Well, we had a really good meeting with Dr. Park today. We really liked her a lot. She gave us a lot of information about the actual transplant. The only bad thing was that as we drove up into the parking lot of the hospital, I broke down. The memories of the last time we were there at the Children's Hospital was just too much for me. The last time we were there was when we first found out about Kelby's cancer. I did pull it together quickly though and I was fine.
Here's what it sounds like the next steps will be: First, hopefully sometime this week we'll go down to get some more scans...one more bone scan and a head and abdomen CT scan. Then, hopefully we'll get surgery scheduled for next week sometime. During the surgery they will be taking out the adrenal gland tumor in her belly. They will probably also do a biopsy on her jaw again as well as a bone marrow biopsy. For the bone marrow biopsy they will use a needle to get the marrow out of her hips. She's had that done 2 times before and it isn't ever a problem. For the jaw, I imagine it will be a bit more invasive like the first time she had it done, but it sounds like an important thing for them to do. If they find active cancer cells in the jaw tumor there will probably be another round of chemotherapy after the surgery before the transplant. Also, they will give her radiation to the jaw after the transplant. If they don't find active cancer cells in the jaw, we'll go on to the stem cell transplant two weeks or so after the surgery and she may not have to have the radiation to the jaw. We will probably be at Children's Hospital for the surgery. So after the surgery there will either be another round of chemo or the stem cell transplant.
The actual stem cell transplant process was also explained to us today too. This will also be done at Children's Hospital. She will be getting three new chemotherapy drugs over a six day period. On the seventh day she gets to rest. On day eight they hook her up to her saved stem cells and give them back to her through her catheter. This chemotherapy is a step higher in intensity above what she has already been getting and thus so are the side effects. Her blood counts will all go down and stay down for longer. She will have to get more transfusions. With her white count so low, she'll be at risk for infection again, but for longer. That is why we'll have to stay at the hospital the whole time that she is recovering. Dr. Park also said that she will also have mucusitis as well...which is blisters in her mouth, throat, and stomach. That is because these drugs also break down the lining in those places. She hasn't had a problem with this at all so far, so hopefully she'll make it through without to much of a problem from that. So, as her the stem cells graph back into her bone marrow and her blood counts come back up, she'll start to get better. She said that we will be at the hospital for about a month. All of this sounds yucky, but it will be the last bunch of chemo she'll have to get and we are happy with that! The only major thing after the transplant is the radiation therapy she'll get. She'll also take six months of acutane which is for maintenance, but that is all out-patient. So, we are getting close to the end! If she doesn't have to have the round of chemo after surgery, she'll probably start the transplant chemotherapy in the middle of April. Then, she'll be pretty much recovered by mid-May...before the baby is even due! If she has to have the additional round of chemo, the transplant would start at the beginning of May and we would be at the hospital in recovery when the baby is due. So, we are praying for many reasons that they find she is ready for the transplant right away!
Dr. Park wanted to reassure us that Kelby is doing wonderfully throughout her protocol compared to other kids that have been through it. Some kids have to start the IV nutrition right away in the beginning and it is amazing that she has held out this long. Other kids also suffer a lot of other side effects during the chemo that she hasn't. Plus, Kelby's tumor's response was really impressive to her.
It was a really good, informative meeting. We are happy that surgery is next. I am ready for things to come to a conclusion now. It is also good that we have more of an idea what is going to happen next. Here's some cute pictures of Kelby for you all to enjoy.
The actual stem cell transplant process was also explained to us today too. This will also be done at Children's Hospital. She will be getting three new chemotherapy drugs over a six day period. On the seventh day she gets to rest. On day eight they hook her up to her saved stem cells and give them back to her through her catheter. This chemotherapy is a step higher in intensity above what she has already been getting and thus so are the side effects. Her blood counts will all go down and stay down for longer. She will have to get more transfusions. With her white count so low, she'll be at risk for infection again, but for longer. That is why we'll have to stay at the hospital the whole time that she is recovering. Dr. Park also said that she will also have mucusitis as well...which is blisters in her mouth, throat, and stomach. That is because these drugs also break down the lining in those places. She hasn't had a problem with this at all so far, so hopefully she'll make it through without to much of a problem from that. So, as her the stem cells graph back into her bone marrow and her blood counts come back up, she'll start to get better. She said that we will be at the hospital for about a month. All of this sounds yucky, but it will be the last bunch of chemo she'll have to get and we are happy with that! The only major thing after the transplant is the radiation therapy she'll get. She'll also take six months of acutane which is for maintenance, but that is all out-patient. So, we are getting close to the end! If she doesn't have to have the round of chemo after surgery, she'll probably start the transplant chemotherapy in the middle of April. Then, she'll be pretty much recovered by mid-May...before the baby is even due! If she has to have the additional round of chemo, the transplant would start at the beginning of May and we would be at the hospital in recovery when the baby is due. So, we are praying for many reasons that they find she is ready for the transplant right away!
Dr. Park wanted to reassure us that Kelby is doing wonderfully throughout her protocol compared to other kids that have been through it. Some kids have to start the IV nutrition right away in the beginning and it is amazing that she has held out this long. Other kids also suffer a lot of other side effects during the chemo that she hasn't. Plus, Kelby's tumor's response was really impressive to her.
It was a really good, informative meeting. We are happy that surgery is next. I am ready for things to come to a conclusion now. It is also good that we have more of an idea what is going to happen next. Here's some cute pictures of Kelby for you all to enjoy. 
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