Day +29

Day +29 So much great news to report today. Kaltyns neutrophils are at 900 today which means that she has been above 500 long enough to no longer be neutrophenic and we can finally ditch the gowns and masks. Yup that's right. We've been able to give our girl some real smooches today. The doctor was telling Katlyn this morning that he was very proud and impressed with all of her hard work. She has been going outside for short trips, although she does wear a mask because there is construction in the area and we don't want her to get a fungal infection. Over the last couple of days they have started to give Katlyn magnesium by mouth and reduced her hydration, so that she no longer has to be hooked up by IV. So there is no more lugging her pole around except for her IVIG infusions which are a few hours once a week. Next week, as long as Katlyn's neutrophils are to 1000, they are going to perform a test called chimerism. This blood test will tell us how many of those beautiful cells are donor cells. We hope and pray for 100% donor cells. This would confirm engraftment and so far a successful transplant. They have also switched cyclosporin for tacrolimus. This is great news for Katlyn because the cyclosporine was 9 pills in the am and 9 in the pm. With this new med, so far it's 2 tiny pills in the am and two in the pm. So with all the being said, if Katlyn progress keeps in this same direction, it looks like we will be headed home soon. Potentially as early as next week. We will have many precautions to keep Katlyn safe, but she will be in the comfort of her own home. She will eat and sleep better and I just know she will be happier there. She will have many followup appointments at both at the IWK and the DECH. She has an amazing team of doctors that have brought her this far, and I just know she is going to be in good hands. Thank you all for your continued prayers and support!!!

Day +26

Day +26 I honestly cannot even imagine being happier than I am right now. Funny thing is, as Katlyn's cells grow we are just going to be happier and happier. Katlyn got woken up this morning very early because they need her to take her MMF every 8 hours for some bloodwork to make sure she is getting proper dosage for her immune suppressants. Waking Katlyn up so early was kind of harsh for a little girl who is so tired, but the nurse decided to soften the blow by showing us Katlyn's bloodwork. She has already reached 700 neutrophils and 200 lymphocytes. We immediately called dad. Her platelets are now in the normal range as well, and we are just waiting for the hemoglobin to come up too (it will). So one more day of neutrophils and we can ditch the gowns, and masks!! I will be able to finally give my babes a kiss again. They are also removing the rest of Katlyn's hydration today . This means that she will only have one line giving her magnesium. She no longer has any medications running through it either. Very soon she will not need to be hooked up at all!! Her magnesium levels are low, but not danger low. They are trying to maintain a good level with a drug that holds the magnesium in Katlyn's body longer. They could just give her magnesium by mouth, but it causes diarrhea Because Katlyn has norovirus and problems already, we don't want to make that situation worse. Eventually Katlyn's lymphocytes will be able to fight off the norovirus, but not yet. With immune suppressants we will, in about 5 more months time, slowly turn her immune system on. Right now we are suppressing it so that it can adapt to its new environment and protect Katlyn, rather than fight against her. This immune suppressant is used to prevent graft versus host disease or gvhd. Today is a great day!! Thanks so much to everyone for your continued prayers and support. Keep it coming!!!!

Day +23

Day +23 is a great day!! Katlyn woke up this morning feeling sleepy, but not nauseous. She quickly got some breakfast in and then proceeded to take 12 pills. She barely complained about taking them at all. She had a morning snack and lunch was a success. Her tastes buds are back so things are starting to be delicious again. Nothing sweeter for us right now than hearing our baby girl say "I'm hungry" or "I feel great." You can see it. There is more life to her and she is all smiley. What a blessing!!! She has hardly said much about her stomach today, so here's hoping the nausea is going away. The doctor has continued to take her off the IV meds and starting tomorrow we will start to pull back the hydration. Johnathan had a great idea to have the nurse write down all of Katlyn's meds and try to rearrange some to make it easier for Katlyn. Cyclosporin alone is 8 pills and MMF is another 2. These two pills have to be taken at then same times everyday and are super important in preventing gvhd. So here we are trying to get 12 pills into her and then she has her regular pills as well. We looked at what she has and shuffled it around a bit so that she can focus on just those and the other meds are throughout the day. Trust me when I say, she is one full girl after 12 pills. Also, Katlyn has been taking allegra for quite awhile not because she was breaking out in hives all of the time for some unknown reason. The allegra prevented Katlyn from breaking out in hives at all. We asked the doctor if we could try taking this away since she has done so well for so long, and we are in a safe place to do this. He agreed that is would be a good idea. Any allergies that Katlyn used to have may be different now anyway since she has a brand new immune system. Speaking of her immune stem. All is looking great. Every morning is so exciting for us. If the numbers stay the same than its just confirmation that all is well, and if anything goes up then it CHRISTMAS!!! Her neutrophils today were 200, lymphocytes 100, and the platelets and hemoglobin continue to go up. It's amazing. We are so pleased with how well Katlyn is doing.

Day +21

Day +21 I got to say that Katlyn is doing amazing!! A true blessing. Today her neutrophils are 300. Her white blood cells continue to double each day, her hemoglobin and platelets appear to be rising on their own. Things are progressing a lot faster than Johnathan or I ever imagined they would. Each morning is exciting to see her cells at the same count or going up. As I mentioned before, once her neutrophils reach 500 she will be a little more safe and feeling a lot better. Neutrophenia leaves Katlyn very susceptible to bacteria infection. Its so amazing because Katlyn had so much difficulty reaching 500 before, and here were are just a little closer everyday. With Katlyn's platelets being to a safer level today we have asked the nurse to get in touch with the message therapist and ask if they can come visit. The art therapist is finally back from vacation as spent sometime with Katlyn yesterday. The music therapist will be back next week. The nausea continues to be a problem for Katlyn and trying to get her to eat is a constant fight. This morning I even made her some cinnamon buns and to my surprise she still doesn't want to eat. On the plus side though we are starting to take all the IV drugs away and starting to introduce everything by pill. Cyclosporin is already a success with 8 pills in the morning and 8 at night. Today we will be switching MMF, another med to prevent gvhd. This pill will be 3 times a day. There are a few more meds and vitamins she has been getting by pill as well, but after today the only med that will remain by IV zantac. Then we will slowly reduce the amount of hydration by IV and increase by mouth. Because the cyclosporin is toxic to the kidneys it will be important for Katlyn to drink 2.5 liters of fluid a day. I cannot even believe we are to this point already. Aside from the nausea Katlyn is doing perfect!!! Thank you all for your continued prayers and support. It is greatly appreciated!!!

Day +19

Day +19 So this morning we gave Katlyn gravol a couple of hours before she woke up. She was less nauseous when she woke up. We also gave her zofran 30 mins before each meal. She did eat a little today but it was a lot of work. We also started a new drug called maxeran. This drug is usually the third level they go to when the others fail, but gravol doesn't work for Katlyn as it helps nausea but she passes out. We started this new drug this evening and it seems to be working pretty good.