Over the weekend, Brandon’s symptoms began to worsen. His parents knew something was not right with him so they turned to the internet for answers. Their search, as frightening as the suggestions were, led them to Joe DiMaggio Children’s Hospital on Monday, March 7th 2011 for a CT. The scan revealed a 4cm mass on Brandon’s brain stem. He was airlifted to Miami Children’s Hospital and underwent a four hour MRI of his brain and spine. A neurosurgeon called Brandon’s family into a conference room the following day and gave them a diagnosis. Brandon has a malignant brain tumor known as DIPG.

Brandon was treated with six weeks of radiation at St Jude Children’s Research Hospital  and his tumor shrunk by thiry percent. However, by the end of September 2011, he began to exhibit symptoms again and an MRI showed that his tumor was in progression. Brandon underwent another 12 days of radiation beginning in December of 2011.

A follow up MRI in February showed that Brandon’s tumor continued to spread. His symptoms have also continued to get worse.  Brandon has stopped walking and can no longer move his left arm. It is also difficult for him to sit up at times. Now he is enrolled with palliative care. Palliative care  is focused on providing patients with relief from their symptoms, pain, and stress—whatever the diagnosis.

You can follow Brandon’s journey and leave words of encouragement by visiting his CaringBridge page.

In the middle of May, Collin woke up with a huge blood pocket on his upper lip. Kathleen took him to his pediatrician and demanded that a doctor look at him. Finally, after hours of numerous pokes and tests, and of course ice cream to reward Collin’s amazing bravery through the whole ordeal, the pediatrician came to the Henry’s house. Collin was diagnosed with Acute Lymphoblastic Leukemia. His mother recalls the day he was diagnosed; “The only way I can describe being told your child has cancer is a combination sucker punch and out of body experience.”

They left for UNC about an hour later to begin treatment. Collin went right into remission with the first round of chemo, but with Leukemia, they know they have to treat kids long term. In boys it is a 3 1/2 year treatment plan. Once he was in the maintenance (long term chemo) phase he received spinal taps every 3 months. They would draw out spinal fluid and replace it with the chemotherapy drug Methotrexate.

Superheroes do not just fight for themselves either, they often have to fight for others. Collin’s big brother, Patrick, was diagnosed in October 2010 with stage II Hepatoblastoma. Collin was his biggest cheerleader! Patrick went into remission and finished treatment in February 2011. And then all was quiet in the Henry house for a short period of time, from about March until June.

In early June, Collin received his last routine spinal tap with Methotrexate, and test results that should have taken only 24 to 48 hours to get back, were taking forever. And while nobody ever let on that anything was wrong, his momma knew! The following Monday, his Oncologist called to report that there were Leukemia cells in his spinal fluid. Not only had he not had any cells in his spinal fluid before that day, but he had none in his body, in his bone marrow, anywhere, since June 2008. This one cell is the perfect example of why they give Leukemia patients chemotherapy for so long and why they give the preservative free Methotrexate into the spinal fluid as a prophylactic measure. After 3 years of constant chemotherapy, Collin was showing signs of an impending relapse.

Just a month later, in July, a spinal tap showed no cancer cells. The Henrys were cautiously optimistic with the good news. Collin continued his chemo and, only 2 weeks after his final dose, another spinal tap revealed 12 cancer cells. The doctors called this an isolated central nervous system relapse.

Collin is currently on a new treatment protocol using Methotrexate in high doses, along with at least 10 other drugs. He still has a minimum of six months of treatment with this protocol. The big problem now is that Methotrexate, and a number of Collin’s other medications, are in dangerously short supply in the United States.  Methotrexate is crucial in the treatment of Leukemia. With it, nearly 90% of patients reach and maintain remission for over five years. Without it, though, the numbers are much lower.

You can follow Collin’s heroic journey by visiting his CaringBridge page.

Photos courtesy of Flashes of Hope

He started off the post by asking who would financially benefit from sale of the dolls, a fair question to ask. The intellectual dishonesty then crept in as he lamented the troubles that too much awareness can bring citing the fear women now have of breast cancer. Then he flew off the rails with this gem “Childhood cancer is exceedingly rare.”

First of all, what qualifies as exceedingly rare? Considering that the author has three children I find that statement to be emotionally disconnected at best. On Wikipedia I would have tagged this as [citation needed]. Secondly, thanks for confirming the ACS’s lack of relevance in this area.

So if I read correctly, we don’t need more awareness for childhood cancer because it is “exceedingly rare” what we need are more donations to the ACS, less than 1% of which will go to childhood cancer? Got it.

After an MRI and a biopsy of her tumor, Hannah was diagnosed with Osteosarcoma. A few days after Christmas, Hannah had surgery to place her pic line and to remove two nodules from her right lung. The surgery turned out to be more extensive than expected and it involved deflating her lung. Hannah had a difficult recovery from surgery because of the chest tube and a malfunction with her pain medications. Once the chest tube was removed Hannah was doing much better and was able to go home to celebrate New Year’s with her family.

Hannah started chemotherapy on January 5th and did as well as can be expected. The doctors seem to be controlling her nausea well with medication. The combination of medicine she is taking does make her very sleepy. For the most part, Hannah is in good spirits while she is awake and is enjoying her favorite Disney movies and shows.

