Meet Audrey

Audrey's story, written by her mom, Shelly K.
September 13, 2011 was a day that forever changed our lives!

Audrey was diagnosed with Hodgkin’s Lymphoma.

 

At 12 years old, she had just started 7th grade.

She had what I thought was just a cold that would pass.  She was having a hard time breathing when she lay down, headaches, and then when she woke up in the mornings her lips were bluish. I still thought just a cold.  She came home one day (Wednesday September 7, 2011) and told me that her collar bone was swollen (there was a golf ball size mass on her shoulder) and her throat was sore, I took her to urgent care and she was positive for strep throat, antibiotics should fix this.

But 5 days later (Monday) she was feeling everything but better, so we went into the pediatrician and he looked at her  and went to his office came back in and told us he wanted a CT with contrast, radiology wanted to wait for preauthorization, which after I was told the cost, I agreed.  Audrey called me at work that night in pain and with fever; of course I figured a Tylenol would fix it, short of taking off work to go to ER that’s what I told her to do.

 

I called the Doctors office the next morning for RX for pain and the nurse called me back and said He did not feel comfortable with that until he knew what was going on. Tuesday we went in for the CT, and an appointment to go talk to him after morning patients.   I received a phone call to come back for Blood test and chest X-ray, then to hear the news.

When he walked in to the exam room I knew in my heart it wasn’t good.  He sat down and said “Audrey has Lymphoma” the tears started, I knew Cancer was bad, (having went to school for Medical Assisting I knew “oma” was Cancer.) He told me he had been on the phone with Primary Children’s Medical Center and the Oncologist wanted her out there as soon as possible. We were introduced to ICS that night! What a whirl wind of a day.

 

Wednesday she had a biopsy and bone marrow aspirate and PICC line placement (line to give her the chemo (poison) that would kill all the cancer cells also any antibiotics and blood), Saturday September 17, 2011, she started her first of four rounds of chemo.

She done pretty good through most of the chemo, chemo was in patient, she had 3 inpatient stays for fever.  In all she had 4 rounds of chemo, 14 days of radiation therapy, several transfusions.

 

No child should have to go through this.

She finished her therapy on January 18, 2012.  No more cancer cells were evident, and she will follow up with Oncology every 3 months.  I thank God for her every day and for the doctors that helped her through this trial of her life.

I love you Audrey, you are my Hero!

Love, Mom

Meet Zoey

Zoey's story, written by her mom, Kimberly B.

I was 34 weeks pregnant with Zoey when I had not felt her move all night. I decided it's better to be safe than sorry, so I headed up to the hospital. I was right, she was in severe distress and I had an emergency C section. Zoey Rae was born on April 8, 2009. Zoey was taken away to NICU immediately and put on a ventilator. Other than her lungs not being mature she seemed to be doing well for being 6 weeks premature. But she started to go downhill fairly quickly. Dr thought she was losing blood somewhere and wanted to do a CT of her head. It came back normal but he still had a feeling something was not right. So thankfully for his ill feeling he decided to do an ultrasound of her abdomen. And there it was, a golf ball sized "mass" on her Left Kidney. He immediately decided to life flight her to Primary children’s medical center. She was not even 5 hours old and she was leaving me. I had to be put under for the C section so I had not even held her or really laid eyes on her yet. They wheeled me into the NICU and I got to watch them load her onto the helicopter. Watching that helicopter fly away with my daughter that I had not even held was one of the worst moments of my life.

I was kept in Hospital for 5 days due to complications of my own. So it was Easter Sunday 2009 when I first got to touch and see my daughter. She was the most beautiful little girl I had ever laid eyes on. She was still on a ventilator and Swollen up like a balloon. She had needles and tubes all over her, PIC lines, Arterial lines, IV’s in each hand and one in her head. I could not believe that was my baby. And even though I had been contacted on the phone with Dr’s and nurses for the past 5 days I still really had no clue what was wrong with my baby.

