The Diagnosis

We sat down with her doctors today and we definitely didn't like what they had to say. She has a rare form of leukemia, called AMKL. I can't even spell what that acronym means. We have a lot of research to do and we will be here for awhile. What I do know is that the specific form of AMKL that she has is most common in down syndrome children. There are only 40 cases of typical children with AMKL. Some have beaten it, but like i said there are only 40 known cases, ever. Typically remission is about 9 months. After three heavy doses of chemo she'll have a bone marrow transplant. I'll be tested, and will look into having the babies placenta or chord blood tested as well, if neither of us are a match (or todd), we'll look into chord blood banks & willing donors. This really sucks. I don't know what to say. We'll be starting chemo Monday. I'll keep posting. Both Todd and my family is on their way down here so we can tell them just what I wrote above. I'll continue to update as I know more and as we go through this trialsome time.

Ending Day 9

So far, no news. The doctors came in earlier today to let us know that they're still waiting on the test results. We should get together tomorrow morning, early afternoon to hear what they have to say. They are testing for a more rare type of leukemia. I believe the acronym is AMKL. She gave some information to Todd earlier, but I haven't seen anything yet. We keep praying this is a fluke and she'll be okay and healthy in no time. If it isn't AMKL and her stats stay steady we should be able to go home early next week & just come for blood tests and possible transfusions a few times a week. Last night she ended up having another blood transfusion as well. She's still in wonderful spirits, playing and walking. She's started to say two syllable words as well. It's wonderful to hear. She's saying all kinds of things since we've been here. We play play play, and walk walk walk. Right now she's crying because she doesn't want to sleep in her crib. She wants to sleep with Mama. It breaks my heart to hear her cry. I'm trying not to give in as we've slept together on this horrific chair almost every night that we've been here and it's bad enough with just me on it. I just watch her sleep when she's here too. Todd and I are okay. We're getting anxious to find something out and hopefully go home soon. Neither of us want to be home without Kate though. There have been so many up's and down's since we've been here, once we find out what this is it will be nice to finally have some consistency. Of course we pray that she doesn't have a rare form of leukemia and she is just fighting something off. Again, we should find out tomorrow. They've been saying that for 9 days though. I've gotten used to this just being a waiting game. It's a horrible waiting game. Thank you to everyone for your thoughts, prayers, emails, voicemails & texts. I'm sorry I haven't gotten back to most of you, I'm not much of a phone person, especially under the circumstances. I'll post here when I know something. Thanks again.

Love,
Krystal

Day 8

Kate had another bone marrow biopsy this morning. She woke up to the little girl next to her screaming, so instead of a peaceful wake, she woke up startled and crying herself. I think she was in pain. The doctors said that sometimes the anestesia doesn't ware off well. After some painful crying and refusing to drink or eat they gave her a very small dose of morphine. After the morphine she drank & ate a little bit and insisted that I lay down with her. We took a nap for a few hours. She hasn't had much of an appetite the last few days. She still drinks well, but isn't eating well. Anyway, the reason we did another bone marrow biopsy is because yesterday's labs showed new young cells. We want to make sure those cells are healthy cells. Her diagnosis is still unknown and really they have no idea what is going on with her. She had more platelats last night because they keep dropping. Her red blood cells have stayed steady the last few days, which is great news. Now if only we could find out why this is happening.

I'm not sure if I mentioned that we refused to do the IVIG the other night. We weren't happy with the nurse and we weren't able to talk to the doctor and ask the questions we wanted to ask either. The next day the doctor said it was totally ok that we didn't do it, it was mostly just a trial thing anyway.

I feel like I've been very patient and very together. I'm starting to lose my patience. I just want my daughter to be better so we can go back home, as a family, and get back to life.

Keep our family, especially Kate, in your prayers.

Tuesday

Todd and I decided not to do the IVIG last night. From the research we did the risks were too much for us to feel comfortable without asking the doctor more questions. The doctor was gone by the time we had enough information about what and why, so we figured since it wasn't an emergency thing we could wait until today to ask questions. Last night was a rough one. Kate has developed a cold since we have been here. Her cough was dry for a couple days but now she has a nasty runny nose and a deeper cough. It sounds painful. The coughing kept her up for awhile last night. She would wake up and just cry. She was so tired, it was so sad. They decided to give her a chest x-ray today as well to make sure this cold is not the result of an infection. Also, they flush her central cathetor everyday. Today one of the lines was just fine but the second was difficult to flush. They'll try again in 6 hours, if it is still difficult to flush there might be a clot in there. It is treatable and they'll be able to get it out, we just don't want there to be any complications. I'll update later. Thanks for checking in!

