Day Twenty

We had a wonderful day at home yesterday. No time to write an update. I had to get things settled back in here. I felt like I was just moving in! Today is beautiful outside, so we'll take Kelby out. She likes it out there! Kelby is doing so great here at home. She is getting way more sleep and that seems to be very good for her. The home health people have been here the last 2 days teaching us how to hook Kelby up to the TPN at home. It is a tiny little pump that we can carry around really easily. We do have to follow Kelby around when she is hooked up, but she gets 6 hours unhooked each day so she can run around. Hopefully we can wean her off that soon. She is drinking a little and tasting a few things. She'll come around. Mike will be getting back to work next week, so I'll be on my own with the girls! I am a little nervous, but I know I can handle just about anything now. The only thing is that I am trapped at the house since Kelby can't really go out amongst people yet. I guess we'll just have to start going on stroller rides around the neighborhood for fun. It will take some adjusting to get back to normal life now. Oh no...I have to cook and clean for myself! What is a girl to do? :)

Day Eighteen

Kelby had a good night last night. Her nurse let her sleep more rather than disturbing her too much by checking things that we already know are in good shape. She slept a good solid night and woke up in the best mood we've seen her in in a while. Other than that there is not too much to report except that if you check her counts you'll see everything bounced quite well to give her the best numbers that she's had since before the trasplant. Oh yeah...we're also GOING HOME! Now we just have to keep her away from people for a while, but at least she'll get to be back in her own bed and hopefully take up some eating and drinking soon. For now we'll have a pump to give her TPN at home so she gets some nutrition. We'll also have to start looking ahead to getting the radiation therapy organized, followed by retinoic acid therapy. The radiation is fairly easy on her procedure wise, but the most concerning long-term wise because of it's damaging effects on bone growth. We will discuss all of that with a radiologist soon though. The life threatening parts of the treatment are pretty much out of the way (as long as we're careful for the next year or so), but Kelby is not out of the woods with this disease until a few years from now, so if and when you decide to quit following these updates (they WILL keep coming) please remember to keep her in your prayers. We hope you will continue to pray with us that Kelby ultimately defeats neuroblastoma, and that the harmful long term effects of the therapies she has gone through and will continue to go through are minimal. The statistics are on the disease's side, but God and you all are on her side so our team is stacked :) Whatever happens we know that Kelby is in good hands. Thank you all for your support over the last half a year to get us to this point. Hopefully we've peaked now, and can decend slowly back into a semi-normal lifestyle. BTW (by the way) - Don't go away because the updates will keep on coming! In the coming months you should be able to expect more pictures and video of the happier Kelby that we know since she'll be at home!

Day Seventeen

We are settled in here now. We didn't move the RV with us, so we all camped out in Kelby's room last night. There are two beds in her room, so she gets one and I get one. Mike sleeps on the blowup air mattress. He likes that better than a real bed anyways! It wasn't too bad, but hopefully we'll only have to be here a few nights. Tegan was on the nurse's schedule, so I just fed her each time the nurse came in and woke us up. It will be nice when Kelby can go home and get her full twelve hours of sleep at a time. Can you imagine how much better she'll feel? Kelby woke up asking for water last night. She drank quite a few sips of it! That is just one step closer to her eating on her own again. She coughs a little with each sip, so I think she has forgotten how to swallow. Yesterday she kept putting popcorn and grapes in her mouth, but she would spit them out instead of chewing and swallowing. Hopefully it won't take too long to get her eating again. Overall, Kelby is really ready to go home. We just have the details to get in order, then hopefully they'll kick us out of here.

