Kaelyn is Re-Listed

Kaelyn was placed back on the Organ waiting list on Monday, November 30. Now we will just wait until a suitable organ comes available.

Kaelyn is finally starting to roll over all by herself! She also has learned how to get herself into a sitting position from being on her back! It is so cute and wonderful to see her finally able to use her body like a little 18 month old should! It has been really fun with her the past few weeks. She feels so good. It kindof makes you wonder why she needs to go through another transplant. But I do know that she will only get sicker and sicker the longer we wait. That is why we want to get the surgery done before she gets to that point.

More good news. This weekend we are moving into our own house! We are moving to Snohomish into Jim and Adele's (Wade's sister) old home. They have just bought a new home two doors down and we will be part owners in their previous home. It will be a good situation. We will be in our own home but still have family really close. Just in time for Christmas!!! Our new address is:

810 21st Pl.
Snohomish, WA 98290

I don't have our phone set up yet, but will post it when we get our new number.

Love to all,

Angie

Re-Listed

Kaelyn will be relisted on the National Organ Transplant list on Monday, November 29th. Dr. Healey feels that it will be inevitable that Kaelyn will need a second transplant. It is better to get the surgery done while she is well, then to wait until she is sick. I agree with him. It also is better to do the surgery before scar tissue begins to build too much from her previous transplant. Atleast we have time on our side this go around. She is not sick like she was before and her cancer is no longer an issue. So, the surgeons are going to be very picky on what livers get offered to her. So, hopefully we can avoid any further complications with the new liver.

I hope everyone had a great Thanksgiving. We really enjoyed the time with our family and giving thanks for our many blessings. We continue to see God's hand in all of this, Kaelyn's remission from cancer is a miracle in its self.

Scan results

I had forgotten that I didn't update the website with the latest CT Scan results, so the last post is a little out of order.

On the cancer side of things, Kaelyn has been pronounce cancer free!!!!! That is reason enough to celebrate! The scan showed no signs of cancerous cells anywhere in her lungs or new liver. Oncologists and Surgeons are still disagreeing on whether to give Kaelyn any further chemo. The oncologists seem to feel that there is no need, while our surgeons think that it would be a good idea just for precautionary measures. I think they are going to give Kaelyn at least another month to recover from surgery before they make their final decision. But for now, we are celebrating the fact that Kaelyn is in remission!

The results from the liver portion of the scan are not as promising. Her hepatic artery is in fact clogged and the part of the liver that contains the bile ducts is not receiving adequate blood flow at this time. In result of this, the bile ducts are beginning to clogg, which could result in scar tissue and infection. Like I said in the previous post, this may lead us another liver transplant. There is the chance that her liver could compensate for the inadequate blood flow with the working portal vein. There has been some cases where the liver functioned normally without blood flow from the hepatic artery. This is what we are praying for. But we are preparing for another transplant. Our doctors are preparing the necessary paperwork and bloodwork to relist Kaelyn on the National Organ List.

Let us all celebrate in the fact that Kaelyn is atleast Cancer free. That is a miracle all in it's self! And right now at this moment she is feeling healthy and well. We definitely have many things to be thankful for during this holiday season. Love to all.

Angie

Kaelyn had to be readmitted last week for diarrhea and vomiting. We think she just had the stomach flu. But because of her clogged bile duct, the doctors wanted to make sure she didn't have an infection or was going into rejection. After being in the hospital for 5 days they finally let her go because all of the test were negative. Thank heavens!

We do have some not so great news though. The surgeons are considering relisting Kaelyn for a second transplant if the blockage in her bile ducts do not correct themselves. Normally they could place a drain and the ducts would usually clear up and start functioning properly. But because of the thrombosis (clot) in her hepatic artery, they don't believe that the drains would be a permanent solution for the bile duct issue. We basically are just waiting to see if her liver will some how compensate for the loss of blood flow from the artery. Dr Healey, our surgeon, has said that is some cases this is possible. So please pray our girls liver to be able to compensate for this.

