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Our SuperHero Stories

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THOMAS >  from his Mom

Thomas was a typical 13 year old boy playing football when he started complaining of back pain.  I took him to the doctor and they said it was a muscle strain.  I then noticed he was dropping weight like crazy.  He then complained of side pain  so I took him in, they said it was a kidney stone.  Two days later he couldn't walk across the living room so I rushed him in.  They did blood work that showed cancer, the worst words a mother could hear.  His CT showed many lesions so they rushed him to Portland.  He was diagnosed with ARMS, a rare muscle cancer that worked its way into his bones and spread throughout his body.  This is very hard for me to talk about  as we are only 6 months into this.  I never thought one of my babies would have to go on a journey of fighting for their life.  He's such a sweet boy, so emphatic and heroic. 

Update:  Thomas was able to fight until December 27, when he passed away.

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ALAHNA aka PEANUT >  from her Mom

Alahna "Peanut" Converse has always been a very active kid. She competes in crossfit events, races BMX nationally, rides bulls, loves her animals and spending time with her family. Eight months ago she started experiencing lack of energy, trouble catching her breath and couldn't race like she used to. After many Dr. appts and therapy she finally had a CT scan done for some neck pain and that is where the tragic news of cancer was given to us. This crushed her world as an athlete! She just finished her 2nd round of chemotherapy and still has 4 more to go and hopefully that will be enough. This will be a long road ahead of us all. 

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ROMAN >  from his Mom

Roman was diagnosed 9/2020 at Sutter Sacramento and had treatment for 6 months.  Treatment was  successfully completed  and he was discharged March 2021.  Roman relapsed May 2021.  He went back to Sutter in Sacramento for 3 months of chemotherapy, then was transferred to UCSF to get a bone marrow transplant. He had a transplant Sept 9, 2021 and his dad was the donor.  We stayed in SF for recovery and came back home at the end of November. He is currently doing well, but he is not 100%. We go for follow ups once a month.  His bone marrow is at 99% donor, so he is still getting T-cells infusions from his Dad. His B-cells are also still recovering. 

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ALXIE >  from her Mom

Alexie was just like any other kid running, playing at school until she tripped over her shoelace causing her to fall and skin her elbow and her knee. After a couple days those wounds did not heal and caused severe bruising on both areas. We took her to her regular doctor where they ran labs due to the petechiae bruising she had on her lower legs. Those labs confirmed that her white blood cells, red blood cells and platelets were at almost zero. Her local doctor sent us to Mercy Medical Center where they ran their own labs confirming the same thing that her doctor said. We were then flown to UC Davis that same day. She did not even get a chance to hug her brother or sisters before leaving. After we landed in Sacramento, Alexie had to undergo a lot more tests. Those tests confirmed that Alexie had Acute Myeloid Leukemia. Alexie then went into surgery the following day to have a Broviac line put in her chest and to get a bone marrow sample. We opted for a study medicine. This medicine has shown to help children fight the cancer better and to hopefully help her go into remission and stay in remission. Alexie's first round of chemo was really hard on her, she bled from her nose and her mouth almost daily and received platelets and blood almost every day for those 35 days. After 35 days were were able to go home for five days and spend time with her brother and sisters before we came back to Sacramento for her second round of chemo. Her dad is staying home with her brother and sisters while Alexie and mom stay in Sacramento. Alexie's type of leukemia requires her to stay in the hospital everyday during treatment until her counts recover. she is currently on her second round of chemo. We are at day 43 of being in the hospital on this second round and unfortunately her neutrophil counts are still at 0. we are hoping her counts start to rise soon and she can to home for a few days to visit her bother and sisters before having to start her third round of treatment.

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AVALYNN >  from Avalynn's Hope FB

Avalynn Hope, has been in a grueling battle to fight AML Leukemia since 2016 when she was 4 1/2 years old.  This fight started at UC Davis, In Sacramento CA and landed her in the ICU, and truly no hope to live after contracting infections that almost took her life. Miraculously, she walked out of the hospital cancer free.

