great spirits and looking forward to adjusting to another "new normal"



How WONDERFUL! Oh, best wishes to the whole family as Avery is welcomed home. And to you too, Ann...you have been very faithful about bringing his story to us and updating us so we could pray for him. Please continue to tell us about his progress.


----------



## TruBlu

Tomorrow is the big day!!!  We're praying that all goes well and sending lots of love to our Avery!!!


----------



## Mackey Mouse

I cannot wait to see how it goes for Avery tomorrow......lots of hugs and good wishes coming your way for a safe trip home and just comfortable time with his family...

Ann, let us know how it goes, please...


----------



## j's m

Hope everything goes well today and Avery gets to go home. Continued prayers for him and his family. Please continue to update us.


----------



## NHAnn

He's home!!   
They are getting settled tonight and I hope to have more to report tomorrow.

We're just all so happy and grateful that they are together as a family for the rest of this journey!!


----------



## Dan Murphy

Wonderful, Ann.    The whole family must be so relieved and thankful.    Continuing to keep Avery and family in prayer.


----------



## marymargaret22

I am so happy for you and your family. we will keep you and your family in our prayers.


----------



## NancyIL

That's wonderful news, Ann!


----------



## Deesknee

What a wonderful bit of news! Prayers continue here at my home. God Bless you all, especially  Avery.


----------



## TruBlu

Avery ROCKS!!! 
I am so happy for you all!!!


----------



## NHAnn

An article in a big NH newspaper today about my favorite superhero!!!

http://www.unionleader.com/article.aspx?headline=After+3-month+fight%2c+he%27s+home&articleId=3d347314-ada3-4277-828b-75284dadc491


----------



## Deesknee

Ann, that is a very nice article. Avery is very lucky to have such a wonderful support system. His parents sound so grounded. How wonderfully optomistic. Prayers for them all.


----------



## Mackey Mouse

Ann.....I am so happy for all of you.. Way to go Avery.. 

Read the article and thought what an amazing time he had, all of you for that matter.. Now keep him healthy and go back and kick that leukeumia the heck out of there.   

Right now just enjoy him being home and that sweet face.   Hugs all around to you and your family Ann..


----------



## Ava31

That's wonderful!  Your family must be over the moon.


----------



## JunieJay

I'm so happy that sweet little boy is home where he belongs.  This family is an inspiration to us all!


----------



## diz8297

God bless you all.  May God continue to hold Avery in his hand.


----------



## NHAnn

Saturday night a spaghetti dinner/auction was held for Avery's family.  The Superhero himself, with both parents and sisters made a brief surprise appearance.  It was great for them, and all of us, that they were together as a family.  They could not stay long, but I wanted to share this pic of Avery, his daddy, and his Grampa (my DH)  






Avery continues this week with a couple of "day trips" to DHMC for dressing change on his back and some chemo and checkups.  
I'll keep you posted!!


----------



## safetymom

That is wonderful that you were all able to go.  Thanks for sharing the great news.


----------



## Saphire

What handsome guys, all three of them! Avery has the most beautiful smile.


----------



## snappy

What a wonderful picture of the boys.  Did you take it, Ann? Three very handsome men.

It is wonderful that he is home. Avery still has a lot of healing to do, but it will be so much easier to do it when he can sleep in his own bed.

What a strong family you have.


----------



## j's m

It makes me cry to see his beautiful smile after all he's been through. What a brave little boy. And the other two are cute, too.  Thanks for sharing.


----------



## Belle1997

Thanks for sharing, nice to have pics of the people we are praying for.
It is truly a miracle he made it home. Now to keep praying for his cure.


----------



## NHAnn

That smile sure is something, isn't it?  He got a tad overwhelmed by the crowd (there were over 200 people there) and the emotion of the crowd (as did his parents and sisters too) but they stayed for awhile...and yes snappy,  I caught Grampa with DS and Avery after they pulled his little stroller thing off into a little alcove for a breather.