Thank you all for your love and concern. We will keep you updated.

Okay, so it has been a few days since I last posted. Kaelyn and Jacob have come down with a stomach flu. We took Kaelyn into the ER yesterday. She is fine, we were just worried. Diarrhea is a sign of rejection or infection, so we figured we had better take her in. They drew some blood tests and just watched her for a few hours. We were able to come home without being admitted. Jacob is doing much better today, Kaelyn is still have some diarrhea so we are just keeping a really close eye on her.

Tomorrow Kaelyn is going in for her CT scan to check for any remaining cancer and to look for blood flow into her liver from the hepatic artery. We probably won't know the results until Thursday when we see her oncologists.

Blue Power Ranger.jpg
Dr Kaelyn.jpg
get well cards.jpg
Tall Tree.jpg
yummy.jpg
Kaelyns Incision.jpg

We are home!

Kaelyn was discharged from the hospital yesterday afternoon. All of her liver function test are repeatedly coming back favorable. She still has the issue of the hepatic artery's blood flow not penetrating into the liver, but so far so good.

She was just so excited to get back home! So much happiness from that little girl was emitted! She wanted to walk all night long and laugh with Jacob. She also just loved being back with Grandma again! It was really fun to she her enjoying herself so much! There is no place like home!

There is one bit of news that is not so uplifting. Kaelyn most likely will need more chemo. We kindof all figured it would happen anyway. The head of surgery, Dr. Reyes, is the national expert on transplanting livers to patients with hepatoblastoma. He suggested, very firmly, that Kaelyn have one more course of chemo. Which makes sense. We would much rather go through 6 more weeks of chemo than another encounter with cancer. So, I think that in a couple of weeks she will be going back in for more chemotherapy. This does not mean that they can find any remaining cancer cells, it is only precautionary. We will find out more about the cancer after they test her AFP levels and perform a CT Scan. But from what the pathologist could tell, there is no cancer remaining.

Kaelyn is healing amazingly well. She is very happy and does not seem uncomfortable. I am hoping to put a few very cute Halloween pictures up of the kids very soon.

Love to all...

Angie

The doctors seem to think that Kaelyn will be ready to go home by Monday! Isn't that amazing. I was expecting her to be in the hospital for atleast 3 weeks or more. I am just so happy that she is doing so well.

We did have another ultrasound on Wednesday. There has been no change in the blood flow from her hepatic artery to her new liver. But so far all of her liver functions test have come back normal. So we are just going to wait and see what happens.

Right now I am just in the learning process of how to take care of her once we get home. A lot of drug information and precautionary information. It looks like we will need to become pharmacists along with nurses. It actually is pretty interesting, keeping my brain working at least.

Everything is going just great. THank you all for your prayers and concern.

Love ya,

Angie

Out of ICU!

Hello everyone!

I apologize for not updating the site recently. It was hard to get to a computer this weekend.

Kaelyn was finally transferred out of the ICU last night. We are now in the surgical inpatient unit. We have our own room which is really nice. Kaelyn did have another ultrasound yesterday. It doesn't look like there is too much change. But the surgeons are very optimistic because of her liver function tests. They are all coming back in the normal range, so that could mean that her liver can function without the blood supply from the artery or that they are just not able to see the blood flow from the ultrasound because the artery is so small. So, we are going to remain at the hospital for atleast another week to two weeks so they can keep her on her blood thinner and also keep performing the ultrasound. Otherwise all is great.

The surgeon said that this type of artery failure or blockage only occurs in 10% of transplant patients, of course our Kaelyn couldn't miss out on being part of the minority! :) But he also said he is very optimistic that they will be able to see the blood flow into the liver.

Kaelyn is really looking and doing very well. It is going to be great to be out of the ICU. She has been wanting to go for a walk since her transplant!

Love to all.

Angie

Pictures of Kaelyn...

Day of Great News!