The Dr’s kept calling it a tumor but I really did not grasp what that meant until the surgeon came in to talk to me about Surgery. And he was the first one to use the word "cancer" with me. It hit me like a ton of bricks. How could a newborn baby be born with cancer? I had never heard of such a thing. I had so many emotions running through my head. And I kept thinking what did I do wrong, what did I eat, what was I exposed too. So easy to blame myself for this.

Zoey was a week old when I first heard the term Neuroblastoma. I had a 6 week premature baby with Neuroblastoma, how on earth did that happen. She was finally off the ventilator at this time and was breathing on her own. Dr’s wanted to do surgery that week to ensure that the cancer did not spread. But when they did a new ultrasound they were happy to see that the tumor had not grown at all since her birth a week earlier. At this point they decided to wait and let her gain some weight and strength.

Zoey had been living in the NICU for 3 weeks when the Dr’s, nurse practitioners and nutritionist’s met to talk about her surgery. They wanted to wait and see what the tumor was going to do but because it had grown on her adrenal gland it was causing severe blood pressure problems and they were worried about long term heart damage. Also her thyroid was not looking so good. So they decided that they would do surgery on her 4 week birthday. At this point we were not sure what would happen after surgery. All depended on what it looked like once they got in there and what the lab had to say about the tumor.

May 6th 2009, the day of surgery. I remember that day like it was yesterday, my sister had flown in from Maine to be by my side (did I mention I had become single while pregnant). So it was so nice to have her there with me. It was the longest 5 hours of my life. Sitting in the waiting room while my 4lb 11oz baby was being cut open. The surgery actually went really well. They were able to get the entire tumor out. Bad news was the adrenal gland had to come out, and the main blood supply to Kidney was wrapped around the tumor. They tried to save Kidney, but over the next year Kidney died and shrunk down to about pea size.

We got great news about 5 days after surgery, they classified her Neuroblastoma at stage 1…the best it could be. The tumor was solid on outside although it was not on the inside they were pretty sure it had not spread anywhere. At this point and time Zoey would not need any other treatment from Oncology. They were feeling really great about her outcome.

Zoey was discharged from the NICU at 6 weeks old on May 20th. We found that really funny, she was due May 19th and my son always says is she would have come on her due date she would not have gone home until the 20th anyway!  He was super excited about her coming home; it was RSV season so he was not allowed in the NICU.  He had not met his sister, only seen pictures of her.  It was the best homecoming ever.

Zoey

Zoey is turning 3 in April and we are so thankful for the NICU doctor that did not give up.  His persistence is why her journey was so short and that no other treatment had been needed.  Finding her cancer at stage 1 was such a blessing, Zoey is called our miracle baby!

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.

Read more about Annabelle on her family blog.

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

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

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.

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.

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

HERE

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.

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 

http://bradyandamanda.blogspot.com

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

Skyler

We are going to start spotlighting some of our cancer fighting cuties on the blog.  Each of them have a unique story, experience and lessons to teach us.  We will be posting at least one story a week so keep checking back for more great stories on these amazing cancer fighting cuties!

I wanted to start with Skyler's story.  Skyler is a very special boy who will forever hold a special place in my heart.  I was introduced to his mom, Crystal, a few days after he was diagnosed.  Cami was only about a month into treatment and I wanted so badly to help them, but instead Crystal and Skyler helped me and taught me more than I ever could have done for them...

Skyler's story:

Written by his mom, Crystal

Skyler was diagnosed with Pre-B cell Acute Lymphoblastic Leukemia on August 17th 2010 at the age of four.  A couple weeks prior to diagnosis he was having fevers, puffy eyes, and unexplained bruising all over and around his eyes.  I took him to InstaCare and they just wrote it off as allergies and gave him an antibiotic, but instead of getting better he got worse.  He couldnt walk and wanted to be carried everywhere.  The last straw was when his belly started get really big and swollen.  I took him to his pediatrician who only felt his belly for a minute before he got a worried look on his face and sent us up to PCMC, his liver and spleen were very enlarged.  He said somebody would be waiting for us at the ER.  I knew right then something wasnt right and my uneasy feeling over the past couple of weeks became reality when they told me "Your son has cancer."  My heart sank and my world stopped but as I took one look at his limp, swollen, bruised body I knew it was true.  We were admitted that night to the oncology unit.  Walking into ICS is something I will never forget as I looked around at the bald little kids playing.  This was real, my son was now one of those kids.   The next day we found out which type of Leukemia he had (ALL) and Skyler went in for surgery to place a port in his chest so they could pump poison directly into his heart.  We were told that we would be inpatient for about six days and then would be able to go home and do his chemotherapy treatments outpatient for the next three and a half years.  Those six days turned into four and a half months in the hospital, three of those months were spent in the Pediatric Intensive Care Unit on life support.  