----------



## Mickeyfaniam

Nice article Ann and great picture!!  
So happy he is home and doing well.

and Continuing to pray for Avery & family


----------



## TruBlu

What a beautiful family you have Ann!!!  Avery is adorable!!!


----------



## NHAnn

I saw my little hero and his sisters tonight, all are doing well   

Tuesday he goes in for a skin graft procedure, taking skin from his leg to put over the wound which is healing up nicely in his back, but they had to take so much tissue/skin to get the abcessed stuff underneath, he needs a graft.  They want this done and healed up before he starts a more intensive course of chemo in about 6 weeks.  They'll knock his immune system out again, so we are hoping he regains and builds as much strength as possible before that to withstand infections.

I thank you all again for keeping him in your prayers!


----------



## Mackey Mouse

God love him... that chemo sure knocks the heck out of people, grown ups as well as the little ones.   When I think of the little ones going through what DH has gone through, it makes me so sad....

Keep being strong Avery and get through these next obstacles and onto knocking this disease out of your body with the next round... Hugs to you Ann.... he is still in my prayers.. Love the pic, what a smile on that sweetie.....


----------



## snappy

That's a lot of surgery, Ann, for such a little guy.  However, as you know, I now sing the praises of plastic surgery.  They are not just artists or cosmetic guys, but very good surgeons if you get the right one.  I put the good ones on a par with any great surgeon.

I'll keep him in my thoughts and prayers through this so he can heal and get on to kicking some serious cancer butt.


----------



## NHAnn

Avery had a skin graft yesterday, they took about an 8x3 " piece from his leg to put over his back where the big abcess removal was.  He tolerated it well and insisted on visiting all his buddies in various parts of the hospital after coming out of recovery in day surgery.  Some pain as to be expected on the leg where they took the skin.  Ouch. But he's home and doing well


----------



## Mickeyfaniam

Glad to hear he got to go home yesterday Ann  
continued prayers....


----------



## annrae

Hi Ann:  So happy to hear that Avery was able to go home yesterday.  He is such a trooper and his strength as well as your strength is coming from "somewhere out there."  

I'm glad your mammogram went well, Ann.  Have a good week - hugs, Barbara


----------



## Deesknee

I haven't been on the boards much lately, but sooooo soooo happy to read Avery is doing so well. Continued prayers. What a beautiful sight in that picture....Talk about a picture is worth a thousand words. God bless you all!!!


----------



## Saphire

Just checking in to see how little Avery is doing at home. Hope all is well, Ann.


----------



## NHAnn

Thanks for asking!  All is going well...crazy busy of course, but well.  
Avery had the vacuum thing removed from the incision in his back, and skin grafted from his leg to close it up.  It's healing really well.  He's still doing outpatient chemo on a "maintenance" level every 10 -12 days or so, and has some oral stuff he's taking at home.  This is all going pretty well, he's building up his strength (I guess we all are   ) and in mid-April he will begin an 8 week more intensive chemo regimen.  His immune system will basically get knocked out again.  IF it all goes well with no setbacks (infections like last time) at the end of that 8 weeks he will be on a low level maintenance and monitoring phase for another 2-3 years.  That phase basically "trains" the marrow to not make any more leukemic cells....and hopefully by the time he's in middle school this will be a long ago memory     His sisters are thrilled that he is home again, though they are all adjusting to the "new normal"


----------



## Mackey Mouse

I am so glad that all is moving forward Ann and will keep Avery in my prayers... Hopefully when they boost up the chemo, there will be no issues, I am praying for that as well.. 

Hugs to you all.. Spring is coming!!!!!!!!


----------



## harleygirl

As always the Dis has someone who can help.  My boss just found out Fri that he has Leukemia.  We are all in Shock mode.  I was surfing about to start a thread myself and happened on yours.  I read your first entry and came here to say hello.  now I'll go catch up. thank goodness for the dis!


----------



## NHAnn

HArleygirl, there are many types of luekemia...childhood types can be very different from adult.  

