Kaelyn is feeding her Dog Dog - He has to eat too ya know! 

September 3, 2004

We have decided to appeal the decision made by Aetna, our insurance company, so we can stay here with all of our support system. Dr. Jorge Reyes, who will be Kaelyn's transplant surgeon, is the best in the nation. He has done over 1000 liver transplants. We met with him on Wednesday morning and he discussed with us how important it is for Kaelyn to have the best care possible. He believes that he can provide this care, and we think so too. He also discussed with us his view on immuno-suppressant drug therapy after transplant. He has worked with thousands of kids to reduce the amount of steroids and drugs needed. He believes that Kaelyn would do very well on his regimen of drugs. This has made us feel a bit better about the life long commitment of transplantation.

It has been so stressful filling out the paper work and trying to get our appeal moving quickly, but hopefully it will be all worth it. We faxed in our appeal last night, Aetna has 36 hours to reply. So we should hear back from them tomorrow night. We have also contacted the Insurance Commissioner. Their process is a lot slower though, they have to give Aetna 15 business to reply to their request. Which essentially is too late.

Kaelyn, of course, is our first priority. We need to feel that we have done everything we could do to give her the best possible care - which we believe is here, in Seattle. Not only because of the doctors, but also because of all the wonderful support she - and we - have here. We also have to consider Jacob in all of this too. It is just as important to us to watch out for his needs.

I have attached our appeal to Aetna for everyone to read if you would like. I feel we have a very strong case.

Love to all.



September 2, 2004

Re: Formal Appeal for Kaelyn Perry Surgery Location

Our daughter, Kaelyn who is 15 months old, was diagnosed with Metatstatic Hepatoblastoma (childhood cancer of the liver, spread to the lungs) on May 11, 2004 - which just happened to be her first birthday. We have been through 5 courses of chemotherapy to shrink the tumor and kill the nodules in her lungs. She responded very well to her chemotherapy. The tumor has shrunk to an operable size and the lung nodules have disappeared completely. Unfortunately, the liver tumor has wrapped its way around the main portal vein that supplies the liver with blood. So, this makes the tumor inoperable.

The next course of action is a liver transplant. Our Aetna case manager recently told us that the surgery would not be covered if performed at Children’s Hospital. We were told that our only option was to transfer her out of state to a hospital in California. For other cases, that option may be acceptable. To our family, the doctors at Children’s Hospital, and most importantly, for Kaelyn’s survival, relocating is unacceptable.

We are appealing the decision and want to take every avenue and accept all measures of help during the appeal process. I sincerely hope that our appeal can be heard and decided upon quickly as Kaelyn’s doctors have recommended surgery within the next 2 to 3 weeks.

• Air travel with a suppressed immune system is medically dangerous for a chemotherapy patient, not to mention a one–year old infant who is seriously ill and needs constant care. Her ANC is lower than recommended for public exposure.
  
• Dr. Pat Healey, the Children’s Hospital surgeon assigned to Kaelyn, has completed close to 200 liver transplants. He is one of the top liver transplant surgeons in the nation. The assigned surgeon at Stanford has less than half that number. Dr. Jorge Reyes will be assisting in the surgery and has completed over 1,000 liver transplants. With the surgery experience these doctors provide, coupled with the cancer specialty of Children’s Hospital, not to mention the personal understanding of Kaelyn’s case, we believe it is in Kaelyn’s best interest to have the surgery here.
  
• Doctor Jorge Reyes, the Director of Transplant Services at Children’s Hospital recently transferred from one of Aetna’s Institute of Excellence, namely Children’s Hospital of Pittsburgh. By transferring here, he is bringing with him the expertise and knowledge that will soon make Childrens Hospital one of your named Institutes of Excellence for liver transplants. Since this doctor will play a fundamental role in our child’s surgery, and is named an expert in the treatment of hepatoblastoma with liver transplantation, he is more aptly qualified to give Kaelyn the best care. (Please see letter from Dr. Reyes.)
  
