Movin' and Shakin'

As those of you outside of the area may have heard, we experienced a little earth shaking this morning. Preliminary reports peg the quake at around 6.5. This is contrary to the 7.0 that CNN and Fox News are reporting, but I trust the seismologists from the University of Washington more. The quake was centered down between Tacoma and Olympia, so we probably only felt about half to 3/4 that strenghth up here. We're glad Kelby wasn't at the hospital because there are buildings damaged down around Seattle so that would have been a little more scary and chaotic place to be. Shawna and Kelby were shopping at Costco when it happend, but luckily the got checked out before it hit because they kicked everybody out when it happened :) Kelby is now safe and sound in her bed taking a nap so if you were worried she, Shawna, and I are all just fine. Just a quick thrill and something to talk about for us :) Speaking of shaking things up...I'll probably move the website sometime late today or tonight. It will have a new look when it get's to it's new home at http://www.mikrowiz.com/kelby too. Be on the lookout. PS - I guess they just officially upgraded it to a 7.0 quake, but I'm sure you'll all see it in the news.

Tumor Board

Dr. Louie called us this afternoon to tell us the results of the tumor board. Sounds like we still have a ways to go. At the tumor board they got a chance to review all the scans from the beginning and this time. There were Pediatric Oncologists and Surgeons and Radiologists and Pathologists in on the meeting. They were even satellite connected to doctors in Spokane and Anchorage. The good news is that the primary tumor in Kelby's adrenal gland has shrunk way more than the our doctor had thought originally. The first CT scan at Children's hospital showed that the adrenal gland tumor was about 5 cm in diameter and now it is only 2 cm. This means that she is responding very well. The problem with proceeding to surgery or the stem cell transplant right now is that she isn't in "complete" remission yet. They are concerned about the cancer in her boney areas, especially her jaw. It sounds like the other doctors (especially the doctor in charge of the stem cell transplant) want Kelby to get a couple more rounds of chemotherapy before the surgery and transplant to see if they can get better remission. The bone scan that she had done this month still showed active spots on her femur, hip, and jaw. Since the bone scan shows actively growing spots in the bones, this activity could either be cancer or it could be healing. They will be doing another test soon on Kelby called an MIBG test. This test is like a bone scan except the radioactive substance they give her will go especially to Neuroblastoma in her body. This may help to determine if the activity in her jaw is still cancer or not. There is a balance that must be figured out here. This cancer tends to stop responding to treatment after a period of time. They must do all they can to get her into "complete" remission before the transplant. But, the danger lies in waiting too long. If she stops responding to treatment, continuing may be pointless. We must walk on this fine line. It seems like this is more of a worrisome issue with Kelby because she has the N-myc amplified gene that makes the cancer grow faster. So the only thing that we know now for sure is that we are in for another round (#5) of chemo later this week. She will also be having the MIBG test done soon. Hopefully that will show that the active spots are just healing, but if not, we'll be doing another round(#6) of chemo later. After that the doctor will have the the scans done again and decide if she is ready for the surgery and transplant. The additional chemotherapy rounds stress me out, but mostly because that pushes the transplant back closer to when the next baby is due. I know that everything will work out okay though. I just need to give it over to God and not let it worry me. Worrying won't change a thing! I know we have lots of people to support us when the times comes. I hope this all makes sense. If it doesn't, please feel free to write questions in the guestbook. I am sure that I have left something out. It is a lot to take in all at once.

