Member of the “club” nobody wants to be in
Nov 26th. 2019 Update– Jack Callahan spent his 4th birthday in Philadelphia Ronald McDonald House, but fortunately, that week he was out of the hospital. He is back in now and on Nov 11th he received his 3 course of stem cell treatments and high dose chemo therapy. He will remain in the hospital with limited visitation for the remainder of the year. The doctors are hoping this is the last of the stem cell treatment and it had killed all of the yolk cancer cells. Like most cancer treatments they have side effects. One of the ones from the chemo they are using is hearing loss. They are keeping an eye on that as he as been asking “what” more often. In the new year, the plan is for Jack to receive 33 fractions of radiation to the original tumor site in his pelvis. This will entail daily radiation and anesthesia for 6 to 7 weeks. Jack has been a trooper through this and passed each part with flying colors, but he has a long haul ahead of him. Emily, Mike, Jack and family sure can use your prayers.
Monday night marked Jack’s 114th overnight stay in a hospital in 2019. Despite this, we have so many things to appreciate during this week of gratitude. Here is a quick update on where things stand and what we are thankful for.
First, Jack is nearing discharge from his third round of high dose chemo with stem cell transplant. He held up well once again, with only a couple rough days of mucositis, pain, and fever. His blood counts (hemoglobin, platelets, and infection fighting neutrophils) have stabilized, which means he needs blood products less frequently. We can leave once he can go 3 days without a blood or platelet transfusion.
Second, Jack is doing well enough that he’s getting his broviac (central line) removed tomorrow. He will continue to have a central line port under his skin on the right side of his chest. But the broviac that protrudes from the left side of his chest will come out first thing in the morning. We are so happy that we won’t need to worry about flushing it and keeping it clean while we are out of the hospital.
Third, we’ve also learned that Jack’s cancer indicator in his blood (AFP) is once again in a normal range, and the lowest it has been since diagnosis! We are still anxious it could rise again (and always will be…part of our new reality), but this was some of the best news we’ve received during the journey. The high dose chemo would appear to be working.
There is still a lot of work to be done though. We’ve learned that cancer in many ways is a long hard slog. The one disappointing update is that Jack’s audiology exam yesterday demonstrated that he has mild to moderately severe hearing loss, and that it’s permanent and may worsen. Today he was fitted for hearing aides, which should arrive in 3 to 4 weeks. We knew hearing loss was an expected complication of large amounts of platinum chemo therapies, but we still felt sad to get this news.
Up next are a couple of scans in December, followed by 6 weeks of daily radiation starting in early January. We will remain in Philly until his radiation is complete. The radiation beams will be aimed into his pelvis, around the location of the primary tumor. The goal of these treatments is to prevent the cancer from ever coming back.
While there is work to be done, we are going to appreciate and give thanks for all that’s been accomplished. We will spend Thanksgiving with my family here in Philly. We plan to celebrate Friday, with the assumption Jack will get discharged on Thanksgiving Day. And we have a long and growing list of people and things for which to give thanks, particularly you all – our friends and family that have our backs each day. We are also so thankful for the many doctors, nurses, social workers, Ronald McDonald House staff, and others that have made Philly feel comfortable for us. We are doing this, and it’s only possible because of all of you!
With a million thank yous…..
Mike, Emily, and Jack
Letter from Emily Callahan (Aug 2019)- Childhood cancer is the club that no family ever applies to join. For years Mike and I would see commercials for St. Jude’s Children’s Hospital on TV and say, “Wow, I just can’t imagine what it would be like to deal with that.” On February 6th 2019 our family joined this “club” and began to find out just what the journey of childhood cancer was like.
Jack Patrick Callahan (he tells you the full thing when you ask him his name) is a three-year old boy full of energy, life and curiosity. He loves basketball, swimming, super heroes, Santa Claus, the Tar Heels, mascots of all kinds and Paris! Yes, I said Paris. J
In late January of this year Jack began complaining of pain in his leg. He had not been sleeping well. He’d been waking up every hour or so complaining of pain and that afternoon at school he refused to walk. Over the weekend his pain worsened even with a strict regimen of Tylenol and ibuprofen every few hours. By Sunday he had essentially stopped walking.
On Monday, February 4th the pediatrician got him an appointment with a pediatric orthopedist at UVA Children’s. That lead to an eventual admission into the ER for imaging and tests, which turned into an admission to the hospital. Tuesday the 5th Jack had an MRI to assess his leg, which turned up a tumor in his pelvis. Wednesday we were told the tumor was malignant and had metastasized to his lungs. Friday, we received the final diagnosis of an extragonadal yolk sac germ cell tumor. Saturday, February 9th, less than a week into this journey, Jack received a port and we began chemotherapy.
Jack went through four 21-day cycles of chemotherapy at UVA Children’s Hospital. Initial indications were that the tumor had responded well. It went from a mass the size of a grapefruit to the size of a lime. As we were preparing for our next steps, surgery, it was discovered that Jack’s cancer was again active.
We consulted with experts at UVA, The Children’s Hospital of Philadelphia (CHOP) and Dana Farber in Boston. Within the course of one week a new plan was developed for Jack and we decamped to Philadelphia to begin his next round of treatment.
This next phase of treatment will involve two rounds of chemotherapy, surgery, and two rounds of high dose chemotherapy with stem cell transplant. The high dose chemotherapy and stem cell transplant will involve 30-day hospital stays.
We have just begun treatments at CHOP and if all goes according to plan, we will be finished with treatment in the beginning of November. Jack will likely spend his fourth birthday and Halloween (one of his favorite holidays) in the hospital. Our family will also spend the majority of this time away from our home. We feel fortunate to have access to amazing care and the opportunity to eradicate this disease within him. But, we look forward to the day when this disease does not take away years from families and kids like Jack don’t have to spend their birthdays and holidays inside hospital walls.
We are incredibly grateful for all of what St. Baldrick’s does and for each of your efforts to raise awareness about childhood cancer and the advances that still need to be made! Thank you from the depths of our hearts.
~Emily
#jackattack
#aintnobodygottimeforcancer