Okay, we have gotten more good news today than in the past 5 months! Kaelyn's pathology report came back today. It looks like the cancer has not spread anywhere else in the body or blood stream and was totally contained in the liver. It was all taken out from what they can tell. We will check her AFP levels in a couple of weeks and also do a CT Scan, but from the information they have now our oncologist predicts that we will NOT NEED ANYMORE CHEMO!!!!!!!!!!!!!!!! We are so excited! I thought that for sure she was going to need 6 more weeks, but for right now she doesn't need anymore at all!

Also, her ultrasound this morning showed great improvement in the hepatic artery. Blood is flowing into twice as much of the artery than it was two days ago. It is still not reaching the liver, but it is very close. It is flowing up until the wall of the liver. This too is great news. We are hoping that in two more days that the flow will be completely normal again.

Kaelyn may also be released from the ICU in a day or two. She is doing so well. Her liver is functioning better and better each day.

I just can't hardly take in so much great news! It has been a beautiful day so far. Hopefully the trend will continue! We are so greatful to our Heavenly Father for the many blessings he has given to our little girl. What a gift she is.

Love,

Ang

I forgot to mention that Kaelyn got to see one of the therapy dogs a couple of days ago. His name was Sugar Bear. He was in the ICU making his "rounds" and stopped by. Kaelyn really liked him a lot. It was very cute how she just loved looking at him. She was sad when he had to go. It was a very good distraction for her.

Yesterday was an interesting day. The suction on Kaelyn's NG tube (stomach pump) had been turned up way to high. Wade actually was the one who noticed it. He kept seeing red and pink fluid being dropped into her container. He mentioned it to the nurse, who promptly turned down the suction. But in result of it being up to high she was having some bleeding in her tummy. They think the suction was stuck on her stomach wall causing it to bleed. They turned down her heparine (blood thinner) by half and gave her some prevacid (acid reducer). It did stop bleeding and they eventually were able to turn her heparine back up to it's regular level. We were a little concerned about all of this since her heparine is what will hopefully unclogg her hepatic artery. Another "mistake" happened also, one of the residents left her computer logged on and someone (?) discontinued some of Kaelyn's antibiotics. These antibiotics are what are keeping her white blood cell count down so she will not reject her new liver. Luckily we had a great nurse yesterday who caught the mistake early and got her meds reestablished. It was all very disconcerting to us to have these two "mistakes" happen in the care of our baby. These things should not happen, especially to someone in the ICU! But atleast they were both caught early so no permanent damage was caused. I know that Wade and I are going to be just that much more aware in everything that is being done to our daughter from now on. I know that mistakes are made, but I wish they just wouldn't happen to our girl.

Anyway. Enough of my complaining. All in all, she has gotten great care and things are still going pretty good. She will get another ultrasound today to see if we can find any more blood flow to her liver from her hepatic artery. Say a little prayer for that today. I will update as soon as I find out any further info.

Love to all,

Angie

Day 5

Not much has changed in Kaelyn's condition from yesterday. The surgeon has said that he did review yesterdays ultrasound. It doesn't look much different from the one that was performed right after her 3rd surgery. There is flow in the Hepatic artery but it is not reaching the liver. Dr. Healey said that there is a possibility that the blockage could clear on it's own, but it may not. If it doesn't clear on it's own there are a few options of what may happen. Some kids liver can handle no blood flow from the artery because it is getting blood from the portal vein. But there also may be a chance of infection or scaring in the bile ducts which would result in Kaelyn needing another liver transplant. So right now we just wait and see what her body does with all of this. Hopefully the blockage will clear and the liver will get all of the blood it needs. She will be getting an ultrasound every other day to check the artery for flow.

She is also having some high blood pressure issues. So we are starting to give her some blood pressure medicine to try and control that. She has been very restless most likely in result to the high blood pressure. Hopefully the medicine will help her feel a little better so she can get some sleep.

We finally get to let her have some things to drink. She had about three sips of juice today so far.

Keep praying for our girl. She is a strong little fighter.

~Ang

Day 4 in the ICU

Well, today Kaelyn has been very aware and awake. She is still needing quite a bit of pain meds to keep her calm and settled. I think that besides the pain, she just wants to get out of that bed. I might get to try and hold her tonight. That would be good for both of us.

