Day +6

Sometimes it is hard to find the time to write because even though we are trapped in a hospital all day, we are extremely busy. There are just so many preventative things we must do to keep Katlyn healthy. For instance, she must have cream applied all over twice a day, lip stuff twice a day, two separate mouth washes four times a day. We are tracking everything she eats and drinks on one sheet of paper, and everything that she drinks and her output on another piece of paper. On top of that we are meeting with a few doctors each day, several specialists, trying to keep our eye on everyone that comes around Katlyn, keep Katlyn calm and entertained and struggling with her eating, and course fitting in making sure we get a little bit of food once in awhile. Yesterday was extermly hectic. As I mentioned in my previous post, Katlyn tested positive for norovirus. Well, in this unit before you enter the actual patients room, there is a prep room. This rooms allows you to put on your gown, mask, wash your hands and clean anything off that you need to bring in this room. Well, with Katlyn's room we shared this prep room with the room next to us. This becomes a problem when Katlyn not only tested positive for norovirus, but especially since she is stooling and there is another immune compromised patient next to us sharing this space. So we were told that Katlyn would have to change rooms. I totally understand and I think it is great that they take measures to make sure all patients are safe. It just gives me a little more piece of mind. Not an easy task though. Everything that went into Katlyn's room had to be cleaned before it went in there. We did not want to have to go through the whole cleaning everything off once again, so we decided to put everything in pillow cases and transport it all over to her new room. So now we have found a new home for everything. We are loving the new room as it is larger and more comfortable and has a great view!! We have met with Katlyns doctors about her progress so far and she is moving along just as planned. She is having the problem with maybe norovirus or maybe chemotherapy on her gut, or even a combination of both. Other than that Katlyn is a smiley little girl, anxious to get better. The doctor this morning was quite surprised to see how well Katlyn. She thought she was going to see a sick little girl. Instead she sees Katlyn smiling and chowing down on ham and waffles. LOL!!! They say day +8 is typically the worst. One of her doctors said Katlyn might not get any sicker from chemotherapy because of the low dose. Fingers crossed that's the case. Please continue to pray for my little sweetheart. It is so warming to know we have so many people who care behind us. p.s. These pics are of Katlyn's new room and that little prep room I was writing about.

Day +4

Day +4 was a pretty good day. Despite all that Katlyn goes through, she still manages to put a smile on our face. Katlyn and I were awoken super early this morning by this stranger in Katlyn's room. I was so confused. I jumped out of bed and ran over to Katlyn. The lady and Katlyn's nurse explained that her PICC line was not working and they had tried to get blood from it as well as infuse and one of the lines had stopped. I was a little annoyed that no one had woken me up and asked the nurse to try again then as her line was sometimes positional. It worked. And then had to draw out all the cath-flo that she had put into the line to try and open it up. Katlyn did have this same nurse today and I explained to her that we want to be woken up of anything is going wrong. Honestly, I was a little shocked that I was not woken up for any of this. Katlyn was totally freaked out. In the end she did not have to have blood taken except from her line. Katlyn's doctor came to visit today to let us know that Katlyn is doing very well. Everything is going as planned. She is having some problems with her frequent and high volume stool, which is hard to pinpoint for sure the cause. He said it may be the chemotherapy and how Katlyn's stomach is so irritated from the norovirus. Awww....yess the Norovirus. The pecky stupid virus is still there. The previous test was a negative, but as a precaution they are testing and retesting here. They have checked for almost everything they can think of including rotavirus and c-diff and of course norovirus. Apparently this pesky virus can really hide out. Hopefully the virus does not flare up and the increase in stool is the chemotherapy alone. Hopefully norovirus keeps at bay and then Katlyn's immune system gets stronger and finally fights it forever. LOL!!! Speaking of the new immune system. Katlyn said this evening...imagine if the man that gave me the immune system knew karate and then my new immune system karate chopped the norovirus out. HERE's HOPING!!!! So for now we continue to struggle with Katlyns intake and outtake of food and fluid and hope this calms down. She does have moments of nausea, but she is still eating her necessary calories. Please pray that Katlyn's little body and mind will keep strong through all of this. Thank you all for the support and kindness.

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)