Shameless Plug

Greetings. Due to some recent job-related developments I am reviving Mikrowiz. For those of you who don't already know, Mikrowiz is a side business that I have run for the past few years, doing custom computer sales, computer repair, and computer networking. Things have been a bit slow starting the company that I currently work for so in order to help subsidize my salary (which is all my own idea) while things are getting organized, I have decided to go back into business for myself. You can find the details of the services I'm offering and pricing at http://www.mikrowiz.com. Even if you don't need any services at this time, I'll be posting some Windows tips on at least a weekly basis, so you can check the Mikrowiz website to learn something new every once in a while. If you or anyone you know is banging their head against their keyboard because of computer problems, or are just ready for an upgrade or new computer, have them check out the website and e-mail me or give me a call. The busier I can stay now, the more I'll be able to help during Kelby's recovery from surgery and her stem cell transplant, not to mention Shawna's recovery from delivering a new baby in 3 months. For those of you who have wanted to help, keeping the above website in mind when somebody says, "I've got this problem with my computer that..." is one way you can help. Don't worry though, we are not in any kind of financial trouble. My current employer has been more than understanding and generous while we've been focused on Kelby. Things have just been a little slow so I want to help him out by letting him off the hook for the amount I can generate for myself so that I don't bleed him dry while he tries to get a new business running. And, although I have confidence that he'll succeed, it will cover my backside at the same time. Thanks for helping me spread the word around Northwestern Washington about Mikrowiz! Also, be looking for this website to move to http://www.mikrowiz.com/kelby in the coming days. The bandwidth there is a little better, and it has 5 times the storage space so for logistical reasons I'm going to relocate the Kelby Update site. I will put a link through to it from here, but once the move takes place you'll want to update your bookmarks. More on that later though. By the way, there isn't much to update on Kelby as she is doing great. She's happy as a clam eating, drinking, and playing at home. It has been nice not to hear anything from any doctors for a few days, and not have to draw her blood so we can pretend like we're a normal family for a weekend. Tomorrow is a tumor board where the oncologists and surgeons will review her progress to decide if she's ready for surgery now or if she'll need to go through another course of chemo first. We're hoping for the former as we just want that thing out of there, though it is important that it is small enough so that it's safe to perform the surgery. We'll keep you posted of course. Mike

Super Baby

Well, we thought we were in for a long process of shuttling Kelby's blood and/or Kelby to Seattle for a couple of weeks, but she just keeps amazing everyone. We were expecting to have Kelby at home for a couple of days after getting home from the hospital on Monday, but after her first blood draw on Tuesday she was ready to start testing for the stem cell harvesting. We were expecting that to be a week long process of Shawna staying in Edmonds (Thanks Kincaids!) and running Kelby's blood to downtown Seattle for a special test to see if it was time to harvest yet. Well, the very first sample she took down on Wednesday showed Kelby was ready. Then, we were expecting another week long process or so of Shawna staying in Edmonds (Thanks again Kincaids!) and taking Kelby herself to downtown Edmonds for a 4-6 hour process each day while the collected Kelby's stem cells until they had enough. Well, they were able to collect enough in one session! We definitely thank God for those small miracles that make this a more tolerable process. Kelby and Shawna are home now, and since this is the first time Kelby has been able to bounce back a little better, she's full of life. It's almost like we have our old smiley little girl back who has lots of energy and loves to play. The only difference is that she is a little bit weaker, a whole lot skinnier, and has a little less hair. I think all we do now is wait for the tumor board to meet to decide whether she's ready for surgery or not. They may do another course of chemo first, but we'll for now we'll enjoy Kelby's up time and wait to find out. I thought Shawna and Kelby weren't going to be home for my birthday on Saturday, but now they are. I couldn't think of a better present! Thanks for all your many prayers, because I don't know how else you could explain such an above average kid.

