Treatment presentation...

Sorry for the gap in the blogs. Last week was busy and this week is even worse. I know everyone wants answers of how Austin's days are and where we are in treatment. Our days have just been overwhelming and at nights it is hard sometimes for me to get on here and one, explain everything and two I am just so tired and all I want to do is climb into bed and move on to the next day. I appreciate every one's concern and prayers for Austin. So I apologize for not being more up to date. If you call and I don't answer, it isn't because I am avoiding you it is either I am tied up with Austin or Austin and I are asleep. If I don't call you back it is just because I have forgotten. My mind is not in the same shape as it use to be. It doesn't process things like it should. Once again I apologize. Okay enough about me and more on Austin.....

Friday update..... Austin finished chemo with flying colors once again. We had to stay late to get fluids so it made for a long day. It was sure nice to not have to go to bed with fluids and not have to wake up and change his diaper every three hours.

The weekend...... oh what a beautiful weekend it was. It was so nice outside. I wish we could of played outdoors. I took Austin on a few car trips and boy did he enjoy them. He stayed in PJ's all weekend. I wanted to keep him comfortable as possible. He actually has been eating very well with having to only take a little bit of medicine. Really I am not sure he really needs the Zofran but then he can not speak and tell me if his stomach hurts. So I have to go by his reactions. He has been in the pantry many times this weekend pulling out food to eat.

Monday update....... Today we had our blood counts check with Patel. His white count is not registering. So yes he has it rock bottom already. His platelets were 32 so he had to get a transfusion. His red cells were 9.6 so he will need that transfusion on wed. We scheduled or meeting with Dr. Grimley for today. I had a good feeling we would need a transfusion and Grimley works out of the clinic so it worked out well.

Dr. Grimley meeting...... The meeting went well. He apologized for the cancellation of the last appointment. He explained to me where we are and what the plan is. I will try and explain it to you but it is very detailed and lengthy. I will state information randomly as I remember it. Sorry for that.

Radiation will be for two and half weeks. Grimley and I talked about radiation to Austin's arm. As Dr. Eng did not want to do this because of the possibility of it making one arm shorter then the other. Grimley feels this can be fixed later in life by and orthopedic. So he is going to push to have it done. He feels that the neuroblastoma will react well with the radiation. We asked him if the radiation didn't get Austin where Dr. Grimley wanted then what will happen. He said as long as the disease is stable as it has been from the chemo and not progressing then we can move along with transplant. If it is progressing then this treatment is not for Austin. The transplant will be a safe, non suffering, less pain option to go. This transplant should be easier then his last transplant. It will hopefully be less hospital stay where most will be done on an outpatient bases. Dr. Grimley doesn't think Austin will need a central line placed like we did the last transplant he will just use his port that he already has. The plan is after radiation to do scans, then the following Monday admit him to the hospital and start chemo. Chemo consist of ones that we have seen before like cytoxan and etoposide (VP 16). He will also recieve a medicine giving with the cytoxan called antithymocyte globulin (ATG). This is made from horse or rabbit serum. Yes strange I know. The one Austin will get is the rabbit. This medicine destroys certain of your white cells called lymphocytes. This drug helps the lymphocytes from attacking the new cells in the cord blood. After chemo he will go to CTRC for total body radiation. It will be one treatment. The next day will be transplant day. If he does well he will probably go home the next day. To see if transplant works will take up to two to three weeks. He will have many appointments at the clinic for blood draws for counts, platelet transfusions and red cell transfusions. He will be on many drugs after transplant to help the cells from fighting Austin's body (rejection) and from Austin's body fighting the new cells this is called graft versus host disease (GVHD). The goal in the end is to give Austin and immune system to fight the Neuroblastoma from coming back. It is a cord blood transplant. It is a 5 out of 6 match. Not a perfect match is what they wanted. This is experimental so there are not really any stats to give on it. They have done about three cases. This experiment is only two years old. There are many other details to the transplant but this is basically what is going to happen. He said to expect side effects of just what normal chemo does to him, fevers, neutropenia, rashes, and only a little bit to none of muc0sitis (mouth sores). The time frame from my prospective for transplant looks like last Monday in February or first Monday of march if things go as scheduled.

Right now there is no word on radiation. Hope to hear from them tomorrow. I have a lot on my plate right now as once again I am getting ready to have to deal with medicaid and the state of Texas as they are trying to terminate Austin's medicaid effective January 31st. Yes I know this is this week and I am probably going to go through some hassles as I did back in the summer. In the summer I had to go across town to get a medicaid emergency form for Austin to have treatment. This is all has to do with how Jason gets paid by his employer. The computer program from the state has done this to us before. They give you no warning and makes life very difficult. I have to call many people, fax many things and run all over town to get a paper saying he has medicaid so he can have treatment. At least that is what I think we will have to do since that was the case last time. Oh enough about this. It just makes me mad writing about it.

So hopefully radiation will start Wednesday but he will also need red blood cells too. They went ahead and did the blood cross match so we don't have to wait long for the blood. Sorry for the long blog I guess it goes with the long week to come.

Elizabeth