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!

Saturday, October 29, 2011

Chili's Helps HopeKids on Nov. 7th

Let your family, friends, and neighbors know how they can help.
Feel free to share this on your blog, email, facebook, etc.
 
**Attention**
Logan
West Valley
Sandy
American Fork
Layton

Chili's is willing to donate 15% of sales to HopeKids!

Monday, November 7th
3:00pm - 10:00pm
 
**For HopeKids to get 15% you MUST print this flyer and give it to your server** 

HopeKids offers continuous hope and support 
to families with a child with cancer 
or other life threatening illness.
A big thanks to Chili's!
 
 

Wednesday, October 26, 2011

Matthew's story

In July of 2007, the week after Matthew's 9th birthday he was diagnosed with a brain tumor.

That week was so surreal.  Matt was perfectly fine on Monday.  He went to football practice that evening.  On Tuesday he was also great.  We took a big group of kids to the movies and did fun things all day long.  On Tuesday evening, as he was getting ready for football practice he began to vomit.  I geared up for a bout with the stomach flu, but right from the beginning, this 'stomach flu' just didn't feel right.  He didn't develop a fever, the vomiting seemed different somehow....  there was too much (I know that sounds weird!), he kept complaining about a headache, and most significantly he was very confused.  He kept waking up at different times of day thinking that he was going to church, or starting to get ready for school at 2 am, or turning on the radio and starting to clean his room at 4 am.  I took him to the pediatrician on Wednesday and while Matt was clearly sick, he didn't display any of the confusion that I had seen the night before.  The doctor sent us home with instructions to continue treating the flu.  That day just got worse and worse with the confusion.  We had some wildfires right behind our house and firemen were walking through our yard with hoses strewn on our driveway.  Every single time Matt would wake up, he would see them outside the window and ask me what was going on.  Every.  Single.  Time.  Over and over again I was explaining the situation.  That evening we had to drive from our home in Logan to Salt Lake to pick up my husband from the airport.  All the way home Matt was chatting with his dad.  My husband was also concerned because the questions seemed 'funny'.  Matt really seemed 'off'.  When we arrived home I sent the children to bed while my husband and I stayed downstairs.  About 20 minutes after Matt went to bed, he came bounding down the stairs, "DAD!!!  I'm so glad you are home!  It's so great to see you!  When did you get here?"  At that point my husband really got to see what had been going on that day.  Matt had no recollection of riding in the car for the prior 2 hours with his dad.

On Thursday morning, I called the pediatrician again and told them I was worried because Matt still seemed sick, but mostly because he seemed confused.  I will forever be indebted to this doctor (not my regular pediatrician, his partner, since my pedi was out of the office) who believed me and sent Matt directly to an MRI.

Of course, at that MRI they found the brain tumor.  The tech was very professional and didn't tell me anything or let slip that anything was wrong.  What he did do was make sure I had a copy of the MRI disk and told me to expect a call from my pediatrician.  At that point I knew that something was really wrong.  I couldn't bring myself to say or think the words 'brain tumor', but I think I knew in my heart that that's what it was.

We didn't even arrive home before the pediatricians office called and asked us to come into the office.  He told us there was a large mass, a tumor, that was causing Matt's symptoms.  He told us to go home and get our things and head directly to Primary Children's Hospital, to the Neurosurgery department and that he had already called and that they were expecting us.

I called my father and choked out the words 'Dad, it's a brain tumor'.

At home I was in a fog.  I had no idea what to pack.  How long would we be there?  What would I do with my other children?  I remember making Matt get in the shower because he had been 'sick' and hadn't bathed for a day or two.  I called my visiting teacher and dropped my kids off with her and my husband and I and Matt made that first drive to PCMC.  While on the way, we called our good friend from Boston who was a very well-respected Neurosurgeon.  He told us what questions to ask the doctors and he also assured us that PCMC's Neurosurgery team was very very good - one of the best, he said.  He gave us a lot of comfort with his knowledge and matter of fact responses.

After his examination, Matt was quickly admitted to ICU.  Because of his tumors location, his endocrine function was being affected.  His sodium was a staggering 172 (normal is 135-145).  Also, his neurosurgeon, Dr.Walker suspected that Matt's tumor had bled, which is what caused the sudden onset of symptoms.

Our life was normal on Monday.  Our life was our worst fear coming true by Thursday.

Matt spent almost a month in the hospital that first time.  He had his first craniotomy (brain surgery) about a week after being admitted.



In the first 18 months after being diagnosed, Matt had 18 months of various chemotherapies and 3 brain surgeries.  His tumor cannot be completely resected.  He will always have a brain tumor.  It is difficult to know that the beast in there can have spurts of growth at any time.  