At the Hospital Again

When we got Kelby's counts back yesterday they almost made us come down to the hospital right then. They were going to get one of those special blood counts done right away and then have us stay the night so that Kelby could get a bone marrow aspirate done first thing this morning. Thank goodness they decided that the hospital was too full and they let us stay home and just bring her in today at 11:00 am. So yesterday we wandered around town and had a great day. It was so nice for Kelby to just get out and about. Right now she is hooked up to IV fluids to get her ready for the bone marrow aspirate at 2:00 pm. They will put her under anestesia for that. It will tell them if her bone marrow is free of cancer. I hope they don't make us stay here tonight. I don't know why we should have to unless they start Kelby on IV nutrition. She has been eating well. She just does so much better at home. Everyday now they have to take a special blood count to see if she is ready for them to harvest the stem cells. We could take the blood sample in ourselves if the doctor will let us. That way Kelby and I could stay at Mike's aunt and uncle's house in Edmonds instead of the hospital. That would be so much better for Kelby and me. That way we don't have nurses in all night checking on us and waking us up. Plus, Kelby could wander around and play and do her own thing. Here at the hospital there are so many other sicknesses going around these kids that they don't really want Kelby to be out of her room. So, unless they are doing something important medically for Kelby, we really want them to let us go. The house we can stay at in Edmonds is just a hop, skip, and a jump away from all these hospitals, so we could come in at a moments notice. Oh yeah, I am so excited. The doctor was just in and he really sounded like he would let us go tonight. I am so happy. Now, I need to go make calls and make sure that Aunty Pam won't mind us popping in for the night. Thank you Lord for all the little blessings!

She's Eating!!!

I was so surprised, but she did eat last night and this morning! Yesterday I put her down for a nap and when she woke up she said "eat"! I got her to eat 3 slices of cheese and drink some milk and she ate a popsicle too. Then, when she went to bed she slept 12 hours straight! She ate waffle and cheese this morning and drank more milk. I think that home is the best medicine! She played a lot this morning and was very happy. I was a little afraid bringing her home yesterday, but it was obviously the right thing to do. Besides, even I got to sleep straight through the night. I feel much better. The sun is shining in my dining room this morning and that does a ton to cheer me up! We'll get Kelby outside after her nap. It is beautiful outside.

Home for a Bit

Our doctor let us go home today. Kelby's ANC was 300 and she was looking and feeling better this morning. She ate two popsicles. I had noticed some white sores in her mouth yesterday, and today the doctor said he thinks that she has Thrush. Thrush is a fungal yeast infection in the mouth. So, we got some medicine for that and headed home. That stuff is probably the reason Kelby does't want to eat. So, we'll give her Tylenol and try and get her to eat. We have to take her blood counts everyday now. When her ANC is 1000 we'll likely be back at the hospital, so they can start taking those special blood counts before the stem cell harvesting unless we can convince the doctor otherwise. If Kelby needs to start the IV nutrition, then we will for sure go back to the hospital. At least we get a night at home in our own beds without interruption tonight!

Visitors

Grandma and Grampa Morrow stopped by today. They were on their way home from Hawaii and Horizon Air let them extend their layover. My Dad hadn't seen Kelby since she was first diagnosed, so it was great for him to see her. Of course, it would have been better if she had been feeling better. We are still at the hospital. I changed shifts with Michael, since I got a break for a couple nights. Her ANC counts are still low, so she has to stay tonight for sure. We'll see what her counts are tomorrow to see if they'll let her go. It also depends on how she is feeling otherwise. She hasn't been eating much except Oreo cookies and Pepsi. I am worried that she might have sores in her mouth which often happens on chemotherapy. They may decide to put her on IV nutrition if she doesn't start eating more soon. So, we may be here at the hospital indefinately until they get all the stem cells collected. As long as they are doing something good for Kelby, I think I can handle being here. Keep on praying. Thanks to everyone for all the nice messages in the guestbook!

Test Results

Here's the scoop on all the tests. The CT shows the inside tumors. The tumor in her adrenal gland has shrunk from 2.5 cm to 2 cm. The tumor in her jaw shrunk so that it is hardly noticeable from the outside, but there is still some cancer there. The bone scan was much the same as before showing cancer activity in her jaw and top of a femur. They said they don't expect the bone scan to change much from the chemotherapy. Her heart is still fine. They test that because one of the chemo drugs is bad on her heart. Another of the chemo drugs can affect her hearing, but her hearing is still normal as well So, the results from all these tests are good. It sounds like they won't be doing surgery on her jaw. Instead, after the stem cell transplant they will probably give her radiation treatments to the boney cancer spots. That will be a couple of weeks of getting radiation every day (except weekends). All their plans have yet to be finalized. If you can think of any questions, be sure to put them on the guestbook and we'll try to answer them...or ask the doctors.

