Chemo Round 2

The day after Christmas we headed back down to the hospital. It was hard to see them hook Kelby back up to those tubes, but it didn't even faze her. She did really good this time. I think it was because she got to be out of the hospital for a while. The first round of chemo was right after one whole week of poking and prodding to figure out what was wrong. She played with her new toys…especially the doctor kit. We got to walk around the hospital. She cheers up all the other little kids there. She loves to ride in a little plastic car they have there. I drove her around and around the hospital. The time went by pretty fast. She quit eating though. Who really wants to eat hospital food anyway? She even slept well at the hospital this time…except when they wake her to take her temperature and blood pressure. The doctor said she was doing really amazingly in handling the chemo. She was smiling almost the whole time. She dances in the hallways and makes all the doctors and nurses fall in love with her. We give all the glory to God for her strength. We know that so many people are praying for her and that makes the difference! She is an amazing girl. Now we'll wait at home for the next few days and hope that she doesn't get a fever. Her counts will be going down so we'll be home bound for a while. I think that she already has a bit of a cold, so we will just have to see what happens.

Christmas Day

This Christmas was so wonderful. Kelby was in top health. It was perfect timing! She got a rocking chair and a doctor kit. She got all kinds of things and really had fun. Having kids of your own at Christmas really makes a difference. We opened all the presents at home, and then went to Gramma and Grampa Wright's for breakfast. Riley and Emma loved the strollers we got for them, so that really made our day. Of course, it didn't come without some baby squabbles, but everyone made it out okay. The girls all just played and played…and we just ate and ate! It was a great day. We are so thankful that Kelby was her old self for Christmas.

Christmas Carolers

This evening was so wonderful. We weren't expecting anything. Debbie and George came over and brought some dinner. Afterwards we were just hanging around when the doorbell rang and I saw a flash of red in the window. I opened the door and just couldn't believe what I saw. It brought tears to my eyes. Outside were so many of our friends singing Christmas carols. They even brought Father Christmas (with presents)! It was so wonderful. We were so deeply touched. We got Kelby to the door and she just didn't know what to think. She had never met a Santa close up before and was a little upset, but that didn't spoil the moment. We can't say thank you enough to all of you that did that for us. We felt so loved and it really made this Christmas special. We were trying to think of something that could make it wonderful and that did it! Kelby opened the presents afterwards and just had a really great time! I owe everyone thank-you's, but for now, know that we love you guys. You even sang great too!

Losing Her Hair

On Saturday at the hospital, her hair finally started to come out. And boy did it come out! There was hair everywhere. We hadn't known quite what to expect. It was very sad to watch it. When we were at the Group Health hospital the first time, we met a wonderful family that has a daughter with leukemia. That little girl has a beautiful spirit! She was stark bald and she didn't care! When she started losing her hair they made a party out of it. Dad shaved his head and she got hers done too. None of this waiting around as it slowly thins out to nothing! That is when we decided to do the same thing. I am so glad that we did. The hair was so messy - falling out on everything. We cut off a few locks to save, and then went ahead and shaved the rest off. She is the most beautiful baby I ever saw! She doesn't mind a bit either. I would have hated to see it happen slowly.

Back to the Hospital

We noticed that her temperature seemed a little high on Wednesday. The only thing we couldn't figure out was which thermometer we should go by. We were supposed to call if her temp hit 101 degrees. We took her temp with the new ear thermometer we got, but we couldn't quite get the same number twice. Under the arm her temperature was around 99.6, so we didn't know if we should worry. The next day she was very lethargic. She just sat there and didn't want to do anything. She still had that slight fever, so we called the doctor and they told us to come in right away. Apparently under the arm temperatures are always a little low, so she had a fever of 100.6 and that was enough to get us down to the hospital. They started her on antibiotics as soon as we got there. They do that just in case there is some kind of infection. Her counts were low, so they prefer to be safe. They tested her blood, but I don't think they found an infection. She probably got the virus I (Shawna) had. I will definitely be more careful with germs from now on! They make you stay in the hospital until her counts are above 200. We stayed until Sunday afternoon. She wasn't eating at all while we were there. It worried us, but the docs and nurses didn't seem surprised. She didn't get to walk around the hospital that time because others there might make her sick. This time Kelby would put out her arm when she saw the nurse come in to take her blood pressure. She also learned how to say "all done" when the nurse was all done messing with her. It come out more like "all dat", but we know what she is saying! It amazes me how much she is still changing and learning through all of this. It hasn't put a kink in her world it seems. She is so strong and amazing.

Enjoying the Christmas Decorations

Once we got home Kelby was so happy. We got out the Christmas decorations on Saturday. She watched carefully, but didn't really understand. She does like the choo-choo that Michael set up around the Christmas tree. She slept well the first few nights at home. Diane, Shawna's mom, stayed a few more days and made us wonderful dinners for us. We enjoyed it so much. Otherwise we would have been eating Top Ramen and macaroni and cheese. I (Shawna) really didn't feel like cooking then. I have gotten back into the groove of it now though.