Day Sixteen - Moving Day

We are all moved over to Group Health now. Kelby is doing good today. She has been sneezing, so we think she has a bit of a cold. They don't seem to be worried about that though. They just want to make sure that she doesn't get a fever and she still doesn't have one. Once we got over here we got to go for a walk around outside in the stroller. She didn't want to come in once she got a chance to go outside. She doesn't have to be hooked up to her IV until 5:00 because she is off all morphine and her IV nutrition is being cycled. She only gets the nutrition over 18 hours, so she gets to be off her IV pole for six hours a day. Soon we can go home. We have to get the IV nutrition (They call it TPN - Total Parenteral Nutrition) all figured out for home and get her to take some medications by mouth. She has to take one medicine for a year, one for six months, and one other for 30 days after the transplant. Yuck! Her white and red blood counts came down a little bit today. They say that is normal. They really expect it and say that it will come back up. Her platelets went up a little on their own though, so maybe she won't have to have any more transfusions. She is still a some what sleepy and cranky. She seems to be having temper tantrums now when she doesn't get her way. She is a little jealous of Tegan when I am holding her. I think she needs to get home where things can be more normal. She is used to having so much attention now. It has been a hard month. I hope things can get back to semi-normal soon. We are happy to be back with our familiar hospital and faces. We will miss Nurse Robin at Children's who was super and nice and understanding! Thanks for listening to us!

Day Fifteen

Today Kelby is up to 1127 ANC!!! That is really good. Her red blood seems to be coming up on it's own too. Her platelets are going down slowly, but they say that she may have to have platelet transfusions for a while after all this. She doesn't have to get any yet though. I just got a bunch of my questions answered by the doctor this morning. Kelby's immune system won't be normal for about 6 months. I was wondering how careful we need to be with her. We need to be especially careful for the next couple months. As long as she has her central line in, she has one extra site for infections, so we have to be very careful of that. She can't go swimming while that is still in. For awhile she can't play outside when there is construction or we've mowed the lawn to avoid any germs that could be kicked up. But in a month or so when her GI tract is all healed up, she should be able to be almost normal. She'll be able to go to the zoo or to places with some crowds. We just have to use common sense and wash her hands and not let her put her hands in her mouth and such. She shouldn't really pet animals and things like that or play in the dirt.

Day Fourteen

Well, Kelby has been in the hospital now for three weeks. She is doing so good today. She has been playing all morning and now she is laying down for her morning nap. She has her day and night mixed up a little. I guess she woke up at 4:00 am and was ready to play. Mike said she was saying things like: "Watch Tv's...Okay" and "Olie, Zowie...Okay". He's probably going to be pretty tired today. Kelby's ANC is 741 today. We haven't seen the doctors yet this morning, so we haven't been able to ask them about going outside and things yet. The nurse was worried about her going outside because they are doing a lot of constuction out there. That kicks up a lot of dust and ickies...so we'll have to see what the docs say. Her red blood count is going down a little, so we'll see if they give her some more red blood today. She looks great except she is still drooling quite a bit. Her face is a bit puffy too. Once those things go away she'll look like a normal girl! She has been putting a few things in her mouth, but not eating them. At least she is thinking about it. Things don't taste right to her yet. Hopefully her insides will heal fast...her taste buds must be really messed up. We are going over to Group Health for sure on Sunday. That will give us a chance to get things all figured out with them before we head home. We will have to figure out how to do the IV nutrition at home. They are able to give Kelby individual attention over there. Here at Children's she is seen as a "cancer patient", and not really as the amazing Kelby she is. I would really almost be comfortable taking her home from her because she is doing so good, but it will be nice to be over at Group Health before the transition home.

Day Thirteen

Sorry that we didn't get an update up earlier. Kelby kept everyone busy by being so happy and energetic today. She just keeps getting better. Her ANC is 495 today...that makes it close enough to be "500" for today. So, after tomorrow they should start taking her off all the antibiotics one by one. She is almost completely off the morphine. When I got here she was being really talkative and playful. She is such a great girl. My sweety's sweet personality is coming back! It sounds like we will be heading over to Group Health on Sunday. I think that Kelby will be happy to be back in the familiar surroundings... she'll be even happier to get home. I think that will happen soon enough. Anyways, Kelby is doing great. She is an amazing girl. We did have a nice night at home last night!

