Chemo starts today
Today is the dreaded day....
Lyla starts 8 days of immune suppressant and chemotherapy. The goal of these 8 days is to completely wipe out her immune system, kill all her mature white blood cells and kill stem cells in her bone marrow. The bone marrow is where cell growth starts and once mature they travel through your blood stream preventing infection and attacking foreign matter. Because Lyla is receiving foreign stem cells (via cord blood), we don't want her body to attack the new cells and there needs to be room in her bone marrow for the new stem cells to find a home and start growing.
The bad news is the drugs are pretry toxic, she's receiving very high dosage and the side effects are pretty bad mostly in the short term and some long term. She's going to be sick for several weeks, will lose her hair and will likely be infertile.
On the plus side, it's amazing these drugs even exist and they have been proven to work. Even in recent years the transplant chemo regimen has changed enough to dramatically improve chances of a successful stem cell transplant and lowered mortality rates as well. Success rates are near 85% now and Lyla's is even higher because she has a perfect cord blood match!
The highest risk going into this stage of her treatment is infection - viral, bacterial, and fungal. If she gets any of these it means her body can't fight them since she will have no white cells and they might get worse and can lead to serious complications. The doctors are very proactive by doing daily testing and giving antibiotics immediately if needed. Steve and I are also very careful to wash our hands a lot and stay healthy. Luckily it's summer and there are less viruses going around. Another piece of good news is that Lyla has not been exposed to a lot of viruses that sit dormant In the body and tend to make an appearance during transplant. We were amazed by this news because she a cold for 5 straight months while at day care.
Steve and I are still so optimistic and I do feel like we are being strong and make a great team, but the next month is going to be difficult watching our precious girl feel so sick and not be able to fully explain to her that everything will be ok and she's going to live a long, happy life after this is all over.
Thanks again to our wonderful friends and family for all your love and kind words.
Comments (11)
Dear Helen and Stephen. I have been thinking of you all day knowing that the chemo was about to start. Just been speaking to James, LJ on nights so asleep, to ask if any news. Just want to send all our love and to let you know we are thinking of you and dear little Lyla all the time. Thank you for the update. All our love Christine xxxxxxxx
You are all amazing and wonderful!! Thinking of you everyday. Reuben has done some messy play art work for his pal Lyla to brighten up her room. Sending lots of love and big hugs xxx
Little Lyla is so strong already just like her parents! We will be thinking of you three. Sending all our love and can't wait to see that cheeky smile of hers on FaceTime. Marí n Andy xxxx
Hey Guys. Thinking of you, as always, during this difficult time. Hoping and praying for you all that all goes well. Keep us posted. Lots of love and hugs. Lauren & Joe Xxxxx
Your whole family is in my thoughts and prayers as you navigate this journey. Love to you all, especially adorable Lyla Rose!
Oh. My heart aches for you. It doesn't seem real when she was so playful when you ft yesterday. You are doing brilliantly, staying positive and strong for Lyla. Take strength from Lyla who because she feels so loved will continue to smile thro all and sundry. Take care of each other. All my love, blow Lyla a big kiss too. nNan xxx xxx XXX
You both seem so strong and optimistic, you're a credit to your girl and Lyla looks so gorgeous and happy in your pictures. What an amazing family, cannot imagine what you are all going to go through but you can totally see your absolute love for her and her future through it all. Lots of love from Torquay, we are sending some art work soon. Love Hannah and family xxxx
I want to make ten thousand crying faces right here. Poor baby, I want to kiss and hug her and make it all better. :( You are still being so amazing, Helen. WAY more than I could say for myself in your situation! It was great talking to you yesterday! Hugs and tears and more hugs!!!!!!!!
We love you guys and are sending prayers for that sweet, strong girl and you two. Can't imagine how difficult this must be to watch her suffering, just hope you have some peace and continued strength. Our hearts are with you all.
Thinking of you often and praying for sweet Lyla. She is so lucky to have such amazing and strong parents to get her through this. Love you!! The 3 of you are truly inspiring. Love you all xoxox
Sending lots of love your way! Thinking of you three lots!