I have some websites bookmarked, if you want/need any direction  depending on which type your boss has.  

Hang in there


----------



## harleygirl

thank you

he came in today and we all had our opportunity to pump him up, and surprisingly he isn't really phased.  He says he knows we think he is crazy but he is just not worried.  He isnt looking forward to what is to come, but he isnt scared.  So that is one step in the right direction, he has a positive attitude. He finds out Tues what form he has and from there what method of treatment, I guess...thanks for yoru kind words and for putting your story out here for others to find and draw strength from 

hugs for avery


----------



## TruBlu

How's our little guy this week Ann?  We are still praying for him!  DS5 (Cam) is still planning that play date!


----------



## Towncrier

I have continue to pray for Avery and for his family. And I get daily updates from Caring Bridge (which I look forward to with great anticipation). It sounds like your little man is turning the corner and doing remarkably.

Continue prayers for Avery, for his family and friends, and for his caregivers.


----------



## NHAnn

Hey Towncrier, good to see you!  And thank you (as well as EVERYONE here, for the continued prayers and support). 

 Avery is doing really well, the back is healing, he's building up strength (while on a mild maintenance oral chemo)  In a couple of weeks  he will start up an intensive 60 days of chemo. That will be a challenge as the immune system will be knocked out again.  But we're all feeling ready to get on with this phase of the treatment.  He's a real trooper.

TruBlu...give your little guy a hug !  So sweet!!


----------



## Mackey Mouse

Hi Ann.. 

Just checking in on Avery.  Hope all is going well with him, we all know chemo is no fun, but necessary to knock that Cancer out of there.. 

Do keep us updated..  

Hugs to you and yours.


----------



## NHAnn

Avery and his whole family came for a visit Saturday morning.  They all amaze and inspire me, all 5 of them.  Avery's skin graft on his back  is healing well, the harvest site on his leg is bothersone to him but also healing well. His hair is a little thicker but that will disppear once the next chemo phase starts up.   On Friday the 13th   he goes to DHMC for a busy day....the port installed in his chest, his first "delayed intensification phase" chemo treatment, and a check with plastic surgery on his graft.  The 60 day phase not sure how often the treatments are during the 60 days)  will be outpatient assuming/praying that he remains infection free.  

I'll keep you posted!!


----------



## Deesknee

Happy to hear he is doing well. Prayers continue from my home.


----------



## NHAnn

Today Avery spent the day at the hospital.   He had his pic line removed, anda  port installed for chemo delivery.  HE also had his first dose of this next intensive phase of chemo.  This will be a critical 60-90 days...to get the chemo and remain infection free.  If it goes without any complications he will then in a maintenance/monitoring phase for a couple of years before being considred "cured" .   He is home tonight and doing well


----------



## Deesknee

Just checking in. I'm glad to hear Avery is home and doing well. Prayers continue.


----------



## TruBlu

Ann,
The Easter picture made me cry - tears of joy this time!  I called my boys in to see it and they cheered and danced around.  We are so thankful that he is doing better.  We are still praying for you all!


----------



## Mackey Mouse

I am glad that they put the port in.. it does make it easier on the patient to receive the chemo.    We will pray him through this, I know we will. 

Hugs to you Ann, know we are there for you.


----------



## NHAnn

Avery's first 2 weeks of the "delayed intensification" phase have gone well.  
He did have a migraine headache side effect, but controlled with tylenol/codiene and ibuprofen.  HIs spirits are great as are his parents and sisters       The next several weeks as his white blood counts drop will be critical...we will keep supporting his amazing spirit with our prayers and positive thoughts!

