I have an update for the update! But first, if you haven’t read my last post about the bone marrow collection, you can just scroll down and read it first……then you won’t miss one juicy detail!
So you all don’t worry, Jillian woke up (right after I uploaded that last post) and she is doing great! She even gave me a glimmer of a smile. And when I told her we’d have a peanut butter and jelly sandwich, that little smile grew pretty big. So she’s been awake a couple of hours, has eaten and did not upchuck (for lack of a better term), and has laughed and been happy. Her vitals are all good. The IV has been removed. We had to change the bandage on her puncture site, and I’ll tell you what it’s like. There’s two small puncture holes on the back of each of her hips. She doesn’t seem to be in pain. She’s supposed to stay in bed for 24 hours and I’m not to carry her around. So I just wanted to fill you all in that Jillian is doing great, and the nurses will continue to check on her through the night to make sure she stays that way.
I’m pretty sure (the language barrier) that one of the doctors said that she is the first bone marrow collection/transplant performed on a small child at this particular hospital. They have no idea how many stem cell injections she will have. It all depends on how the cells grow out in the culture.
Thank you all for loving her so much and checking in on her! I’ll post again when I know anything else. We love you all so much!
September 4th, 2008
Hi family and friends!
Jillie is sleeping right now. She has had her bone marrow collection and it was successful. Dr. Mike seemed happy with the procedure and the amount collected. They were aiming for 50 ml and they were able to get 60 ml. The bag of bone marrow was immediately whisked away to the lab to begin culturing so it can multiply her very own stem cells. Believe it or not they even showed it to us. The doctor held a stainless steel box wrapped up in white linen, and he unwrapped it and lifted the lid to show us the bag of her bone marrow. It looks just like regular blood.
They collected the bone marrow from the big bones on her hips, like above her butt. They collected from each side, so two holes. When I’ve talked to adults that have had it done, they said they were fine afterwards, that it really didn’t hurt that much. Now Jillian has to stay in bed for 24 hours and rest…
I won’t lie and say that Jillian was happy though. Really all morning she kept looking at me and smacking her lips to tell me she wanted something to drink and eat. But I couldn’t let her have anything. Then they came in to place the IV, and unlike when she was a preemie in the hospital, they got it the first time and got it very quickly. But she wasn’t happy about it at all. They wrapped it up like normal and then she got some Sesame Street bandaids over the top of it.
They let me stay with her while they gave her the anesthesia, most of it, and she was in a very twilight state when they wheeled her away. When she woke up after the surgery I think she was scared and she cried a lot, she wasn’t happy at all. She didn’t want any nurses or doctors near her. She gave them a fit when they were trying to check her blood pressure and give her some oxygen. They said I could give her a banana, and I did, and that relaxed her some, and then I gave her a little of her soy milk in a bottle and she fell asleep and has been sleeping peacefully ever since. They are very thorough…they come in about every 20 minutes and check on her blood oxygen level and check the IV. She is doing good.
So now we just wait and see how the stem cells culture, how they grow and proliferate. It will be a few days until we know how well her bone marrow is culturing and get an idea of when her first transfusion will be. If all goes well, she will get her first stem cell transfusion by IV in approximately another 4 days. Then, again depending, her first lumbar injection might be in another four days after that.
I’ll do another post tomorrow to let everyone know how she is after she wakes up. We are cleared from the physical therapy schedule tomorrow, so she should be able to just relax and play. I think when she wakes up today she has definitely earned a peanut butter and jelly sandwich and some delicious cookies I found in the grocery store! Oh, and she is not allowed to have a bath for 3 days.
Thank you all so much for your prayers and the love and support you are sending our way. And thanks for the comments you’ve posted on the blog. I really looking forward to reading your comments. That’s the first thing I do when I sign onto the computer.
Tomorrow is really the last day that my mom will be here with us 
because she leaves Saturday morning. What a bummer.
And to our friends and family in Florida, I’ll be thinking of you as that hurricane comes your way. I’ll send back some prayers to keep you all safe and sound.
We love you all! Will keep you posted often.
September 4th, 2008
