We met with the new oncologist at Rady Children's Hospital on Tuesday of last week. It was interesting, and overwhelming, and good, and stressful, and hopeful and so many other things all rolled into one. We were told to arrive 30 minutes early, and allowed even more time because we weren't sure what parking would be like, and exactly where the office was. We ended up waiting about 45 minutes because we were so early. There was a play area outside that Shad could see, but the doors were locked because it had been rainy earlier in the day, so he couldn't go out. He pulled up chairs for him and giraffe, and sat at the window looking out. It was pretty cute.
We did some enrollment paper work, and got him all registered in the system. We read some books, and talked about what we were going to be doing with the new doctor. Grandma Kitty was in town, and came to the appointment to help with Shad while we met with the doctors. It was nice to have her there and she helped keep him calm and distracted in the waiting area.
When we were called back they took his height and weight and asked a few questions about his eating habits. We were then taken to an exam room to wait for the doctor. The nurse asked a few more questions and filled in some more information on the computer. While she was doing that Shad started complaining about being starving, and soooo thirsty etc. We told him that we would get something after we were done at the doctor. The nurse finished up and said that she would bring him back a drink. She came back with a whole bag of snacks that had been donated. There was an applesauce, a bottle of water, trail mix, crackers and few other things. He was in heaven.
After waiting a little bit longer the doctor came in and met with us. She clarified a lot of background information about his previous treatment. She examined Shad and then we were able to let him go out with grandma so we could talk to the doctor without keeping him entertained as well. She gave us a lot of information about the plan for the stem cell harvesting and briefly discussed the later process of the high dose chemo and stem cell recovery.
The plan right now is to first place an apheresis catheter during a short surgery. The same day that the catheter is placed he will be admitted to the hospital to start a round of regular chemo (Taxol and Ifosfamide). As he recovers from that he will have his blood counts checked daily or every other day. When they declare it the right time he will have his stem cells harvested which will be about a day and a half in the hospital. This will probably be hard for him because he will be hooked up to the machine that pulls his blood out, separates the stem cells, and puts them back in for anywhere from 4 to 8 hours. He will not be allowed to move around or do much during this time, which should be interesting. This process will be repeated as necessary to harvest enough stem cells for the next part.
Once they have enough stem cells they will prepare for the high dose chemo. He will have 2 or possibly 3 rounds of that. Once he has that he will be given the stem cells to help him recover more quickly. These will be at least 3 week hospital stays, with a lot of restrictions even at home. We will find out a lot more about this as we go along I am sure.
I am a little bit stressed about not fully understanding all the restrictions and other things that will go into the recovery, but I feel like the doctor is trying to take things step by step with us. The next time we meet with her I will definitely have a lot more questions to ask her.
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