Thursday, November 29, 2018

An update on Lily, Leukemia survivor, from her mother

Lily’s grandmother Carol posted today that she’s been accepted to 5 colleges, despite losing 4 years of formal schooling due to her illness and treatment. I’ve been following her story for 10 years, since Lily was 7 and I met her grandmother, aunts, and great grandmother as a blogger.
“It’s been awhile since I have updated but Lily is doing great. Last week we went to her monthly clinic visit. Her blood counts looked good. She is also feeling much better. As Deb said being off therapy agrees with her!

Her back has improved dramatically since coming off chemo and starting acupuncture. Still not sure how it works but it does. She has weaned off all of her back pain meds and even most of her neuropathy medications. Thanks Libby! This has truly been a blessing and has allowed her to do more in her weekly PT sessions and be much more active and pain free.

They also checked this month her IGG levels. This is the body’s ability to fight getting infections with antibodies (in basic terms). She has had low levels for a while and was receiving infusions monthly however the last infusion she had she had a pretty severe allergic reaction. We had truly hoped the number would get better coming off chemo.

However her IGG level was just 125 last week. Normal I believe is around 800. There is also evidence to show that the Blincyto or immunotherapy drug she took can cause long term and most likely a permanent decrease in B cells thus IGG. This will most likely mean some type of infusion either weekly or monthly. There is supposedly a different infusion, she can get that is weekly that has less reactions. Probably for the rest of her life. It isn’t unexpected but kind of a tough one to think about long term. I know we / she will get use to it and adapt. I also know she generally feels better when she gets the infusions. However as a mom, I worry.

It also throws a small wrinkle into college plans for her. Wrinkle maybe wrong word, but it adds another element to consider since we need to figure out how she will do this if she moves away. I’m sure it is possible just another thing to consider.

She has been accepted to 5 colleges and all of their nursing programs! I’m so proud of her and while it is scary at times I want her to be able spread her wings. Some of the colleges are relatively close but some others are quite a ways away. I don’t want this to be a major consideration in her decision so I know we need to get a plan in place soon.

Anyway she has an appt on Monday with the immunologist to discuss in way more detail.
Lastly she is getting her port out on Friday morning! It’s exciting to get this out. She will also be having her prior scar revised since it hasn’t healed well. It is a pretty easy surgery but still surgery and I’m sure she will be down a few days.

She has a bunch of appts over the next few weeks. The port removal. Immunologist. Ortho follow up. Endocrinology follow up. And another monthly clinic visit to the oncologist. I will try to update on the important things.

Thanks for all the support. I hope everyone had a wonderful Thanksgiving!

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