While we had a roller coaster period of up and down, growth and stability those first 18 months, after his 3rd brain surgery, in December 2008, we had almost two years of peace and of CALM.  Matt's tumor was stable.  He was able to go without treatment during that time.  He has a lot of other serious health issues, mainly stemming from the tumors location which caused Panhypopituitarism.  Matt doesn't make any hormones, so we have to re-create them artificially for him.  This is a very precise balancing act that takes a lot of involvement on our part.  




Last year, in August of 2010, we learned the tumor had started growing again.  Matt underwent six weeks of daily IMRT radiation at the Huntsman Cancer Institute.  At his six week follow up scan, we learned that the tumor had continued to grow.  In fact, the twelve weeks between starting radiation and our six week follow up scan, showed the largest amount of growth we had ever had.  At that point, our oncologist was leaving PCMC, and we weren't being given a lot of hope there.  No one knew what to try next.  We decided to seek treatment somewhere more specialized in Neuro-oncology and our Neurosurgeon steered us toward St.Jude.  He helped get Matt in to St.Jude and we started going there in November of 2010.  Matt is participating in a clinical trial and so far it has been keeping his tumor stable.  In two weeks we go for his final appointment in this 12 month trial.  




I honestly don't know what we'll do next.  I'm terrified of going off treatment.  I hate feeling like we are out of options.

But, in the meantime, Matt continues to LIVE.  I am so grateful for how well he does.  A new doctor, upon meeting Matt, looked him over and said, "Matt is a perfect example of why you treat the child instead of treating the scan.  I would have NEVER put this child with his scans."  He looks and does so much better than he 'should'.  It's a tremendous blessing.

One of my favorite quotes that I have to repeat to myself over and over and over as Matt wants to do 'normal' 13 year old boy stuff and wants to be independent is, "Why do you spend so much time trying to save a child's life if you won't allow them to LIVE it".  It's a hard balance, but one all of you moms understand.  





written by Mathews mom, Allison.  


To read more about Matthew and his amazing fight you can visit their blog at www.lifewithlittleboys.blogspot.com

Friday, October 21, 2011

Kace's Story

I remember watching "My Sisters Keeper" on the airplane... sobbing out loud. I remember saying to myself, "I could never go through that as a mother, I just couldn't do it." I've now learned never to say never, and to cherish every waking moment you have with the ones you love because never know what path lies ahead for you. 
Kace was diagnosed with Acute Lymphoblastic Leukemia on November 30th, 2010. No mother should expect to know the signs of Cancer. It's something adults get, not kids.  When I look back at photos around October of 2010, I sometimes think, how did I not know? He was pale, had dark sunken eyes, he was tired, whiney, needy, sensitive... totally out of character for Kace. He started bruising and swelling with small injuries that he couldn't explain. How did I not know?  I had x-rays done on what I thought might be a broken clavicle, the next week a broken elbow, the next week a broken arm.  I even asked him if someone was hurting him. My "mother instincts" were going haywire, something wasn't sitting right and no one could give me any answers. 
We ended up putting a cast on him, even thought the X-rays said "possible fracture". In children it's difficult to see if there's a fracture at the bend of the elbow, or if it's their bone plate. But because there was so much swelling they assumed he had broken it. They didn't know it was the Leukemia blasts in his bone marrow pushing on the inside of his bone. 
On the morning of November 30th I woke up next to an exhausted Kace, barely able to move. He had yet another sleepless night with complaints of neck and shoulder pain. I thought that it may be muscle strain from the weight of his cast. Two days prior his pediatrician prescribed him liquid pain medication to subside the pain from his "broken arm"... It wasn't working, something was wrong.  I decided to go  see the doctor who had put the cast on him,  I was running out of options.  Kace was in so much pain he couldn't even lift his little arms. I could visibly see that his lymph nodes were inflamed, his skin around his collar bone was hot, swollen and red in color... something was definitely wrong.  I zipped on a sweatshirt since he couldn't lift his arms above his waist, and we headed up to Primary Children's.  
I'll never forget the look on Dr. Klat's face as I unzipped Kace's jacket, it was terrifying to me. He looked at me and said, "This is not a fracture, I think you need to take him to the ER." My heart sank... what was it then? 3 years prior Kace had spent two weeks in the Neuro-Trauma unit due to a rare auto-immune disease called Guillian Barre Syndrome... was it back? I didn't have time to think. I gently zipped Kace's jacket back up and we headed to ER. I can't imagine what Kace was thinking or feeling at this point; I tried to stay calm and collective and assure him it was all going to be ok and that his neck would start feeling better soon. 12 hours in the Emergency Room~ they sent us home and told us they'd call when they received his test results. Most likely it was Rheumatoid Arthritis and that we'd need to get an appointment with a Rheumatologist the following day. They also mentioned there was a chance that it could be Leukemia, but due to his high blood counts, they were favoring the arthritis. I thought to myself,  how can they say all of this so casually? This is my baby and they just used the work CANCER! The ride home was all a blur... I just remember thinking, it can't be cancer... it won't be cancer. 
The phone call from Dr. Lemmons came too soon. The blood tests were inconclusive, Kace had Childhood Leukemia. I can't really remember what the doctor told me past that point, all I heard was Cancer and come up to the hospital tonight. I literally had to be picked up off the ground because I had fallen down into the fetal position. I couldn't believe this was actually happening....CANCER! I tried to pull it together quick, I had to stay strong for Kace, I had to make him feel safe. I walked into the family room, and with my Mom, Dad, brother, and husband we told Kace that he was sick. We explained that his body was hurting because of a bug called Cancer. We told him he was going to be okay, and that his body wasn't going to hurt anymore because we were going to go up to the hospital to fix it.  His Grandpa and Uncle gave him the most heartfelt blessing, and we headed back up to the hospital. Kace was so brave... I know his angels were surrounding him at that moment.
Kace flew through induction and has been in maintenance since May. He’s adjusting to this new phase of chemotherapy with strength, courage and a dying desire to be 'normal' again. There still are daily occurrences of nausea, stomach pain, exhaustion, headaches... but you'd never know unless you asked him... he doesn't want to be treated any different than the other kids. He goes to school, plays on the playground, does Tae Kwon Do, Breakdancing... all of that with taking daily, weekly, monthly and quarterly dosages of chemo. He's an amazing little man who has taught me about courage and how to look at the glass half full. I can count on one hand the amount of complaining Kace has done through this all. He's never been a victim, only a fighter!  
It's taken me about this long to get my feet under me. I went into a funk when Kace entered Maintenance; all sorts of strange emotions started surfacing.  I think because I finally had time to breathe reflect on all that had happened. It was a crazy 6 months full of ups and downs and we all had been running purely in survival mode. I can now say that I am truly thankful for my trials... and I mean it. Had this not have happened to us,  I may not have learned that life is too short to sweat the small stuff. All we have is today, and what we do today is all we can control. 