Day Twelve

Kelby is doing really great today. She has been very playful and was even walking around quite a bit this morning. She already got her bath in for the day and she really enjoyed that too. Her ANC is 398 today. That went up a lot yesterday. Those good white blood cells just seem to be doing their thing to fix up our sweety. She was holding Tegan with me this afternoon. She just loves that baby. She was even smiling! She is settling to take a nap right now. Mike and I are going home tonight again. I get to go to my last MOPS meeting of the year tomorrow. George will be here for the evening, then Michael will be back early tomorrow moring. Kelby is doing really well through all of this. The nurses think that she has done better than most of the other patients that they have seen. It wasn't easy, but we are sure thankful that it wasn't any worse than it was!

Day Eleven

Things are going pretty well today. Her counts are going up, but she's not above 500 yet. She seems to wake up a little cranky, but once she gets calmed down she is really playful. We rock-a-byed and played a lot this morning. She played with color crayons and an empty cup of coffee. Then, this afternoon she played in a bucket of water for bath time. She is much happier. We have been turning down her morphine drip each day...and that seems to help her attitude be better. Frustrated crankiness is a side effect of the morphine. Her mouth seems to be healing up now. She is still a little drooly, but nothing like it was before. It sounds like we may be able to transfer back to the Group Health hospital soon. That is very exciting for us. We'll just see how things go.

Day Ten

Kelby was so sleepy yesterday. I think her body is working hard to heal itself. Her ANC is 200 something now. Maybe tomorrow it will be above 500. Things are getting better. She is frustrated with us when she is awake though. She really thrashes around and hits sometimes. I think she is a little upset with us and the situation. Other times she plays a little and is generally happy. I am sure she'll calm down as she starts feeling better. We are just hanging out and trying now to be too bored...or eat too much! There isn't much else to tell right now. We love you all. Shawna

Day Nine - Bad News/Good News

Last night was pretty hard on Kelby. We gave her a washing and changed her dressing on her catheter like every day, but she was just so feisty. When we started the transplant, they made us change the type of dressing. It can't be taped to her skin during all of this, so it isn't very secure. Her skin is very sensitive and is peeling off a little. So, the exit site has been getting red and sore the last few days...probably because there is more movement of the tube. Last night when I changed her dressing the tube was loose and could have been pulled out, so they had to put a stitch in to hold the tube in place. This did not make her happy. They gave her lots of drugs to calm her through the stitching, but nothing would help. She has so much fight in her. Then they had to do an x-ray of her chest to make sure that the catheter was still in the right spot by her heart. Everything is okay there...I assume. She really had a hard time cooling down after all that. They gave her a new drug last night that is an anti-fungal. They gave it to her because she still had the fever. They don't know that she really needs it, but they do it anyways because they can't figure out what the fever is from. The drug has side effects though...it causes a fever, makes her have chills, and can hurt her kidneys. They are going to give her a different anti-fungal today that doesn't have as bad of side effects, so that will be better. Mike said that she did get a higher fever and bad chills last night. So here's the good news... Once she settled down last night she slept really good. Her ANC came back today at 138!!!! This is exciting. She should start feeling better soon. Once her ANC gets above 500 (hopefully by tomorrow) they will start taking her off the anti-biotics and etc. They take one off per day. We will still be in the hospital for a while longer, but we are getting closer. They will wait for her to be off all her medications and to start showing an interest in food before they will let us leave. After her counts are above 500 we can take her outside for a walk. That will make her so happy. She seems to have less goo in her throat also. She is still sleeping this morning, so I don't know how she is doing emotionally today yet, but hopefully she is feeling happier today. Yesterday afternoon Kelby was being much more vocal. She asked to be rock-a-byed. She wanted to hold Tegan too. When I asked Mike to take Tegan from us, Kelby got really upset...she wanted her baby! She was really interested in Tegan's pacifier too. I gave her one to play with and she kept sticking it in my mouth. She even walked a few steps yesterday! Shawna

