Friday, September 30, 2011
3 months, 3 weeks, 4 days since diagnosis
day #10 of current hospital stay
days until transplant -*0*
Today was the big day! Riker finished her last dose of chemo at 9pm last night. Our hope is that this will be the last dose of chemo she will ever receive in her life. This is an amazing milestone in itself.
Yesterday morning, as Jon was packing up to come down, I found out there was no room in the Ronald McDonald House for them to stay and I had a complete melt down. The seemly cold nurses were helpful and reassuring but it had been over 2 weeks since I fell apart and I was due. I didn't realize how stressful it was to have the transplant looming before us. Not only is this a huge, scarey milestone for Riker but my other baby is going to have to endure a medical procedure as well.
All the hotels in walking distance were full and I was in complete panic mode. Thankfully, the resource social worker down here was able to find us a hotel. We stayed at just about the fanciest hotel I've ever been in, too. I couldn't believe it - 16 stories with glass elevators looking down. Fancy food and a 2 room suite. It wasn't easy to get to and we got quite lost a couple times before finding it but it was so worth it - a little respite before the big day.
Valentine had to be in pre-op by 6am for the 7:30 procedure. The nurses and doctors were fantastic with her and got her to stay relatively calm for vitals. She was given an Elmo balloon and a sweet turtle to go into surgery with. She got to choose bubble gum as the scent of the mask she would wear to be put to sleep. The wait wasn't so bad.
I went into the procedure room with her and was asked to hold her on my lap tightly with her arms down so that she was kept as still as possible. The nurses held that mask over her face has she screamed and twisted with all her strength. My poor baby struggled for what felt like minutes before she just went limp. They noticed that she went limp faster than I did and they took her from me and placed her in a bed and ushered me out. I cannot even begin to describe how awful it is to be with your child while they are put under for a procedure.
The harvest went well. They were able to get 50% more cells than they thought they would from Valentine with 400% more particles than necessary. We couldn't have asked for it to go better. The recovery from anesthesia did not go too badly but wasn't pleasant, either. Valentine was groggy, grumpy, a bit woozy and spent the first few hours in a haze. She had an IV in one of her hands that she was pretty horrified about. She sucked down 5 oz of juice right after she woke up and she ended up throwing it all up once she got to her room.
Thankfully, she did recover as the day went on and we were able to get food into her and she was able to do some crafts in Riker's room. It was nice to have my family all together, albeit in a very stressful situation. The actual transplant wasn't scheduled until 9pm so we had a lot of waiting around to do. Riker needed to be 24 hours past her last chemo and the blood bank needed to pull all the red blood cells out of Valentine's marrow because my daughters do not have the same blood type - yet. In the coming months, Riker will eventually grow Valentine's blood and she will also have her sister's blood type. Such a special miracle.
By late afternoon, the day had caught up with Valentine and she slept into the evening. She woke up just before we needed to head back to Riker's room for the big event. The cells didn't come until closer to 10pm and the whole thing was as anticlimactic as we had been told :) When you have a sick child, anticlimactic is good. Pretty much, they hung Valentine's cells on the same IV pole that Riker has had all the strangers' blood products on and started the infusion. Had it not been so late, I would have loved to take pictures of the progress. I would have loved to make a bigger deal of it. As it is, Valentine and I didn't go to bed until nearly 11pm and Riker slept through the entire ordeal.
So now the waiting game begins. We have about 20 days before Valentine's marrow grafts and takes seed in Riker's bones, making new blood cells. The next week or so is supposed to be the worst. Riker's counts are completely down and this is where her system really starts to break down. This is where she has a greater chance for infection than ever before. This is the danger zone. All we can do is wait... and hope...