Avalynn enjoyed 6 glorious months at home and then in 2018, the leukemia came back. This time it took this family of 5, her parents and two sisters, 4 hours away, to seek treatment from cutting edge technology and research at Lucile Packard Children's Hospital.

Avalynn and her family faced the battle head on, after months of chemo therapy and an attempt at transplant, a mishap involving her knee and mold on her skin halted that attempt, which resulted in the leukemia returning for the 3rd time.

Miraculously a new stem cell transplant was presented and Avalynn finally went into transplant on September 19, 2019.  Several complications arose, but that didn't stop this little fighter from beating it.

3 days shy of her 1 year "stem cell birthday" the blood test again showed positive signs of leukemia.  And brought them yet again to Lucille Packard, to seek treatment and answers.

UPDATE:  Avalynn left this earth to enjoy heaven forever, cancer-free on October 6, 2019

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BRUCE

Five year old Bruce was diagnosed in November 2017 with diffuse intrinsic pontine gliomas (DIPG), an inoperable brainstem tumor with a 100% mortality rate and a medical overall survival of 9-12 months.  After undergoing a biopsy, VP shunt and revision, 30 rounds of radiation, and participating in a clinical trial, Bruce's tumor continued to progress.  Bruce earned his angel wings  August 4, 2018.

 

So young and taken too soon!  Now free from pain to just be a kid.

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BRAELYNN
Two year old Braelynn was diagnosed with Acute Lymphomatic Leukemia on May 27, 2018. She has a spinal tap and chemo in her spine every three months. Every month she receives chemo through her port along with antibiotics.  She also receives daily chemo and steroids that sometimes causes bone pain and daily chemo.  This treatment will continue until October of 2020.

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KRYSTAL MARIE
Krystal was five years old when diagnosed with Stage IV Wilms Tumors. She had her last chemo treatment on June 14, 2018.  There have been complications with tumors growing back in her left lung in November 2019.  Surgery was need to place a chest tube in to drain fluid that was causing severe pain and chemo was prescribed. Another surgery took place in December to clean out the lung and remove the tube since it was unable to drain the fluid. At this point the doctors decided to remove her left lung.  January 2020, three tumors have already grown back in Krystal's left side. She is starting chemo treatments again, hoping to give her time.


UPDATE:  As of 1:30 this morning (April 10, 2020)  Krystal Marie earned her angel wings. No amount of words can explain the lost feeling inside. Krystal you are our hero and so glad to know that you aren't in pain anymore. Rest peacefully in paradise our warrior princess!  -from her Mom

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CLINT

On Wednesday January 25th the Later family's world was turned upside down. After not feeling well for several days mom and dad took 4 year old Clint to the doctor. They discovered a very large tumor on his liver. He was life flighted to Dorenbechers Children's Hospital in Portland, OR. They performed more tests and came to the conclusion that the tumor is cancerous. Clint has been put on an aggressive chemo regimen. This has been a rough ride for our family. Since January 25th, 2017, we have been in the hospital 29 nights. We really miss home! This has been the hardest adventure of our existence!!

Update:  Clint was able to be at home when he passed on October 12, 2017

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CLINTON > from #SorensenStrong

 Clinton was born premature at six months, with a grade 4 brain bleed. He only weighed 1 pound 6 oz at birth (about the size of a Barbie doll) and spent 131 days in the NICU.  Doctors said he wouldn't make it but he proved them wrong over and over! This little fighter has been dealing with fluid on his brain, cerebral palsy, a large spot on his spine which may be spinal bifida, vision issues, and chronic lung disease.  He has been in and out of the hospital multiple times but has made tremendous progress!  

You inspire us all Clinton! 

