Day +9 - Rock Bottom
It's been a rough day for all of us. Lyla's hair is gone now...it was falling out so fast but patchy and really itchy so the nurses shaved the rest off. Luckily I wasn't there because it would have been too difficult to watch 😢
She has also stopped eating and drinking. They are giving all her nutrition through IV. She's been getting a fever off and on all day and is in a lot of pain. Luckily she's managing to sleep some, but jerks and twitches and wakes up a lot. It's crazy how fast she's gone downhill but if this is her rock bottom than its actually not too bad compared to other kids and she should start heading back up hill in a few days. The fever can also be a sign of engraftment. Her white blood cell count is just above zero so it could be all donor cells! We hope she starts to feel better soon and the motto for the next week is "Grow cells, grow"
Comments (18)
God love Lyla, and her amazing parents AND Grandparents! You're in my thoughts and prayers daily! The tide is turning, I can feel it! 💕
You are all so amazing! Lyla is an incredible little girl and so beautiful. We think about you everyday and continue to be amazed by your strength and courage. Sending lots of love and hugs. Thank you for keeping us updated xxx
Oh Helen. Lyla still looks so gorgeous. Designer cap and all. Stay positive, stay strong. Love and hugs to sweet Lyla, you and Steve. XxX XXX. XxX
Hugs to you all!! Grow cells, grow!!
We can only imagine how hard it is. Lyla is so strong and ha amazing parents by her side. Thinking of you three and waiting for Lyla to be all smiles again! Xxx
Bless you guys, I don't know how you're doing it....keep strong and big hugs to your little warrior princess 💪🏽❤️ xx
Helen, Steve, and Lyla: It is hard to know what to say. Perhaps you have been preparing your entire lives to meet this unforeseen challenge. All I can do is offer my heartfelt encouragement and belief that the worst will soon be behind you. There may be strength to be found through the faith and love of your family, friends, and countless others supporting you in this difficult time. I love you all very much. Dad
You all have everyone's support behind you. Lyla will get through this. Grow cells, grow!
I know tough it must be for you, as parents, to see her like this. My momma heart aches for you. Just keep your head up and remember how strong and mighty your sweet little fighter is! I hope she is her cherry self again very soon! Lots of love!
My heart goes out to you, can't imagine how tough it must be to watch your baby girl suffer, but I know that strong girl is doing what she needs to do to fight through this phase. Prayers that her pain and discomfort start to subside and that she returns to her happy self soon. Love you guys!
Helen, I am so proud of you, Steve and Lyla for the courage and determination all 3 of you have shown and faced in the past, now and in the future. Yen and I are always thinking of you 3 daily. When Lyla gets older I will be sure to tell her what wonderful parents she has but is likely she will of course know that.
Hope you have a better day. Big smile to all of you. Keep smiling, it is infectious and Lyla will soon be smiling back at you. A smile is only a little thing But it means a great deal you know To one who is sad and weary And those whose spirits are low. Lyla will sense that you are ok and somehow know that all is well. GROW CELLS GROW XxX
Oh Helen...we are pulling for all of you guys. I can just feel it that this is the start of the road back for all of you. Hugs to all of you!
Lyla, there is so much hope, faith and love on your side. You are like a bright ray of sun, every time I see your picture or think of you I feel a great warmth in my heart. Your body has a lot of work to do now getting your new cells to grow and I hope you can feel us all pulling for you. Your bright, sunny, happy, feeling good self will be back real soon!
Thinking of little Lyla and sending lots of love. She is such a courageous little girl! Grow cells, grow!!!!!!
Thinking of you all, and sending love. Grow cells, grow!!! Xx
Hey Guys. Can't imagine what you're going through. Stay strong and keep going. You will get through this in the end and all will be alright. You're doing an amazing job. Keeping you all in our thoughts. Lots and lots of love. Lauren & Joe Xxxx
If I was there I would hug you and her and cry with you and kiss her sweet head and hug her and cry with you some more. 😢 I pray she does better and that all cells will grow!!!!!💋