The chemo has really knocked Cody for a loop. His little body is now drained of energy and he just doesn't have that awesome smile and laugh right now. This stay has been much different in that Cody has seemed to change. I'm not sure if it is all because of a certain medication or that he is maturing. His anger issues have not showed once since we have been here. On the other hand he is much more emotional. He cried for hours after Diane and Justin left yesterday. Part of that may have been from his stomach discomfort. They had to give him meds last night to help with the pain. He was finally able to go to sleep around 1:30. He is such a trooper. His hair is starting to fall out again. I may bring in the clippers to cut it off. It gets all over his pillow and in his mouth and eyes.
Today we move... The hospital is renovating sections of this floor so we will move to another section today. We are lucky in that the room we have been in is a little larger than most and it is nice for the longer stay. We are not sure what type of room we will be getting later today.
Well, it's over!!!
As I mentioned a couple of weeks ago, AOL is making it's final flight from VA to NY tomorrow. Over the years they have been so good to patients and their families while helping us get to NY for treatments. Corporate Angel is currently looking for another company to fill that void. Diane and I will now turn to Angel Wings. They fly little personal planes up there. From what I understand they are not for everyone though. The ride is much different on such a small plane. If possible Cody and I will be using them next month when we go up for his scans and bone marrow. Diane will be taking him up a week or so later to begin his 3f8 treatments. My guess is that she will try something else. She doesn't even like to fly on the big planes.
Stem cell rescue Friday...
Cody will be getting a stem cell rescue Friday. The doctors and nurses are all ready to go. They have had his stem cells frozen ever since his transplant years ago. This will help his system recover quicker and get his bone marrow back to where it should be.
The next step...
The 3f8 treatment that he will be getting is the antibody treatment that I have referred to before on my blog. It is made of mouse antibodies that are created to attack the neuroblastoma cells. There is a humanized form of these antibodies that they are developing but they are not ready yet. 3f8 has many advantages over chemo. The patients don't lose their hair, they don't get sick for days and it doesn't beat their body down like chemo. But,,,, 3f8 is very painful. So painful in fact that there are not many meds that can control the pain. Other parents from our BOP say that you feel helpless during that treatment. You want to help your child get through it but you can only be there to comfort them. On the bright side, the pain only lasts for 30 minutes or so and when it is done the kid has the rest of the day to do what they want. On the other hand, the kids must do it for 5 days and it must be done once a month. Although 3f8 has it's own set of challenges it is by far a better option than chemo. Here is a link that Dottie provided that explains 3f8 much better.
It use to bother me to ask for donations. Asking for money is just hard for me. I am proud that way I guess. But, when it comes to this I ask that you give what you can. If you know someone that usually gives to a charity please suggest that they give to BOP. You can point them to the link on my page. Help is needed!!!!!
Please keep praying for Cody and my family. My other two young ones are showing signs of stress. Justin is having stomach issues and Daniela is starting to act out in ways that are common the stress that is placed on siblings. It's a long hard road...