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CRIMSON
Crimson was diagnosed with DIPG brain cancer.  She fought hard against this deadly brain cancer, but on May 6, 2019 at 4:27 she could fight no longer.  We mourn the loss of this vibrant, beautiful little girl who bravely gave all she had.

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AVA >  from her Dad
On September 19, 2017 Ava was eight years old when diagnosed with Embryonal Carcinoma. She fought against brain cancer, diabetes insipidus and a kidney disorder.  After surgery to remove the brain tumor, she had chemo and radiation. UPDATE: Ava is currently is on growth hormone replacement, MRI follow-ups, oral steroids and hormone replacement.

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RYLEE > from Rylee's Mommy

Rylee was a happy, healthy, spunky toddler that was so full of life. One day while changing her diaper I noticed something was not right.  I immediately called and set up a telephone appointment with an on-call doctor because Rylee's primary doctor was out of the office that week.  During that appointment the doctor and I went back and forth on getting an in-person visit.  She kept telling me it wasn't necessary and continued pushing a video visit. I told her if she was unable to schedule a visit for her I would just show up and hope for the best. I needed to have her seen in person. She finally agreed and made me an in-person visit for Rylee that day, October 21, 2010.

 

The doctor examined her and wasn't 100% sure what was going on so she decided to refer us over to a pediatric gynecologist in Oakland. Waiting for the specialist appointment felt like it was taking forever but a week and a half after the initial visit she was seen on November 2, 2020. During the initial exam the gynecologist wasn't able to see anything as the vaginal lesion didn't always present itself. I did take a photo just in case this was the issue and I showed her. She asked me what some of my concerns were as she knows parents tried to do their own research, I told her that I thought it could potentially be a Bartholin's gland cyst, or I thought it could be Rhabdomyosarcoma. She said it definitely wasn't a cyst of the gland but we weren't going to rule out the other quite yet.

 

That day she sent us over for an ultrasound to see if it was possibly just a cyst pushing out the vaginal wall but as soon as they did the ultrasound they showed me where the lesion was on the screen. I saw it was solid and there was no fluid. She was able to get us in for surgery/biopsy of the mass on November 5, 2020. Her surgery was scheduled and was supposed to only take about an house, but it took about three and a half with no updates throughout. My husband and I were sitting in the waiting area waiting for her to come out of surgery when a woman walked out and said she worked for Kaiser pediatrics and asked if we wanted to talk in a more private place.  Dr Caroline Hu confirmed that Rylee was doing okay however they had a pathologist look at the tissue from the lesion under the microscope and determined it was a malignant tumor.

The rest was kind of a blur at that point because those are words that you never want to hear. Your baby has cancer. When the full pathology report came back on November 10th it showed she had Embryonal Rhabdomyosarcoma.

Rylee was scheduled November 13th to be put under anesthesia to do a chest CT, an abdominal and pelvic MRI, a PET scan, a bone marrow biopsy, and bone marrow aspirate. She was under anesthesia close to 7 hours to get all these things done at one time to make sure the disease was not metastatic. After review of all the imaging it was determined that her tumor was localized and 13mm x 9mm x 6mm. 

The following weeks were all a whirlwind of information and we didn't really have time to process anything as quickly as it went. Rhabdo is very aggressive so we had to act quickly. We scheduled her surgery for Port placement on November 23. A last minute decision was made between my husband and I to have one of her ovaries removed and cryogenically frozen. Our hope is that years down the line they have the technology to develop such an immature ovary and she could one have her own children. We were told the amount of cyclophosphamide she will receive is double the dose of what causes infertility.  That was just salt in the wound.

Because of the ovary removal we had to go to Santa Clara to have the port placement and ovary removal, and immediately after we had to drive to Kaiser Oakland to be admitted for her first round of chemotherapy. The chemotherapy medications she is on are called Cyclophosphamide, Vincristine, and Actinomycin. The protocol calls for all three medications every 3 weeks and impatient stays at the hospital in order to have proper hydration as the Cyclophosphamide can cause damage to the bladder and the kidneys. When not in-patient, we do a visit to the clinic once a week so she can get the Vincristine.