A Mommy's Prayer

Being at home without Kelby and Michael makes me appreciate every moment I have with them. It is lonely here without them. I wrote this prayer down a few weeks ago, but I just thought I'd share it with everyone: Dear Lord, Thank you for every moment I have with Kelby. As I get to know her better I see how much harder it might be to lose her. I get to see these happy smiles and cheerful laughs. I get to be asked for hugs and given kisses. I get to have her sit on my tummy and kiss the baby inside. Thank you Lord for these moments. At times I am scared. The thought of losing her comes back. But then I remember that she is your child Lord, even before she was mine. All I can do is be thankful to you for letting me have her for whatever amount of time I get. I get to play outside with her. I get to dance with her. I get to have her hold my hand as we walk across the street. She has a beautiful spirit and she's not worried or scared or sad. She only apprediates every happy moment with us. I might think that it is just because she is too little to understand, but the truth is she knows more than us. If we could have the faith of little children, this might be easier to bear. She's not worried or sad or scared. Thank you Lord for that. You Lord have every second, minute and hour of our lives in your hands. Every second is a blessing that you deserve praise for. It is hard to face the fact that it is poossible that we may lose Kelby in the end. But to give worry, sadness and fear over to you everyday and face the possibility helps me to take each day and appreciate everything about it! That is what Kelby does. Thank you Lord. Amen.

Loungin'

Shawna is going to have a rough schedule coming up, so since it's the weekend I sent her home to sleep in her own bed while she can. We spoke with everyone today and it sounds like the process to collect Kelby's stem cells for the transplant will begin probably midweek this coming week. The logistics of it have yet to be figured out, but hopefully what will happen is Shawna will deliver Kelby's blood sample to a different hospital in Seattle, they'll determine if Kelby's cells are ready for harvest, and then let Shawna know. That will happen each morning until Kelby's counts are just right. Once they're at the proper levels then Shawna will take Kelby to that hospital for a 6-8 hour process each day where they'll harvest the stem cells via her cathetar until they've collected enough. That whole process will probably take around a couple weeks of visits and stays at the hospital every day. Shawna will be doing a lot of driving. Shortly following that process they'll perform surgery to remove the mass in Kelby's belly. The coming weeks are going to be even more stressful than the routine chemo has been, especially on Shawna who is dealing with all of this 6 months pregnant. Make sure you all say an extra little prayer for her. You're all so great though, that I know that I don't even need to tell you that :) For now Kelby and I are hanging out in the hospital. She's in pretty rough shape, and still fighting a fever that seems to come and go. Since she has basically no immune system she's probably going to have to wait for her white blood count to come up before she can kick this cold that is keeping her down. I'm just laying here watching TV in the pull out chair and she's laying next to me. She seems to be fine as long as she gets to lay next to me and I mess with her. Maybe she'll have to sleep next to me in the chair tonight. I just gave her some tylenol a few mintues ago so she seems to be perking up a little. She even just saw some dogs on a commercial and pointed them out as "puppy" who say "yeow" but then ammended that statement to be "vuff vuff" when I pointed out her error. I think she knows that puppies don't make kitty sounds, but she just does that to tease me. She got a trasfusion of packed red cells today, and a small transfusion of platelets so maybe after a night's sleep she'll feel a little better in the morning. We'll let you know of course ;) Mike