6 Days In...

Not much change since yesterday. Kate's still a little fireball, she can't stand to stay still or in one place. No matter where we are, unless there are kids to play with, I can pretty much set the timer for 5 minutes and I'll here "walk, walk, walk!" She cannot stand hanging in one place, especially our room! Her hemoglobin levels are still steady. A blood transfusion lasts a few weeks, so the fact that it is steady doesn't necessarily mean that her body is creating it's own, but we're hoping that is a possibility. We won't know whether it's only the transfused cells or if her body is helping out as well for a couple weeks. Her platelates dropped 30,000 over the last 24 hours. That isn't as bad as the day before, but it's still a lot. She's not at the point where she needs another transfusion yet. They just keep running labs & doing tests. They are IV injecting Immune globulin. Apparently one of her antibody levels was low, not dangerously, but they want to up it with the IVIG to see if it makes a difference in her health. Today, Dr. Schiff, said that her case is "just wierd". She said it's strange the way everything is happening inside her. Most the time they don't see 2/3 (red blood cells, white blood cells, platelates) depleting or dangerously low. Usually it is either one or all. Todd is doing more research on the IVIG. Thank you to everyone who has come to visit & show their love & support. It is much appreciated! Also, thank you for the prayers!

Sunday's News

Kate's still amazing. She's happy & energetic & goin crazy being stuck in a hospital! I can't blame her, we're going a little crazy as well. Her labs from last night showed her platelate level dropped from 145,000 (after her second platelate transfusion) to 95,000. It dropped 50,000 platelates in one day. If her labs in the morning reflect the same thing we know that her body still isn't creating platelates & we'll have to be here for awhile longer. If her platelates only drop, say 10,000, then it might just be the transfused platelates being killed off & she may be creating some here & there. Either way, she needs to have some consistency for a few days before we can leave.

Katelyn was full of energy today, which is great. However, she wasn't hydrating herself or eating nearly as much as yesterday. Hopefully she just wasn't hungry. If it's the same tomorrow I think there might be a little something wrong & they may have to put her back on IV. We'll see. Keep praying for her. Thanks to everyone for their visits, prayers & thoughts!