Generally her stay in the hospital goes pretty well. There was one visit that the Lidocaine wore off as the nurse was trying to access her port and unable to do so correctly. She tried to gain proper access three different times without success.  This now makes port access extremely difficult as she has the fear of the pain that was caused during that access. The only other stay that stands out, she was getting her post hydration after chemo and the needle somehow slipped out of the port. This caused fluid to build up under the skin which caused extreme swelling and pain. They had to place an IV in her arm and try to re-access her port to make sure there were no blood clots and that they were able to get a good blood return.

I would like to say that she handled it well, but it was a very trying time.  She has done pretty well so far with limited side effects from the treatment. You wouldn't even know she was sick if she didn't lose her hair.  Her blood counts do fluctuate, but it never slows her down. She has only had two blood transfusions so far and one was preventative. 

It has been a long, hard journey dealing with this disease but Rylee gives us such inspiration with how strong she is.

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BRYCE> from FB pages and Mom
July 18, 2019 Bryce was diagnosed with Acute Lymphoblastic Leukemia when he was five years old.   He has had chemo, countless blood draws, infusions and lumbar punctures. He had a port surgically placed, and two Peg injections which are shots into each thigh.  The needles are big and the process was very bad for him the first time around. He had his first one done the second day after we got admitted with his diagnosis.  He wasn't able to start kindergarten this August and still hasn't been able to attend so far. Bryce has basically been on isolation from all family and friends because his ANC has been too low.  He lost his hair twice and the second time it literally fell out in handfuls which was very devastating for him.  He has always loved his hair.  It's a very hard thing for any child or family to go through.  Our lives have changed drastically. His sister took it very hard and worries about her brother a lot.

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DAMIAN >
Damian was only 20 months old when he was diagnosed with ATRT Cancer of the Brain. He completed a year of chemotherapy and two months radiation.  He had major reconstructive on his legs/feet in March 2019. He has PT, CT, and Speech Therapy 3 times per week and MRI scans every 3 months.  He is G-Tube dependent and has a feeding specialist.  He also has hearing and vision impairment, leg braces and requires numerous medications per day. He has been unable to walk unassisted for the past two years due to effects of chemo.  He was not expected to live past age two, but Damian has defied all odds!  
UPDATE: January 2020 Damian is now walking by himself!

 

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DECLAN> from FB pages
Declan was only three years old when diagnosed on April 16, 2019 with Stage IV Medulloblastoma Brain Cancer.  He went through a clinical trial of six weeks radiation and seven months of chemotherapy.  The radiation and chemo caused many side effects. He has been at St. Judes for nine months for treatment with several setbacks.  
UPDATE:  February 2020 Declan and his family are finally released to go back home to continue treatment.

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ELIZABETH> from her Mommy

  We started to notice Elizabeth had left side weakness when she began walking around 11 months old. She was diagnosed with cerebral palsy around 1 year and 5 months. They were sure of this diagnosis. Elizabeth didn't receive an MRI because they believed her cerebral palsy wouldn't show up until at least two years old. We didn't stop there. As a mother I knew it was something more.  We took her to two different hospitals and got many more diagnoses. We got a doctor to order an MRI March 22 of 2019. The MRI showed a mass in the thalamus of her brain. April 2nd of 2019 Elizabeth went in for surgery to get a biopsy of the mass. They diagnosed her with a Ganglioglioma. We talked about options for her treatment. Surgery is not an option because of the location; it could paralyze her if they tried to remove it. May 3rd 2019 Elizabeth had her port placement surgery and on May 16th 2019 was her first round of chemotherapy. She has treatments every week.