Everything that could go wrong did. That first week Skyler developed Tumor Lysis which completely shut down his kidneys putting him into renal failure.  They quickly placed a dialysis catheter and started him on dialysis.  That first week he gained over ten pounds of fluid from his kidneys not working.  He got so big to the point where he couldnt move and developed a bad wound on his bum that he eventually had to have a would vac to close and numerous times having a surgeon scrape out.  It took over 7 months to heal.  Skyler also developed an invasive fungal infection that started out in his sinuses.  He went in for numerous surgeries to try and scrape them out but the surgeon eventually stopped saying there was nothing more he could do for him.  If he took anymore out it would leave Skylers face completely disfigured.  The fungal infection quickly spread throughout his body leading to failure of five of his organ systems.  His lungs were so full of fluid that he stopped being able to breath for himself and they put him on a ventiltor and had a machine breath for him.  He was completely sedated for the six weeks that he was intubated.  They also had to place six different chest tubes to drain fluid and air that were in his lungs.  They also placed drains in his belly to drain fluid from there also.  Skyler also had a problem keeping his hematocrit and his platelets up leading to well over 100 platelet and blood transfusions.  They eventually removed his spleen because it had quit doing its job and they thought thats what was eating up all his platelets.  He was also in isolation alot of the time due to all of his infections he developed, meaning the staff had to put gowns and masks and gloves on before entering the room.  He also had to have 5 different dialysis catheters placed in his neck and chest because they either got infected or just stopped working.  At one point I counted 17 different tubes and lines pumping stuff into and sucking stuff out of him.  He was covered head to toe with tubes.  It was a very noisy room full of pumps and machines that were keeping Skyler alive. When one of your organs goes into failure it decreases your chance of survival, so with five of Skylers organs that were failing it decreased his chance of survival by alot and we were told at one point that he wasnt going to make it, that we were going to have to say goodbye.  I remember sitting on the bed holding his warm little foot crying and thinking how in the world was I supposed to say goodbye to the one person that I loved more than anything in the whole world.  How could I say goodbye to the most precious, perfect little innocent boy that was my flesh and blood?  Skyler did what he does best though and surprised everyone, he held on.  He's a fighter, a miracle.  Slowly but surely I was able to see my son come back from the brink of death. I got to experience seeing my son opening his eyes for the first time after so long without seeing them.  I got to experience hearing his first words (which were I want my mommy) for the first time again after months of longing to hear his sweet voice.  I also got to hold him in my arms again after months of only being able to hold his hand or give him a kiss.  I got to experience his first drink, sitting up, standing up and taking his first steps.  

These were things I will never forget and things I will never take for granted again.  Skyler taught me what a real superhero really is because he is one.  He taught me to never take the little things for granted because you never know when they might be the last.  After one long hard painful year Skyler was finally able to hit maintanence, the phase of treatment that he will be in for the next three years.  When he is finally able to be done with treatment he will have gone through over fours years of getting poison pumped through his little body.  Life will be forever different for him because he will have to be on meds for the rest of his life because of his spleen being removed, he will also have to wear hearing aids because one of the antiotics he was on caused him to lose hearing in both ears.  Even though this cancer journey has been hard and I have seen alot of bad, I have also seen alot of good.  There are so many good people in this world that have helped us get to this point and I will be forever grateful.  Cancer changes everything.  I am a differentperson because of it, but I believe I have changed for the better.  Cancer has taught me to love more and enjoy life. 

 Thank you Crystal for sharing Skylers inspiring and amazing story.  You are both amazing!  

To read more about Skyler you can visit his blog.

crystalandskyler.blogspot.com