• Kaelyn has undergone medical tests which resulted in severe complications and helped the doctors learn valuable details about Kaelyn’s medical tolerance. We fear the necessity of having the tests repeated if records are lost during the transfer. For instance, she had a TB test on 8/26/04. The reaction to the test was unexpected and severe. She got severe case of hives, vomited twice a day for 5 days and lost 9.28% of her body weight. To offer some relief, she had to be given a cortisone shot.
  
• Kaelyn is a ill child and traveling is out of the question. Since the time she was diagnosed, not counting her scheduled appointments she’s been taken to the hospital several times. She’s been admitted into the emergency room four times. She’s suffered from fevers, nausea, and reactions to medications. Traveling with such a sick child is not advisable.
  
• Liver transplant patients receive anti-rejection drugs and steroids. These therapies need to be adjusted for a cancer patient such as Kaelyn. The surgeon has informed us that these adjustments are best made here at Children’s Hospital to increase her chances of survival. It’s a very complicated medical issue to mix chemotherapy and anti-rejection medications which is best done by the experienced crew at Children’s. They are the best in the nation for cancer treatment.
  
• Kaelyn needs cancer treatment after the surgery. Children’s Hospital can provide better treatment than the other hospital, which specializes in liver transplants but not necessarily liver cancer.
  
• The physicians at Children’s Hospital are most familiar with Kaelyn's medical needs.
  
• Traveling back with Kaelyn after the surgery would be an additional risk that could be avoided.
  Our home has been extensively adapted to especially care for Kaelyn. We have moved out of our own home to live with Kaelyn’s grandparents in order to provide her and our four-year-old son with round the clock care. We have disinfected her room and purchased a germicidal air filter to make the area as sterile as possible. The conditions of the house in Palo Alto are unknown, and cannot be feasibly altered.
  
• Our son would be separated from his parents. Even if he goes, it would be a hardship and be traumatic for him.
  
• Relocation to California for an indefinite period of time is an economical hardship for us.
  We do not have a resource network of family and friends in California.
  
• If Kaelyn needs any emergency follow up surgery, it would be in her best interest to have the surgeons responsible for her transplant and that are familiar with her anatomy perform the surgery.
  
• All of her post-operative care will be here in Seattle.
  
• We cannot even get her listed for an organ until we know where we will be receiving the transplant.
  
• Kaelyn’s team of physicians has recommended that Kaelyn not be transferred out of state. They are taking their own measures to appeal the surgery denial.
  

We are requesting that a spot contract be granted to Seattle Children’s Medical Center for the liver transplant and any other necessary surgeries for Kaelyn Perry.

Sincerely,

Wade & Angela Perry

September 1, 2004

Well, what would life be like without a little turbulance right. We have discovered that our insurance will only cover the liver transplant in Palo Alto, CA at the Lucile Packard Childrens Hospital (LCPH). This hospital is affiliated with Stanford University, and is considered the best liver transplant location in the Western US. Our surgeon here has tried his hardest to plea to our insurance medical director to have the surgery here, but to no avail. We are preparing to go to LCPH soon, probably within the next week. This, at first, was VERY stressful news, but as we are learning more about the program there and talking with the liver transplant coordinater our nerves are starting to calm. It seems that they have performed hundreds of cases just like Kaelyn's, and Childrens here in Seattle has only performed one in the past year. So, the experience of the surgeons at LPCH is very comforting.

I will hear back from LPCH today on when we can get Kaelyn in to consult with the surgeons and legions of other doctors and specialists. I expect it will be early next week. Then, Kaelyn and I (Angie) will most likely be staying in CA until we get a liver and beyond for recovery. Wade and Jacob are going to join us when we hear the organ is available.

Our insurance will reimburse costs for Kaelyn and my transportation. Also for the families accomodations and transportation there in CA. We will need to pay for Wade and Jacob's flight and also all of our food. Hopefully, that will be all of the additional costs for our journey to LPCH.

We are still planning on holding a special fast for Kaelyn and her surgeons this coming Sunday. Please join us if you are able.

We love you all and appreciate all of your prayers and concern for our little angel.

~Angie