Katelyn's Battle & The Scariest Time of Our Life

The last few days have literally been the scariest days of my life. We took Kate to her routine 15 month check up on Tuesday. She is slightly anemic so they check her iron levels whenever we go in. After the finger prick they said her iron levels we're incredibly low so they pricked a finger from her other hand. Again they siad the same thing. They decided to draw blood. Kate was intrigued by it, she just watched and let them stick her with the needle and everything, after they switched to the second tube she was pissed off and inpatient and started crying. Of course they still had to give her two of her immunizations... so the screaming lasted awhile. Anyway, she was over it and we were on with our day. Wednesday morning her pediatrition called & Todd answered, when he came in to the room he said we need to take Kate to the hospital, there's something wrong with her blood. He was really upset, at first I was confused and didn't really believe him. When I actually looked at him I saw how upset he was. He said we needed to get Kate to children right away. Her blood tests said her hemoglobin & platelate levels were dangerously low and they need to run tests and see whats going on. We headed right down to Childrens Hospital. The blood that the pediatriton took said her platelates were down to 15,000 (normal is around 140,000). If her platelates got down to 10,000 her body would just start bleeding on it's own, and not stop. At 15,000, if she were to fall & cut herself or hit her face or something she would start to bleed and not stop. Her blood wouldn't clot. Before the doc's ran any tests or took any blood they said that often times results like that could mean leukemia. The number one thing on their list was leukemia. This seemed unreal to us. There was nothing wrong with our healthy, perfect daughter. She's not sick, she's not hurt, there's nothing different about her, how could she have leukemia? They tried to put an IV in her and it took 3 tries, it was heartbreaking seeing my little girl suffer like that. She's yelling "please, please, please". I was pretty much sobbing behind her. Unfortunately when they finally got the IV in, they had to put it on her right hand & she sucks her right thumb to self soothe. That was only the beginning of the pokes. After they got the IV in they took blood & sent it to the lab, the results came back as 40,000 platelates & her hemoglobin levels were 7.9 (they usually transfuse in kids if it's under 8). That night they took her labs again & her platelate levels were back down to 16,000, and her hemoglobin was at 7.6. Overnight they gave her a platelate transfusion. She had a terrible time sleeping, no thumb to suck, it this strange place with people poking and touching her all the time. And, yes, that IV that took 3 tries fell out. They had to draw blood, which took two pokes, then two seperate nurses attempted to put an IV in again, this took another 3 pokes. She was miserable. So was I. They ended up putting the IV in her foot. Another unfortunate place as now she can't walk around. All day Thursday we had to carry her around and make sure she didn't accidentally pull out the IV. In fear of losing the IV the nurses decided to do two finger pokes to do labs that morning. Thursday we took her to the clinic where they put her to sleep and had to poke her twice to withdraw bone marrow, and again to do a spinal tap. These two tests were going to tell us whether she had leukemia or not. We had a good day after that, we played and went on walks & took a nap. She doesn't even seem to realize that something is wrong. Thursday afternoon they ordered a blood transfusion as her recent labs put her hemoglobin levels down to 7. The tube fell out of her IV and landed on the floor. We had to wait a couple hours and do it all over again. It's a 3 hour process. We did it Thursday night. Believe it or not, after the blood transfusion her IV came out again! They decided to leave it out and send her early in the morning to get a central line put in. Meanwhile they had to poke her again to draw blood for her labs. The Central Line was intense. They put her to sleep, put a breathing tube in, cut a small incision in her chest and run an IV like tube through her vein and let it rest just above her heart. It's really intense, and a pain, but it's much better than her being poked constantly. When she woke up she was incredibly dehydrated and hungry. We went to the room and she slept for a few hours. While she was sleeping her doctor came in with good news. The marrow & spinal test came back and were both negative for leukemia & aplastic anemia. Thank You Lord. We are so thankful that it is neither of those things. We woke her up to try and help the anestesia ware off, after about 45 minutes she was back to her old self. Walking around (with Todd or I tightly in tow with her IV cart), saying "hi" to all the nurses & blowing kisses. She started eating like the little champ she is, and drinking lots of fluids on her own. Friday afternoon they took her off the IV since she was eating and drinking so well. So, yesterday we played and walked and she was amazing. Last night they came and drew blood from her cathetor and it didn't even wake her up! It was amazing going from all the poeple and pokes and screaming and "please" 's, to them being able to take blood in her sleep. Thank you Lord. She did wake up though, we danced in the middle of the night and walked around the whole hospital a time or two. Today we we're stircrazy in the hospital, the playroom is closed on weekends, and I can only drag her around in a wagon for so long. She can't stand being in the room and demands a "walk!" at all times. We can walk for an hour and when I open the door to our room we throw quite the fit. She's eating well, drinking well, and in amazing spirits. We still don't know what is causing this. We do know that her white blood cells are perfect and in abundance. The doc's are now running tests to see if maybe her white blood cells are attacking her red blood cells and platelates. We won't know why even if that is the explanation. They still have a lot of tests to run, and until we know what is happening in her blood and have a treatment we will either be at the hospital or be treated as an outpatient. It all depends on whether her platelates & red blood cells continue to rapidly dissappear. Our goal is to find out what's happening to them, and why, then to treat it so her body will start producing them & letting them live & do their job. Until then we'll have to be careful and keep that Central Line in for transfusions, tests & treatments.
It's strange because I've never really worried about her getting hurt. Obviously I don't let her do dangerous things that could hurt her, but I never worried about her falling, or running into things or climbing off the couch. I always figured it would make her tough, and so far it has. Kate never cries, she falls, hits her head, and just eats it all the time... She gets up and goes back at it. Very rarely does she cry. Now I'm going to be that paranoid parent watching and hovering all the time in hopes to protect her from any type of fall or crash. Now it is important to make sure she doesn't bleed, because if she does, she could literally bleed out. Until we find out and fix whatever is wrong, I will be that paranoid Mom.
Thank everyone for their thoughs and prayers! We definitely feel them and I truly believe they are what's making my baby girl okay. Your prayers are the reason my Katelyn doesn't have leukemia. Thank You and please continue to pray for her.
We'll be in the hospital at least a few more days & I'll update as soon as I can.