Logan and I have known for a long time how strong our little Eli is but he seems to remind us everyday what a powerful spirit he actually has. The first four days of chemo went so well even the doctors were surprised how great he was handling everything because those are typically the toughest days on patients. Today, day 5, Eli started two new chemo drugs and unfortunately the side effects are starting to catch up to him. It's possible the new chemo meds are making it tough on him but the doctors think it's probably just the first med that's finally setting in. Despite having an awful diaper rash, feeling nauseated and being completely uncomfortable, it is easy to look into Eli's eyes and see what a fighter he is. He has only cried a few times when his pain gets really bad but otherwise he'll lay in our arms and stare at us with a look that clearly says he is determined to fight as hard as he can. I know that probably sounds weird since he's only two months old but I just know something like that is going through his little mind. We couldn't be more proud of him!
Eli's doctors have been pretty confident that his specific type of SCID is called Reticular Dysgenesis but they had to wait to get his gene testing back to verify that for sure. We were informed today that the results came back and he definitely has Reticular Dysgenesis. We also learned that rather than having the typical XY chromosomes like a boy, Eli's are XYY. We held our breath as we waited to hear what this means for him but it turns out it actually won't effect him much at all except in one way: he will likely be really tall. We can handle that news for sure! We were nervous it was going to mean additional problems so we just laughed when she told us. Who knows...maybe Eli will be the first deaf NBA player! ;)
The nurse Eli has had the past 3 days came in to say bye to us this evening and looked like this:
Haha...he should technically have a mask on before coming in but we figured this was good enough!
5 days down, 3 days to go!
As each day passes I'm more convinced that Eli is a warrior! Furthermore, Liz and Logan continue to find joy and even humor in this battle. They are all magnificent!
ReplyDeletelizzie. I seriously think of you everyday. I think I check your blog 12 times every hour to see if you have updated. you logan and especially little eil are so strong! we love you.
ReplyDeleteContinuing to pray my heart out for all of you. I don't know how you are so strong. Eli definitely gets his strength from you and Logan. From my point of view it feels like you and Logan have always had to play the waiting game and all of the waiting you have done in the past has prepared you for what I am sure is the hardest patience-test ever. The Lord certainly sent Eli to the perfect parents for him.
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