To read more about Kace and his battle with ALL you can visit his blog theincrediblekace.wordpress.com

Written by Kace's mom, Erin Smith.

Monday, October 17, 2011

Petunia and Alex

I have always liked Petunia Pickle Bottom bags, but now I LOVE them! Why you ask...

I opened my emails today and saw this ad.


I was so excited to see that they donate to Alex's Lemonade Stand! Now I have an even better reason to pick up one of these beauties.

Saturday, October 15, 2011

Cancer is so limited

Cancer is so limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot depress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit

Thursday, October 13, 2011

Farewell to MARTI SKOLD at GOOD THINGS UTAH

MARTI SKOLD has been an incredible supporter of HopeKids since they got here in 2008. She has received an awesome job offer in North Carolina and she has accepted. This will enable her to be closer to both her and her husband's family. Friday, October 14th (tomorrow) will be her last day on Good Things Utah and she wants to highlight HopeKids as part of the show.

Therefore she has invited HopeKids to be the studio audience at GTU that day!



Tune in to channel 4 at 10:00am to see HopeKids and Some Cancer Fighting Cuties.

Wednesday, October 12, 2011

Brinley's Story


Our daughter, Brinley, had just turned two years old in August of 2008.  She was a spunky, fun-loving toddler with a smile that brought sunshine into the room.  


We had noticed in the weeks before her birthday that she was limping and had seen the doctor for it.  They x-rayed and found out that she had fractured her leg a few weeks prior during a trip to Las Vegas, but it had healed on it’s own.  One week after her birthday, she tripped on our living room floor and was crying hysterically.  We couldn’t imagine what had caused her so much pain because it was not a hard fall. We looked all over for a needle or tack she may have landed on, but could find no reason for her to be in such pain.  She was up all night in pain and we finally took her to the emergency room.  Her femur had been fractured, and they immediately began looking for a reason that she would be fracturing bones.  Nothing could have prepared us for the news that cancer, Acute Lymphoblastic Leukemia, had invaded her tiny body and threatened to take her from us.  




Brinley went right into surgery and had a line placed in her chest that gave them constant access to her veins.  The very day after her diagnosis, our hearts ached while they quietly administered her first dose of chemotherapy as she slept peacefully in the hospital bed.  That was the beginning of a treatment that would last over two years.  In that first month, everything we loved about her personality was gone.  Her smile was gone.  Her laughter was gone.  Her playful demeanor was gone.  She was up all night, every night.  It was heart wrenching to see this change in her, and I could never describe how difficult those first months were.  As time went on, Brinley learned how to endure, how to fight back, and how to smile again, even though her challenges were great.  She had many bumps in the road, and so many days of enduring things no child should ever have to endure.  After one of her treatment days that had been particularly difficult, we went on a walk when we got home from the hospital. It had been such an exhausting and discouraging day.  As I was reflecting on the day, she looked up at me from her stroller and said “this is the best day ever”.  Surprised she would say that, I asked her “why?”  She answered “because I love walks.”  She taught us how to find the beauty when life gets hard, because there is always beauty to be found.  