She did finally have her ultrasound today. We have not heard the official results from the radiologist yet, but the ultrasound tech gave us a little idea of what she saw. She said that there is some flow in the hepatic artery, but not any visible flow getting to the liver itself. But that is more than they saw last night after surgery. So we are hoping the the blood thinners will continue to do thier job and free up that artery. She will continue to have ultrasounds often to monitor her blood flow.

We have had not much else go one today. I will update as soon as I can after we hear the official report from the radiologist.

Love,

Angie

Day 4 in the ICU

Well, today Kaelyn has been very aware and awake. She is still needing quite a bit of pain meds to keep her calm and settled. I think that besides the pain, she just wants to get out of that bed. I might get to try and hold her tonight. That would be good for both of us.

She did finally have her ultrasound today. We have not heard the official results from the radiologist yet, but the ultrasound tech gave us a little idea of what she saw. She said that there is some flow in the hepatic artery, but not any visible flow getting to the liver itself. But that is more than they saw last night after surgery. So we are hoping the the blood thinners will continue to do thier job and free up that artery. She will continue to have ultrasounds often to monitor her blood flow.

We have had not much else go one today. I will update as soon as I can after we hear the official report from the radiologist.

Love,

Angie

Kaelyn out of surgery

Kaelyn came out of surgery at 7 PM. They found a blood clot in her hepatic artery. The surgeon was able to clear it out and have blood flowing through the artery. They are going to keep her on her blood thinners in order to prevent any further clotting. Hopefully it will not cause too much bleeding. That is why they stopped her blood thinners the first time. It is such a delicate balance that we are trying to achieve. We are going to perform more ultrasounds in order to see the blood flow in the artery.

If in fact she does develope another clot, the surgeon believes that another surgery would be too risky. Because the liver is starting to function normally, he thinks that there may be a chance that the clot could clear on its own. If not, their is risk of infection and damage to the bile ducts within the liver. If this occurs it would be necessary for another liver transplant. We are praying that there will be no more blood clots and that the blood flow in the artery will be normal.

Kaelyn still is doing pretty well despite all of the surgeries. She is such a strong little thing.

~Angie

Surgery # 3

Kaelyn was wheeled into surgery at 2:30 PM. She was doing really well. All of her blood work was looking great and her liver function is good. So, the surgeons are guessing that the artery is not flowing because of spasms or a blood clot. We should hear an update by about 4 PM and then we will update the site.

Kaelyn goes back into surgery...

Well this morning they did an ultra sound on Kaelyn and found that the blood flow through the main artery is non-existant. They need to go back in to do some exploritory surgery to see why there is no blood flow. She is scheduled to go in today around 1PM. The surgery will most likley take 4 hours or so. We are anxious to see this part of the transplant over and behind us. We will post more as we know more.

Breathing tube out...

They removed Kaelyn's breathing tube at about 5 PM today. She is breathing on her own and doing pretty well. She did need a blood transfusion this evening her hematocrit was at 17, which is very low. She is having a little excess drainage from her site that is causing her hematocrit to drop a bit. The surgeons are going to take a look at that, but they believe it is probably just from the blood thinners that she is on. It will take them a little bit to discover the perfect balance of the thinners to put her on.

Other than those minor things, she is doing very well. The nurses keep commenting on how well she is doing in comparison to other liver transplant patients, so that is keeping our spirits up.

I will write later.

Kaelyn

Wade and I went to see Kaelyn this morning. She is doing remarkably well. All of her counts are heading in the right direction. The nurse said that she is very fiesty and strong willed. She said that Kaelyn woke up this morning and acted like she was done with all this mess and was ready to walk on out the door! Unfortunately, we can't have her moving around that much, so they had to sedate her (the nurse said it took quite a bit of medicine, because she was fighting it so much). All of the doctors and nurses say that in their experience that the fiesty ones recover much quicker. The nurse said that her liver function was doing very well.