Day Eight

For the record, Shawna's updates are accurate, I just tend to include every little detail because when I do them I'm bored. She hasn't been leaving anything out, it's just that I picked a day to do the update yesterday when a lot of things happened all at once. Kelby had a kinda rough day yesterday to follow her night, but we had her morphine turned up a little bit more and that seemed to help. She's started to enjoy being rocked and even asks for it sometimes by saying "rock-a-bye?". She was also really low on plateletts yesterday which explains why there was so much more blood in her drool. The plateletts are responsible for clotting and stopping bleeding, so if she's low then every little sore will bleed and bleed with nothing to stop it. She got a transfusion of plateletts yesterday afternoon, and may get more today, so now there is little or no blood in the goo she drools out. The fever is hanging on so that adds to her irritability I suppose, but she is pretty calm most of the time unless someone messes with her. She had a pretty restful night last night, only stirring when she needed her diaper changed for vital signs taken. She's funny because she is such a good girl for the nurses. Usually when she hears the velcroe on the blood pressure cuff she doesn't even turn over to see what's going on she just sticks her arm up for them. Same thing when they ask to get her temperature. She used to hate the little oxygen sensor they tape on a finger or toe to get a reading, but she even will stick her foot or hand out for that on her own now. If she has socks on she has to have it done on her finger though, because she absolutely hates to have her socks taken off of her feet. Anyway, we're on day 8 so hopefully only a couple more days of this and she'll turn back upward before she gets too much more uncomfortable. Most doctors and nurses are pretty impressed with how she's doing compared to how she could be doing though. By the way, we've told the docs, but if you Group Health Eastside nurses are reading this it applies to you too...we really miss you. Not that they're not very good here, but we get a new nurse every 8 hours and have rarely had the same one twice. We're looking forward to the time when Kelby can be back in the care of the Eastside hospital because she knows you so much better and you know us so much better which just makes everything better :)

Day Seven

It's 5:27 in the AM and I think I'm too awake to go back to sleep, so I thought I would stick an update in for you early risers. Last night was probably the worst one so far. Kelby's mouth seems to keep getting a little worse each day, but last night it seems like it got worse for her all of a sudden. She's having the same trouble, with having to cough up the same amount of gunk, but there seems to be more blood in it now. It's dark, so I don't know if it's coming from sores that have developed inside her mouth, or if is just her throat getting worse. Anyway, she doesn't really like to be helped, and fights it every step of the way even though she needs it. It's difficult to have my little girl push me away and hit me and pinch me while I try to get her to somehow understand that I'm only trying to help her so she'll feel better. She's just too little to get it though. I hope that she forgets all of this fast. I'm pretty sure she doesn't really hate me as much as she acts like it because sometimes, when she's on the edge of sleep and the morphine has just been pushed, I can ask her for a kiss and she'll raise her little head and plant on on my cheek then flop back down. Last night she was so frantic that between coughs and hitting me while I tried to get some of the goo from her mouth, she was also yanking at the dressing that holds her central line in. Since this new type of dressing change was invented by some rocket scientist who probably never spent the night with a two year old, it's not really secured very well so she could pull it out quite easily if she got a good hold of it. It made her even more mad when I kept pulling her hands away from it. She was very upset and did that once around 2:00 this morning and then finally calmed down, and then frantically did it again just a little bit ago. At that point it was quite obvious that her mouth or throat was hurting much more, so I went ahead and had them push a little extra morphine, and then increase her hourly morphine drip that streams to her constantly. That seemed to do the trick because I rocked her and she fell sound asleep and then I laid her back in bed and she went right down to the pillow. Hopefully that keeps her more comfortable now. The nurse also added some blow-by damp oxygen (you called that one huh Dave?) which is supposed to help loosen the phlem a little bit. Take the phlem from the worst head cold you've ever had and multiply it by 5 and that is the junk Kelby is trying to clear from her throat. If she's lucky/blessed she'll only have to deal with this another day or two before it turns around, but it could also go another week. Anyway, it's a bit depressing but it's what is happening. She's a tough little cookie though so when she finally does hit the bottom and bounce, hopefully she'll bounce fast and high. On a lighter note, while Shawna, Tegan, and I were at home, I was nice enough :) to rip a little video of when Kelby and Tegan met here in the hospital last week. As an added bonus I also made one of Tegan's first bath, which was also here at the hospital, that will be available at http://www.mikrowiz.com/tegan perhaps later today. Look for the one of Kelby & Tegan available now in the multimedia section.