Brinley has been off treatment and in remission for 10 months now.  She is regaining her strength and continues to enjoy life and we are so grateful for the lessons she taught us.  Because of her we all know how to make lemonade out of life’s lemons, and it is a lesson we will have with us forever.  She is truly a hero.  

To read more about Brinley you can visit their blog at www.sweetbrinley.com
As written by Brinley's mom: Kristin.

Tuesday, October 11, 2011

Gold: The New Pink Awareness Products

Spread awareness!

Every dollar earned goes directly to CureSearch!

so......

to get t-shirts, hoodies, magnets, bumper stickers, key chains, mugs, aprons, buttons, post cards, mouse pads, and the NEW iPhone 3 & 4, iPhone touch, Samsung Galaxy, & Blackberry Curve & Bold covers!

 Get the NEW phone cases for 25% off until Oct. 16th
use this code: CASEMATESALE at check-out

Gold: the new pink?
 
Pink. It's everywhere you turn. From women's hair removal gadgets, to football team uniforms. The pink ribbon, symbolizing breast cancer awareness has become a marketing phenomenon like no other when it comes to raising awareness for a social issue. Our desire is to raise awareness for an equally important issue; childhood cancer. As a society, we like to say that “children are our future.” If we truly believe children are our future; why do we sit idly by while more than 12,000 children in the United States are ravaged by this disease each year, and approximately 3,000 die from it each year? Worldwide, 80,000 to 100,000 children die from a form of childhood cancer every year. EVERY YEAR! If we truly believed that children were our future, and our future was being threatened by this evil, would we not do something? We commit billions of dollars each year to protecting our country, and yet do so little to protect the generation to come from a disease that comes silently and kills so many.



Gold: The New Pink exists, not to take away from the efforts that have been made to advance the cause of breast cancer awareness or to suggest that breast cancer awareness is not as important, but rather to elevate the cause of childhood cancer to equal stature. So much more funding is given to adult cancers than for childhood cancer. The parents of children stricken by cancer want to level the playing field.


Saturday, October 8, 2011

The Creating Hope Act

Recently many of us received an e-mail from CureSearch that talked about contacting your local representatives and encouraging them to vote for the Creating Hope Act.  
I wish they had put these words in their email.....

The Creating Hope Act is...
"...legislation that would incentivize pharmaceutical companies to develop new drugs for rare pediatric diseases, such as childhood cancers, that have not been developed in decades because they are not profitable ... the Creating Hope Act of 2011 ... would expand the cost-neutral Food and Drug Administration priority review voucher (PRV) program, allowing pharmaceutical companies to expedite FDA review of more profitable drugs in return for developing treatments for rare pediatric diseases.  Since 1980, the FDA has approved only one drug for treatment of childhood cancer, compared to 50 for adults."
(Read more HERE on the Childhood Cancer Caucus Website)

Oh, boy! This is something we should be shouting out on our rooftops.
Finally, finally, finally something can be done to get more treatments for childhood cancer.

Our own Utah Representatives are not listed as supporting the the Creating Hope Act, but with a minutes time we could each hopefully get Utah's representatives in support of this important Act.  There is an easy on-line form that you can "fill-in" with a few sentences about why this is important to you and have e-mailed directly to our Representatives.

to get to the online "fill-in" form





 
You can read the House Bill HERE

Friday, October 7, 2011

What Helped Us Get Through A Cancer Diagnosis

The first week after learning that your child has cancer can be extremely difficult, but family, help from friends, neighbors, and even strangers, prayers and acts of kindness, and work carried us moms through the hardest of times.

Sharing your burden with others will help lighten the load, even though it may be to hard to do. Wendy and her husband, "sat down together and wrote a message that we would post on both of our [facebook] walls. What was amazing was the way people reacted. Friends were posting on their walls requests to pray for us. One friend started a chain request, which people re-posted. Strangers all over the world were praying to their various deities on our behalf. It was the most amazing thing I've ever seen."  

Many of us turned to family and and close friends for support.  Crystal said, "even strangers" were supporting her.  Michelle received much relief when her parents drove all the way from Canada, "they dropped everything ... and stayed the whole month." It has helped many of us to talk to another mom who also has gone through cancer with their child.  Crystal said,  "Chelsea came and talked to me.  It helped so much knowing I wasn't the only one going through this."

Sharing our burdens with God has helped us get through the next day. Elizabeth said, "I never prayed so hard in my life." Kristin said, "I would go to bed and cry and cry, and not know how I would get up the next day and do it all over again. Then I would pray that I could. And I would wake up the next day and do it."