They do need to bring her Hematocrit (red blood cell) count down. It is at 50 right now and they want it to be around 35. A higher concentration of red blood cells means the blood is thicker and more viscous which creates a higher chance of clots. So they are going to remove some blood and replace it with Albumin, which is a plasma derivitive without the platelets (clotting factor). They also are going to try and remove her breathing tube later on today.

She is doing so good. Heavenly Father is surely looking out for our girl. We have realized so many blessings in the past 24 hours. Thank you all for your prayers and support. We will definitely keep this site updated as often as possible.

Angie

Out of surgery, again...

Kaelyn came out of surgery for the second time at about 3:00 AM this morning. Dr. Healey, the surgeon, said that all went very well. Kaelyn did wonderful, and her blood flow is looking a lot better. They rerouted the main artery because there was a blood clot in the main portal vein from the first surgery. He said that everything looked fine though after the second surgery. She is on some blood thinners, just in case.

Surgery Update

Kaelyn was out of surgery by 8:30 PM tonight. We were all very suprised to have it be finished so quickly. The surgeon said that she did great. The tumor was huge, but it looks like he was able to remove it all. The new liver went in very smoothly and actually looked like it was beginning to function.

We were soon settling into bed when we received a page from the ICU at about 11:00 PM. We were informed that Kaelyn needed to go back into surgery. Her main portal vein was not showing good enough blood flow. So they needed to go back in and reconstruct and redirect the vein to the main portal artery. She is still in surgery right now, it is about 1:30 AM on Sunday. We have received an update from the OR and she is doing fine. We don't know how much longer she will be in surgery. I will write again after she comes out.

Transplant day (for real this time!)

We received the call this morning around 8:30. A donor had been found! All we know about the donor is that it is a baby and that it was taken off life support today. The liver will not need to be cut to size, which is good, and the blood type is O, so she will not have to undergo the plasma ferresous.

It is about 6:45 PM right now. Kaelyn has been in surgery since 1:30 PM. We have received a couple of updates from the OR and Kaelyn is doing good. They have taken out her liver and are in the process of sewing the new one right now.

So far so good.

I will update later...

Angie

False Alarm

About 7:30 am this morning our transplant coordinator called and said that the liver was not going to work for Kaelyn. The donor had been on a lot of blood thinners and because the surgeon needed to cut the liver to fit Kaelyn it would have just kept bleeding. So, we are back to waiting. The only good news is, is that becuase she has been on the list for so long we should start to get more offers.

We are very disappointed, but we also understand that it is much better to be safe than to get into surgery and have things go wrong.

Love,

Angie

Transplant Day!!!

We finally received the call we have all been waiting for this morning around 2 am. There is a liver available for Kaelyn! We are going into surgery sometime this afternoon. We will be at Childrens at 12 pm to get everything started.

The donor is a type O blood type, so there should be no need for the plasma cleaning that would be needed if it was a different blood type. That is about all we can know about the donor, we do know that it is in a different state. It will also need to be cut down to size to fit into Kaelyn's little body. But that should not create a problem.

I will try and update the site as soon as we know anything further.

We just came out of the hospital yesterday because Kaelyn had come down with a fever over the weekend. Her counts were very low. But as of yesterday they were on the rise. She is doing pretty well right now.

Please keep Kaelyn in your prayers and thoughts today as she undergoes this very extensive surgery. We love you all.

Love,

Angie

October 7, 2003

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

Pictures

Hi all -

I thought you might enjoy to look at some recent photos of the kids. Enjoy!

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

September 20, 2004

Hi All,

I know you are all wondering what is going on here with Kaelyn's transplant. Well, we are still waiting for an organ. It is now day 12 on the list. The median wait time is 11 days, so we are thinking it should be anytime now.

