Day +2

Katlyn was in great spirits all day. I did however notice she did seem a lot more tired today. I imagine the chemotherapy and immune-suppressants, being the necessary evil that they are, are taking a toll on Katlyn's little body. Last night I spoke with the nutritionist and she explained that right now it is just important to get Katlyn eating, and what she eats is less important. So when I brought Katlyn her supper today and she turned her nose up, I asked her if she wanted me to go and make her a grill cheese sandwich. It's not just as simple as making a grill cheese sandwich. For starters I do not have all the cooking equipment I do at home, but I have to be incredibly careful as Katlyn no longer has any protection in her body. She can get sick so easily. I am careful all the time since Katlyn is immune compromised, but having to be this careful scares me. There is a toaster oven in the patient kitchen. So I lined the toaster oven with tinfoil. I had bought a loaf of bread for Katlyn when we first came. Now the proper way to store something like bread is to divide it into ziplock bags in the freezer. I had already planned for this too. The kitchen cannot make Katlyn a grilled cheese sandwich and send it up to me, but the can send me little individual butter and a slice of cheese. So there I was. I fully cleaned my work station and assembled her grill cheese. The proper way to travel to her room with her food is in one of those plate holders with the covers. I had save one from one of her previous meals so I had it all clean and ready to go. I did not have an oven mitt to grab the tray or a spatula to flip or get the grill cheese. I used paper towel to grab the tray and I used a plastic fork and spoon to get the grill cheese. At that point I had a package of utensils and I had already used the knife to spread the butter on the bread. LOL!!! I brought the tray to Katlyns room and cleaned it all off and then served it to her. In a matter of only a few minutes it was gone, and she was asking for a new one. This time I grabbed a couple of extra knives from Katlyns room (I have a sealed bag full), and off I went for round 2. It worked out a lot better, but next time John runs to the store I'm going to add a couple of extra items to his list to make my life easier. Katlyn then started to ask about me making her some kraft dinner. I can, but its not a simple task and I honestly don't know if she would like it. I would cook as normal but then when I add the package of cheese, I then have to cook for and additional 10 mins or put in oven at 350 for 10 mins. This is to kill any bacteria that may be in that package of cheese. Things are a lot stricter while Katlyn is in the hospital, but they will not lighten up much for awhile after we are home. It's usually about 6 months after transplant. We don't want to take any chances. So today Katlyn did have some nausea and the nurse had to give her some gravel as it had been too soon since she had had her other anti-nausea med. This of course put her to sleep, but she did no longer feel sick. They seem to be doing a good job so far being proactive in preventing any problems, and managing her symptoms well with meds. Also, Johnathan and I have to agree that we have no met a nurse yet we didn't like. This hospital is truly amazing. She is in good hands, and to top it off she has great parents watching out for her.

Day +1 ( one day late)

Day +1 was a pretty good day. Katlyn and Johnathan had been up for most of the night before but they were in good spirits. I can tell Katlyn is having problems with her stomach but hopefully it resolves itself quickly. We have been told for the weekend to focus less on making sure Katlyn gets the right balance of the right foods and more on getting enough calories. She does not have much of an appetite and I hate it. She is still eating though, and we still have not had to turn to a feeding tube. They watch her weight and intake and outtake very closely. Today katlyn got her ivig, which she will continue to receive every week. At one point today Katlyns blood pressure was high, so they gave her medicine to lose it, And then hours later it was low. My mind was put at ease tonight though when it was back to normal. I also do notice that she has been getting a lot of headaches too, but overall she is doing well. Better than I expected, and she has a good attitude for most of the day.

Day 0

We are officially day 0. What an exciting and nerve wrecking day this has been. Katlyn now has her new bone marrow so that she may have a brand new immune system. She now has a very low cell count from the chemotherapy and will continue to feel the effects of chemo for the next 2-3 weeks. Here's hoping that side effects are minimal. She is very susceptible to infection, so we must do our best to keep her as safe as we can. Then slowly her new marrow will engraft and her cells will multiply. This is the start of a new life for our baby girl. As she was saying all day "Im one step closer to having a dog." Please continue to pray for katlyn as this is a very exciting and scary time. (The first pic is Katlyn before transplant and the second is the new marrow)

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.