 

 

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GISELLE> from Giselle's FB Fight Like a Unicorn
March 9, 2018 Giselle was diagnosed with Glioblastoma (brain cancer).  Giselle's oncologist was honest: You daughter's prognosis is not good the only thing we can do is prolong your daughter's life with radiation and chemo and make memories."As a parent you don't want to hear that!! You want them to cure your child. I was shocked, numbed and had tears running down I just wanted to go home and run to my family." For the next year Giselle's mom stayed with her sweet baby Giselle whom she called her unicorn, to care for her full time and make those precious memories.   UPDATE:  God called Giselle home on February 8, 2019 at 3:35 pm. 

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We will not forget you!

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GEORGIA MAE> from Pray for Georgia Mae
  Georgia Mae was four years old when diagnosed with Stage IV Neuroblastoma on August 2018.  She was about to begin her last week of treatment when they found new spots in her hips and brain. She had surgery in January 2019 to remove all abdominal tumors, her left adrenal gland and left kidney.  In September her scans showed spots on her hip, liver and brain.  She has been having chemo and transfusions, but scans in February 2020 show spots in her lungs and more in her brain. This is an extremely aggressive disease. 
UPDATE:  Surrounded by family, March 18 2020 at 9am
Georgia Mae ran into the arms of Jesus, one day before her sixth birthday.

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IZZY> From Izzy's mom
 
At barely three years of age, Izzy went through almost 2 months of bad leg pain, fevers, weight loss, ER visits and "interesting" lab reports until she was finally diagnosed with stage 4 neuroblastoma on April 13, 2018.  Her cancer was only in her bones, so fortunately she did not have to have surgery or radiation. She handled her 8 rounds of chemo including 2 rounds of chemo including 2 rounds of high dose chemo/stem cell transplants like a true princess warrior and on January 7, 2019 we found out she was in remission!
 
While waiting to start the next part of her treatment plan, immunotherapy, Izzy's kidneys started to slowly fail. This landed her in the hospital again for 49 days.  During those 49 days, she had heart surgery, seizures, was medically sedated for 17 days, started dialysis, extubated herself with no hands and had to go through therapy to fully walk again. She completed almost 4  months of dialysis when her kidneys started to recover and she has now been off of dialysis for 7 months.  During this time, she started immunotherapy and was about to complete her last round and be done with treatment when we found out Izzy relapsed on November 18, 2019. We quickly started more chemo treatment along with more immunotherapy treatment and we found out on January 22, 2020 that Izzy is back in remission. 

UPDATE: Soon Izzy will be starting her 6th, and hopefully last, round of chemo for this second round of treatment. To say she did this all with a smile is an understatement. She has shown us what true strength is and she continues to amaze us each day. She's our hero.
 

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JOURNEY> From Mom

Journey was six years old when she began  battling a brain tumor.  Unfortunately, her family just received some mew heartbreaking news.  Journey's tumor has grown from 12mm in March of this year to 16.2mm. She has been suffering migraines, memory loss, speech issues, and motor skill problems.  Her legs and arms tend to get numb and weak at times as well.  Her neurosurgeon and team decided it was best to go forward with a craniotomy to attempt to extract the tumor on November 7th.  This was a very dangerous and risky surgery since her tumor is in the central sulcus of the cerebral cortex, and is attached to the left and right hemispheres of her brain.  Doctors are also looking for the cause of her seizures and her family is still waiting to hear the final results of the surgery and recommended treatment.

UPDATE:  2020 Journey is now two years in remission from her glioneoplasm (low grade glioblastoma) brain tumor. She is still battling with the effects of the tumor and surgery. She still has right side weakness in her leg and arm, frequent migraines, and short and long term memory loss.  She also battles with emotional and some behavioral issues from her tumor and surgery. Journey is a warrior though and won't give up the fight!

