Bone Marrow, Please Come Home!

Another prom picture ... I have so many pics that I might only be posting these for the next year.



Today we went to Kaiser for Hannah's blood to get drawn. Thanks to the good experience on Tuesday at the lab, we went straight there so Hannah didn't have to have her port accessed unless she was going to get blood / platelets. We were pretty sure she'd need transfusions today but before we left for Kaiser, Hannah danced to 2 Janet Jackson songs & told me, "I don't think I need red blood cells since I have enough energy to dance to 2 songs." She was right - we go back next Tuesday for transfusions. Her numbers today were wbc 1.4; platelets 18; hemoglobin 7.2.

Yesterday we went to a friend's birthday party & Hannah was so happy! Happy 7th Birthday, Ethan!! I really did not think Hannah would want to go because she has been very reluctant to do anything with anyone for a long, long time. She was very excited except when we pulled up & she saw a bunch of cars, she had me go inside to see who was there. I scouted things out & reported back to her & then she felt OK about the "bacteria level" & decided to go in.

My heart has been so heavy this week. I see how quickly (you'd think I'd know this by now!!!) an Aplastic patient can go from seeming really good to being really, really bad. There is a girl about Hannah's age at City of Hope right now with Aplastic Anemia. She had a very successful bone marrow transplant & then just before being discharged she developed a virus in her lungs. She is now in ICU on a breathing machine?!? I know there are many bone marrow transplant success stories ... I know that - but my heart has just been creeping down that "oh my goodness, please don't let my Hannah suffer" kind of thoughts.

It is hard.

It is hard to be a mom to a critically ill child.

For me, I have tried to make this all into one big adventure for Hannah but any parent reading this blog knows this road is truly anything but an adventure. Yes, we have fun. Yes, we make the best of all things. But come on, this is a nightmare.

Thankfully, I really feel that Hannah is insulated from the fears that Jim & I have of this road we are on. I guess we have done a pretty good job since she still thinks: Aplastic Anemia Rocks. Truly. I am so thankful for her attitude, her happy heart & for the great week she just had here at home!!

I know God is good. This disease stinks. No way around it. No easy fix to what she has. I do trust in the Lord with ALL my hurting, heavy, sad & confused heart. Trusting God & believing He is good does not candy coat the pain of what my heart feels when I think about the road ahead for Hannah & the possibility of losing her.

She is sound asleep right now on the sleeper sofa in the family room. She is so excited to be sleeping there ... she feels like she is having her very own camp out in her own house. So cute. Too bad Lil is too young to enjoy this camp out ... she is tucked in her crib. My precious Lily is such a doll baby!! I truly don't know what I'd do if we were still waiting for her. God knew. Thank you, Lord, once again for the gift of adoption & the treasure of our Lily that was perfectly planned for our family even though I agonized & questioned You many times during our 3 year wait for her.

We just set up an appointment at John's Hopkins on June 12th to discuss their chemotherapy program for Aplastic Anemia. If we decide on BMT or the John's Hopkins treatment, Hannah will lose her hair. I know that her losing hair is NOTHING if it saves her life -- I know that! But I also know my Hannah is loving her long hair right now & losing it would be a very difficult part of the journey for her. I will really have to work hard to come up with some tricks to try & make "hair loss" an adventure.

No end any time soon to all the fun over here :-)