Actually the wait time has been fairly enjoyable. Kaelyn has been feeling really good, since she has not had any chemo treatments in about five weeks. It has been so fun seeing her explore and push her little boundaries. She is finally sleeping through the night! Yeah for all of us! She is starting to scoot her little bum to get around, following in her big brothers footsteps (or should I say bum scoots!). She still would prefer to be held or walked holding onto someone's fingers, but it is a start! She loves to sing! It is so cute! Her favorites are "Patty Cake" and "Head, Shoulders, Knees and Toes". Her words are not distinguishable, but we can tell what song it is with the accompanying hand movements. She also is songwriter, singing some extremely cute original compositions.

Jacob is also growing so quickly! He told me yesterday that after he is done being a big boy, he is going to be teenager. AHHHHHH! I don't know where that came from! He also said that Heavenly Father made his best friend Jacob (yep, same name, different boy) just for him so that they could play all the time together. I love hearing the things that come out of his mouth! He loves preschool and going to primary at church. (His best friend, Jacob, attends both the same school and same church!)

I will definitely update the website when we hear the news that an organ is available. In the mean time, we are just going to enjoy our beautiful children and wait for that phone to ring.

Love to all,

Angie

September 9, 2004

Kaelyn is now listed on the UNOS (United Network for Organ Sharing) list for her liver!!!!! We found out at about 5:00 PM last night! We are all so relieved and excited that she finally is listed to receive her organ.

She has a window of about two weeks to receive her transplant. If we cannot get an organ before then, she will need to have her last course of chemo administered, and that means either having her transplant with dangerously low counts, or having to wait once again. And she will also have to try different chemotherapy after surgery, which we do not want. We ask all of you to please pray that a suitable organ may become available for Kaelyn within this two week window. We have all seen what the power of prayer has accomplished so far. Please continue to keep our Kaelyn in your prayers. We also would like prayers said for the family of whomever our liver comes from. Please ask for comfort for them, we know it will be a sad time for their family.

Love to all!

Angie

September 8, 2004

Okay, our life is one rollercoaster ride after another! We heard yesterday afternoon from our insurance company. They have decided to let us stay here in Seattle for the transplant! Hooray! I believe that the power of prayer and everyones sacrifice in fasting has brought this wonderful news to pass. WE ARE STAYING!!!!!

Also, Jacob has started preschool today. He is so excited. And I am excited that we don't have to pull him away from his friends, family and school. Hopefully we can keep his life just as normal as possible. He is such a good boy. He is always wanting to help and saying the cutest things!

Thank you everyone for your prayers and fast. We love you!

~Angie

September 7, 2004

Hello to Everyone,

Our insurance agency contacted us on Friday evening. They have denied our appeal to have Kaelyn's surgery in Seattle. Our surgeon here at Children's in Seattle believes we should continue to fight by going to the legislature and senate. Wade and I have decided that we are just too emotionally spent and could not handle anymore wait for our baby to receive the medical care she so desperately needs. So, Kaelyn and I are flying to CA on Wednesday evening(September 8th). Wade and Jacob will join us the following week.

I am in the process of trying to find a place for us to stay while we wait for a spot to open up at the Ronald McDonald House. I did receive a post in our guest book from a friend who actually lives very close to Palo Alto. So that may be a possibility.

Kaelyn and I will meet all the doctors on Thursday and possibly go through a few more tests. Then, hopefully, she will be able to be listed for her liver. After that, we just wait until an organ becomes available. I guess there really is no better place than sunny CA to wait for an organ! We are going to do some sight seeing and definitely go to the beach.

I believe that Heavenly Father is looking out for us and we will be in the best place possible for Kaelyn's transplant. We have put it into His hands. We wanted to say thank you to all of you who fasted for Kaelyn this weekend. I felt the spirit extremely well on Sunday and since then, things have been falling into place. His power in our lives is amazing and the strength I have received is what keeps me going.

Love to you all...

Angie

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

August 25, 2004

The surgeons and oncologists met yesterday to discuss Kaelyn's latest scans. Their recommendation is to prepare for a liver transplant. There is still the possibility that once they get her into surgery they could find out that they can take out the tumor without doing a transplant, but if they can't resect the tumor they will at least have a new organ ready to do the transplant right then and there. Cancer patients get put to the front of the transplant list, so it is estimated that she could have an organ within 2-3 weeks. That was good news to me, I was afraid we would have to wait months.

