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.

Friday, December 23, 2011

Meet Clay

Clay was a 10 year old boy who was full of energy, spunk, attitude, and soccer balls.  The Friday before he was supposed to start his 5th and final year in elementary school Clay’s family doctor called his Mom and told her to get him to a hospital a.s.a.p.  As Clay, Mom and Dad heard the word, Leukemia, our lives changed forever.  

Clay was diagnosed Aug 28, 2010 with a very rare form of Childhood Leukemia.  It took sending his blood to Boston to determine he had CML, Chronic Myeloid leukemia.  It is not a typical form of childhood Leukemia; CML is an old man’s cancer.  Clay is actually the youngest CML patient on record in Las Vegas.  He was a perfect candidate for a Bone Marrow transplant because of his age and health.  He was however, only a candidate if he had a sibling match.  After both his brother and sister were tested we were blessed as a family with not one, but two sibling matches.  Cole, his big brother, was determined to be the better match and he gladly stepped up and helped his little bro out.  Cole will always be a hero to our family, he saved my sons life and he says he would do it again if needed.

I remember sitting in the ICU in Las Vegas and my phone did not stop ringing, everyone wanted to know more.  I was talking with my sister and I said “I can’t believe my son has cancer”.  Clays head popped up from the bed and said, “what are you talking about, do I have cancer?”  He had been there for about 3 days, we had talked to him about Leukemia and what it was but we had never used the term cancer with him.  

In March 2011 Clay and Cole were approved and ready for a move to Salt Lake for the BMT (bone marrow transplant).  Mom and Clay packed our stuff and headed to Primary Children's Medical Center.  Clay was admitted and started Chemotherapy.  Clays transplant day was March 17, 2011, St Patrick’s Day.  Our family was able to come and celebrate with us.  Clay was such a trooper, he felt crappy and miserable, but just kept fighting.  He loved all the TV time and video games.  The thing he remembers the most and had the most fun with in the hospital is the spit sucker.  He had more fun with that dang thing.  It had to be emptied a couple times a day because he would fill it up with water.  The techs and nurses had fun with Clay; he would draw on the windows with the dry eraser markers and make funny faces with the nurses.  

Clay and Mom went back to Las Vegas in July 2011 and he has been superb ever since.  Clay and either Mom or Dad travel to Utah once a month for clinic appointments.  They fly in, see the docs, and fly back out.  So far Clay has been given a clean bill of health with very little side effects.  He has recently gone back to school and has been cleared to play soccer again.  He loves the social part of school and loves running with his team.  We are so grateful for the friends we made in PCMC.  Clay became writing buddies with a boy who was in transplant too.  He will always be a dear friend whom we will never forget.   This experience has changed our family forever.  We have been humbled with service, love and support.  We have been challenged emotionally, financially and spiritually.  In the end, our family has grown to love those in need, honor those who we have lost, and cherish those who are still with us.

Read more about Clay

Thursday, December 8, 2011

Free For You, Worth Everything To Them

This CHRISTMAS, here are two relatively simple, FREE gifts you can give your fellow man:
1. Get registered in the bone marrow donor registry: Join NOW!  There are many people who need a life-saving bone marrow transplant, but who don't have a match. Last year I read about Shannon Tavarez, an 11 year old girl with AML, who passed away. She needed a bone marrow transplant and a perfect match couldn't be found. It is particularly difficult to find matches for people who are mixed race. YOU could be someones match. It takes about five minutes to get signed up. Get registered and give someone hope! Our friend Rachel was able to find a donor, can you imagine if she was saved because of YOUR marrow? What an amazing gift for everyone involved!
2. Donate blood at your local Red Cross you can also go HERE if you would like to donate solely to patients at Primary Children's. You can donate blood or platelets. A single platelet donation can provide enough platelets for a full therapeutic dose for a patient in need. In fact, some platelet donations yield enough platelets for two or three therapeutic doses. By contrast, it takes about five whole blood donations to produce a single therapeutic dose. Many patients who need platelets are undergoing chemotherapy or organ transplant and have weakened immune systems. A platelet dose from a single donor reduces the patient’s exposure to multiple donors and is therefore preferred by many physicians. During a platelet donation, a small portion of your blood (less than one pint at a time), is drawn from your arm and passed through a sophisticated cell-separating machine. The machine collects the platelets and safely returns the remaining blood components, along with some saline, back to you. After the donation you can resume your normal activities, avoiding heavy lifting or strenuous exercise that day.

According to the American Red Cross: every two seconds, someone in the US needs blood. Erin received 13 blood and platelet transfusions, Amelia, had 3 transfusions just in her 1st two days of treatment, Elena had multiple transfusions in just one week - and occasionally, her transfusion has been delayed because the blood bank didn't have the type of blood she needed, and  Skyler, had multiple platelet transfusions every day. There are millions of other cases where people need blood. It is life-saving.
Some Facts About Blood Supply Needs and Blood Donation -from the American Red Cross
•One donation can save the lives of up to three people.
•The demand for blood transfusions is growing faster than donations.
•Shortages of all blood types usually occur during the summer and winter holidays.
•Less than 38% of the US population is eligible to donate blood. (So if you can, you can see that you're sorely needed!)
•It is possible to donate specifically only platelets or plasma. This process is called apherisis.
•Donated platelets must be used within 5 days of collection - new donations are constantly needed.
•Healthy bone marrow makes a constant supply of red cells, plasma, and platelets. The body will replenish the elements given during a blood donation - some in a matter of hours, and others in a matter of weeks.
•The average adult has about 10 to 12 pints of blood in his body. Roughly 1 pint is given during a donation.
•The average red blood cell transfusion is approximately 3 pints.
•A healthy donor may donate red blood cells every 56 days.
•A healthy donor may donate platelets as few as 3 days apart, but a maximum of 24 times a year.

You must be at least 17 years old, weigh at least 110 pounds, and be in good general health to donate. (Eligibility requirements may vary in some states and donation centers.)

Please, if you possibly can, get out and donate this holiday season. It's one of the best gifts you can give.

This Christmas, GIVE LIFE!
Red Blood and Platelets
**feel free to copy and paste this post onto your blog (I did via- The Flamm Family) - spread the word!