The Fever Came

Well, we had hoped we could avoid it, but we couldn't. Kelby had a fever of 102 today and her ANC is only 6, so they had us come down. I don't mind being here though because I was worried about her anyway since she wasn't really eating or drinking much. They will put her on IV fluids, so that should help. She has lost a lot of weight, but the pediatrition thinks that once she gets hydrated again, that should add back the most of the weight. They'll be watching her to see if she needs other IV nutrition. She feels better now because she got some tylenol. I hope I can get her to eat some dinner. I am feeling better this time because I think I am more rested than last time. Tomorrow we have a care conference. That means we'll get to talk to everyone that is working on Kelby's case. This will be our chance to ask questions and get them to give us more details about the scan results and upcoming schedule. I am excited to get some of all that figured out. At any rate, we are hanging in here. Hopefully I'll get some sleep in tonight so I can stay sane. Love to everyone, Shawna

Please No Fever

Kelby's counts are down now. So, I hope that she doesn't get a fever. She has a little bit of a cold. She is doing okay though. I feel like the last few messages haven't been very upbeat. I am sorry about that. My OB appointment went good. The baby is growing fine. I am gaining plenty of weight and I do mean PLENTY. The doctor seems to think that is a good thing though. He thinks I may be depressed...uh, duh...but I think that is normal...for what I am going through. I'll manage I'm sure. This picture is a great one though. This baby has been very sleepy these past few days. Not much else is going on...we are just praying for no fever. Thanks for all of your prayers too!

Happy Girl

I am sorry that I haven't updated in awhile. Everything is going so well right now, that I forget to write. We haven't heard yet about Kelby's scans from last week. Maybe we'll hear something today. Kelby is just a happy girl. She gets to play outside a lot since the weather has been so nice. Her Daddy built her a fence so she can play out in the backyard. She really loves watching "Rollie Pollie Olie" and "The Book of Pooh" on TV. Yesterday I had turned the TV to Rollie Pollie Olie and she came running from the other room and pointed at the TV and said "Olie!" It was so cute. Then she was sitting in Mike's lap and she said "book" out of the blue. Mike told her to go get a book to read and she got down and went and got one and brought it back to him. I guess that she is in the book stage now. I can't believe that she said it all by herself like that. She is just amazing me everday. When we were at the hospital she saw pizza on TV and now she runs around saying "pizza, pizza, pizza" in a funny voice. So, we got her some and now that is all that she'll eat right now. Her vocabulary keeps growing and growing everyday. I don't even have to try to get her to say new stuff. Anyways, I'll update again as soon as we find out anything about the scans and such. I sure love it when people leave messages in the guestbook, so please keep writing. Thanks for checking in on us!

Cry Baby

Well, it wasn't Kelby that was a cry baby today, it was me. Mike had offered to come down last night and take over for me, but I didn't let him. I wish I had. I am way over exhausted. This was a hard day on me and busy for Kelby. I just haven't caught up on my sleep for awhile. We woke up early this morning. I let her lay down with me between 5:30 and 7:00 am. Kelby watched TV, but I tried to cat nap. They had to give her some radioactive gunk at 8:00 that helps them to see the cancer spots on her bone scan. At 8:30 they put a tube in her nose that went down to her stomach. They had to do that to make her drink the "contrast" that they had to give her. That stuff was to help them see her insides better on the CT scan. Watching them put that in was very hard for me to see. Kelby did pretty good with it. She even took a little nap with it in. Around 10:30 they came and got us to take her down to get sedated for her scans. They put the sedetive in through the nose tube. I held her for a long time while she fell asleep. At that point I was so tired that I started crying (for no specific reason). When I finally got to put her down for the tests, I had to get away. Everyone was worried about me, but I am really okay. Mostly I was super tired...and sometimes it just feels good to cry. I got myself a decaf mocha and some cookies and I started feeling better. Michael came to rescue me. George brought him down so that he can take me home tonight. I don't think he really needed to do that, but I am thankful. It snowed here last night and the roads are if-y, so he was especially worried about me. We get to leave her tonight at about 6:00 pm...just after the traffic dies down. Mike is going to bring her back down tomorrow for a heart scan. They wanted us to stay overnight, but the scan isn't until 1:00 pm, so I didn't want to sleep at the hospital just for that. We would always rather sleep at home if we can. The drive isn't as bad as not sleeping in your own bed. I feel like I need to sleep for the entire weekend. Kelby is now feeling fine. She doesn't really have a problem with this type of chemo. We should find out more about the general plan after the doctors have a chance to review the scans that they did today. The best part about this trip to the hospital was a balloon that Kelby found. It was left behind by another little kid. She saw it and shouted "ba-loo, ba-loo, ba-loo". It is so cute. She carries it all around with her like it is a pet on a leash. It was the first thing that she asked for in the morning. It will last awhile because it is one of those mylar balloons. Pretty cheap entertainment I'd say! So, we are doing good. Don't worry too much about me. I'll feel better after I get some sleep. Kelby is doing great and that is what matters. I have another OB appointment on Monday, so I'll see how things are going with this pregnancy. I am sure I am fine. Just keep praying for us all. Thanks so much! God Bless, Shawna

