Last day of Chemo!

So today marked the last day of Chemotherapy. whew!!! Busulfan did have to be bumped up in dose and then an extra day added, but that part is over now. Today was a pretty good day considering. My girl was smiling a lot which makes us so happy. She would hum and whistle. Despite being trapped in this little hospital room and being bumped full of drugs that make her feel all crummy and being picked at a lot, she still manages to magically make me smile.

So now that Katlyns chemo is out of the way her immune system is going to start to die. What little she does have is going to be gone, and this is in order to make room for her new bone marrow. So, the doctors have already started to give Katlyn a good protection as she will be suseptable to infection. She is also getting cyclosporin as an immune suppressant. This drug seems to have some side effects for Katlyn. This morning during her first dose she woke up feeling like she was burning. She complained this afternoon that she didn't feel well and her blood pressure was high. Luckily they were able to give her a drug to help with this. When the nurse brought the medicine she gave Katlyn a choice to take the liquid or that she could put the liquid in a capsule for Katlyn to swallow. When Katlyn realized that she was going to put the liquid in the capsule right in front of her, as then asked Katlyn if she would like to help, it became a very exciting time.

We are still waiting to see how the medicine works and if will (fingers crossed) bring her blood pressure down. In the days to come Katlyn is going to start feeling very sick and feeling all the terrible side effects that go with chemotherapy. I pray that the discomfort is minimal and that I get to see her smile a lot. We've been asking a lot of questions about what to expect and how long this stuff with last, and I'm not going to go into detail about side effect as most people already know what that brings, but usually the symptoms will last for 3-4 weeks after transplant. Our job will be to keep her as safe as possible so that she doesn't catch anything as she is already and will be so much more immune compromised. We try our best to fill our days the best we can. We have been playing a lot of minecraft and doing some art and watching a lot of Goosebumps. We have really been trying to focus on keeping busy and staying positive. The mail that has been coming in is incredible. Katlyn really looks forward to it and the way she reads all these beautiful cards and then this sweet little smile appears on her face. We have been putting her cards on the walls to help remind all of us that we have a lot of support during this difficult time. She was so lucky to receive an awesome package of crystals from Aunt Sue. She was just amazed that she now has real crystals.

So tomorrow and Wednesday are rest days. Ya, sure there are still alot of drugs and poking at Katlyn, but she has no more chemo!! Wednesday is the day that the day that the donor will be harvested and then Thursday is the big day!!! They guestimate that around 6pm Katlyn will receive her new marrow. Then we wait. We wait for her to engraft and for the new marrow to take hold and for her own body not to reject the new marrow. Here's hoping and praying for an awesome day tomorrow. Lots and lots of smiles and giggles is my goal.

Day 1 of chemotherapy

So Katlyn was admitted into the hospital last night, and this morning we started her Chemotherapy and immune suppressant. She is getting reduced intesity chemotherapy (CGD protocol) and her schedule is to recieve Fludararbine (chemo) and Campath (immune suppresant) for the first three days. On saturday and sunday she will recieve Fludararbine and Busulfan (chemo). And then on monday she will get Fludararbine and no other types. On July 29 & 30 (donor harvest day) Katlyn will have a break from the chemo drugs, and then on July 31 Katlyn will have her bone marrow transplant. Today started off pretty unevenful with her dose of chemo, but with the Campath Katlyn started to complain that she had a headache and that her chest was hurting when she breathed. It was awful. We were trying so hard to calm her down but on top of not feeling well, I think her anxiety was making things worse. We gave her some Tyelnol, benadryl and oxygen which did help a bit, and then Respitory therapy ended up having to come and giving her some ventalin. While she was focused on taking the inhaler, I grabbed a couple of cards for her to open. It worked perfectly to calm her down as she ready all the kind and beautiful words. I cannot even put into words how meaningful these cards have been for Katlyn today. I can tell that she is so stressed out and they really make her smile and giggle as she reads them. Thank you to everyone who has been so thoughtful to send cards to her already and to those who continue to. The nurses at the hospital are amazing! They are so knowledgeable about how to care for Katlyn, which take a lot of stress away from the whole ordeal. Sure we have been living our whole lives with Katlyn being immune compromised, but this is different. She will have nothing, and with be so compromised. There are so many things we need to do to keep her safe. Like for instance; when we bring in her meal, she has an hour to finish it. Same goes with water. If I let her drink from the bottle of water, then she will have 1 hour with that bottle and then I chuck it. If I pour her water into a glass, then the bottle of water will be good for 24 hours, and the glass for 1. There is so much to remember, even for us. I really must get some sleep now though. Its my night at the Ronald Mcdonald house and lack of sleep is really compounding the problem. I have found myself on the brink of a major cry all day. I hope and pray for an uneventful smooth day tomorrow. I'm hoping Katlyn continues to eat well and feel great. I hope for a day of giggles and lots of crafts.

Perfect Match

So I got confirmation today that Katlyn has a perfect 10 out of 10 match!! Also, we were told that it would be ideal if the donor was male, as females that have been pregnant, can lead to a higher risk for graft versus host disease, and Katlyn's donor is a 30-year-old male!! I also learned today that for Katlyn's conditioning we will use a reduced intensity protocol. This will mean that they will give Katlyn less chemotherapy but more immunosuppressant medication. We will do this in order to avoid unwanted toxicity, and it will decrease rejection to the lowest. I know that this means her chemo is still going to be awful for her, but not as bad as it could have been. We also have tentative dates and are just waiting on the donor to confirm. Katlyn's admission to hospital to start conditioning would be on July 9 and then her bone marrow transplant with be on July 18. I can going through a whirlwind of emotions right now, but I just want to get my little girl better. I am extremely grateful to this unknown donor. What an amazing human being. Our hero.