Day Six

We are back here at the hospital now. We had a nice night at home. It went by really fast. Tegan's appointment went well. She is happy and healthy. She gained 13 ounces in 7 days! She is a piggy. Kelby seems to be doing pretty well today. She is about the same today as yesterday except she lets the goo run out on its own now instead of fighting it so much. That is much easier on her. Hopefully she starts getting better and better...but at least she doesn't seem to be getting worse. We got to go walk around the unit a little bit tonight. There is a really cool mural down the hall and Kelby enjoyed looking at it. Then she had a bath. She is back in bed relaxing now. We think that she is doing really well. Our nurse thinks so too!

Day Five

Kelby seems to be holding her ground now. The nurse thinks that she is doing really good. She says she has seen much worse at this stage. Kelby's worst part now is still that goo in her mouth. She is usually comfortably sleeping except when she gets too much of that gunk in the back of her throat...then we have to try and suck it out. She still doesn't have any other complications. Also, her temperature came down a little today. We always have so much to be thankful for! Our Kelby is so strong. She is still pretty stubborn and willful...which is a really good thing...at least she isn't giving in! Mike and I are heading home later this evening for a bit of a break. It will be really nice to sleep at home. Thanks again for your prayers. I really believe that it is helping Kelby to stay so strong...and helping us to handle all of this!

Day Four

Kelby is still hanging in there. Mike isn't getting too much sleep though. Kelby tosses and turns at night. She gets upset because her saliva is so thick and she can't swallow it. We have a neighbor in the next room who's son is on day 14 of his transplant. He is only 18 months old. He is getting the same treatment as Kelby for the same type of cancer. His blood counts started turning around on Day 8 and his mucusitis already cleared up a few days ago. He has other complications, but otherwise he would already be able to leave the hospital because his counts are so high now. So that gives us hope. Kelby hasn't had any other complications yet and the doctors seem to think she is holding up great. Tegan is a happy girl, so I am doing just great. We almost have a schedule going already! She likes the pacifier too, so that is always there if she gets upset. Today Mike is going to do a little work around Seattle, so I'll be here with both girls. It won't be a problem though. They also have voluteers here that stop by every couple hours to see if we want to get out for a minute. We are doing pretty good though. We will be getting a night off tomorrow. Tegan has a doctor's appointment on Thursday morning, so we are hopefully going to go home Wednesday night. Thanks again to everyone for continuing to pray! It makes a big difference. Love to you all.

Day Three

We did have a good Mother's Day. Mike and I got to get out for a couple hours for lunch because Grampa George came down to spell us. Kelby is not much visibly worse from the outside. The morphine keeps her pain under control. She does have a fever, but they are giving her all the antibiotics she should get. I think that it is normal for the transplant patients to get fevers, but they don't know what causes it. So far they haven't found any infections or anything. The doctors seem to think that she is doing pretty well. Hopefully it will all start to get better soon. The days actually seem to be going by fast. Kelby is sleeping most of the time, so she is peaceful. The worst part is the gooey saliva in her mouth. We have to swab out her mouth from time to time and she hates that. She is really hanging in there though. She is an amazingly tough girl. She gave Mike a kiss last night, so that helps to keep our spirits up.

Day One

This is Day One. The first day after the actual "transplant". It wasn't too different from yesterday. Most of the time Kelby is sleeping. Sometimes she is awake, but just laying there. We have to swab her mouth out every once in awhile and she gets pretty mad when we do that. She is pretty medicated, so at least she isn't in too much pain. She was holding Tegan today and that made her smile. It made me so proud as a mommy to see my two girls together. Being a mommy is so rewarding. These girls are both so beautiful! Tegan's middle name "Joy" really means a lot to me right now. She does bring such a sweet, innocent joy in the midst of all this. So tomorrow will be a bitter-sweet Mother's Day. I am glad that Tegan was born already...so she can be here on Mother's Day. We are just hanging around. It is nice that we are all together. We are both a little tired for not sleeping through the night...Mike with Kelby...and me nursing Tegan. But since we aren't doing much else during the day, I guess we don't need that much energy anyways.