Having others pray for us has given us support.  Wendy's church fasted for them, "in all the meetings, people mentioned us in prayer. It was during that time that [our son] had the hardest time of all, and I feel like those sincere prayers and the sacrifice of people fasting is what carried him - and us - through that last, horrible day in the hospital." One group of kids from a local middle school started a facebook group for prayers for their fellow classmate. Elizabeth said, "it was so comforting and faith building to know so many kids were getting on their knees and praying their little hearts out for my boy. I felt and knew the Lord loved each of those kids just as much as He loves my [son] and He wouldn't let them down.  It brought me an amazing amount of confidence going into this."

Many random acts of kindness were shown all through our children's cancer treatments.  For Jill, "it was especially sweet to come home and find the flowers outside our home beautiful and blooming. My 80 year old neighbor offered to water them everyday. If it wasn't for her, I would have come home from all of our hospital stays to dead flowers.  It was a small and simple gesture of love and went a long way in our hearts." Kristin said that "one night we had been in the ER all night long, and came home exhausted. I heard the trash truck at 8am and knew we had forgotten it, but could not get out of bed to take them out. I realized later that day someone had done it for us. I still don't know who did it and they will never know how much that meant to me that day."

Receiving monetary donations has helped many families cope with the costs of bills, food, and travel to and from the hospital.  Just after a diagnosis of cancer, Sonja's family had a weekend where they were treated to an "emergency vacation."  She said, "it was a crazy thing and i would never have thought of it myself, but my sister who had been through cancer talked me into it and people came out of the woodwork with frequent flyer miles and money. We spent very little of our own money, which made it especially helpful. The beauty of the trip was that once we landed in San Diego, I magically had an appetite and I slept at night, something I hadn't done. I hadn't really even been eating. As the plane approached Salt Lake again, I felt all the anxiety come back, but it was a little weaker than before and I felt better equipped to deal with it."

Having something to do, or having something other than cancer to think about can help you cope.  Rachel was grateful for work and "knowing I had an outlet for myself really helped."  Jill said, "some people thought I was crazy that I kept up my piano teaching with a sick child, but those six hours a week when I was teaching were the only hours of the week that I didn't think about cancer. I was so refreshed after I had finished teaching, it made it easier for me to cope with cancer."

Kristin says it perfectly in summing up the whole ordeal, "It would have been so hard without others lifting us up during that time. It reminds me of those mosh pits where people are just carrying one person through the top with their hands. I still don't know how we did it, but that had a lot to do with it."

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Thursday, October 6, 2011

Meet Erin, Our Little Air Bear

I was rocking my 23 month old "little air bear" to sleep for her daily nap, I held her longer than usual and she fell asleep in my arms.  I looked at her beautiful face and I marveled at how much I loved my littlest child.  I reflected back on how we had giggled together while playing on the floor and I couldn't help noticing how strong her spirit was, and yet how weak her body looked.  She was very pale, extremely small for her age, and was covered in bruises, many in very odd places.  During that quiet moment, God touched my heart and told me that something was not right with Erin's body.

Two hours after a blood test on June, 1st 2010, our Pediatrician called and said he was certain Erin had cancer in her blood.  The next morning our Oncologist at Primary Children's Medical Center confirmed that Erin had a rare and severe from of blood cancer, AML (Acute Myeloid Leukemia, type M7).  She was in the medium risk category, but did not have a sibling match for a bone marrow transplant, so we went ahead without a transplant.

Erin's treatments consisted of 5 rounds of intense high-dose chemotherapy lasting over 8 1/2 months.  Of that time, she spent 146 days living in isolation at Primary Children's.  Through it all, she was such a happy shining smiling girl despite her many fevers, scans, and sores.  She never threw a tantrum about wanting to go home or leave her room, somehow she knew that she had to live there in that tiny room. 


Though there were many hard days we saw many miracles and blessings.  They came through phone calls, texts, messages, letters, friends, words of encouragement from our nurses and Oncologists, and through complete strangers.  It was those miracles and blessings that helped us cope. 
I prayed every day that the spirit from our home would also reside in Erin's hospital room so that our family would feel like we were still all together.  God blessed us with that, and Erin's room had a sweet feeling in it.


 I believe that the trial of Erin's cancer gave our family a time to grow closer.  It taught me about God's love.  There was a time when I simply wanted God to heal Erin and be done with cancer.  I knew that He could heal her right then and there.  God did not heal Erin in answer to my sincere pleadings, but He opened my heart and helped me feel the love that He had for Erin.  He let me know that He was just as concerned with her as I was.  It was truly glorious to feel the love my Heavenly Father had for my daughter.   