Tomorrow night we are attending a big "Bald is Beautiful" party.  It started as a fundraiser idea for the family ...but will really be a celebration of the journey so far.  The kids will not be there, it'll be an adult evening....family, friends, coworkers of DS and DIL and extended family. There will be a DJ but the real entertainment will be head shaving!  It started as a joke when a friend of DIL's, who is coordinating some fundraiseres for them, suggested a fundraising-head-shaving party to honor and support Avery.  DH snorted and said "well I wouldn't shave my head for less than two grand. "   SOme of his old college frat buddies heard about it and lo and behold...more than $2K has been pledged for DH to shave his head.  So tomorrow is the big night.


----------



## mommasita

Glad to hear that it is going well with Avery so far..

What  a splendid evening that sounds like. For a fantastic cause indeed..Isn't it wonderful what they have raised.

Hugs to your family


----------



## NHAnn

Bald is beautiful!

DH and youngest son (Avery's uncle) are 4th and third from left, standing.  Two on left are friends of DS, on right the 5th is SIL, my stepdaughters's DH, nd a family friend.  Kneeling is one of DH's college frat brothers who aprticipated too!





A close up of DH ..."after":  





This was an adult only evening but Avery was there in a video clip shown as part of slide show...singing a recent original song composition:  
"Wheeeeere...oooh wheeere...is my haaaaair?!?!"


----------



## chip91

NH Ann, I just read through your journey, prayers are with your entire crew...


----------



## mommasita

Love the pictures. WHat a great thing they did.


----------



## Towncrier

Thanks for the photos and the update. I have been reading the daily entries in Avery's journal and have continued to keep him and your entire family in my thoughts and prayers. And please make sure to tell all those newly bald guys to make sure to wear a hat when they are outside. Trust me. I speak from experience.


----------



## KPeveler

Ann - how is avery?


----------



## Mackey Mouse

Yes I agree, we need an update.. Love the pictures of the guys shaving their head.. too funny Ann.. 

You have to keep your sense of humor when battling this disease.. Hugs to you and yours..


----------



## Deesknee

Just checking to see how Avery is doing.


----------



## KPeveler

Ann - I am going to hope that no news is good news.  Hope to hear from you soon.  you're and your family are still in our thoughts and prayers


----------



## MerryPoppins

I subscribe to Avery's CaringBridge page.  His journal entry for today says that his blood count is too low even after the platelets he got last week.  So he's going to need a blood transfusion.  But overall he seems to be doing well and they continue to "keep moving upward".  Avery said the trip to the hospital was boring.   Recent entries seem to show that overall he's been acting more like himself, but the chemo treatments sort of take it out of him.  

I keep praying for his continued good spirits and excellent responses to the treatment.


----------



## Towncrier

I'm also subscribed to Avery's CaringBridge page and the daily emails help remind me to keep praying for the little guy and for the family. Keep the faith, Ann.


----------



## NHAnn

Hi all....thank you for all your continued thoughts and wishes.  
I have been busy this last month or two, at work and also with issues surrounding my parents in Massachusetts, so have been neglecting keeping you up on Avery's progress.

Avery's been having to have transfusions, his red blood and platelet counts are not coming up as fast as they'd like, but the neutrofils and WBC are OK...
he is in good spirits and the family is hanging in there, keeping an eye ont eh light at the end of the tunnel, hoping to get into maintenance phase in not too many more weeks!!


----------



## Mackey Mouse

Hugs Ann... we will keep him in our prayers and are looking forward with you all to the light at the end of the tunnel.. 

Hope your parents are doing ok..


----------



## TruBlu

Does anyone have a link for Avery's caringbridge site?  I'm not sure what happened to my link.

Thanks!!
Tracey


----------



## MerryPoppins

I sent you a PM TruBlu.


----------



## TruBlu

MerryPoppins said:


> I sent you a PM TruBlu.


Thank you!  I was spelling it wrong.


----------



## NHAnn

Hi everyone!   