So not a whole lot has gone on over the past few years with Katlyn as we have been patiently waiting for her gene therapy to start working. Well, Unfortunately we are finally at the point where we can say that it has not worked. We recently checked Katlyn's bone marrow to see if any of her stem cells very carrying the new gene. This is very important because it would mean that she was now producing these cells on her own. Well, she is not. Some of these cells are still inside of her but they are old and no new ones are being produced. So just like that, it failed. I can go on and on about how frustrated and upset I am, but I'm not going to. We had to try. Gene therapy just looked so perfect, but we knew from the beginning that it is still in the experimental stages. Not perfected yet. I do, however, feel as though Katlyn has contributed to research with her condition, thus making things easier someday. Actually I think she has helped a lot. So now we are moving on to the next chapter and Katlyn will be going for a bone marrow transplant in Montreal. We have activated the donor list and are aiming for her transplant to be at the beginning of July. Of course this depends a lot on the donor. Katlyn is in great shape for transplant. She recently tested negative for the norovirus, which she has carried for more that 2 years now. She is also no longer anemic and she is thriving well. She is growing!!! Her feet are now a size 2.5!! Her liver, which has been quite distressed over the last couple of years, also seems to have calmed down a bit. The way we see it is that we need to give Katlyn the best fighting chance at the healthiest life possible. She wants a dog more than anything!!! I pray someday she might be able to have new best friend puppy, and that is what we are focusing on right now. Katlyn is not an infant, and I have always been open and honest with her. She knows about transplant. She doesn't know all the details, but neither do I. I will however tell her as much as I can (without scaring her) along the way so that she can be prepared. For now though, we will focus on watching the calendar, knowing that it is quickly approaching. We will focus on one day maybe having a puppy, and on all the things we can bring with us so that she will be occupied during the many weeks in isolation. I will be blogging again so that all of our friends and family may follow along and someday Katlyn will be able to read as well. And to you praying type-- your prayers really have carried us through all of this so far. Please pray that my daughter will soon be healthy.

I know. I know. I know. It has been ages since I have wrote anything about Katlyn. I think it is real time I got started at it again since it has worked so well in the past at allowing me to get all of these feelings off my chest. Things have been just a roller coaster over the past here. Here's hoping that 2012 is a great year for Katlyn. Here's hoping that she will finally get healthy.

So recently we had an appointment at NIH and things went pretty good. The much dreaded appointment was really going to be all about discussing how Katlyn's gene therapy is not working how it should, and what we are going to do as a plan B. Katlyn caught norovirus two years ago and she has been struggling with it ever since. Its at bay, but it just won't go away. It has really started to take its toll on her little body. She had been up to 57 lbs, and dropped down to 41 lbs. She is now anemic and does not absorb vitamin E. So Katlyn's parents, we decided it was time to do something about it, before the virus gets her very ill and its too late. Also, Katlyn has not been able to go to school this year. She is supposed to be in kindergarten, but it is just to risky to have her around so many children, so she stays home with me.

So Katlyn has been receiving IVIG orally. At first I thought it was outrageous!!! But it honestly has worked in making her feel better. Every time we put her on, she actually gains weight and doesn't feel sick all the time. Unfortunately it hasn't been enough to rid the virus from her gut, and she continues to live with it. So, our next plan of action is to put Katlyn back on Adagen. Hopefully that will be enough to rid her body of the virus. In the past we have always been told that giving Katlyn the Adagen would be deeming her gene therapy a failure. However, there is some new data that may suggest that there is a chance it may actually help the gene therapy to work. This makes us so hopeful!!!!

The problem with Adagen is that it is not available commercially and it is so so so expensive. Because it is not available in Canada, our insurance company said that they would not cover the cost. So our next approach was to ask the New Brunswick government for help. I was really shocked when they also said that they would not help with the cost. Typically this drug is covered under a provinces catrostrphic drug plan, but NB does not have one. So determined as we were, we appealed the insurance companies decision to not cover the drug. In the end they did indeed decide to cover the cost at 80%. At about $350,000/year, this would still be too difficult, but luckily there is a clause that says once our annual copay reaches $3000, the policy kicks in 100%. This is awesome awesome news!!!! Apparently we are supposed to come up with the upfront cost of the drug and then be reimbursed. LOL!!! Yeah, who has $30,000 just sitting around. Also, the $3000 copay would be on the first shipment. We still haven't figured out those little details yet, which stresses me out beyond belief. However, we did get most of it covered so far. I know its going to work out. I just keep praying!!!! We don't have that kind of money, even if it is $3000.

So once Katlyn gets this Adagen, she should be strong enough to get rid of the virus. This drug is a treatment for her condition, but not a cure. As her doctor recently told me, we need to look at it as a way to get her healthy enough to discuss the plan B. I don't even want to think about it. Every time I do, it just makes me so incredibly sad.

A bone marrow transplant.

For now, I am only going to focus on getting my baby healthy. Why she has to go through so much, I will never ever know. It seems so incredibly unfair. I am trying to just have faith in God. Its a challenge because sometimes I just feel so helpless, angry and sad. I have seen in the past though, that prayer is very very powerful. Now, she needs prayers more than ever. Happy new year everyone. May your best day of 2011 be your worst day of 2012.