Tuesday, July 03, 2012

Day +87

Our good news yesterday was short lived. J's adeno jumped from 200,000 copies on fri to 9,400,000 copies today. The cydofovir hasn't done a thing. They think the steroids boosted the virus, so they are putting him back on a tacro drip and getting him off the steroids. He also started on the higher dose, once a week cidofovir last night. I hope his kidneys don't get damaged. We should get his scope results today, but the visual looked good. Still praying for no gvhd so he can come off his other immunosuppressant, too. Being off immunosuppressants might give him a fighting chance.

My parents and Ethan are here for a couple of days. I thought I was holding myself together and staying strong throughout this whole thing, but when I saw my family at the airport, I wept like a little girl. I realized how much I missed Ethan and having my family together, and just the whole gravity of Jacob's condition came crashing down on me at once. I just needed someone to hold me and tell me it's all going to be ok. I didn't realize how alone I was. I know a lot of people pray for us and cheer Jacob on behind the sidelines, but I have just been very isolated in a physical and psychological way for a long time now. Other people my age are busy with chasing dreams, careers, traveling, getting married, being pregnant, and raising healthy children. I'm just fighting to keep my child alive. It's hard not to be envious, but I just try to stay focused on getting Jacob through one day at a time. It was never my desire to participate in the medical community. I never wanted to be a nurse or doctor. I wanted to be a mommy with lots of kids. Yet here I am, placed in this life, and I feel it is the most sacred of privileges to care for, fight for, and advocate for my little boy. You can never understand what it's like unless you've lived it. The only Ones who I know can truly comprehend the weight in my heart are my Heavenly Father and my Savior. It's been a learning process to turn my entire will and Jacob's fate over to Them. I've never cared or wanted something so deeply than to have Jacob made whole, but I have to accept that what I want does not matter if it's not Their will, and that is truly the hardest thing to learn and trust.


3 comments:

Janice said...

I read your updates often Kylene and I am deeply touched by the journey you are living. I am in awe of your strength, your honesty and your tenderness. My heart broke reading this last post because I can feel the genuine pain in your thoughts. I want you to know that I am so grateful for your words because they humble me and make me realize how much I have been given and blessed with. Thank you for your strength, your patience and long suffering. It is truly inspiring. I pray you receive sweet tender mercies as you care for your sweet young boy. The bond you have created with him is probably the strongest and most sensitive among all relationships. Prayers for you sweet angel. God could not have blessed Jacob with a better mom.

Lindsey said...

Thanks for sharing that Kylene. You are amazing and my heart and prayers go out to you and your family. I am really glad your parents could be there and Ethan.

Our Family said...

You can show emotion and still be strong. You are almost done up there, and hopefully you won't feel so isolated. We love you!