Just wanted to share that we had dinner with Avery & family last night!!
It has been weeks since we've seen them, they've been keeping him pretty isolated as he is at significant risk of infection still.  But it was a rainy day and they felt bored and cooped up...and we have all been healthy and don't mind being doused in Purell at the threshold so when they suggested we come for dinner and a visit we jumped at the chance.  
Avery is in great spirits and feeling good.  The counts are moving int he right direction, just a little slower than we'd like to see, but it's a postive anyway!!
We really had a great time, Avery received a magic kit and has been working hard at perfecting a few tricks...the kit has a cape and hat and props and he put on a little show for us.   His sisters are a joy as usual ...Delaney (almost 4) has changed identities with a little girl named Angela.  Yep, Angela is the new family member, she looks just like Delaney but says that Delaney is off somewhere far away with her (Angela's) family.  So we have a new grandchild, Angela  And she thinks this family is much better than her original one.


----------



## a1tinkfans

I just came across this thread and want to say that I will include Avery in my prayers!  
I hope that he is getting stronger, chemo is so difficult for an adult, for a child to have to deal with is heartbreaking!
God Bless to your whole family!!


----------



## Mackey Mouse

Ann, so glad that he is doing well, although a little slow from what I am reading, but hey, it is working and that is a good thing.. 

I was LOL about the Purell.....everytime the little Prince comes to our house or we go to his, we have to scrub down in Purell.....first baby and he was preemie so whatever she needs us to do to get our hands on him, we will.. I love being a grandmother....

Hugs Ann and prayers for Avery and your new grandchild, Angela


----------



## NHAnn

Well, Avery's blood counts weren't quite as good as they'd hoped for today, he did not quite make the cutoff to go into the maintenance phase, but made great improvements since last blood draw last week, so he is moving in the right direction.  They'll draw again Tuesday. (The Visiting Nurse does this)  If the counts meet the requirrements, he'll go up to the hospital the folowing day for a spinal chemo and then will be officially in maintenance phase!


----------



## Deesknee

Lots of prayers for great counts on Tuesday!

Dee


----------



## Philagoofy

All good thoughts to your little guy Avery.  I wish him well and all of his family the strength & encouragement & positive thoughts to get through this.


----------



## NHAnn

Great news today!!
Avery's lab counts were SUPER today and he is officially starts the "maintenance" phase of his chemo treatment tomorrow!!
   

He still has a long road of treatment and monitoring ahead of him (a couple of years) but it will be less frequent and less difficult physically as time goes on.

I thank you for being so supportive of him, of me and the rest of our family....
I'll continue to keep you posted!!


----------



## annrae

How wonderful Ann!  This is awesome news for Avery and all of you!  There definitely is an angel on Avery's shoulder taking care of him!  Hugs to all of you!  Barbara


----------



## MerryPoppins

That's amazing news!  I'm so happy for him and for your whole family.  You'll all remain in my prayers.


----------



## snappy

Best news I heard all day!!!  Thanks for posting the update, you sure brightened my day and I know yours is brighter too.  I am glad he is back on track.


----------



## Philagoofy

Great news.  Good thoughts & best wishes for continued improvement.


----------



## diz8297

Wonderful news!!  Give him a hug from his Dis friends!!  I'll keep him in my prayers for continued and full recovery!!!!


----------



## Mackey Mouse

Woohoo for Avery... we have him in our prayers as he goes forward to recovery... 

Hugs to you Ann!!!!


----------



## Deesknee

Ohh! What wonderful news! You made my day! Continued prayers for him and his very blessed family!!!


----------



## mommasita

Fantastic..


----------



## antmaril

Great news


----------



## rjeash

I just came across your post.  I have tears of joy and chills at the wonderful news.  Praying that Avery continues on to a happy, healthy wonderful life.

Praise God!!!


----------



## Deesknee

Just looking for my monthly Avery fix. Praying he is still having wonderful progress.


----------



## antmaril

Great news  

Best wishes to all of you.


----------



## TruBlu

My DS (Cameron) was asking about Avery last night.  How is he doing?  He's been on my mind a lot as we are preparing for Cam to go to Kindergarten in a few weeks.  Hope all is well!