Pictures will say more than words about how well Kelby was doing.

Transfer to Group Health and Chemotherapy Started

When we walked into our room at Group Health Eastside, we breathed a sigh of relief. We had a room all to ourselves. They said that we could all camp out there if we wanted. They even have fold out mats to sleep on. It is so nice because we won't have to stay in a hotel room or out in a trailer like we would have at Children's. More than one person can be in there with her too. The pediatric wing was small, but they had toys that Kelby likes. The fact that there weren't very many kids there meant that we got special attention. She walked around the pediatric wing a lot when we first got there.

Still, looking back, it is amazing what I can't remember any more. It seems like ages since this occurred. I do remember our straight-forward talk with the doctor. "This is going to be a long, hard road" was the gist of what he was saying. It is hard to hear the honest truth, but we prefer it. This doctor said that Kelby has about a 20-30% chance of making it through this. Our primary doctor was more optimistic with a 50% chance prognosis. The doctor also explained to us at that time about another condition that they were testing Kelby for. It is something called N-myc. If she is N-myc positive that means that her cancer has a gene that causes it to be amplified. This makes the cancer grow faster. If she has that, her cancer will be harder to beat. They did say that there are survivors that have that gene amplification. We wouldn't get the results on that until later. On the coming Friday we found out that Kelby is N-myc positive. This may be even harder than we thought, but God is watching out for us.

They started her chemotherapy at around 11:00 pm Tuesday night. Mike and I both stayed there with her. She did really well with it. I hope that all her rounds of chemo go as smoothly.

The next day, our moms came down to relieve us. They stayed together overnight Wednesday with Kelby. Mike and I got a chance to go home. We had gotten several chances through all this to be alone together. We sure appreciate being able to do that. All of Kelby's grandparents were more than wonderful to have stayed with her for us. They all also kept after us to take breaks and be sure we were eating well (Don't worry about me-Shawna, I gained 9 ½ pounds through all of this!).

Kelby stayed on her chemo for 48 hours. Then she got to rest. We were in a hurry to get home by that time. On Friday they gave her the first dose of her G-CSF, which is a white cell growth factor. This helps her white blood cells to grow back quick after they go down.

Kelby will be on a cycle every 21 days. First she gets her chemo. Then, we should be able to go home. Her white blood cell levels will start crashing down. About 5-8 days after chemo her counts will be near zero and that is when she is in danger if she should get any kind of infection. We will have to carefully guard her from anyone that may be sick. If she gets a fever at all when she has low counts, then we will have to rush down to the hospital. They give her tons of antibiotics just in case, and watch her until the fever goes down and her counts come back up. As her counts come back up, she awaits her next round of chemo. We have to continue to give her the G-CSF at home for about 10 days to keep those cells growing. We also had to learn how to take her blood at home, so it can be tested when the doctor needs to know her counts. Group Health arranged for a home nurse from Apria to come to our home and teach us. Apria also provides us with all the supplies.

So, on Friday, December 8, when everything was all set up, we got to go home! We were very excited to get Kelby home after 2 straight weeks of being at the hospital. She was all too happy to be home too!

Broviack Tube and Official Diagnoses

This catheter is a tube that they put in surgically. It will remain there until her treatment is done. It allows them to give her all her chemotherapy and fluids and take her blood without poking her every time. It is so much better then the IV she had to have when she first got there. She could have her hand back!

Dr. Louie gave us the official diagnoses on this day. D-Day. It was proven to be Neuroblastoma. They have a protocol for treatment that we will follow. This will include chemotherapy, radiation, surgery, and a stem cell transplant. I'll go into more detail on these later. Dr. Louie said we are probably looking at a 50% chance for Kelby to survive based on the improvements in treatment in the last few years. They say this cancer is "seductive". It tends to react quickly to the treatment and then change and quit reacting and can come back with a vengeance. Let's pray that we get it before it changes on us!

After her tube was placed, they let us go free for a bit from the IV and Kelby played in the great playroom at Childrens.

