Our hearts still overflow with gratitude to God for bringing us through such difficult times. The pain and challenge of it all brings more glory to God because He brought us through. I share this, not to bring anyone down, but to impress you with what God has done. This way you'll see this new situation through the same lens we see it.
We were living in Washington in 2000 and as young marrieds, Mike and I were excited to move up in the world with our little 18 month old baby. Mike had just got a new job, bought a house in Sedro-Woolley, and decided to have another baby.
Just a couple months after we moved in to our new home, our family came over for a birthday party and they noticed that Kelby's jaw was swollen. I hadn't noticed because I was with her all the time. It was very slight at first.
We took her into the doctor and he thought it was a swollen salivary gland. Later, she spiked a fever and had a sore in her mouth, so we continued to be concerned and took her back into the doctor. We took pictures of Kelby and saw that her jaw continued to grow noticeably each day.
After only a couple weeks, our doctor sent us in to get an ultrasound of it and shortly after that we were set up with an appointment at Children's Hospital in Seattle in the Ear, Nose, and Throat Clinic.
The Monday after the Thanksgiving, I went down to Children's. Mike was out of town for work at the time because his new job took him traveling all over the United States. At the appointment they determined the mass was inside her bone and they wanted to get a CT scan. The next available wasn't until later that week or the next, but I made it clear that this couldn't wait. I showed them the pictures of how fast it has grown and they decided to admit her so she could get a CT the next morning!
After that scan it didn't take long for them to schedule a biopsy. Mike changed his plans and made it home before that surgery.
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| Before the Biopsy |
Because of the insurance we had at the time, we were not allowed to stay at Children's. They transferred us to Group Health Eastside. We thought that was a tragedy, but it turned out to be wonderful. We were give our own room and mats for us to sleep on and they allowed both of us to stay with her whenever she had treatments. Children's rules were much more ridged. Our Eastside doctors even allowed us to live at home in between treatments, even though we were about 20 minutes farther away than was acceptable.
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| After Biopsy at Group Health Eastside in Bellvue |
She got her first dose of chemotherapy right away and then we finally got to go home. Kelby was in amazing spirits. Throughout she had a smile on her face that always cheered us up.
After a bit, she started losing her hair, so we just went ahead and shaved it. She looked so cute!
There was two or three weeks in between her chemotherapy treatments, but she would always seem to get a fever in the middle and have to go back down to Children's right away. She often needed blood transfusions in the meantime too. But, we still had fun at the hospital. She liked the toys and stayed in pretty good spirits. She did really well with side effects and even through the worse of the cycle, she'd stay pretty positive.
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| Did I mention that I was pregnant at this time as well? |
I think that Kelby had five or six rounds of chemotherapy over the next few months to shrink both the tumor in her jaw and in her abdomen. Then they did surgery to remove the adrenal gland.
She bounced back from the surgery right away and was running around the next day!
The last part of this protocol was for Kelby to get a autologous stem cell transplant. That meant they would harvest her own stem cells and then give them back to her after a high-dose chemotherapy that would be enough to kill all the blood cells in her body. She went in at the beginning of May and I was due with the baby at nearly the same time!
Grampa Wright stayed with Kelby during the first part of that treatment so that Mike could come up while they induced me two weeks early. It didn't take much and Tegan Joy was born! I think I was out of the hospital and down at Children's by the next day.
The stem cell transplant was a long, hard process. She got six days of the high-dose chemotherapy and then she got her stem cells back on what they called "Day 0". We lived at Children's for the next 18 days as she very slowly got better. Mike was able to stay with her in the hospital room every night and I slept outside in an RV parked in the parking lot with Baby Tegan.
We were very fortunate because Mike was able to be with me for most of that treatment period. His new boss was amazing and let Mike stop traveling right away after Kelby was diagnosed. They tried to get a local business started during that time, but Mike was still paid and very flexible through it all. His insurance was also amazing at the time. God blessed us through that boss and we are still grateful for that!
