Emmett is hilarious. Hi is usually smiling, and just a warm person. He gives the best hugs, has sweet dimples and gives winks to his nurses. He has the sweetest giggle. He loves hot wheels, paw patrol, Cars, and Blaze the monster machines.
We went in for his two year check up at the doctor. He was severely anemic and hadn’t gained any weight in 6 months. He had been lethargic and crabby. Testing revealed he had Neuroblastoma. Then over the course of a month, his tumor grew way bigger. And he wasn’t sleeping. He needed to be held constantly and had a hard time breathing.
He went through 3 rounds of chemo, 1 (16) hour surgery & 2 (5) hour surgeries to remove the tumor the size of a cantaloupe out of his belly. His stomach was open for a month and he was intubated. He also had one kidney removed. He was in ICU for 16 weeks straight. He then did dialysis and 5 rounds of immunotherapy. Now we are moving on to stem cell transplant.
Emmett is so brave. And so quick to recover from everything that happens. As soon as even a dressing change is over (he absolutely hates them) he sits up and says thank you to the people who did the change and gives hugs. He knows no one wants to be doing anything to him and he makes sure to say thank you because he knows it helps.
His siblings and dad are still in Alaska while Emmett and I are in Seattle. We have been here for 8 months and are going to be here at least 8 more. Travel back and forth to Seattle for his dad and the kids is so expensive so the visits are far apart.
It’s been an entire decade since Kaden was diagnosed with Neuroblastoma. That’s amazing… 10 years since that terrible nightmare, called cancer entered our lives. Today, to look at him, you would never know. He’s a growing, thriving 13 yr old teenager with a bottomless pit stomach. We’re definitely feeling blessed!
He’s being followed up by Johns Hopkins Cardiology department. In August 2017, they said he was boarder-line long QT heart syndrome, then on his 6 month follow-up in February, the cardiologist said it has gone away, but he was now borderline high blood pressure. We’re blaming some of that on his “intense” Xbox gaming, plus his diet and not much exercise post-football season/pre-baseball.
We are forever thankful to still have him in our lives today given that he had a 40-60% chance of surviving past 5 yrs. He is a 10 year survivor, but we live with PTSD not knowing if every little ache, pain, bruise, swelling, etc is a sign of relapse.
He is a very thoughtful, warm-hearted and caring soul. He’s wise beyond his years. Here’s to 10 years as a survivor of Stage IV High-Risk Neuroblastoma cancer AND TO MANY MORE!
Solomon was diagnosed with Stage 3 Neuroblastoma a week after his second birthday last September (2017). He’s currently undergoing treatment but has completed chemotherapy, surgery, and radiation treatment. As of this past April he’s officially in remission.
Solomon is almost 3 years old and plans to return to preschool this fall. Solomon is our man child because his mannerisms are a bit mature for his age at 2.5 yrs old. Goofy antics makes him laugh.Solomon loves to be outdoors, playing soccer, jumping in puddles, hiking trails, and kayaking with his mother. If he must be indoors, he enjoys playing with his cars, coloring, tracing his numbers and letters, wrestling with dad, and telling his 1 year old baby sister what to do, whom he loves but is not yet quite keen on sharing the attention.
As of this summer, Solomon will complete his cancer treatment!
Rylan is a shy but sweet boy. He is very energetic and is always happy. He loves Elmo, dinosaurs and animals especially elephants.
When I was 36 weeks pregnant a co-worker saw Rylan’s tumor in utero. Once he was born his pediatrician ordered an ultrasound to see if the tumor had gone away. Since it was still there and had gotten bigger they ordered a comparison 2 weeks later. The day before he turn 1 month old we took him for the comparison. On our way home we got a call that Rylan had to be admitted so they could run some more testing. There we spent a whole week of testing from MRI’s, CT’s, MIBG, bone marrow, bone scan & biopsies. We then got the worst news of our lives that our little boy had high risk neuroblastoma.
Rylan went through a full year of treatment. Started chemo at 1 1/2 months old. He had a port placement, 6 cycles of chemo, tumor resection at 5 months old which lead to having his left kidney removed, 1 stem cell transplant, 20 radiation treatments and 5 cycles of immunotherapy.
Our son’s diagnosis has effected us mentally and financially. It has shown us strength and faith that we thought we never had. It taught us how to appreciate everyday and be grateful for the little things in life. Tomorrow is never promised so live everyday like it’s your last and enjoy every moment with your family. He is a year and half off of treatment and going stronger then ever!
When Rafa (Rafael) was 16 months old, the area between his eyebrows became very swollen and mis-shapen. I took him in to see a pediatrician and they said he has a sinus infection. After a week of antibiotics it was no better so I called the office and insisted on seeing his primary pediatrician. We went in and she ordered a CT scan. We were told that Rafa had a tumor and were told to leave for the Children’s Hospital in Denver (we lived in Nebraska at the time) immediately. Upon arriving the doctors suspected he had a cancer called neuroblastoma. Subsequent testing and biopsies confirmed that he has Stage 4 High Risk Neuroblastoma.
Rafa having cancer has affected our family in many ways. We relocated from Nebraska to Colorado for his treatment and decided to stay here in Denver. Denver is a lot more expensive than Nebraska so we don’t have as much money as we used to. Our daughter Reina, who had recently started preschool, had to stop going because we didn’t want her bringing home germs and viruses to her brother, who throughout most of his treatment had no immune system. We had no permanent home for the first year and a half. We stayed at the Ronald McDonald House for 7 months at a hotel for a few months and then at a place that provides apartments for families like ours for 6 months. Once Rafa’s treatment were drawing to a close we left Brent’s Place and got an apartment. Rafa is in speech and physical therapy. While he’s been off treatment since August 2017, he continues to be affected by it. Due to complications from radiation his body does not make hemoglobin and he’s been receiving blood transfusions every three weeks since November 2017.
My son never ceases to amaze me. He has handled treatment amazingly well. Neuroblastoma has the longest and most brutal treatments of all childhood cancers. His strength, resilience, courage, and positivity humbles me.
I am so grateful for the Gold Hope Project and our amazing photographer Amy Liehr. I had been wanting to have family pictures taken but we haven’t had spare money. I appreciate you all so much!
Kaleb loves video games, Minecraft and MARIO are his favorites. He also loves playing outside, swimming and jumping on the trampoline. He is such a sweet child and most always has a smile.
Kaleb was diagnosed with Neuroblastoma in July 2014 at the age of 2. He had surgery, high dose chemo, radiation, stem cell transplant, and immunotherapy. He was in remission for 29 months and relapsed in June 2017.
Once again our family was devastated and he had to endure surgery, high dose chemo, radiation and immunotherapy. He is currently in remission and is taking an oral chemo. We have to travel out of state for the medication and doctor visits every 2 weeks.
Kaleb, who is now 6 years old, has a brother, Kaeden, that is 10 years old and a sister, Kynslee, who is 4 years old. Kaleb has been unable to attend kindergarten and his mother does homebound schooling with him. Medical, travel and financial issues are always difficult for our family and other families like ours. Kaleb’s father and I recently divorced and that’s been an extra obstacle to endure. The kids and I are happy and we will handle whatever comes our way.