You can follow Hannah’s journey by visiting her CaringBride website.

The doctors found a large tumor and Charlotte was diagnosed with Neuroblastoma. Over the course of two and a half years, she underwent chemotherapy, surgery, and two stem cell transplants.  Recent scans show that nearly every bone in Charlotte’s body is riddled with neuroblastoma. Her counts are too low to have more chemotherapy at this time. Instead, the doctors are going to do MIBG therapy in the hope that they can decrease the amount of disease.

You can visit Charlotte’s CarePages to follow her journey.

Since she was diagnosed, Caitlin has undergone two brain surgeries, two rounds of chemotherapy, and one round of radiation. She began having seizures after her second surgery. Caitlin is completely paralyzed on her right side and has lost most of her ability to see. Over the last few weeks, she has had difficulty swallowing and communicating. Now the nurses are having trouble keeping Caitlin’s oxygen saturation levels high enough. They believe Caitlin is nearing the end of her battle against this cancer.

You can visit Caitlin’s facebook page to leave prayers for Caitlin and her family.

On September 3rd, 2010, Isaiah was not feeling well and he stayed home from school.  His mom, Cheryl Alonso, took him to the doctor. In true Isaiah fashion, he was doing Power Ranger kicks in the office. Cheryl was told that it was just a cough and that Isaiah was probably suffering from allergies. “He’ll be fine,” the doctor said. Hours later, Isaiah ran into his parent’s room and screamed before collapsing on their bedroom floor. Isaiah was rushed to the hospital in a helicopter.

Isaiah’s Aunt, Sue Axelrod, said “When Cheryl called me very late that night; I immediately knew something was very wrong. Isaiah had been without oxygen and, although he received CPR almost immediately, he didn’t regain consciousness and they weren’t sure if he would make it.” Sue dropped what she was doing and jumped in the car to make the six hour drive to Kentucky. “That drive was one of the most difficult rides of my life. About an hour into my trip, I got the devastating news. Isaiah was diagnosed with cancer. They didn’t know what kind of cancer he had at that point, but they did know that he had a huge tumor pressing on his airway. I also learned that they were afraid Isaiah may have suffered brain damage from lack of oxygen. Needless to say, I cried the whole way there. Cancer? Brain damage? How does this happen to a seemingly healthy first grader?”

After many tests, Isaiah was diagnosed with T-cell Lymphoma, which is a type of non-Hodgkin’s Lymphoma. Most cases of lymphoblastic lymphoma usually become evident with a mass in the chest and swollen lymph nodes.  Isaiah’s tumor grew very large and very fast. There were no prior symptoms, besides the cough, but Isaiah suffered brain damage as a result of complications from the cancer. Sue, along with Isaiah’s parents, Cheryl and Vinnie, stayed by his side and hoped for a miracle.  Isaiah never regained consciousness and took his last breath a week later, in his mother’s arms. 

Shortly after Isaiah’s untimely, and unexpected, passing his family created the Isaiah Alonso Foundation to help lighten the financial strain on families that are dealing with the same kind of crisis.

Childhood cancers would be more treatable if they were diagnosed earlier. Sadly, many cases are like Isaiah’s where their cancer is misdiagnosed and attributed to a common childhood complaint or behavioral problem. Children frequently have a more advanced stage of cancer when they are diagnosed. About eighty percent of children show that cancer has spread to distant sites in the body.

On August 18th, Hunter was diagnosed with Retinoblastoma. They flew to Philadelphia to seek the opinion of the top Pediatric Ophthalmology specialists. The doctors felt it would be best to remove Hunter’s right eye since there was only a 30% chance that chemotherapy alone would preserve the eye. On August 24th, Hunter underwent surgery. It will take about two weeks to find out if he needs to have any chemotherapy, but the cancer has not spread to his blood or bones. Hunter’s eye will be sewn shut and he will wear a bandage for the first week. After six weeks, he will receive a prosthetic eye.

Hunter has been experiencing quite a bit of pain since his surgery and he does not want to open his good eye. Hunter was released from the hospital and his family returned home last night.

You can visit Hunter’s CaringBridge page to keep up with his journey.

Until July, the doctors and Bo’s parents had put off having scans done because Bo was still healing. The new MRI showed that the areas of concern were the same, if not a little smaller. A lumbar puncture in August showed active cancer cells and a CT scan revealed new nodules in his liver and spine. The Medulloblastoma is spreading through Bo’s little body. His body is not strong enough, at the moment, for any more treatment.

On Friday, Bo is going to Disney World for his Make-A-Wish trip. His family is also having a big party for him when they return from the trip. Visit Bo’s CaringBridge page to keep up with him.

Over the last month, Karrie has been experiencing a lot of pain in different areas throughout her body. She had pain in her leg, ankle, jaw and ear. But the pain in her arm and shoulder was to the point that it was causing her to scream out in pain. After having her pain management team up her doses multiple times, Karrie had a CT. The scan showed lesions in the right and left scapulas, front top of the spinal cord, top of both lungs, and two additional bumps on back of her head. 

Karrie’s doctor said that, with the increase in disease, there is not much that can be done to stop the Neuroblastoma. She recommended pain medication to keep Karrie comfortable and spot radiation.

Visit Karrie’s blog to follow her journey.