We made many close friendships through Erin's cancer.  We drew close to other families also going through cancer, and created everlasting friendships.  Erin finished her treatments for cancer just one week before Christmas.  My eyes teared up all Christmas morning while watching our family being all together. 

Erin is now 3 years old and is a healthy and vibrantly strong cancer-free little girl.  There still is hardly a day that goes by that I don't think about what we went through.  Some days I worry that it will all happen again, but I feel God's love strongly that no matter what comes our way, we can handle it and learn and grow from it.


You can read more on
Erin's Story

Tuesday, October 4, 2011

Meet Carson






Carson is the Youngest of three kids, he has two older sisters Sydney & Hannah who absolutely adore him. He is a very sweet and easy going little four year old. He loves animals, trucks, trains, and playing with his many friends and cousins. He loves to go to the zoo, the park, and Grandma & Grandpa's house. All pretty typical for a four year old, only he is not your average four year old.. Carson has one other place he visits on a regular basis.. Primary Children's Medical Center's Oncology Unit. On July 13th 2009 when Carson was just two years old he was diagnosed with Acute Lymphoblastic Leukemia- The Treatment Sentence for ALL= Three Years and Four months, or =Just Brutal ! During the first 9 months of his diagnosis and treatment- life was very rough, there were lots of uncertainties, it was a very scary time for both Carson and his Mommy. The first few rounds of treatment involved lots of different drugs with lots of nasty side affects, very hard hitting Chemo's, lots of back pokes, blood & platelet transfusions, very low counts, and lots and lots of Isolation. . Carson got very sick, and very thin, he lost all of his beautiful dark hair, eyebrows, and his beautiful dark eye lashes. Once he hit maintenance therapy about 10 months later life got a little easier for him, Carson started to feel and look more like a typical toddler. His hair grew back and he started feeling a lot better, luckily during this phase of treatment his meds are considered more of a low dose therapy and so he has been able to get out more and get back to being a kid again.


Carson is currently two years and two months into his treatment, he has now passed the middle mark ! Yay!! Carson is currently attending Pre-School, and this past spring he played T-Ball and he just started outdoor Soccer this fall. Carson is hardly phased by the many trips to the Oncology Clinic or the ER in which we visit regularly. He does not even flinch at a needle or a Dr Examination. It has become the norm to him. He is so brave and so special to me, I love him so much, he is and always will be Mommy's little hero.

Monday, October 3, 2011

Meet Millie

Hearing the word cancer in any form changes lives forever. It changed ours, but before we heard those devastating words in regards to our 4 year old daughter we had another trial to face.
On August 28, 2009 I delivered my second child by emergency C-section. He arrived into this world 11 weeks too soon. Thankfully Austin was strong and surprisingly big. He weighed a whopping 4 lbs 8 oz.
Austin spent a month in the NICU, a month I will never forget, a month that some days I did not think I could physically or emotionally make it through. It was difficult to leave my brand new, tiny, helpless baby in a cold hospital. Of course I knew he was in good hands, but I was his mother. The problem was I needed to be the mother of Amelia as well. She seemed to be struggling with the adjustment of sharing my time. For years it had been just Millie and I during The day while my husband was at work. We were best friends.





Luckily Austin was a fighter and although he came home on oxygen he was able to get out of that dreaded place 31 days after his birth. It was overwhelming to feel like I had passed the most difficult trial in my adult life, but I was so wrong. I had no idea as I held my little man with such pride that a horrible beast had taken hold of my daughter while I wasn’t looking.



This is Millie right around the time her cancer starting taking over. She still looks so healthy.
My sweet baby girl hadn’t been herself the first few months of being a new big sister. Millie tried to be happy but she just couldn’t be. She was so whiny and tired all the time. She would complain about her legs hurting and told me she needed to be carried. Some days she would just cry for no reason.

I knew something was wrong. I had called her doctor repeatedly but he always had a reasonable explanation for her symptoms. I started to wonder if she was reverting back to baby like behaviors. Really, I didn’t know what to think and I was overwhelmed with being a new mom again.

A few weeks later on December 17, 2009, I insisted Amelia have a blood test. While she was standing next to her other classmates during their Christmas Program it was painfully obvious at this point that something serious was going on. That afternoon we were sent to Primary Children's emergency room and we sat there terrified at the words we were waiting to hear, IT'S CANCER. There is nothing more horrific then hearing those words. At this point Miss Millie began the fight of her life against her Leukemia.


Amelia as the Happy Little Elf. She was so cute, but so sick!

On the very day of Amelia’s diagnosis Austin was at Primary Children’s Hospital as well. He had a double hernia surgery the week before and was there for his follow-up appointment to make sure everything looked good. The day Austin was officially healthy was the day Amelia's health came crumbling down. I couldn't breathe.


