Thursday, April 9, 2015
Day +252 Finally things are starting to look up for us. Katlyn had her appointment at the IWK yesterday and by the time we left we felt on top of the world. For starters, Katlyn’s new medication working wonders!! She is able to hold her weight and is now eating a regular diet. This takes so much stress off of us. We have also got news from our insurance that they will be covering this special access medication for Katlyn at 80% which is amazing!! She will need this medication until she can get rid of the norovirus so we are looking long term. Using the fundraised money to pay the copay, we will be able to keep her on this medicine long term. Great news considering we had raised money to pay for a couple of months and Katlyn’s doctor informed us that if it worked she would need it long term. Next, Katlyn’s doctor has reduced some of her medication. This means 5 less pills a day. This is enormous considering she was taking 22 meds daily. This is because she is able to finally absorb some nutrients from her food, so she is not needing as much supplementation. Katlyn’s doctor feels as though Katlyn is getting stronger and more stable. If all goes well we may be able to split the appointments up between the IWK and Fredericton. The plan is to return in two weeks and if she is still this well, the following trip will be local. This means only having to travel 4.5 hours away once a month!! Katlyn had an infusion of iron yesterday which was a huge boost, making her feel incredible. She didn’t want it to end because she said it was making her feel so good. The hopes are to give Katlyn 4-5 infusions to get her levels up and hopefully maybe her iron will level out after that, thus resulting in her hemoglobin also regulating. Katlyn’s labs did look pretty good. Her hemoglobin was about the same as two weeks ago, which means it is not dropping. Also, her platelets are finally in normal range. Now I saved the most exciting news for last. We have been waiting for cell growth, specifically Katlyn’s lymphocyte count to come come up. And even more specifically, her tcells to come. Well Katlyn has always had problems with low lymphocyte counts. Before her transplant she averaged 100, which is very very low. Lymphocytes are the part of your immune system that protect you from and fight viruses. Well last visit her count was a little over 500 but we never got two excited because we’ve seen that before and then drop. Well yesterday we were amazed to find out that Katlyn’s lymphocyte count is 810. Finally!! I could have cried. The doctor was so excited. She said that now we can start to work on some of Katlyn’s post transplant tests like a pulmonary function test and dental. We have not been able to do any of this because Katlyn was too at risk. Now we know we still have a long way to go, but this is the little bit of hope we need to get us through this. The more Lymphocytes that Katlyn has, the more of those can be tcells. Our little girl is growing!! In height, in weight and with a beautiful functioning immune system someday soon. God gets all the credit. He has given us the strength to get through this. A miracle is taking place and Katlyn is going to be well. All the prayers and love and support that has pulled us through this all. I know there will still be bumps and we have to protect Katlyn from germs as she is still very immune compromised, but I am very optimistic. We will get there one day at a time. In the meantime, please continue to pray for Katlyn. God bless.
Day +219 know it's been awhile since I've updated but that is because Katlyn has been feeling a little better each day. With each days come a little more energy to do things and keep us busy. I have also been doing some fundraising to raise money for an important medication for Katlyn. Katlyn's doctor has approval from health Canada to try a drug not commercially available in Canada, but has worked to fight norovirus. Because Katlyn has not tcells to fight norovirus on her own, this is what is causing her so many problems. We did have a check up this week at the IWK. They were very happy with Katlyn's progression. We have been given the green light to try so ng feeds for two weeks, and if all goes well, we will be taking her tube out. She is so excited about this, as the ng tube causes so much fear and anxiety for Katlyn. She does so well tolerating so many invasive procedures, but the ng tube has to be inserted through her nose into her stomach, and she hates it. I cannot say I blame her. Our girl has been put through so much, and everyone has a breaking point. Hopefully good news soon. Also, Katlyn has been receiving sub q injection twice a day and next week we are going to try and take one of the injections away. Since there is no food pumping through her stomach through the night, and her gut gets to actually rest, its possible she might tolerate it. I pray she does. Her poor little arms are so sore, tender and all bruised from the injections. It looks like we will be starting the medication to hopefully fight the norovirus in a couple of weeks. I have told the pharmacy to go ahead and order the first month. The province or insurance are not covering the cost of this medication, but thankfully our great friends and family have pulled through and so far we have almost raised enough for 2 months of medication. Thanks so much for all your support. It is so heartwarming and overwhelming. When Katlyn starts this medication, she will need to be hospitalized at the IWK for some close observation for a few days. Since this is not a drug approved for use in Canada, except for in our special case, they want to document the safety and hopefully the proof it clears the virus. Katlyn's newest chimerism test is still 100%, which is amazing. All of her cells are all donor and keep showing us the same results over and over again. We are still waiting on her slowpoke tcells. These tcells are so important. They will allow Katlyn to live a normal healthy life. Also Katlyn's hemoglobin has been low. Her blood work also shows that her iron is low as well. So she has been put on a high dose of iron supplement to treat her anemia. She has tons of energy even though she probably is quite tired. I think its because in comparison to how she felt before, she is feeling great. I cannot only imagine how amazing she will feel when we get the anemia under control. Please continue to pray for our little girl. She is going to get through all this and be strong and healthy. We need all the support we can get right now. Anyone wanting to donate to Katlyn's medical fund: http://www.gofundme.com/n82m4s