Saturday, December 31, 2011

Meet Annabelle

Annabelle began 2011
as a very active, spunky and healthy 4 year old. 
She is ending it as
a 5 year old cancer fighting cutie.

In March 2011 Annabelle began complaining of shoulder pain. Of course, we initially brushed it off as growing pains or a minor injury. When it continued for a few weeks I called her pediatrician. Of course she was out of the office so we saw another Dr that day. I was concerned about JRA (juvenile rheumatoid arthritis) because my sister had it when she was young, but it would be really weird for it to be in the shoulder. That Dr ordered some blood work including an arthritis panel and when everything came back normal we figured she would get over the pain soon, but it only got worse. She was hardly using her left arm and it was becoming very weak. At that point she saw her regular pediatrician. She first ordered an x-ray, which looked fine, and then repeated the blood work. Nothing had really changed so we tried to make her tough it out again.

One day she had her arm resting on the table and when it got bumped from the other side she screamed out in pain. I knew something was wrong with my daughter; this was not like her at all! I was desperate to find out what was wrong when a friend called and told me about her sister who is a naturopathic doctor in Arizona. We were able to do a body scan test with a sensor at my friend’s house in Montana and interface with the doctor in Arizona and she was the first to tell us that Annabelle’s trauma was actually in her neck! It also indicated that Annabelle’s body was in an extreme amount of stress, which we later found out was very true! With that information I called the pediatrician back and she agreed that we should do an MRI looking at the neck and back. Because she would have to be sedated for the MRI it was scheduled for a couple weeks out. When the pain became unbearable the doctor agreed to admit her to the hospital because that was the only way to get it done sooner. She was admitted to Community Medical Center in Missoula, Montana on Friday, April 22nd and had the MRI on Saturday morning.  I sat alone (because I’m stubborn like that…I didn’t need anyone’s help for anything!) in the waiting room and cried because I knew something was wrong with my sweet girl and I was afraid to know what it was!

When she was in recovery, the anesthesiologist came to get me and said "I have some good news and some bad news. The good news is she handled the sedation well. The bad news is, there’s something in there!" Back in her room I was told that she had a schwannoma, a tumor on the end of a nerve, but that they would have another radiologist who does more neuro stuff look at it as well. We were sent home with instructions to call the neurosurgeon on Monday. I called Monday morning and he wanted to see us that afternoon! He very calmly looked Annabelle over, then showed us the MRI images and explained that he had never seen anything like it before. It was definitely not a simple schwannoma, as it included her C6 vertebrae. He said we needed to see a pediatric neurosurgeon and hoped that they would have at least seen something like this before. We opted for Dr Brockmeyer at PCMC because we have family in Utah. I was driving the hour back home from Missoula when they called and said Dr Brockmeyer would see Annabelle on Wednesday. I called my husband who was working out of town and he drove the 2 hours home that night. We packed our bags not knowing how long we would be gone and headed to my in-laws in Tremonton. Annabelle saw Dr Brockmeyer on Wednesday and again on Thursday with surgery scheduled for Friday. On Thursday, April 28th we first heard that it was cancer. Here is an excerpt from my blog on that day…

"The tumor is quite large and surrounds her vertebral artery and includes a vertebrae. It is growing too rapidly to try and shrink it before removing it so she will have her first surgery tomorrow. They will go at it from the back tomorrow and get all that they can from that angle. Then on Monday they'll attack it from the front. They will be removing part of the affected vertebral artery with it and the 1 vertebrae and possibly the nerve which controls her left arm strength. If he can get it off the nerve and leave it intact, he will. But if not, and possibly even if he can get it off, she will lose her muscle strength and control of her left arm permanently. With her vertebrae being removed they will either graft a bone from her hip or from a cadaver in its place. If required they will do a 3rd surgery from the back again fusing the spine for stability."

We went in Friday morning prepared for that and just before taking her back to the operating room they changed plans. After speaking with the pathologist and our oncologist (Dr Bruggers) they decided that it may be a tumor that they could shrink first, which would make the surgery a whole lot less risky, so they just took a large sample for testing and she was quickly out of surgery. We all breathed a big sigh of relief and waited for the results. It took an entire week, but on May 6th we got the official diagnosis…Ewing’s Sarcoma of the c-spine, a very rare location. She started chemo the next day and we have been at it ever since!

Annabelle first did 6 rounds of induction chemo and then had follow-up scans done. At that point her tumor was nearly gone so she didn’t even require surgery! She then did 28 radiation treatments as her "local control" while beginning her consolidation chemo treatment. Radiation and chemo at the same time was very hard on her and she spent several weeks not being able to swallow anything, not even her own saliva. She had a terrible burn on her neck from the radiation, so I can only imagine what it was like on the inside of her throat! We are SO glad that radiation is done!

We are currently in round 11 of 17 total cycles. They recently reduced her chemo dose by 25% and this last cycle is the first time that Annabelle has gone without a fever. We spend way more time inpatient for fevers than we do for chemo! Because of her chemo schedule and frequent fever admits, we have only been home to Montana once since we came down in April. When Annabelle is not inpatient we stay at my in-laws with our other daughter, Layla. My husband, Josh, is a contractor so he has to be back in Montana to work. He comes down to visit when he can but we have spent most of the last 8 months apart. He lives in the same small town as my parents, and I am living with his parents. Kind of weird! We don’t know how long it will take for these last 7 cycles of chemo, or what will happen after that. The hope is that the tumor will be completely gone, but she still may need surgery to stabilize her spine, as the tumor ate a good part of her C6 vertebrae. We still have a long road ahead of us, but Annabelle continues each day with her contagious smile and zest for life!

A special thanks to you Utah moms for making us feelwhile we are here! I am grateful that this journey has allowed me to meet and associate with such wonderful, strong women who inspire me.


  1. Oh my. I cried through your entire post. Her burns made me sick to my stomach. I hope things get better soon. Your sweet family will be in our prayers.

  2. She has such a beautiful smile! It's amazing how much these little ones go through.

  3. As a member of the extended family watching this drama as it unfolds, I can say I have never seen a child as optimistic and resilient as Annabelle, nor parents and grandparents who were more strong and supportive of each other. God is truly blessing them in their hour of need.

  4. Love this family and the love they have for each other. We pray that things get better fast and you can all be together again.

  5. Thank you so much for sharing your story here. It is so hard for me to keep everybody straight in the group, and after reading this I will never forget who you and Annabelle are! Those pictures of her burns breaks my heart. I hope to meet you someday soon, you seem like an amazing family and I can't imagine being separated for that long. You must have some kind of strength! Much love!