Both my babes at Primary Children's


Amelia was diagnosed with Pre-B Acute Lymphblastic Leukemia on December of 2009 and she will continue to get daily doses of chemotherapy through February 2012. It has been an incredibly stressful journey for so many reason, but there has also been a lot of good to come from it, like meeting all you amazing moms. We are so grateful that Millie has been responding well to her chemo. She has her ups and downs, but we are incredibly blessed that she is winning her battle while always having a smile on her face.


Amelia started Kindergarten a few weeks ago and loves it. She also has about 5 more months of chemo, but you'd never know it, She is a true ROCK STAR!


to read more about Millie, you can visit her blog 

Thursday, September 29, 2011

Chase


Chase was like any other 2 yr old little boy.  He loves trucks & cars, riding his bike, going to the park, and just having the carefree life that any 2 yr old boy deserves.  On July 22, 2010 his life was changed in a big way and very very quickly.  Unlike a lot of the kids diagnosed, Chase seemed to me to be perfectly healthy.  He had a few weird things going on, but nothing that seemed to me to be red flags for what was to come.  He was happy and healthy (at least I thought).  He had been a little extra tired, but not anything that had me worried.  He was asking for naps instead of me telling him it was time for a nap.  He had some weird really big bruises in strange places that I didn't know how he had gotten them.  He fell and bumped his lip and it was bleeding pretty bad and wouldn't stop from just one little bump.  The last thing was he started telling me that when climbing up on my bed or on a high chair that his side would hurt.  He was only 2 yrs old so I wasn't sure if he was telling me that his arm hurt or if his side hurt.  These were all things that happened on different days, spread out so I didn't think to put them all together.  But all in all he was still happy and he wasn't sick.

At the time I was about 32 weeks pregnant.  We were headed north for the next two weeks.  We live in Southern Utah and I was taking the kids to my parents house in Logan while my husband went on a golf trip to palm springs.  I was feeling huge and living where we do in July it was really hot.  So I thought we would escape the heat and get some help from grandma in the last weeks of my pregnancy.  I was in the stage of visiting the doctor every two weeks for my pregnancy so I needed to see him right before we left.  I had the car packed up ready to head to Bear Lake with my parents so we had EVERYTHING in the car.  I was just getting out of the shower when Chase came in my bathroom.  He had just woke up and his whole face was red.  He had a bloody nose and like any normal kid was wiping it all over.  I held him in my wet arms and put a rag on his nose.  I don't know if it is because I was cold and wet or because at this point I knew something had to be wrong, but it felt like forever for his bloody nose to stop.  I finished up what I had to do that morning and put the kids in the car and headed to the doctor for my OB apt.  Since I see a family doctor I just mentioned that I needed him to look at Chase while we were there.  After my exam he asked me what was going on with Chase.  I gave him the list, which at the time I was so embarrassed to tell him.  I thought for sure he would think I was crazy when I told him my 2 yr old boy had bruises (what 2 yr old doesn't?) and one single bloody nose, and just a little on the tired side.  He did a full physical exam and noticed little petacia (not sure of spelling, but these are just little spots caused by problems with the blood).  They were all over his belly.  I had noticed them in the bath tub a week or so before hand, but then it seems like they had went away so I forgot about them.  After feeling his spleen and that it was enlarged my doctor ordered a CBC.  He kept me very calm, in fact I still thought there was nothing wrong with him.  He told me that it could be ITP which is a condition of the platelets in the blood (which help it to clot).  He said that ITP causes low platelets and there is no treatment for it.  You just have to wait for it to go away and be super careful when his platelet counts are low.  ***I now know that he had a hunch that it was Leukemia but wanted to keep a hugely prego, mom of two, driving alone up north, calm.  He knew that the lab results would come back before I reached the Salt Lake area and then he would deal with it then.  I drove to Salt Lake pretty calm, but thinking that Chase's spleen was so big that at any time it could burst and we would be in big trouble.  Little did I know that would become the least of my problems.

We reached the Salt Lake area and I had not heard from my doctor yet so I started to panic.  He had told me that as soon as the result were back he would call because if it wasn't ITP then we would be going to Primary Children's for follow up's.  Again, he never told me the alternative and for some reason I never asked.  I called my doc and the nurse knew who I was and acted a little weird when she said, "Oh, he is in a room with a patient but I know he wants to talk to you so he will call you right back."  The fact that the nurse was filled in on Chase's situation made me a little suspicious.  I was at 5200 S. when he finally called me back.  He asked where I was, and then said to head up to Primary's.  I knew where it was but had not been there since I was young enough that my mom was driving me there.  So I immediately got off the freeway to finish talking to him.  He said that Primary's wanted to run more lab's and that we should go to the ER.  He also told me not to panic, and to not have my husband turn around.  Remember he is on his way to Palm Springs.  So since he said this, I again thought it can't be too serious.