----------



## NHAnn

Avery is doing great these days!  We are so blessed. We spent some time with them Sunday afternoon.  He goes to the hospital on a day trip monthly now for chemo thru his port and has oral meds daily at home.  But the dosages and side effects are much less intense than the prior phase.  He will have spinal taps w/chemo every three months.  This "maintenance" phase will take 2 + years.  He is fnished with PT and OT.  It is such a joy to see him running and playing with his listtle sisters.  His hair is growing back.  He's a remarkable little boy, the whole family is remarkable truly.  He just recently started back to "school"  (a MOntessori pre-school) a couple of mornings a week.  A bit of an adjustment as he has not been since last Thanksgiving, but it's going well.  They have decided to keep him there for kindergarten in September, rather than go to the public kindergarten.  The scheduling logistics work better for their needs (public K is 5 days a week for 1/2 day, at his school it is 2 or 3 full days.  I will try to get some pics posted here for you all soon!


----------



## Mickeyfaniam

Truely wonderful news Ann!


----------



## TruBlu

Truly an answered prayer.  We are so happy for you all!


----------



## NHAnn

AVery's white blood counts have dropped too low the last couple of weeks (after being "too high"    for a couple of weeks).  So although he still feels great and is in wonderful spirits, he is at risk for infection so on "house arrest"...no school or public places...they suspended all the chemo meds for the time being.  DIL is "bleaching and Purell-ing" everything in sight!

We are hoping and praying the counts will recover in time to go forward with his big plans for a 6th birthday party at the end of the month!!


----------



## KPeveler

hugs and prayers coming your way - hope everything is okay!


----------



## NHAnn

Counts were back on the low end of optimal range today, that's a good sign.     Today was at 570 on the Absolute Neutrofil Count, optimal is 500-1500.  Last draw he was 34    So he was able to resume his chemo today.


----------



## Mackey Mouse

Oh Ann.......he is doing a great job battling.. hugs and he is in my prayers..


----------



## FSUDisneyGirl

I just read this entire thread...all tonight!  

Just wanted to say I am so happy that he is doing so much better than last year!  Avery and his family  are in my prayers as well!


----------



## NHAnn

aw, thank you Erin!  
Avery celebrated his 6th birthday last week!!   
There were some dark days last winter when we feared there would not be another birthday.  But hope and strength prevailed.  He's doing really well though treatment will continue another couple of years.


----------



## NHAnn

TruBlu...saw your post on Avery's Caringbridge site      Thanks for your support!!

Avery's blood counts were just right on this week!!      Not too high and not too low!!


Happy Halloween to all!


----------



## TruBlu

NHAnn said:


> TruBlu...saw your post on Avery's Caringbridge site      Thanks for your support!!
> 
> Avery's blood counts were just right on this week!!      Not too high and not too low!!
> 
> 
> Happy Halloween to all!


Since my entire family has been stalking the little guy for a year now, I thought I'd post something.    He really is looking great!  What an amazing little man!


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## NHAnn

Hopefully just a bump in the road...Avery's spinal tap this week (he has them every 3 months) showed a couple of cells that shouldn't be there.  Not nearly enough to indicate relapse, and they say it could be "nothing"-- like a funky sample or something.  They will draw again in one month.  We will stay busy, enjoy the holidays and not "bleed before we're shot" but cranking up the prayers that it is "nothing"...


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## JunieJay

I absolutely will keep Avery in my prayers, Ann.  I'm sure its nothing, just a fluke.


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## NHAnn

ALL CLEAR on Avery's spinal tap today!!      SO we stay on track with his current treatment, no relapse, we are so happy and grateful!!


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## mommasita

NHAnn said:


> ALL CLEAR on Avery's spinal tap today!!      SO we stay on track with his current treatment, no relapse, we are so happy and grateful!!



Thank God


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## KPeveler

WONDERFUL!!!!!!!

Hugs and prayers all around!!!!


