Day +93 - Too good to be true
Earlier today we received the seal of approval to head home tomorrow, almost a week early from Lyla's big +100 mark. Unfortunately our excitement was shot down a few hours later and it looks like we will be staying at least another two weeks :( Lyla's final blood draw showed her platelets dropped significantly in the last 4 days. We even went back in to check it wasn't a bad sample but it was confirmed again. They have dropped to levels just after transplant - going from over 200k a week ago, too 100k 4 days ago and now 30k. Because all her other blood levels are good, it's likely an immunity issue - her now mature cells are creating antibodies to stop the platelets from functioning properly. This is obviously very concerning but her head doctor is confident it can be fixed with steroids. Lyla can stay out of the hospital but her levels will require close monitoring (lower than 10k can be life threatening). And, the steroids will weaken her immune system even more so going home is not an option. And unfortunately it's going to be a slow process. So.....we are settling back in for at least another two weeks. Fingers crossed Lyla's cells react to the steroids and it doesn't become a major issue.
Comments (12)
What an emotional roller coaster. Thinking good thoughts for Lyla! Love you all! Xoxo
Thank you for sharing. We are sending prayers and hugs to all of you!
Dear Helen and Stephen. As always all our love and thoughts and we are all rooting for the steroids to do their work. We are very much with you at this time. Hopefully a temporary blip. Lots of love Christine xxxxxxxx
Total emotional roller coaster. Hang in there. I'm sure in 2 weeks she will blow those platelet numbers out of the water! Love y'all.
Can imagine how deflated you must be just now. Sure this will be a temporary setback and the medics will very soon get it sorted. Turn things into positive, relieved this came to light this week whilst you are close to the hospital and not next week when you would otherwise have been a flight away. Take care of each other. XXX. XXX. XXX
Oh dear Helen, we know Lyla will re-adjust to her strong blood levels and soon you will return to AZ. Thank you for providing the update as you are always in our thoughts. Sending our love to you❤️ T~n~T
Hang in there you guys. She's a strong little girl!!!
Sending good thoughts and prayers for Lyla that her levels go back up. Thank God for those doctors monitoring her close....I am amazed by your guys' strength. Love you!
Helen and Steve, Thank you for the update. Lyla has gone through so much but she is a fighter and will survive. Our prayers go out to Lyla, wonderful family and the medical staff.
Sending Lyla love and good thoughts from Ohio. Auntie Anne
Bless you guys 😓 keep strong, you're all doing so well. Big hugs xx
Fingers are crossed for you guys!!!