Mess Up

So, we have good news for today. Kelby doesn't have to have a new catheter after all. It is a little silly though and we don't know quite who to blame. It ends up that the catheter she has right now is the right size for the stem cell harvesting. I don't know why they thought it wasn't. We had her all ready for the surgery. They had given her a little stuff that helps her to stay calm while they take her away from us. It made her a little sleepy. Then, just before they gave her the anestesia, the surgeon checked her current catheter and realized that it was good enough. The size is right on the catheter in plain view. We are glad that she didn't have to have the surgery. Mike came down just to be with her while she was going through the surgery when he didn't need to. We are still on for the scans tomorrow. I am anxious to hear what they think about it all. I suppose we won't hear for awhile. Kelby is feeling pretty good. She is cranky, but she just woke up from her nap on the wrong side of the crib. I think it is time for a walk around the hospital.

Busy Week!

Kelby and I got down to the hospital today at around noon. It sounds like this is going to be a busy week for Kelby. We'll probably be here through Friday. They started her chemo at 3:30 or so. Tomorrow she'll be getting her new catheter. It is the bigger one for her stem cell harvesting. They will have to put her under anestesia for that. She can't eat anything past 4:00 am tomorrow. Then, Thursday she'll be getting a CT scan and bone scan. She'll also have to have another hearing test I think. Then, on Friday she'll be getting a heart scan to make sure the chemo isn't harming her heart. I am anxious to see what they say about the bone and CT scans. This will determine their plan with the next few steps of her treatment. She'll have to be sedated for the tests because she has to keep perfectly still. This is a big week for us! Please keep praying. Love you all! Shawna

What's Going On?

Monday: Hello everyone, So sorry that I haven't updated in a while. Nothing much has happened. Kelby is looking much better with her new blood that she got on Friday. Today we should be getting the counts to see if she is ready to go in for her next chemo tomorrow. Her platelets need to be a bit higher. We don't know what to expect from here on out. They will probably be putting in a new catheter while we are down there this time. The one she has isn't big enough to do the stem cell harvesting. They plan to start harvesting her stem cells soon. I think that means that she won't be getting the chord blood for her transplant. Her transplant will likely be before the baby comes then. This time coming up will be a little more "play it by ear", I think. That makes it a little more stressful. God can get us through it though! Thanks for continuing to pray. Love you all, Shawna

Happy Groundhog's Day

Well, there is going to be six more weeks of winter it seems. For us, that can't be bad since our winter has been so easy. We are heading down to the hospital today. Kelby just has to get a unit of red blood. Her red blood counts didn't go up on their own. It will take quite a while to get it all done. We may have about 3 hours to go to the zoo though while we are waiting to get the blood after they "type and cross" it (whatever that means.) Other that low energy, Kelby is doing really good. Either she is a happy camper or she is taking a nap. I on the other hand am feeling a little weird. I feel short of breath and fatigued. The OB/GYN that I saw today thinks that it is an anxiety reaction to all this stuff. So hopefully it doesn't affect my pregnancy. I thought that I was doing pretty good with handling all this, so I don't know if I believe the doctor. Really I just need a good nap.