The transplant surgeon said that they have a 90% success rate with liver transplants. She would need to be on immune suppressant drugs for the rest of her life, and they themselves have their own unpleasant side effects. Kaelyn will still need to have one more round of chemo after the surgery to make sure all of the cancer cells are dead.

So, this is our road map. It sure has been a bumpy ride. Please continue to pray for our baby. She is so precious to us, she needs all the strength we can lend her both physically and from on high. We are thinking about having another special fast for her and her surgeons this coming fast Sunday, September 5th. If you would like and are able please join us in fasting.

Link to CT Scan of Kaelyn's Liver

Here are some pictures of Kaelyn's latest CT Scans. I thought you all might like to see what it is we are fighting. Just click on the links below.


liver diagram.jpg


CT scan.jpg

August 24, 2004

Well, the scans were completed on Friday August 20. We spoke with the oncologist briefly about what she saw. She said that the hepatic veins seems to disappear into the tumor. The surgeons still need to review the scans and make their recommendation. We did speak with the transplant surgeon yesterday. He actually calmed our fears a bit regarding the transplant (if needed). Cancer patients get pushed to the beginning of the transplant waiting list, so Kaelyn could have a new liver within two weeks of placing her on the list.

Today Kaelyn's team of doctors will review her case and come up with a plan. We should hear from them at the end of the day. So hopefully we will know whether or not she needs a transplant. Just from what I saw on her recent CT and from what the transplant surgeon said, I think she will be going in for a liver transplant. But, you never know, maybe the surgeons will surprise us and say that they think they can take the tumor out. I will update the site as soon as I know for sure what we are going to be facing.

In the mean time, take a look at these cute kids!

~Angie

Big Blue 

August 13, 2004

It just seems like the cancer world is never predictable. The oncologist called yesterday and filled us in on what the surgeons thought of Kaelyn's scans. It seems that they cannot see where the two main veins in the liver are in comparison to the tumor. So they want to postpone the surgery so that they can get better pictures of the liver. They need to do an MRI scan and an Echo Cardiogram. We are hoping to get these done on Monday, so that if everything is okay, Kaelyn can still go into surgery on Tuesday. But, the bad new is, is that if the veins are too intimately involved with the tumor they will not be able to remove the tumor. Kaelyn will have to have a liver transplant at that point. We really pray that we will not have to go down that road.

Please continue to fast this sunday if you are able. We are going to be fasting that the tumor will still be able to be resected and that her veins are not in the way. We know that God is a loving God and He can perform miracles. Please pray for one for our baby.

We love you and will update the site when we find out the results of her scans.

August 10, 2004

We have some wonderful news! The scan on the 6th was great. All of the lung metasteses are dead and gone!! YIPEE!! That was just the best news we have gotten in a very long time. Her liver tumor is also a bit smaller. Surgery is scheduled for August 17th. So, Kaelyn gets a week off chemo to let her get her strength up a bit and off she goes to get that nasty tumor out of her little body. We are all very nervous about the surgery, but know she is in good hands.

We are having a special fast this sunday, August 15th, for Kaelyn. If anyone is interested in participating please do. I believe that anything we can do for our girl Heavenly Father will amplify. We feel all of the blessings that result from your prayers and we thank you all for your support.

On top if it all Kaelyn is finally getting two new teeth! That little girl just likes to do everything at once!

We also have some other good news. The sale of our condo is final! We no longer have to worry about that. What a blessing to have it sold as quickly as it did.

Love to all of you. I will try and update the site as soon as I can after the surgery next week.

~Angie

July 27, 2004

I have not updated the website in a while. It has been a very busy couple of weeks.

Kaelyn has had to have yet another blood transfusion. She also had a sore on her bottem lanced. That was not a fun event. We were admitted overnight for her to recieve some IV antibiotics. Even after all of this, she is so happy! I just know that the she is being embraced by Heavenly arms. She amazes me every day.