We got to the ER and it was FULL of sick people.  I waited at the desk behind a lady who was complaining that her little girl had a fever and has been waiting for 2 hours.  AHHH!  First of all we were all healthy and on our way to vacation.  The last thing I wanted was for anyone to be sick while we were at the lake.  I didn't want to sit in that waiting room full of sick people.  I walked up to the desk and told them Chase Prince was here from St. George.  I also told them that while we waited we would be down the hall or outside.  We were not waiting there.  We walked away for about 5 min when the nurse said they were ready for us.  WHAT?  That lady said she had been waiting for 2 hours.  Why us?  Why so quick?  Then I told myself that it was because all we needed was another CBC and we would be on our way.  Once we got into the room it is all a blur to me.  My mom came down because I called her and told her that they wanted to keep him overnight to give him blood.  His red blood was too low.  I needed somewhere for Abby to go, and thankfully my brother in law lives five minutes from the hospital and was there before we even got checked in.  It is a night I will never forget.  A night of confusion.  A night of wonder.  A night that changed our lives forever.  And I still had no idea why we were really there.

They hooked Chase up to some antibiotic drip and again, I still do not know why.  They never said anything, but that they wanted him to be protected from all the germs in the hospital because his blood levels were so low.  (I look back and wonder how I was so blind to all that was going on around me).   We walked up to the ICS floor and once we walked through those double doors where you have to wash your hands I knew something was up.  I knew that this wasn't some little problem that would go away on it's own.  I knew we must be in for the long haul.  One nurse had said they were looking for "the C word."  I think it was the mommy in me that didn't want to ask what "the C word" was so I just stayed blind to it all until the moment of walking through those doors.  Chase's nurse for the night saw us coming down the hall.  She took one look at my healthy little boy that was as happy as can be and said, "oh, he has the good kind."  I tried to play along to get more info out of her, but she could tell I knew nothing.  She went to find the medical assistant that was helping with Chase down in the ER.  She came into our room and said to us, "they didn't tell you anything, did they?"  The medical assistant had filled her in on what had happened downstairs and the nurse was livid.  She couldn't believe that we had no idea what we were really doing there.  Again, a lot of this was me being very blind and probably in denial about everything that was happening.  In my mind we were still on our way for a vacation to Bear Lake and this was just a pit stop along the way.  I couldn't have been more wrong.  So after the nurse did the doctor's job and told me what was wrong and what our options were we settled down and tried to sleep.  I am sure I didn't sleep a wink just wondering when Ashton would make it back (at this point I told him to get on a plane first thing in the morning and get here as quick as he could).  I was wondering what kind of cancer did he have?  Did he have the good kind that the nurse was talking about?  I sent out a mass text to all my friends and family asking for prayers for Chase, while tears were streaming down my face.  I laid in that hospital bed with my son just wondering why?  Why did this all happen?  That was the beginning of a long life of worry and wonder.

Chase was diagnosed 14 months ago.  The first 6-7 months were hell.  I hated every minute of it.  Chase wasn't too pleased either.  We had to drive weekly to Primary Children's.  5 hours up and 5 hours back.  A lot of those trips he was fasting and that made it even harder.  He has endured more than any child should ever have to.  He is a three yr old that knows medical terms and knows that we wash our hands multiple times a day.  He knows what germs are and that anywhere but our house is filled with them.  We tell him in any public place "don't touch anything!"  So now when we walk into a public place (which he didn't do for at least 7 months) and I say, "Chase, what do we touch?"  He says back to me, "anything."  So cute, but so sad.  He is missing out on a big part of his childhood.  One that he can not get back.  But I hate to always be so negative because we have had so many blessing come to our family.  Just about a month into treatment we were blessed with another little baby boy.  He brought joy to our home that was very much needed.  We have been touched by so many lives.  There are good people in this world.  You only hear about the bad ones.  But I really do believe that the good out weigh the bad.  I saw it first hand.  So many people have reached out and helped our family.

Chase is still in treatment.  His official diagnosis is pre-B Acute Lymphoblastic Leukemia.  He is now in maintenance and instead of weekly chemo at Primary's he only has monthly IV chemo.  We do two months here and then one month up north.  It has been a nice break to not have to drive every week.  He takes daily chemo and other medications at home.  He will continue to do this routine every day until Oct. of 2013.  He has poison running through his blood a good portion of his childhood.  He is so young he doesn't even know what cancer is.  He doesn't even understand what death is.  He doesn't realize how lucky he is to still be alive.  I look at him every day and thank my Heavenly Father for keeping him here with me.  I love this little boy to pieces and along with all the other little fighters out there he is the toughest kid I know.  I LOVE YOU CHASE!!!


To read more about Chase and follow along with his progress you can visit his http://princehappyfamily.blogspot.com