Day Zero - Stem Cell Day

I (Shawna) slept in the RV last night with Tegan. It was so comfortable. This is going to be so nice. I am glad that I don't have to keep driving up to Sedro-Woolley so much. We have everything we need down here. Kelby is still not feeling too good. She is on a morphine drip now just to control the pain a bit. Her saliva is getting think. She isn't terribly miserable since she is getting the pain medicine. She even sits up and asks for "baby" sometimes. She likes for Tegan and I to sit next to her. I left for a moment this morning to get some things at the store. While I was gone they brought in the stem cells and gave them to Kelby. Mike says it was good that I missed it. Kelby got really sick as she was getting the cells. This is probably from the stuff they were preserved in. The smell of that stuff is really strong in the air. She was miserable during the 15 minutes it took to give her the cells back and then she fell fast asleep. Hopefully she will start recovering her counts quickly. They won't bottom out for another few days.

Good Afternoon

We made it back down to the hospital this afternoon. Kelby isn't doing as good as she was the last time I saw her. She is getting some pain medicine though, and that seems to be keeping her calm. They have started the IV nutrition (TPN) now. We think that her throat or something seems to be bothering her. She doesn't want to eat now. She still has a bit of an elevated temperature, but they aren't sure why. She likes to lay in bed and watch her videos. This is her last day of chemotherapy. Mike is going to stay down here with her tonight. We brought Tegan down to see Kelby. She was about as impressed with Tegan as she was with her new Elmo number book! She did like her, but only for awhile. We had her hold Tegan for a bit. I'll put up the pictures. Tegan is doing good...she just eats and sleeps and poops. This we can handle!

Good Morning

Hello everyone, this is Mommy Shawna again. I don't know how Kelby is doing this morning, but I wanted you all to know that I am doing great! You'll probably trust that more coming from me...than Michael. The labor for Tegan was so nice (looking back). It just went so fast. I am so thankful that I was induced. It takes a huge load off our mind. Now I won't be wondering all the time. I must have been ready to have that baby at any time since it was so easy for them to get me into labor. I had contractions from 8:00 pm to about 1:00 am before I started panicking about the pain. Then I asked for a little pain medicine to take the edge off, but it did't work. I had planned to go natural, but at the point I was asking for the epidural. Then, they checked me and I was 5 cm dialated and they broke my water...(hope that nobody minds the details)...and Tegan was out within 10 minutes!! They didn't have time to give me the epidural...so I get to say that I went natural with Tegan too. Tegan is really easy so far. She just sleeps and eats. We are taking her down to see Kelby this morning. I'll let you all know how she is doing after I see her later. I miss her so much because I haven't seen her since Sunday. Now when I am up and running at 100%, I'll probably stay down there all the time. About Kelby, I do know that the fever she had yesterday morning broke and she was feeling much happier by the evening. They did all kinds of tests on her to make sure she doesn't have an infection. We'll let you know more as soon as we know it. God Bless! Tegan is such a bright spot in this difficult time. I am sure you all want more pictures, so I'll get them up soon. The camera computer cable is down at the hospital, so we aren't able to upload the pictures yet.

