Kaelyn went in yesterday to see her oncologist and have her counts tested. We were informed that her AFP (Alpha Feta Protein - the cancer marker protein in her blood) levels are starting to elevate once again. When she was first diagnosed back in May her AFP was above 440,000. After her agressive 4 courses of chemo, every three weeks, her AFP had lowered to 98. But, since she has been waiting for a transplant, we have only been doing chemo every 6 weeks. This has allowed the cancer to start to grow once again. Her AFP is now up to 940.
The surgeons and oncologists both agree this is very serious. Kaelyn has been upgraded on the transplant list to receive segmented livers and also different blood type livers. This hopefully with get her a transplant as soon as possible. If she receives a different blood type she will have to go through a process called plasma ferrisous (spelling may be wrong). This involves the cleaning of the plasma of all foreign anti-bodies. This would be performed after surgery. She would remain in the ICU for a lot longer than if she would receive a liver of her same blood type. But in the long run it does not increase rejection.
We are praying for a miracle. Love to you all.
Angie
Thursday, October 07, 2004
Monday, October 04, 2004
Sunday, October 03, 2004
October 3, 2004
We are still waiting for an organ. We are now on day 25 on the list. Wade called in to our transplant coordinator just to see what the longest wait time has been for someone who is a status 1 on the list. The answer was 2 months. So, we are still trying to wait patiently.
Kaelyn did have to have her 6th course of chemo administered last Wednesday and Friday. We all are a little sad about that. She was doing so great being off chemo for 6 weeks, but it had to be done so the cancer would not progress. She will have to have different chemotherapy drugs the next time she needs it because her kidneys cannot handle any more of the cisplatin she was currently on. The new drugs will have different side effects, the major side effect is that they are hard on the heart. Hopefully she will only have to have one course of these drugs and that won't be an issue. She currently is doing okay. So far she has been eating and keeping food down, thus she has been able to take out her NG Tube (feeding tube). That has been so wonderful! She is so much more free without that thing hanging out of her nose and connected to a big bulky bag. As long as she keeps her weight up we won't have to put the tube back in.. She also is trying so hard to walk. She has taken a couple steps by herself, but is still very wobbly. Probably due to the fact that the chemo makes it so she cannot feel her feet.
Other news, Jacob was exposed to chicken pox last week at preschool. He has been vaccinated, but Kaelyn's doctors don't want to take the chance of her getting exposed. So Jacob will be staying with my sister-in-law, Adele, for a week. If Kaelyn is even around someone carrying the virus she has to go into the hospital in isolation and be administered antibiotics and chicken pox vaccines. I guess chicken pox can be very serious, even deadly, if a immunosuppressed patient gets it. So we are not taking any chances. Jacob thinks he is going on vacation though. There is no better family than Adele's, so he is in good hands. He also just adores his cousins. He says in his prayers EVERY night "Thank you for Maddie and Callie" (Adele's youngest daughters, Jacob's cousins) over and over again. He is going to have a good time. I must admit though, that it will be harder on me not having him around, I already miss him and he hasn't even been gone one day! He is my sunshine!
Well, the wait is definitely hard, I can't get around that. But we know we are in the Lord's hands and things will work out according to His will. We have been greatly blessed and comforted - that has not changed. We love you all.
Love,
Angie
Kaelyn did have to have her 6th course of chemo administered last Wednesday and Friday. We all are a little sad about that. She was doing so great being off chemo for 6 weeks, but it had to be done so the cancer would not progress. She will have to have different chemotherapy drugs the next time she needs it because her kidneys cannot handle any more of the cisplatin she was currently on. The new drugs will have different side effects, the major side effect is that they are hard on the heart. Hopefully she will only have to have one course of these drugs and that won't be an issue. She currently is doing okay. So far she has been eating and keeping food down, thus she has been able to take out her NG Tube (feeding tube). That has been so wonderful! She is so much more free without that thing hanging out of her nose and connected to a big bulky bag. As long as she keeps her weight up we won't have to put the tube back in.. She also is trying so hard to walk. She has taken a couple steps by herself, but is still very wobbly. Probably due to the fact that the chemo makes it so she cannot feel her feet.
Other news, Jacob was exposed to chicken pox last week at preschool. He has been vaccinated, but Kaelyn's doctors don't want to take the chance of her getting exposed. So Jacob will be staying with my sister-in-law, Adele, for a week. If Kaelyn is even around someone carrying the virus she has to go into the hospital in isolation and be administered antibiotics and chicken pox vaccines. I guess chicken pox can be very serious, even deadly, if a immunosuppressed patient gets it. So we are not taking any chances. Jacob thinks he is going on vacation though. There is no better family than Adele's, so he is in good hands. He also just adores his cousins. He says in his prayers EVERY night "Thank you for Maddie and Callie" (Adele's youngest daughters, Jacob's cousins) over and over again. He is going to have a good time. I must admit though, that it will be harder on me not having him around, I already miss him and he hasn't even been gone one day! He is my sunshine!
Well, the wait is definitely hard, I can't get around that. But we know we are in the Lord's hands and things will work out according to His will. We have been greatly blessed and comforted - that has not changed. We love you all.
Love,
Angie
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