Day Fourty-Nine

Kelby had her doctor appointment today. It went well. She is looking good and gaining weight on her very own now! We don't have to go back for 2 weeks now. They called me with her counts and the ANC is a little low. The ANC is under 500, so it is an urgent call to the doctor if she gets a fever or seems different or sick. All her other counts went up though. Maybe her body was busy making the other kind of blood cells instead of the polys. I'll see if I can have her counts checked again next week to see how things are going. We'll just be extra careful for awhile...by staying away from crowds, etc. I think that this is all pretty normal. I guess that is why they want us to be so careful.

Happy Day!

I think that Kelby had a really happy birthday. She liked all the VeggieTales and presents and ice cream. The other kids sure did tire her out, but she did really well. It was nice to have people over to our house. We haven't been able to do that in so long. I have always wanted to have people over ever since we bought this house...so it is nice to be normal enough to do it. I just wanted to let you all see some pictures from Kelby's birthday. She loves the talking Pooh Bear that Gramma DeeDee and Grampa sent. Her Daddy found her this cool Veggie Tale guy "Larry" that turns inside out and becomes "Larry-Boy"! She thinks that he is super neat too. We all had a good time. We are so thankful that we get to celebrate her two years! She is the best little trooper you ever met. Thank you Lord for keeping our little gal strong. Thank you for blessing us with these past two years of her life. We all just pray that she stick around for many more years to come. Please use this sweet girl of ours to touch the lives of others. Help them to know that You are in control, and there is so much peace in putting their burdens in Your hands! We have witnessed that blessing first hand. Thank you for that peace! Amen.

HAPPY BIRTHDAY KELBY!!!!!

Well, this is a very special day for us and Kelby!! We are so happy that we get to celebrate today. We are having a VegieTales/Happy Face birthday party for her. She is very excited to see all the Bob and Larrys' and happy faces around the house. It will be a fun day. Kelby is so happy these days. She just wants to play outside all the time. Sadly, it is raining today, so hopefully it will clear up later. We are all doing great. I'll get some pictures up soon. (Mike has the camera hid away somewhere right now.) PS. I did hear from Kelby's doctor on the scans. He said that things look okay. There isn't anything new to worry about. There is still some healing activity in the jaw and leg, but otherwise everything looks good. I'll have them show me the scans at our appointment on Friday. Sounds: Happy Birthday 2 Years Old

Empty House

Well, all our company has gone home now. Thanks so much for all the help you guys! We had fun with Gramma DeeDee and GiGi. Kelby REALLY enjoyed her Grammas! We have a few days off and then, it sounds like Gramma DeeDee and Grampa Greg and Aunty Andrea may get to come for a couple days for Kelby's second birthday on this Wednesday. It will sure make the day special if they get to come. (By the way, Andrea...Kelby sees your picture in the stairwell now and says "Bye, Bye Andrea" as we walk her down the stairs!) The girls are a little "spoiled" now though since there were extra hands around to take care of them both...now it is just me again...and whatever will I do? :) Kelby had her scans done yesterday, but we haven't heard yet what they think of them. We will probably hear next week. She is doing great. I asked the doctor about when we could take the IV catheter out and they said that they generally wait for 6 to 12 months before they take them out. That didn't sound too great to me. Right now she still needs it because they will take her blood each time we have a check up to test her blood counts. They also have to inject her when she gets scans (every three months). Other than that she doesn't need the catheter unless the cancer reappears. Once she doesn't have to get her blood drawn so often, I still think it would be better to have the thing out. It is a source of possible infection for one thing. Plus, Kelby just hates to have her dressing changed. I think that she would prefer to get the poke once every 3 months than to have to change the dressing every other day. We just want to do what is best for Kelby, so we'll see what happens when she doesn't have to have her blood drawn so often. We are just always on top of asking the doctors questions. I don't think that they get asked things like this very often because most parents just go with the flow...I guess we are difficult patients. I still think it is better to ask and get the whole truth before just doing it. If they can really tell us that it is better for Kelby, then by all means, let's leave it in! So, things are all really great right now. Kelby is acting just like a normal kid now. She has her second birthday on Wednesday and it is going to be a VERY special day for us! (We are having a VegieTales theme!) So, send up some prayers of thanks for us on her day! We are so thankful she has made it this far!