Kelby Is A Big Sister

I came home from the hospital last night because Shawna was going to be admitted to be induced at 7:00 last night. They only got in 1 out of 4 rounds of medication for Shawna and that was enough to get her into labor. It went quickly and smoothly for her, which is good because there is enough going on right now. Kelby had a sister by 2:14, and her little sister caused her mommy quite a bit less suffering than she did :) Now we only hope that we can get little Tegan down to Children's to meet Kelby before she gets too run down. My dad is down with Kelby by himself right now so that I could be back in Mt. Vernon when Shawna was admitted. I'll probably head back down tomorrow to be with Kelby, and Shawna is feeling pretty good right now so she might even ride shotgun. We're excited to have Tegan with us now, but we miss Kelby. It sounds like Kelby started running a low-grade fever this morning, and she has kinda tapered off on her eating so she'll probably go onto the TPN for nutrition soon. Her energy is beginning to dwindle, but she got her 3rd new chemical yesterday and still hasn't really gotten sick at all yet. There will be one new chemical to be introduced (I think today), and then she should finish up with her chemo tomorrow. Her ANC was still pretty high as of yesterday, but that should start falling rapidly fairly soon here, and the next couple of weeks will likely be pretty hard on her. She's a trooper though, and seems to handle everything in stride so we're very proud of her, and sorry we can always be there to support her because we're getting yanked in so many different directions. I don't know what God had in mind for us with all this craziness, but I hope we're meeting His expectations because it sure does give me a headache to think about more than one day at a time :)

So Far So Good

Kelby is handling everything pretty good so far. The chemo hasn't really got to her yet, but there is still 3 1/2 more days to go. She's still running around the room and the halls playing. The worst part for her is getting her temperature taken because they take it under her arm which is more accurate but takes much longer than doing it in her ear. They were able to give her a real bed instead of a crib here which makes it easier to get her in and out of bed, and also makes it easier for the nurses to do some of the things they need to do in the middle of the night without waking her up. Her counts are still pretty high (we'll try to get those daily and put them up now) so that is probably why she still has so much energy. Her condition usually follows her blood counts. One nice thing about being at this hospital is that they have cable so she can watch Rolie Polie Olie on the Disney channel. There's also still a VCR in the room so she can watch her Veggies. So far things have been pretty non-eventful for her though, which is good. There may be some other new things to report as far as our family goes a little later in the week though, so we'll keep you posted.

It All Starts Today

We came down to Children's Hospital this morning. We are now all settled in. Kelby got her first dose of chemo at 1:00 this afternoon. She has been running around here like crazy. She doesn't seem to mind it here much yet...as long as we can play her Olie and VegieTales movies, she's good. She isn't getting sick from this chemo either...yet...we hope that it stays that way. She only got one kind today. Tomorrow she gets two different kinds. She still has more energy than me anyways! I just can't keep up with her. It is hard to get used to all the new doctors and nurses. There are so many, I just can't keep them straight. We miss our friendly faces at Group Health. Everybody here does seem nice though. Our room is nice and big. We are going to go find a twin air mattress for the room for whoever will sleep here at night. There is a fold down chair, but it isn't the best for sleeping on. We have pretty much moved in. I brought down a ton of Kelby's books and toys. Michael is in a wedding this weekend, so he can't be here. Grampa George is here with me just in case I go into labor or just get too tired. Only one adult can be in the room with Kelby at night, so I'll stay with her tonight. It is probably the last night that I'll be able to do that. We have an RV all set up that is going to be the "hotel room" for anyone that is down here, but can't stay in the room. It is actually a super nice set-up! That is where I will be at night once the new baby comes. Then, someone else will stay inside overnight with Kelby. I'll be able to handle the day time mostly...with some help. There are always volunteers here that will help us if we need it. Mike is going to start working by the hour for this month, which makes him more flexible. He'll be sent out to do some work around Seattle once in awhile while we are down here. Since he won't be salary for that time, he'll feel more comfortable staying with Kelby when there isn't work to be done. Gramma Debbie and Grampa George are taking breaks from work for awhile to help us out. Hopefully nobody will get too tired out. They also are concerned for Heather (Mike's sister) because she is pregnant, but not due for 8 weeks and she is contracting and dialating already too. She is on partial bed rest now, so she needs some help as well (They have a two-year-old). Please pray for George and Debbie's sanity through all of this! We also pray that Heather's baby stays in there much longer to mature properly. All this sounds so much worse when I actually write it down. I think we are all handling it pretty well. We just trust that everyday is in God's hands and He'll get us through it. I haven't had the second baby yet. Everyone seems to think that I will pop at any moment, but my heart is set on keeping the baby in until Monday at least. Otherwise, we have it pretty much figured out so someone will be able to get me to a hospital. They aren't leaving me by myself at all. I keep having contractions, but nothing too unbearable yet...and they aren't very regular. Once is does happen, it will probably go fast. I have another appointment on Monday, so we'll see than what is going on. We'd like to have them induce me on Monday night so we know when and where it will happen. My doctor said that wouldn't be a problem, so we'll see what happens. I feel better having Kelby settled in here now. Please keep up the praying. We are needing a TON of it! We love you all.

