This post may jump around a bit, but you should get the overall picture. We still are not 100% sure what is going on with Mikayla. Trying to get an answer has become an unspoken challenge around here. There has been several disciplines of doctors in and out and each has there own opinion. When Mikayla's "rash" started we went to the hospital three days in a row expressing our concerns only to be told that it looks like GVHD and to put cream on it. They finally took us seriously when small blisters began to form on her legs. That was around midnight and the next day everything changed. Her skin began to rapidly transform and withing two days she was covered in red skin with huge blisters. Dermatology was the number one team involved at that point. They really didn't do much besides make Mikayla cry. Mikayla has a synthetic line that comes out of her chest where she receives fluids and medicine called a hicman. Because of the importance of that site wound care treated it. After a few days the site looked great. Not perfect, but compared to the rest of Mikayal's body we couldn't ask for more. So, there began talk that maybe we should treat her body like her hicman site was being treated. Dermatology did not agree. Instead they continued a course of coming in and popping blisters. On Sunday finally somebody put their foot down and things changed. It was agreed that the burn care nurses and doctors would get involved and that dermatology would back off. We were told that the burn team would come in late Sunday and sedate Mikayla and begin to debride her body. Mikayla is at a huge risk for infection so instead of a whirlpool it has to be done manually. They came in and while the nurse was still applying the sedation medicine in her hicman they began to work. Giving no time for the sedation to start its effect of relaxing you. For more than thirty minutes Mikayla endured so much pain her eyes and tongue were bleeding from crying. Very, very cruel act. They only had the heart to do her legs. They muffed the whole thing up. We were not in the room to realize that they proceeded as they did with little concern for her comfort. Rea blew up! She got on to every doctor and nurse that was involved. We got apologies, but that is not what we are after. The conglomerate known as the team decided to change methods. They are supposedly going back through her complete history and trying to dig deep and find out what is the root cause for her condition. Monday Mikayla was given a complete day of rest. Nobody got to poke her. She called during the night and sounded great and her mood was upbeat. Today she will be heading to the O.R. to be put to sleep so that the burn team can begin to extract all her dead skin. Why they didn't do that in the beginning I don't know.

Tuesday through 3

Today started very well. Our nurse Miss Jenny was able to put some eye drops in her eyes before i woke. I was getting Mikayla up to go to the bathroom and housekeeping popped her head in and asked if it was ok to clean. It was a good time because while there I would freshen her up and treat her skin. They told us it was ok to come out after a few minutes. Mikayla has a pretty tough time getting in and out of bed. Its an air bed about three feet off the ground. We enginered some steps, stools, and a chair to make it easier. Mikayla was at the top of this monstrosity when housekeeping was trying to come back in. I told her we were not ready. I was looking for privacy more than anything. Less than a minute later still trying to get Mikayla into the bed she asked again while popping her head in the room if she could come in and get the bathroom. Out of frustration I told her get it done and turned Mikayla around and set her on the bed. I moved the chair so the girl could get past not realizing Mikayla was on an air bed and that the only thing really holding her was the deflating mattress. When I moved she fell out of the bed on to her feet. It scared the hell out of us both. She was shakin up emotionally and some of her skin was damaged in the process. She took some deep breaths and got the courage to go ahead and try to get back in bed but this time with some assistance from her CNA. Her nurse came back soon after and began to treat her with no problems. She took her time and had a good grasp of when to give breaks and what to say. All was humming along pretty smooth then this horde of beetles known has dermotologist came swarming in. In case you can't tell nobody like them. The bed side manners need some real work as well as their piss poor attitudes. They remind you of snotty high school cheerleaders. Two of them were for sure doctors and the other three really had no business there. Mikayla became frustrated very quickly. It was overwhelming with the crowd hovering. Our nurse took a stand and ran a few of them off. We as parents would love nothing more than to not have to deal with them and do it ourselves. It's always high stress when they come. The poke her for up to a half hour with no emotions. They would rather argue with her than to do what she wants. Mikayla and I talked and we agreed that if the one comes back that poked her leg and made it bleed comes back that I would not let her do anything. When they left Mikayla settled down and enjoyed her 8th Swiss Miss Roll. She has relaxed and been calm for most of the remainder of the time. I got word that they will slow the steroids down and weene her off. As for treatment it looks like will continue much of the same course as now. There is a lot of roosters in the hen house and conflicts though slight exist between them as what to do. In the end only one opinion for treatment is all that matters and that is the opinion of her transplant doctor. She is finding ways do deal with different situations. For example her tounge burns when she eats so she has found that q-tips pressed at the point of the burn makes her tounge feel better. She is couragous and inventive.