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JOB> From Job's Mom

 In late April, Job started exhibiting unusual neurological symptoms. He was acting spacey, his eyes would become unfocused, and he started speaking slower.  I called his pediatrician on May 2 when Job told me that he could see two of everything and he heard ringing in his ears whenever he laid down. The pediatrician told us we should go to the ER so they could perform any tests necessary to find the cause. On May 3rd, Job had an MRI scan at Vanderbilt Children's Hospital that revealed a large and aggressive brain tumor called "DIPG".

 

About DIPG:

DIPG is rare (200-300 cases in the US annually), incurable, has almost no known cause, and has a less than 1% survival rate for 5 years. The median survival time is 9 months from diagnosis. The tumor is in a part of the brain (called the pons) that controls a lot of the body's essential bodily functions (such as heartbeat, breathing, swallowing, eye sight...). For this reason, the cancer is inoperable, and chemotherapy has no effect on the tumor.

 

Jobs treatment plan and symptoms:

The standard treatment across the world is steroids and radiation. With no treatment, Job was given about one month to live. With steroids and radiation, there are almost no side effects, it will improve his quality of life, and his life span will likely be stretched to an estimated 6-15 months.

 

Job started taking steroids on May 3rd to help shrink the tumor before radiation. This is a temporary measure to help reduce the inflammation of the tumor. The steroids are helping to relieve some of his symptoms, but they are also making him really hyper and hungry (he will probably gain weight and retain water for a couple of weeks).

 

On Tuesday (May 9th) he will begin radiation treatments 5 days a week for 6 weeks (30 treatments total). The radiation may cause the tumor to temporarily grow (which is why he is taking the steroids), but it will cause it to shrink significantly in the following weeks. There are almost no side effects to the radiation. Job has a PICC line in his arm, and he is sedated during the treatments, so he should not experience any pain or discomfort in the process.

 

The doctors are confident that the radiation will be able to shrink the tumor enough that Job will be able to temporarily live a very normal looking life. The cancer will not go away, but there will be a period of time when he will feel and act normal. Job's doctors are estimating that it will be anywhere from 6-15 months, but it is hard to predict. After this, the cancer will return and there are few further treatments that have shown any real promise.

 

While we welcome everyone to do their own research, we want to stress that our hope is NOT in a cure. Our hope in NOT in attempting to make Job's life as long as possible. Our hope is in the LORD. Our hope is that the LORD will use this trial for good and for His glory. While we fully believe and pray that God is able to heal our son's body, we pray more fervently that God would give him faith in Jesus. "The sufferings of this present time are not worth comparing to the glory that will be revealed to us." Romans 8. We have the hope of eternity with God.

UPDATE: Our precious boy, Job Wilson Kemp passed away at 4:29 this morning.

     He is free to run, play, and sing praises to the Lord forever.

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JAMES> from Hope for James
James was three years old when he was diagnosed with Stage IV  Neuroblastoma.  He went through nine rounds of chemo, stem cell harvesting and transplant, surgery to remove his tumor, radiation on twelve different locations, a clinical trial called CH 14-18, countless blood transfusions.  His first treatment lasted about 1 1/2 years. December 2011 he was declared in remission.  Two years later, the cancer came back and he bravely endured an aggressive treatment called MIGB radiation therapy in February 2014.  UPDATE:  October 2018  current treatment was not working and tumors in skull and chest increased in size. A biopsy will be done on one of the tumors to see if there is targeted treatment available.

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JACOB >

Jacob is a very loving, caring and generous 15 old young man who is a high school freshman this year. Jacob is a normal teenager whose interests include golf, archery and spending time with his family.  The only difference is that Jacob was diagnosed with a brain tumor at the age of 9.  In February 2013, at the age of 10, Jacob endured a 7 hour surgery which successfully removed a grade 1 Gangliogliomas tumor. In March 2017,  MRI's showed a tumor was growing again.   Due to the location of this tumor, the surgeon recommended a new form of chemo, rather than removal, which would be too risky due to the location of this tumor. In April after 11 months of chemo meds Jacob had an MRI which showed little change in his brain tumor.  The doctor has decided to give Jacob a break from the chemo for 3 months!