On Day 18 we got to go home. Kelby was on IV nutrition for awhile and other medications, but she continued to get better. They also put her on a regime of Retin-A for about six months.
I struggled with a lot of fear during the next few months. I was constantly checking her over and worrying that the cancer was going to come back. September 11 happened in that time and with a new baby, I struggled with a bit of depression. Eventually I came around, but I stayed vigilant.
Mike made this video for us to share at our church.
First Relapse
Nine months after her stem cell transplant, in March of 2002, I found that her jaw was growing again. We took her down to Eastside and they confirmed it was a relapse. They had already told us that if she relapsed, she wouldn't make it. No one ultimately survives after that first round of hard-core treatment doesn't work.
After we returned we started radiation treatment at the University of Washington. We chose to do ony radiation because it had little short-term side effects as compared to chemotherapy and we wanted her to enjoy every last minute of the life she had. We did not seek to fight this cancer with every treatment available.
We drove to the University of Washington every week day for about four weeks. The drive was about 1 hour and 20 minutes each way and the treatment took about 15 minutes. Kelby had to be sedated each time so that she would hold still, but she didn't seem to mind the "dizzy medicine".
Second Relapse
The next two years were wonderful, but still we waited for the other foot to fall. Kelby continued to grow and be a happy little girl. In May of 2004 she fell while riding a bike and when we took her in an x-ray found that she had broken her arm because the bone was full of cancer. The amazing thing was that she wasn't in much pain from the break! At the time, Kelby was almost five, Tegan had just turned three, and Anika was about six months old.
This time we thought the cancer would come back and be impossible to fight because it had moved to a new spot in her body.
After some scans, we were set again to do only radiation treatment down at University of Washington for a few weeks.
After the treatment, we thoroughly enjoyed the rest of that summer and then Kelby started kindergarten like a normal kid in September.
Third Relapse
We had a great first year of school. I was busy volunteering at the school with Tegan and Anika in tow trying to raise money for new playground equipment. At the end of the school year Kelby got to be a survivor in the American Cancer Society's Relay for Life and had a regular check up scheduled for the next Monday.
On June 13, 2005 the doctor found a large lump under the arm that had cancer in it the year before. The doctor was pretty sure right away that it was another relapse.
They went in and removed the lump by surgery right away and sent us again to University of Washington for radiation therapy.
We were sure that the cancer would come back again soon because it has now spread to yet another system in her body.
But we waited, and waited, and waited....
Almost Nine Years Later
We continued to get regular check ups at Children's and at five years out from her last relapse we were put in the survivor program. Her doctor told us she saw Kelby as a miracle! We are so grateful that God gave us life with Kelby. These years have been filled with great fun for our family with fun road trip vacations, camping, Girl Scouts, and more.
This last year brought us to the point where we had to move to Montana. That has been a big change for us all, but everyone has adjusted well. However, it adds a new element to medical care as we head into this new part of Kelby's story.
Brain Cyst
We don't really know anything yet about what is going on with Kelby. What started with two seizure-type incidents led us to get her an MRI. They found a cyst in her pineal gland in her brain and the doctor here is sending us back to Children's once again.
We were already planning to go back to visit Washington for spring break and are hoping the timing will still work out for us to make some appointments. We won't need to rush as long as her symptoms don't change. Children's now has her images and will be able to look them over on Monday and get back to us then.
The radiologist here doesn't think it is likely that the cyst is related to neuroblastoma, so that is somewhat reassuring. It may be a completely new adventure and it may even be something we can ignore. Our doctor thinks they will want to biopsy it which would be a pretty big deal. Medical treatment at Children's in Seattle is just so much better than what they can piece together in Montana, so off we go.
Through the lens of what Kelby has already been through you can see that this new development can be trusted to God's plan. He has provided and comforted us at every turn and we expect he will continue to do the same. This time Kelby is old enough to understand on her own and yet she seems strong and recognizes God's plan is good.
So, as they say....that is the rest of the story. We'll see what happens and let you know.
