Day +8 - Hanging in there
It’s national coloring day so seems fit to send a HUGE thank you to everyone who has sent drawings, gifts, and well wishes to Lyla! We are amazed by the out pouring of love and creativity! We are still working on putting them all up so will post some pics soon :)
Lyla has declined the last few days, as expected, but she’s still doing well. She has her moments where you can tell she’s in pain but she still smiles every time the door opens and lets out a little squeal to whoever is walking in. Her white blood cell count has dropped to zero and the impact of chemo is hitting her. The hope is for her white blood cells to slowly increase and be mostly donor cells. We will find out on August 15th the percentage of donor vs Lyla’s cells. Lyla is only drinking a little bit of formula now so the mucositis is probably causing a lot of pain (imagine lots of canker sores in mouth and throat). Her red blood cells and platelets are also down so she received transfusions to get those levels back up. The main goal right now is to keep her comfortable and happy through bumps in morphine and to manage all the other side effects through a constant flow of medications. She receives at least 20 doses of medicine per day so she always has five IV lines going and nurses are frequently in here. Luckily Lyla loves the company and lucky for us they are able to untangle her constant web of IV tubes! Lyla’s hair is also starting to fall out 😢 Starting this afternoon, it’s coming out by the handfuls so she will probably be hairless in a few days. Although the least important thing, it’s still hard as a mom and especially since we’ve never seen Lyla without hair. One of the medications to prevent graft versus host disease actually causes hair growth (all over the body!) so the doctors have assured that Lyla is going to be a cute, hairy monkey before we know it! 🙉
Comments (10)
Dear Helen and Steve, my heart aches for you . Stay strong, stay positive, things will improve. Lyla is an absolute trooper. Take strength from her. God bless you all. You are constantly in my thoughts only wish I could do more to help. All my love. XXX. XXX. XXX
I can't even imagine what you guys are going through! But please know my heart goes out to you and I think about you everyday! We have pictures from the baby room to send you. We are keeping you to keep up the room! ❤ love the updates 😊 thank you for taking your time time to post them!!!
😥 Must be so tough for you guys!!! Could you please give Super-Lyla a big kiss from us all 😘 Love you all lots and thanks again for keeping us all updated Helen xxxxxxxxx
Good thing she's so darn cute! I smile when I picture her bald and/or hairy. Just cute cute cute! Love and hugs for all of you, Aunt Susan
Lyla is so amazing, we love her so much. Emma, Marco and Lauren xx
She is my hero - a little warrior. Love you Lyla and thinking of you every day! X -Auntie Tati
You all are in our constant thoughts and prayers -- I am amazed by your strength and just love hearing what a champ Lyla is and how her happiness and spirit are shining through, despite everything she is going through. Sweet Lyla undoubtedly gets her strength and comfort from her loving parents and family! All our love to you guys.
She is such a tough little girl and without a doubt she will be the cutest little bald baby in the whole place!! Leave some room on the wall for two more drawings...Sofia and Niko are working in theirs and we will send it when we return from vacation. Hang in there...you guys are so amazing!
Father God we ask that you give strength to Lovely Lyla and to her parents . That you grow the cells she needs , we know your hand is over her protecting her. You are the ultimate healer God and we thank you for what you're doing and what you will do in Lylas life, in Jesus name we pray amen 🙏
💋💋💋💋💋I'm crying....💋💋💋💋💋💋 best wishes and may you feel peace through all the prayers that are being offered to you and her.