We also moved out of our condo this past weekend. It has really been a very stressful week! Boy are we all glad that the condo is almost out of our hair. We are set to sign closing papers on Thursday this week. It will be a blessing to have that finished.

Kaelyn is scheduled to have a CT scan on the 6th of August. We have high hopes for the results of the scan. The docs say that if the tumors in the lungs have all died then we will be in surgury a few days after the scan. As scary as that sounds to me, it will be so wonderful to have that liver tumor removed. After surgury they will give her a little time to recover and then it will be back to more chemo. She will need two more courses which equal six more weeks. Our hope and prayer will be that after all of this she will be cancer free!

We love you all and thank you for all of your help and prayers.

Love,

Angie

July 6, 2004

We had a really great 4th of July. Our neighbors here had a huge show. It was just as good as the professional ones. So, we put Kaelyn to bed, grabbed the baby monitor and went next door! Jacob almost made it to the end, he fell asleep in my arms about 10:30 pm. He had such a blast!

Last Friday, July 2, I took Kaelyn in to get her counts checked. Her Hermaticrit (red blood cell count) was lower than it has ever been - 19.8. So, we spent the day at the hospital getting a blood transfusion. It is amazing what a difference it makes in her energy level! She has been trying to walk and scoot around since Friday. I think she will be walking soon if we keep having her practice! And boy does she want to practice!

Well, I have to make this posting short, Kaelyn is calling.

Love to all.

Angie

July 1, 2004

Well, this website stuff is pretty great. I am excited to keep everyone updated on a more frequent basis.

Kaelyn is starting to feel a little tired today. I think her hematocrit (red blood cell count) is getting low. Yesterday we went in for a check up with the doctor and her count was at 22.8 which they have been giving her a blood transfusion when she gets to 21. A normal count is above 35, so she is getting pretty low. She just gets really pale and really sleepy. So, I am going to go take her in tomorrow for a blood count check and we will see what they want to do. We do have some good news from her check up yesterday though, she has gained some weight!!! Yeah! She is now at 17 lbs 4 oz! Which is great. She bottomed out at 15 lbs about a month ago, so the tube feeding is well worth it.

Jacob is such a sweet heart! We are finding him a new preschool to go to in the fall. He is getting excited, but he did tell me that he is feeling a little shy about going to a new school. Knowing him though, he will waltz through the door on the first day and make a ton of new friends! He is such a friendly boy! He loves summer and is having fun playing at all the beaches and, of course, playing with his daddy's game boy...

By the way, we have sold our condo! Yeah! It closes on the 27th of July. It is such a relief to have that off of our minds.

Well, I will let you all know how it goes tomorrow at the doctor.

~Angie

The Family

This is a picture of all of us together.

Hello Everyone!

Here is the newest news on Kaelyn's condition. We had a CT Scan done on Wednesday this week. Everything is looking wonderful. Wade and I saw the first scans that were done when she was first diagnosed compared to these latest scans and the tumors have shrunk amazingly well. Her liver tumor is at a size where they could resect it if she didn't have the lung metasteses. And the lung tumors are probably 2/3's the size of what they were before we started chemo! It was really great to see the comparison. It helped us feel that all of this chemo is doing it's job and that we can make it
through!

So, I am sure you are all wondering where we go from here. We have already started her third round of chemo and expect to do at least one more round. So the time frame is 6 more weeks of chemo and then they will do another CT Scan to see the progress once again. The doctors seem to expect that after these two rounds of chemo that her lung tumors will be gone and then they will be able to perform surgery to resect the liver tumor. This is all VERY good news to us. After surgery she will still have to do 2 more rounds of chemo (6 weeks) to kill any left over cancer cells. But then she will only have to go into the doctor for check ups, no more chemo by Christmas if all goes well! This is what we hope and pray will happen.

Keep us in your prayers...His power is amazing. We feel His love all around us and the strength just keeps coming even when I think I have no more. Thank you for your support and prayers. We love you all and will keep you updated as often as we can.

Love to you!
Angie Perry