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## NHAnn

It has been many months since I updated here...I apologize....lots going on in life....

but am happy to report with Avery the news continues to be generally very positive.  He turned 7 yesterday, and at Thanksgiving we'll be at the 2 year mark since diagnosis.  If all goes well he has 16 months left of treatment.
He continues on oral meds daily, inlcuding a monthly dose of steroids that make him (as his mom says) "a little boy with PMS"     -mood swings, food cravings etc for a few days.  He has bi-weekly blood draws and bi-monthly spinal taps.  His blood counts fluctuate, they tinker with dosages, it fluctuates some more.  A roller coaster still-- but the hills are shorter, the drops less steep, and the curves are not as sharp as the first year. 
He started first grade a month ago, and is playing soccer.   

He's also turning into quite the dynamic little public speaker, has talked to large groups at fundraisers for CHaD (Children's Hospital at Dartmouth) and cancer awareness type events.   This is very interesting, as before his illness he was very reserved.

He had a Make A Wish trip to Orlando in June, we were able to join them for a few days of it....an amazing time....
the best for me was at Star Wars weekend at HS, he was chosen for the Jedi training ...it was very moving and symbolic for me to see him on the stage battling Darth Vader   

Thank you all for your continued prayers and support!!


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## TruBlu

FANTASTIC update, Ann.  

We were at Disney this past June, too.  Too bad Cameron and Avery didn't run into each other.  Cam would have loved to have met his hero in person.


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## safetymom

Thanks for the update.  I am glad to hear the positive news.


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## antmaril

Wonderful news!  Very glad to hear it!


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## pumba

Ann I always come and see what is up with Avery ......this is great news to hear......Thanks for updating us


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## Towncrier

It's great to hear from you, especially with such wonderful news. I have been following Avery's progress on caringbridge.com and have kept him at the top of my prayer list. You've got quite a grandson there.


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## wuv tigger

thanks for the update. 

Are you able to post the caringbridge addy?


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## NHAnn

My goodness, I have been remiss in updating this thread, I cannot believe it's been more than a year.

The last month has been a real roller coaster for me...I lost my father    Although he was 86 and had been battling early stage Alzheimer's it was quite sudden/unexpected.

but I am VERY happy to post the following regarding Avery....

and express my thanks (and on behalf of Avery too) for all the prayers and support shown by my DIS friends

_Avery is CANCER FREE! 

After almost four years, Avery has finally finished his chemotherapy and other treatments, and now is considered cancer free. While we could never repay all of you for the kindness, support and love that you have shown us during this time, we would really love to share in a celebration of thanks with all of you. 

Please join us on March 19th, at Pat's Peak at 5:00 p.m., for a special Celebration of Thanks! We will have music, dancing, cake, and lots of family fun, celebrating this new journey we are now on, and to try and express our thanks and gratefulness to each of you for all you have meant to us.

There have been many people who have shared in our journey, many of whom we have never met...please spread the word that ALL are invited. If you have friends who have been part of our journey, encourage them to come! If for some reason, either you or someone you know, is unable to attend in person, we will have a special message board to post letters, cards or emails, if anyone would like to send them ahead of time. You can mail things for the message board to 341 Plummer Hill Rd, Henniker, NH 03242, or email at forrestallb@yahoo.com 

What can you bring? If you'd like to, we'd love some help with snacks and desserts! If your last name starts with A-M, you could bring a munchie or appetizer, and if your last name starts with N-Z, you could bring a dessert. If you have your heart set on bringing something specific just let us know when you RSVP- we won't hold you to your letter! The restaurant at Pat's Peak, as well as the cash bar, will be open for anyone who would like to purchase meals or drinks during the party.

What else do you need to know? Nazzy, the popular DJ from WJYY in Concord, will be mc'ing this great event, so you can bet that he and Avery have some fun contests, games and mischief cooked up! Be ready for fun!