Happy May!!

Well, I think we have it all figured out now. We are scheduled to start the transplant process for reals this Friday. We have a break tomorrow, then there is no turning back. On Friday we'll head down to Children's in the morning to be there 9:00 am. They'll probably get us settled in, and then Kelby starts her first day of chemotherapy. She gets three new kinds of drugs through this process. They'll be hooked up to her for a few hours each day for the next six days. She is also going to have to take other medicines to protect her from infections. Next Thursday she won't be getting anything. On Friday she'll get her stem cells back. They tell us that the substance the stem cells are preserved in will really stink...like old garlic...and Kelby will smell like that for a little while after she gets them. Oh well...those cells will be saving her life, so we'll deal. They gave us all their expectations on what this will be like. I guess that if I tell you how hard this is going to be...you all will be able to rejoice with us when it goes better than they expect for Kelby. We think that Kelby is a super girl, so we hope it isn't as bad as they think it will be. First of all, Kelby will stop wanting to eat again. As soon as she loses her appetite, they will start her on the IV nutrition. They think that she won't want to eat for maybe months after the transplant, so we'll have to give her IV nutrition at home for a long time. She will probably get bad mucusitis in her mouth, throat, and stomach which will also affect her eating. This is painful sores and thick mucus in her mouth. We will have to swab her mouth with a saline solution to help her feel better and she may get pain medication for that if she is miserable. This can get so bad it could block her airway and put her in the ICU. She may feel nauseous and throw up while she is getting the chemo and maybe for some time after. Her blood counts will all go down. She'll probably need many red blood and platelet transfusions. Her white blood cell counts will go down to zero for longer this time. She may get a high fever during this time for which they will give her all kinds of antibiotics. She could get infections from bacteria, viruses, fungus, or yeast. They also worry about pnemonia. They say that even once her white blood cell counts come up, she'll still have an immature immune system for quite a while, so we'll have to be careful with her for a long while. We will wait for her counts to start going up on there own before she'll be released from the hospital. Her ANC will have to be above 500. They think that will happen about a one month from this Friday. We hope to be transferred back to the Group Health system at that point. After a couple weeks of rest, we will have to start her radiation therapy. That will be every weekday for a couple weeks. They will have to give her anestesia everyday for that to keep her perfectly still. We will probably be getting that done at the University of Washington Hospital (UW). That will knock her system down again. Radiaton doesn't have as many acute side effects as the rest of her treatment has, but will have long-term effects on her, especially with bone growth. Once the radiation treatment is done, we will probably be able to go live at home again (I hope). We will have to be careful with germ exposure for some time, but at least we'll be in our home! So, this is going to be a very difficult and trying time. We hope and pray that Kelby does better than they expect. I think that so far she has really shown them. She is 100% right now, so that is a great place to start from. She will have her own room, so that will be nice. She won't be allowed to have fresh flowers or latex balloons in her room. The flowers can have germs and bacteria I guess...and latex balloons are a chocking hazard...but Mylar balloons are welcome. She loves them! We can take down some of her toys and some decorations for her room to make it homey. I am still hanging on to this baby. At my last appointment, I was dilated to 1.5-2 cm. So, who knows what is going to happen. Baby could come at any time now. Hopefully later than sooner. Keep up the praying everyone. Thanks so much.