Brody has been our surprise miracle from the beginning; after using fertility medications to have our first two boys we were delighted to have Brody with no help at all. He was the easiest and happiest baby! November 6th, 2016 we were at my parents taking some family pictures; Brody was his happy, smiley self but then he vomited. We thought he had the stomach flu so we returned home where he threw up again and then went unresponsive. He was rushed to the local ER where they thought he had diabetes. When we chose to be transferred to Rochester they requested a head CT prior to transport. Before we got the results the helicopter was on its way. Brody had a baseball sized tumor in his precious little brain. Our lives would be changed forever! The neurosurgeon at Mayo was able to remove the whole tumor, but feared Brody may not be the same happy little guy he once was. A few days later we learned that Brody had a very rare, aggressive and hard to treat brain cancer known as AT/RT. Several weeks went by before Brody started interacting with us and he even got his smile back! At 10 months old he was like a 25 pound newborn, he had to relearn how to hold his own head up, sit, crawl and even drink out of a bottle again. In June, 2017 Brody completed the primary treatment protocol, and we would scan in August to see if it worked. August was a difficult month; we learned that Brody “failed” the treatment course. He had a new spot on his spine and worsening disease on the brain. We were crushed! Because AT/RT is so rare they don’t have many options for treatment. The doctors tell us there is no cure but there is hope. Brody’s little body has had his lifetime dose of radiation and his bone marrow cannot handle anymore high dose chemo. He was started on low-dose, oral chemo and a few other meds in hopes of buying time. In November we scanned again, this scan showed improvement. We will continue to scan every three months to monitor the disease. Today, Brody has endured so much and we are beyond grateful he is still with us. He has had 2 shunt placements, 5 rounds of high dose chemo, 3 stem cell transplants, 6 weeks of Proton Beam Radiation to the entire brain and spine, seizures, 5 port placements, sepsis, C-Diff, several MRI’s, multiple blood and platelet transfusions all while keeping a smile. This boy is so special, he touches hearts and brightens days with his contagious smile and radiant personality.
Throughout this journey we have met some wonderful people, people we never thought we’d meet. We were introduced to Brighter Tomorrows through one of our nurses. She insisted we go to the support group and we are sure glad we did. We enjoy being around others that “get it,” they know what it’s like to be where we are. Some families are just starting their journey, some are in the middle of it, and some have finished; it’s a great resource for questions that only cancer families would know. We recently went to the winter retreat where our boys were able to interact with other cancer families, make lifetime friends and memories they will never forget. ~ Kayla (Brody’s mom)
Josiah (JJ) is a 7 year old boy who started having bloody noses that sometimes lasted up to 1 ½ hours. We scheduled an appointment with an Ears, Nose, and Throat specialist. He ordered lab work after noticing a lot of bruises on JJ’s legs. Kyle, his father, and I only noticed these bruises two days before, but we thought it was because he was a 7 year old boy who was very active. After the results of the lab work were back, the doctor called within 2 hours and told me over the phone they thought it was leukemia. We rushed him to St. Mary’s Hospital emergency room in Rochester where they were ready for us. Josiah was diagnosed the day after his 7th birthday, Sept. 13, 2017, with T-cell Acute Lymphoma Leukemia (ALL).
The doctor’s warned us that the hardest transition would be his first 6 months of treatments, and they were right. We live 1 ½ hours from the Mayo Clinic where we have most of our appointments. These appointment days can be very long, sometimes arriving at 8am and not leaving until 10pm. One of the cancer medications they have to use has caused JJ’s brain waves to slow down. It has caused seizures and at one point he couldn’t walk, talk, or grab onto an object. These are very scary times.
We believe that God has a plan for Josiah & our family. We know that there will be many unexpected situations that will arise. However, we put our faith in God and know that one day JJ will be cancer free and enjoying life like any other kid. Throughout all of this he continues to be a strong little boy who, with God’s help, will fight this battle! Josiah and our family will get through this! Thank you Brighter Tomorrows, for all the love & support you have given us through all this.
Our son Liam Schroeder was diagnosed with an anaplastic ependymoma on 9/19/2017, three days after his 4th birthday. We were hospitalized for observation to treat what we had been told, since August, was a pulled neck muscle. The following day an MRI showed a large tumor around his brain stem and that he had hydrocephalus. He immediately underwent surgery to have an external ventricular drain placed and was admitted into the intensive care unit (ICU). In the ICU we were told that the tumor was cancerous and that there was no other option than to remove it. That Friday he underwent an 8 ½ hour surgery, and praise God, they were able to remove all of it! We were also blessed to hear that is was not in his spinal fluid and that they only needed to radiate the area of the tumor. He was hospitalized for 19 days, at which time the rest of our family was able to stay at the Ronald McDonald House. We continued with outpatient physical therapy, speech therapy, and occupational therapy. He went home with a feeding tube and oxygen. A week after being outpatient he went back in the hospital for a short stay to place a more permanent Gtube for feeding, a MRI and a PICC line.
Liam recently finished 33 treatments of proton beam radiation, and in the second week of January began his first round of chemotherapy. He will be hospitalized for each treatment as well as for low counts. He will undergo an MRI every 3 months to monitor and ensure that it doesn’t come back, as there is a 75% chance that these types of tumors return. But we believe that God has a different plan!
One of the ways we have been able to cope with all of this is because of Brighter Tomorrows. The hospitality of the volunteers have been absolutely incredible. We have gained so much knowledge, support and most importantly lifelong friends. Not just us as parents; but more importantly our kids. ~ Brian, Ashley, Charley, Hunter and Liam Schroeder