During his treatment, Avery has become a big supporter of CHaD, and has really taken this time to give back, in thanks for all CHaD has done for us. To support the Children's Hospital at Dartmouth (CHaD) and Kristen's Gift (a nonprofit charity that provides support to the pediatric oncology department at CHaD) consider creating a snowboard or ski "team", and raising money for CHaD! During the day of March 19th, Pat's Peak will be hosting a special fundraiser in celebration of Avery's journey. For more information on this special event, or to create or donate to a team, visit www.skiforkristen.org

Please RSVP to our special family fun night, a celebration of thanks! We hope to see you there, to say THANK YOU for ALL YOU HAVE DONE!!! We could never have done this without you!_


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## Jake & Crew

Just checking in after a year and so happy to see your wonderful post! Hope you had a terrific celebration....I'm sure it was lots of  and 
I am celebrating with you in spirit.......Go AVERY!!!!


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## j's m

Wow, just saw your latest update and it brought tears to my eyes. I am so happy for Avery and your family. May he continue to be cancer free and now live a healthy life.  

Sorry about your father.


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## Dan Murphy

Wonderful news on Avery, Ann.  Condolences to you and family on dad.


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## MerryPoppins

Sorry to hear about your dad, but thrilled to hear about Avery.  What a blessing.


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## NHAnn

Well, after 18+ months of remission, I'm sad to report that Avery's leukemia has returned.  We'll know more in the next few days as to whether it originates in blood, nervous system, or bone marrow....prognosis is much better on  the first two....we shall see.

They have a CaringBridge.org site.....if you go to that site it gives you the option to enter a name for an individual's page/site...it is:   averyforrestall  if you want to see the whole journey, updates and the guestbook.

Thanks to all the DISers who are so generous with prayers and support!


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## Dan Murphy

Good wishes and prayers again for little Avery, Ann.  He beat it once, he'll do it again. 's


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## quasar4legs

NHAnn said:


> Well, after 18+ months of remission, I'm sad to report that Avery's leukemia has returned.  We'll know more in the next few days as to whether it originates in blood, nervous system, or bone marrow....prognosis is much better on  the first two....we shall see.
> 
> They have a CaringBridge.org site.....if you go to that site it gives you the option to enter a name for an individual's page/site...it is:   averyforrestall  if you want to see the whole journey, updates and the guestbook.
> 
> Thanks to all the DISers who are so generous with prayers and support!



I am so sorry that Avery is facing this battle again.

Your family is in my thoughts

Quasar


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## Pinnie

Stormin the heavens with prayers for Avery and his family.

pinnie


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## luvmarypoppins

Prayers for your precious grandson.


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## marymargaret22

Praying for your whole family.


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## Deesknee

renewed prayers for Avery & all of you.


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## Schmeck

If the family is interested, Lucy's Love Bus gives grant money to support alternative therapies to provide comfort and relief to children undergoing cancer treatment.  From your posts, it sounds like you are in the general area that the Love Bus covers.  

http://www.lucyslovebus.org/

My thoughts and prayers are with Avery and his entire family!


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## snappy

Per a post on caringbridge, it is not in the bone marrow, praise the Lord!


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## Schmeck

snappy, thank you for letting us know!


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## j's m

Ann, more prayers coming Avery's way.  

Snappy, thanks for your post in keeping us updated.


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## MerryPoppins

I just found out about Avery today.  I'm so sorry, but thankful that the news is better than it could have been.  Renewed prayers for the little friend I have never met face to face.  But I hold him close in my heart.


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## luvsmickeymouse

I just read about the return of Avery's leukemia.  I am sorry and I hope he is in remission very soon.  I went over to caringbridge and posted there as well.


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## TruBlu

Hi Ann 

I have been sick and away from The DIS boards for about 8 months.  Today is the first day I've been on sice May.  I am so sad to see this.  I will definitely add sweet Avery to my prayer list again.


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## luvmarypoppins

Just read Averys recent caring bridge page.

He is on some heavy duty chemo and dealing with mouth sore issues too.

Such a brave young man and always has a great attitude.

My parayers are with him.


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