Tripp’s Story

Site created on August 28, 2021

Tripp was diagnosed with Neuroblastoma, a form of pediatric cancer, on July 17, 2020. The week prior to his diagnosis, his stomach was bloated, he wasn't urinating/pooping as often, and he was getting increasingly fussy as the days wore on. We called the pediatrician and they immediately sent us to our local hospital for x-rays and an ultrasound. While there, the ultrasound revealed a small lesion (aka tumor) on his liver. Kurt and Tripp were immediately ambulanced to CHOP. I met them down there and Tripp went through a 3+ hour ultrasound to figure out what was going on. The next day, a team of doctors came in and broke the news that the ultrasound had revealed four masses in his abdomen, the largest one being the size of a softball and the reason why his stomach was large and firm. During that initial diagnosis we spent two weeks in the PICU (Pediatric Intensive Care Unit), one of those weeks where Tripp was on the ventilator, and four weeks total in the hospital. We left with hope, and we left with a plan.


Tripp went through Intermediate Risk Treatment, which included eight (8) rounds of chemotherapy, as well as surgery to remove as much of the tumor as possible. Our surgeon was able to remove the primary tumor, as well as Tripp's adrenal gland, and some of the other tumors in the area. We were all pleased with the surgery results. In February 2021, Tripp had scans to check the status of the cancer and determine our next steps. He had a few small tumors left in his abdomen, but the MRI showed that they were in the process of dying off - Tripp was declared in remission.


Fast forward to April 4, 2021. Tripp woke up and just wasn't himself. Our first clue was that he slept until 8:00 a.m. - this isn't typical for him, so we thought perhaps he wasn't feeling well. Then he ate a cinnamon roll and threw up the entire thing, and fell asleep again at 9:30 and slept for another 90 minutes. Again, this isn't typical for Tripp, so we called our Oncology Team and they told us if our parent senses were tingling and we felt that something wasn't right, to bring him to the ER. I'm glad we did because even though he perked up a bit, when Kurt and Tripp arrived at the ER, he started to deteriorate. We consulted with Neurosurgery and they wanted a CT of his head because his symptoms were concerning. The CT revealed a 3cm mass at the back left of his skull. At this point we weren't sure if it was Neuroblastoma of something else, but pathology has since determined it's the same makeup as his previous tumors. Tripp had emergency surgery to place a shunt (drain) at the top of his head to help relieve some of the pressure. He then underwent a 5 hour MRI of his brain so that the Neurosurgery and Oncology teams could get a better picture of what they were looking at. The next day Tripp had emergency surgery to remove the mass on his brain. He was taken to the PICU to recover for a week. This time is extremely blurry for me, but I think we spent two (2) weeks in the hospital. He was started on High Risk Treatment, which includes higher doses of the chemotherapy meds - some he has had before and some that are brand new. Following the surgery on his head, Tripp had 12 sessions of proton therapy and scans since then have shown that his brain is CLEAR.


High Risk Treatment also includes Tandem Stem Cell Rescue (Transplant), Surgery (if needed - Tripp did not need to have surgery), Radiation, and Immunotherapy. Right now, we have just started our first of two Stem Cell Transplants. Transplants require hospitalization for at least 4-6 weeks, with a 4-5 week break in between. We anticipate starting radiation and immunotherapy in early 2022. Thank you for reading and following along with Tripp's journey!

Newest Update

Journal entry by Sarah Ravenfeld

Hello, friends! I always have it on my to-do list to update Caring Bridget more frequently, but it always seems to get pushed to the bottom of my list. We have been having lots of fun since the last update - summer was full of fun adventures, a new baby brother, a fourth birthday celebration, and lots of visits with family and friends.

SCANS
Tripp's scans in May, July, and October were CLEAR and we continue to be thankful for how well he is doing. Since his scans in July were a year off-treatment, he was cleared from his CHOP team to switch to scans every six months! That said, MSK, as part of the vaccine trial, requires scans every three months for the first two years of the trial. Thankfully, we are able to have the scans done at CHOP, so we don't have to travel to MSK. Please continue to pray for Tripp and our family.

VACCINE TRIAL/BONE MARROWS
Tripp received his seventh shot in November. This round gave us a bit of excitement, as Tripp broke out into full body rash/hives after receiving his first GMCSF shot. Everything was fine, but he and Kurt did head down to CHOP ER after we spoke with the team at MSK. After speaking with MSK, they are pulling Tripp off of the GMCSF arm of the trial. This type of reaction is not uncommon, especially in kids who have received a lot of the GMCSF. It's hard to believe we're almost done with the trial-we go twice next year, then once at the end of 2025.

Tripp had his final bone marrow biopsy of the clinical trial in November. We're happy to share that his results came back clear.

HEARING
Tripp had an Audiology appointment in April and there was some fluid build-up, as well as multiple ear infections, so he was scheduled for ear tubes! He got his tubes in May and we had a follow-up Audiology visit in early October. No fluid in his ear and his hearing was slightly better than his April appointment. His hearing isn't improving, rather, coming back to baseline since there isn't fluid in his ears to block anything. Overall, his hearing loss is stable, which is better than seeing it get progressively worse. He's wearing his super ears more frequently, which is great! His speech is improving and he talks all day long. We love hearing Tripp and Gracie talk, as well as hearing them chat with baby brother.

Tripp is doing lots of growing and loves being a big brother. He's an avid Philadelphia sports fan, but his favorites are the Union, Phillies, and Eagles. We are so proud of our best buddy!

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