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KAHUENA

Kahuena was diagnosed with Rhabdomyosarcoma cancer when he was 4 years old.  He won the battle two times but the cancer has come back and is in his lung and liver for round 3. He is now 6 and will be 7 in May.  Living up to his last name, he is a true warrior.   His family has had to move from Maui to Oahu, then to Reno, to be closer to the pediatric oncologists in Oakland. They have exhausted all options and at this point unless there is a miracle he is terminal and won't be here much longer.  His family wanted to celebrate Christmas early so Maleree went shopping for Kahuena in time for the family’s heaven-is-beautiful themed celebration complete with angel wings and halos. 

Kahuena passed on December 11, 2017

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KINGSLEY >
On April 3rd, 2014 Kingsley was diagnosed with
Juvenile Pilocylic Astrocytoma (JPA) when he was five years old.  After treatment, he is doing well.

 
 

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KLYDE > As told by Mom
In January of 2016 little Klyde was diagnosed with a cancer by the name AT/RT which is a rare childhood cancer. He was life flighted to Portland to undergo brain surgery to remove the tumor he had.  He then began chemotherapy/ radiation treatment following his surgery. 
The affects of chemo have left him with loss of hearing and other weaknesses that he is currently rebuilding. His MRI's show he is cancer-free now and he is getting stronger everyday.

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LEXIE >
18 year old Lexie was diagnosed with Hodgkins Lymphoma during her senior year and is scheduled for eight rounds of chemotherapy.  She actively continued all her high school sports involvements during these treatments.  What a champ!

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UPDATE:  Lexie completed her chemo regimen February 2020!

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MADDIE >
Maddie was only six years old when diagnosed with Stage 4 Ewing's Sarcoma.  She fought hard through 14 rounds of chemo, administered every other week.  She also had surgery in November 2018.  The following year more tumors appeared next to the lumbar and rib area and she fought through a brain infection that was ultimately removed through surgery, with more chemo and radiation.  She is  experiencing a lot of pain that is difficult to control through medication. UPDATE:  God gathered up Maddie in His arms
and brought her home December 15, 2019.

 

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MIKEY >
November 2017, Mikey was just two and a half years old when he was diagnosed with Acute Lymphoblastic Leukemia.  After a successful, innovative Car-T cell therapy treatment, he went through a grueling bone marrow transplant and was in remission.  But in December 2019 he relapsed and is now undergoing a harsh chemo regimen hoping to get his body into remission in order to receive another bone marrow transplant. UPDATE:  "Mikey passed away into the arms of Jesus."  October 9, 2020. Be at peace little hero.  You fought so long and hard.  Now it's time to be free and play.

 
 

 

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OTTO >
On February 8, 2018 Otto was 5 years old when he was diagnosed with Ewings Sarcoma Cancer.  Ewing (YOO-ing) sarcoma is a rare type of cancer that occurs in bones or in the soft tissue around the bones, which can cause bone pain.  It was first discovered on his spine.  His treatment included chemo and radiation. UPDATE:   January 2019, Otto finished all treatment and his scans are clear!

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PAISLEY >

After being sent to UC Davis in CA her family received news in April 2015 when Paislee was just 2 years old. The MRI showed a tumor in the center of her brain. It is touching her pituitary gland and brain stem. After a biopsy, it was determined it is cancer called Juvenile Pilocylic Astrocytoma (JPA) and cannot be removed.  Because she was only 26 lbs doctors decided weekly chemo treatments for 18 months would be the best option with MRI scans every 3 months.  After 10 weeks the tumor showed no signs of growth, and although it had devastating effects she eventually recovered. But on October 2017, her MRI showed growth in all directions.  Once again, 6 year old Paislee had surgery to install a port and has started weekly chemo for the next 12-18 months.

