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-   -   Newly diagnosed with Leukemia (http://www.disboards.com/showthread.php?t=3241411)

starearedkid 02-26-2014 07:18 PM

Newly diagnosed with Leukemia
 
My daughter Reese who is 2 and a half was just diagnosed with leukemia a little over a month ago. Right now we are still in the completely "overwhelmed/exhausted phase." I am taking a leave from work until the end of April. She finished induction chemo and is currently in remission--however, during that time the port site got infected and had to be removed. It is taking awhile to heal and her ANC (immunity numbers) are very low so we can't start the next round of chemo, we can't place the new port and we have been housebound for risk of getting infection/sick. So I have spent a LOT of time online since the only time we have been out of the house is for doctor's appointments. And of course my husband has to make up time since he is taking days off for doctors appointments--so he has been getting home later than normal. And by then I am just way too tired to even bother to go out.

I am still waiting for the "new normal" to start.

SMD 02-26-2014 08:28 PM

So sorry to hear about your daughter.

One of our neighbors has been treated for Leukemia for a year now, and your story sounds almost identical. Delayed chemo due to infections, port infections (leading to a PICC line), home confinement to prevent infections and blood and platelet tranfusions after most treatments.

Have you made friends with other moms at the hospital? Maybe you can email them when you're both stuck in pseudo-quarantine. Our neighbor is friends with some other moms from the hospital on Facebook, I see them commenting on each other's posts when their kids are going through treatments they seem really supportive of each other.

starearedkid 02-27-2014 07:42 AM

Quote:

Originally Posted by SMD (Post 50816345)
So sorry to hear about your daughter.

One of our neighbors has been treated for Leukemia for a year now, and your story sounds almost identical. Delayed chemo due to infections, port infections (leading to a PICC line), home confinement to prevent infections and blood and platelet tranfusions after most treatments.

Have you made friends with other moms at the hospital? Maybe you can email them when you're both stuck in pseudo-quarantine. Our neighbor is friends with some other moms from the hospital on Facebook, I see them commenting on each other's posts when their kids are going through treatments they seem really supportive of each other.

Thank you for your kind words. Luckily she was able to achieve remission within induction so she has been the happiest/energetic she has been in months. She had ONE serious infection which is healing now, and why they think her immunity count is so low. I think I am going more stir crazy than my daughter---I mean there are only so many Disney Jr shows and movies that I can take on repeat. DH laughed at me this morning when I brought down 101 Dalamations--he goes "something new?" She has had Mickey Mouse Clubhouse on repeat for hours recently--I needed a change for my sanity.


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