More Pictures

We all have been having nothing but fun these last few days. Here are some more pictures, including pictures of the wonderful company that we have had! Gramma DeeDee and GiGi have had a wonderful time with us. Kelby has REALLY enjoyed them both. All is well with all of us. I have enjoyed having extra hands around too. Gramma GiGi and I and the girls went to the beach in Anacortes today and had a really great time! Kelby didn't want to come home. (Don't worry, she was wearing sunscreen!) :) Kelby has a set of scans on Friday this week. We will get another chance to make sure that everything is gone. She will have scans now every three months for awhile. We will be asking the doctor what he thinks about when Kelby can get her IV catheter out. We are excited for the day that can come out! We'll let you know what they think. I imagine it will have to stay in for a while longer just for blood draws, but we'll see.

Pictures for Everyone!

Here are some more pictures for everybody. We have been doing so great. The weather warmed up the last few days, so we played outside more. Kelby is totally off the IV nutrition now! She is eating normally and doing great. She likes to sit on my lap when I am typing. She is taking her Accutane now. That was a struggle to get her to take, but I think we have it figured out now. My mom is heading home today and my gramma is coming in. These girls will be spoiled in no time! Kelby really enjoyed Gramma DeeDee while she was here.

Day Thirty-Three

All is well here! We just wanted to put up a couple pictures today. The weather is nice today, so we are going to go out and about. Kelby is feeling wonderful and eating a ton. It is nice to have my mom here too. Kelby really likes Gramma DeeDee I think! So, we are off to have some fun today. Love to you all!

Day Thirty

Hello Everyone! We are all doing so great. Kelby is so happy right now. She is running around She has really taken to Gramma DeeDee too. She has been in a really good mood lately...as long as she gets her naps! She has been down to 12 hours of IV nutrition for the last few days, so she has been free all day long! She is eating plenty, so I think I'll get them to take her off the IV nutrition all together. That will be nice. Overall we are so happy to be going on to a normal life now! I really think that Kelby is happy to be done too! Thanks for continuing to pray. Love to you all! Shawna My cutie was in a really good mood when I was trying to take these pictures. I couldn't get her to sit still. In this pic she has a grumpy expression, but I was trying to show you these cute pj's that GiGi Morrow got for Kelby. I just couldn't catch the smiles with the camera.

Day Twenty-Seven - Radiation Cancelled

Sorry there hasn't been an update in awhile. The last two days we have been down in Seattle at doctor appointments. On Wednesday we had the meeting with the Radiologist at the University of Washington. Throughout these last months we have been thoroughly dreading this part of Kelby's treatment because of the long term side effects she would likely suffer from it. We went into the meeting hoping that the doctors could talk us into doing it by showing us that the benefits outweighed the risk. They told us about the side effects to the radiation and they are very scary. They would irradiate the three places on Kelby where she first showed disease. These were the bed of the primary tumor of her adrenal gland, the top of her left femur, and her jaw. Side effects to the adrenal area would be risks to the kidneys and shortening of the spine. Radiation affects bone growth. They would have to irradiate both sides of her spine so that she wouldn't have a curvature in her spine and it would decrease her height by a centimeter or so. The radiation to her leg would also be growth inhibiting. Since it was only one side she would have a limp and it could affect her ability to play sports, etc. The radiation to her jaw was the most scary to us. They would have to irradiate a large portion of the left side of her face. According to what we have read, facial bones are especially affected by radiation. The distortion in her face as she grows would be significant because of her age. Her teeth and saliva glands would also be affected. All of these side effects are very likely, but the degree of severity is unknown. Also, she would have a 3-5% chance of getting a different kind of cancer in those spots 10 years down the road. There is all of this plus the short term side effects (similar to side effects of the chemotherapy) and 3 weeks of putting her under anesthesia every day. So knowing all of this, we really wanted to be sure that doing this to Kelby would be worth it. The radiologists that we talked to weren't able to tell us that this would give Kelby any significantly better chances. There haven't been studies as to the overall benefit of radiation in Kelby's situation. All the other treatment that Kelby has received has been shown to give her much better chances and that is why we did it despite the side effects. Currently the radiation is just a part of the protocol that Kelby is on. We even asked the radiologist to convince me to do this if it was the best thing for Kelby. He said that if he really thought that it would give substantial help to Kelby, he wouldn't give up in trying to convince us to do it, but he couldn't justify it. In this type of cancer the chances of relapse is quit high. From what the doctors have said and what we have read, the overwhelming problem is a systemic relapse. This means that the cancer comes back in places other than original sites anyways. So, still it was very hard to come to a decision. We have two branches to think of. One branch is radiation and one is no radiation. On either branch, there is both possiblities of life and of death. Also, on either branch there is a majority chance (statistically speaking) that she will relapse. They can't tell us that the radiation branch gives her any better chances of life, but it would for certain give her long term side effects and problems. On the other hand, if we take the no radiation branch, it is possible for Kelby to go on and live a basically normal life. So, we have decided not to go forward with the radiation part of this protocol. I can't go without saying that our faith plays a huge part in this decision. We know that Kelby is in God's hands. Whether she ultimately stays with us or goes with Him, we know that she will be well taken care of. Our biggest fear is not of her dying, but of her suffering. By doing the radiation we may, without any good reason, guarantee her a life of pain and reconstructive sugeries. Our decision gives her the chance to live as normal a life as possible, because there is a good chance that the chemo alone destroyed the cancer. We know some of you may disagree. We can respect that, as it was not an easy choice for us to arrive at either. We ask that you respect and support our decision as well, because I don't think anyone can truly evaluate these things unless it happens to their child. On that note I'd like to thank the staff at Group Health Eastside for not necessarily agreeing with our decision, but respecting us enough to agree to whole-heartedly support it. Throughout this we have been in 4 medical institutions, and as fancy as the others were, there is no place we trusted with our daughter's life more than you guys. We think you've done an excellent job at treating Kelby, not just the cancer, and always respecting us as her parents. Finally, this is obviously by no means over, so we would like all of you that have been praying to try to remember to continue doing so (By the way, for those of you who would have not made the same decision... there is more solid scientific evidence to support the use of prayer than there is to support the use of radiation on stage IV neuroblasoma). :) Kelby will start on Accutane (an oral medication), which has been proven to be a beneficial therapy. As soon as we can get a hold of it we'll give that to her at home daily along with the other drugs we're already giving her. Updates will keep coming, but probably not as frequently as in the past. Perhaps one or two times a week. Pictures and videos will keep coming as well for those who are interested. Hopefully before too long you'll get to see pictures of Kelby with hair! You all are the greatest and we don't think that Kelby would have done as well without your prayers. Thanks again for you continued prayer and support! Michael and Shawna