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RAYCE >from family FB pages

 In February 2018, Rayce battled Burkitt's Lymphoma Cancer.  This type of cancer originates in cells of the immune system and is the most common type of non-Hodgkin lymphoma in children.  Diagnosis was Stage 1 with seven weeks chemo and 95% curable. He went through surgery to remove lymph nodes and 8 rounds of chemo with his last one in May 2018.

UPDATE:  The family reports Rayce is doing well.

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 RYDER > From Ryder's Mom/gofundme site

 December 2019, Ryder was very ill with a swollen spleen.  We had an MRI and they said they found cancer.  She was rushed that night to the cancer center. She is so beyond brave. Chemo was so hard on her little body, with nerve pain in her legs, mouth sores and nausea.  Losing her hair was so hard on her.  Because this is a high risk lymphoma, treatment needed to be intense. March 2020: After a very intense time at the hospital again, Ryder and Mom were able to return to their home. Ryder underwent tests and swabs and transfusions of blood and platelets to try and find out why she was so very, very ill and in great pain. Her tests returned negative but the transfusions brought her positive and good numbers up again, allowing her a brief respite at her own home until she begins the radiation treatments. For now the chemotherapy is being halted because her tiny, fragile body cannot endure any more. The long-term effects of the radiation and the chemotherapy on Ryder we won't know until later, but they can do much harm. There is no choice though, Ryder's cancer had to be addressed aggressively and intensely in order to stop the cancer. The mass inside Ryder's darling little chest is a very serious thing that has to be attended to and diminished in order to give her a real fighting chance against this cancer. It's situated between her heart and her lungs, pressing on both of them.

May 24 2020 Ryder is done with radiation and chemo. We are cancer free!

September 202 new cancer growth was detected.

 

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4 year old Scotty was diagnosed with DIPG brain cancer on November 20, 2018.  Diffuse intrinsic pontine gliomas (DIPG) are highly aggressive and difficult to treat brain tumors found at the base of the brain. They are glial tumors, meaning they arise from the brain's glial tissue — tissue made up of cells that help support and protect the brain's neurons.  It is said to be incurable. This cancer is also said to be rare, but more and more children are dying from it.  Mom is focusing on providing the best chance for Scotty to have a normal, carefree childhood for as long as he could hold on.  UPDATE:  On June 11, 2019 Scotty became free from this dreadful disease.
 

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THOMAS >  From  Thomas' Mom 

Thomas was a typical 13 year old boy playing football when he started complaining about back pain. I took him to the doctor and they said it was a muscle strain. I then noticed he was dropping weight like crazy.  He then complained of side pain so I took him in and they said it was a kidney stone. Two days later he couldn't walk across the living room so I rushed him in. They did blood tests that showed cancer, the worst words a mother could hear.  His CT showed many lesions, so they rushed him to Portland, where he was later diagnosed with ARMS, a rare muscle cancer that worked its way into his bones where it spread throughout his body.  This is very hard for me to talk about.  We are only 6 months into this. I never thought one of my baby's would have to go on a journey of fighting for their life. He's such a sweet boy, so empathetic and heroic.

 

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WYATT > From  Warriors for Wyatt / Wyatt's Mom

In May 2017, we heard the words every parent dreads “Your child has cancer.” Over the next several weeks and one surgery later we discovered our sweet, eight year old boy has stage two cancer in his brain stem. Wyatt's type of cancer is only the second case in the world and because of it’s location and size, it is inoperable. There is no standard form of treatment for Wyatt’s rare cancer but his doctors feel chemotherapy is currently his only option.  His cancer will never go away and the goal of treatment is to make it dormant. He came close to dying twice, the last time in 2019.   He is no longer wheelchair bound but  will continue to have PT for a long time.  He has a long road ahead, but Wyatt is a fighter! UPDATE: 2019  Wyatt had his second craniotomy and six weeks of radiation.

The video below shows Wyatt ringing the bell after treatment was completed. 

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