GVHD and progress

Where to start? We are still being told GVHD. Our doctor says that Mikayla's case is similar to cases before special transplant drugs like Tacrolimus were around. The Tacro is supposed to prevent this type of GVHD from happening. Who knows maybe we got a bad bottle of the stuff cause it ain't doing it's job. She is considered a severe case. I won't go into detail about how she looks anymore because it's kind of a pointless thing to do. It has settled down a bit. The previous "bad" spots are changing and the old "good" spots are starting to look like the previous bad spots. Kind of confusing. It is like everything wants or needs to break out to a peak before it tapers off. We don't know if this will happen again. One thing that is hopeful is that where the new skin is that skin looks good in color. To my eyes it looks very painful, but Mikayla is doing well with the pain. I think the Dr. has the right mixture of pain drugs to keep her comfortable. Her steroids make her have extreme moods. She is very vocal when she wants things. Most of it is from being scared and some is from the pain. We can not have any visitors for some time to come. Mikaylas Christmas will be spent here in the hospital. We will do the best we can to make sure that she gets everything from santa that she requested. We did get two really solid pieces of good news amongst what is happening now. Mikayla still only has GVHD in the skin and not the GI tract or liver. The other tidbit that really gives us hope is that Mikayla is cancer free. Our road so far has been long with a lot of good times. For the most part she has sailed right through the cancer. The GVHD is by far giving us more fear than the cancer ever had. I think its just a visual thing. You couldn't see the cancer and somehow it wasn't as real as what is going on now. She is asleep finally. Most of her day today was spent yelling at doctors and nurses. I hope nobody takes it to heart because underneath that grumpy facad is still the same sweet Mikayla that most have come to enjoy.

Graph Vs. Host Disease

The results of the biopsy are not yet in, but from what all the doctors are saying Mikayla has GVHD (graph vs. host disease). Acute GVHD is graded in 5 steps from 0-IV based on involvement of the skin, liver, and GI tract. Grade 0 indicates no clinical evidence of disease. Grades I-IV are graded functionally. Grade I indicates rash on less than 50% of skin and no gut or liver involvement. Grade II indicates rash covering more than 50% of skin, bilirubin level of 2-3 mg/dL, diarrhea of 10-15 mL/kg/d, or persistent nausea. Grade III or IV indicates generalized erythroderma with bullous formation, bilirubin level of more than 3 mg/dL, or diarrhea of more than 16 mL/kg/d. Mikayla is not spot on in one grade. Her skin is in the grade III catagory, but other symptoms are not there. Her liver and GI are still checking out fine. Grade III also states that nearly 100% of her skin is covered and Mikayla is maybe around 80%. She is on a constant drip of Morphine and other drugs that help stop the process of the GVHD. It is a scary situation. Infection as always is a great concern. If the GVHD stops and infection is avoided we should come out of things ok. If GVHD begins to attack the GI and liver it gets very complicated. We are still in the early stages and trying together with the teams of doctors to grasp what is happening. We have pried as much info as we can from the doctors, but I think that we have to wait on the biopsy to get better answers. Her treatment is very aggressive and should help. The only other cause for this would be that of an allergic reaction to medicine. All though it is the unlikely culprit it is still something that maybe the root of the cause. Mikayla has been a trooper. Even though she is covered in what looks to be 3rd degree burns she is carring on with herself much as she always does.

Mikayla was admitted back to the hospital around 12 in the morning. Her rash had began to blister and consume all her skin except her face. More info Monday.

Ist Out Patient visit

It's a cold am in KC. KK had spam and rice, choc milk for breakfast @ 6:45 am. She can't have anything but clear liquid from 7 to 11 am. Clinic , LP/Bone marrow aspirate today. Pretty much all day in the hosp for out pt visit. Rashes in her body getting worse, hoping it is ok. A little GVHD is ok but not a lot. What is a little and a lot is something I am not certain.Will know more today. God bless, Amen..We will post details of today's visit later. Thank you.....................

Christmas Lights

All day today Mikayla asked to go see "Christmas in the Park". It's a trail of Christmas lights in the Lee Summit area. The day wore on and I told her we would have to do it another day around 8:00pm. She seemed down so I told her come on get dressed we will go as soon as you're ready. We arrived there around 9:30pm. She enjoyed it and it was the first time she has done something she wanted in a long time. She has to wake up early tomorrow because she has clinics tomorrow to undergo some tests. One of the tests is a bone marrow aspirate. Her blood counts are really good and the results of the aspirate should come out favorable. When we left the hospital she had a bit of Graph vs Host. My intelligence level on the subject isn't that great so we will update next time with what it means and how good or bad it is. She has done well in the short amount of time she has been out. She is eating and drinking well. She walks around more and plays with her brothers and sister. Taking her medicine is still a chore for her though. Sometimes she does it fast and others it takes up to an hour to get it all in. All and all she is doing very well and continues to get better all the time.