Day Twenty-Three

Kelby is just getting better and better every day! She ate almost a whole fried egg for breakfast! I think that we'll be able to take her off this IV nutrition soon. Maybe we can step down to just IV fluids for a while to make sure she is hydrated. But, at least that way she can start eating like normal. We have an appointment to meet with the radiologists on Wednesday, June 6. They will also set her up for the radiation at that point. I guess that they have to calculate everything perfectly so they can set up their machines just so to do the radiation. They will be marking her with ink that won't wash off, so that each time we go in for the treatments, they will be able to set it up perfectly. The actual radiation treatments will be starting on June 11. We will have a couple weeks of going down every week day for treatment. My mom and GiGi Morrow are going to take turns at visiting to help me out during those weeks. (Very many thanks to you!) Side Note: I just wanted to explain to everyone why we got to come home instead of having to live in Seattle for 2 months. By being home, we are doing what is best for Kelby. She isn't in danger because we are home. The Seattle Cancer Care Allience was the entity that was going to make us stay down there. They do different types of stem cell tranfers, but make the rules the same for everyone. If Kelby had gotten stem cells from someone else, she would have been at much higher risk still. It may have made more sense to stay in Seattle if that were the case, but it isn't. Also, the Seattle Cancer Care Allience is a bigger organization than the Hem/Onc Unit at Group Health. They can't make exceptions for people because they deal with so many and don't know us as individuals like Kelby's Group Health doctors. That is why we were so excited to get transferred back to Group Health right after Kelby was healthy enough after her transplant. We can do our own home health care and the doctors know we can handle it. So, don't worry that we are putting Kelby in any kind of danger by bringing her home already. She is doing SOOOO well and we know that being home is really good for her. June 2001 - Week 2 >>

Day Twenty-Two

This morning Kelby ate some bites! She asked for waffles and pickles for breakfast...ummm, yum! She takes bites and chews them up...some she swallows and some she spits out. Each day she gets better and swallows more. She is doing so well. Yesterday she wasn't cranky at all. She must have gotten quality sleep at night. Then, she took a three hour nap in the afternoon and that got her through the whole day. My sweet baby is coming back and I am sooo happy! Check out the movie today!

Day Twenty-One

Today is rainy, so we don't get to play outside today. Kelby woke up so happy. She is doing really well. She already had a fun bath this morning. Right now she is napping. We are all getting back into a normal schedule again. I don't really have any other news. We are all doing great. I just had a fun picture to put up today. Michael is working on a new video today. He said it should be up by tonight, so check back. Loves to all of you! Shawna