Bone Scan and Body CT

After a day of rest to recover from the biopsy, they needed to do more testing even before the total results were back from pathology. The bone scan shows where cancer is in the body by tracing a radioactive substance that goes to fast growing cells in the body. This was the day that they told us that there was an additional tumor on top of one of Kelby's kidneys in her adrenal gland. This made it so much worse. Now we are dealing with a cancer that has already spread. The bone scan also found a hot spot on the top of her right femur and in one of her hips. We have Group Health insurance, so at this point, they had their pediatric oncologist talk to us. We were going to have to change hospitals. This worried us at first because we truly loved the doctors and nurses at Childrens, but we were also tired of all the other people in our room. There were 4 beds in Kelby's room. Most of the time they were filled and sometimes with crying babies. Kelby didn't sleep to well there, not to mention the one person that got to stay with her. So, when they said we could have a private room at Group Health, we were ready. Dr. Louie is a very nice doctor. We like him a lot. He is gentle and doesn't talk above our heads. He might not be straight forward enough at times, but we just have to keep asking the tough questions. On that Friday they didn't have complete results, but he said that they thought it was probably a cancer called Neuroblastoma. They put Kelby at stage 4, which means she had the cancer and it had spread and there was some bone involvement. This is not a good diagnoses. They had us stay at Childrens over the weekend and planned to put in a IV catheter on Monday.

Biopsy

Wednesday, November 29, 2000 All that I remember about that day was sitting in a recovery room with Michael and Debbie. We were waiting for them to come back with Kelby after the anesthesia wore off a bit. Some doctors came back after awhile with some bad news. They told us in a round about way that Kelby's tumor was likely cancerous. That was so horrible to hear. The thoughts were in the back of our minds, but we hadn't allowed ourselves to go there. I don't remember much past the initial shock of that day. They had to wait for more information from the pathologist that was to take a few days. I think at that point we were in a daze, but we weren't too worried about it. The doctors there tried to make it easier on us. They tried not to make it out to be a big deal. ' When they brought her back to her room, she didn't look too good. The biopsy made her swell a lot more. Her cheek was three times as big as it was when we took her in. That was very difficult to see. They did the biopsy from inside her mouth, so there wasn't any wound on the outside. Looking back at those first few days, I don't know how I made it through. I cried sometimes, but sometimes I was okay. I knew from the very beginning that Kelby was in God's hands. That knowledge gave me the strength to withstand all that we were going through. I am so thankful that God is our support. I don't blame God. I just pray that He use this in many ways to touch many people. I already know that he has. Kelby has the spirit of a little angel. I was just amazed as I watched all the doctors and nurses at Children's fall in love with her. I think they were enchanted by her little "uh-oh". That is her favorite phrase and I guess it was very appropriate! So many people are praying for her. We were so touched through those days by everyone's kind gestures and emails. Wow, as I am writing this, it feels like this all happened a year ago, but it was only less than 3 weeks ago. It just goes to show that I was in a daze and carried through only by the grace of God.

Down at Seattle's Children's Hospital

I was anxious to get to our appointment because it was so hard to not know what was wrong with our baby. After looking at her, the doctor there thought she would need a CT scan, but it couldn't be done until later that week. She would have to be sedated to have the scan done because she has to lie very still for it. I brought up my worries about how fast it had been growing and whether waiting would cause any damage to her hearing or facial nerves. The doctor suggested that they admit her so they could do the CT first thing the next morning. I am so glad they did. The news from then on kept going down hill. After the CT the next morning they told me that the growth was in her jaw bone. It was growing inside the bone and thinning the edges. They wanted to do a biopsy the next day. Mike had been traveling for work, but they sent him home that night. Thank goodness he got to be there when the did the biopsy!

How It All Started

We were celebrating Melissa's birthday at our house on that Friday night. Zach and Debbie happened to notice the swelling in Kelby's jaw first. Michael and I hadn't noticed it at all. When I touched it, I was very concerned. It was a very hard lump. It wasn't that noticeable. I think that we didn't notice because we had seen her all the time as it was getting bigger. I took Kelby to her doctor the next day because I was worried. Of course, I didn't know how worried I should be. She was so happy and not bothered at all by it, so doctor wasn't too concerned at that time and neither was I. He thought that it could be a strange virus and that we should wait and see. He expected that if it were a virus it would be gone within 10 days. I got more and more concerned because it seemed to be growing. My thought was that if it were a virus, it would be slowly getting better. I kept checking in with the doctor. On the next Wednesday, Nov. 15, she had a slight fever and she didn't sleep that night. I took her into the Doctor on Thursday. He thought then that she might have a blocked parotid gland (saliva gland) and that an infection may be starting there. So, we started her on antibiotics. She also had a mouth sore that morning that was horrible. We still don't know if that is connected at all. The sore made her miserable and she couldn't eat or sleep the whole weekend. On Monday, Nov. 20, Kelby's doctor and I decided to have them take a look at her lump with an ultrasound because it was getting bigger. This is when I really started to get worried. The ultrasound technician said that it was a firm mass in there. He really didn't know what to make of it, but I could tell that it was something more serious than we had thought before. After this, Kelby's doctor arranged for us to see an Ear, Nose and Throat specialist at Children's Hospital in Seattle. We had to wait until after Thanksgiving for the appointment. Thanksgiving was really nice though. It took our minds off our worries.