Maverick’s Story

20130518-0014-slider-150x150an in the fall of 2012. Our 4-year-old Maverick started complaining that his mouth hurt while we were brushing his teeth. We thought that he had bitten the inside of his mouth and told him it would get better in a couple of days. We kind of dismissed it then, but a couple weeks went by and it was still bothering him-but only when we were brushing. One day I picked him up after school and ‘Nanny’ from his daycare asked me if his cheek looked swollen- it did! It had puffed right up overnight, and there was a small knot inside along his jawline. We made an appointment to see the pediatrician the next day. She concluded that it could possibly be a clogged salivary gland. Mav was put on a ten-day cycle of antibiotics but we were sent to have a CBC to see if anything else was going on. The results that came back weren’t quite right, so about halfway through the antibiotic cycle we went to have another CBC to see if the meds were working. There was no change and his cheek didn’t look any better. At the end of the ten days, Mav’s cheek still looked swollen and the pain from brushing hadn’t receded. At that point since our pediatrician was in Ft. Smith, Arkansas, she sent us straight to Arkansas Children’s Hospital. We didn’t go home to Stigler to pack any bags the four of us headed immediately to the ER in Little Rock. The date was 12-12-12.

We checked into the ER at four o’clock that afternoon. Granny and Papa met us soon after to help with little brother Sawyer, who at that time was only 6 months old. This was all very new to us. We only had to deal with one ear infection when he was a baby so really up until this point in Maverick’s life he had been perfectly healthy. Back in the ER, Maverick had to have an IV inserted into his hand. I think that is when it started to feel like something bad was really happening. I had to go out into the hallway and plug my ears. He was taken back for more blood tests and an X-ray of his cheek. We waited and waited to find out what was wrong. It was such a long night. Eventually, in the wee hours of the morning, Dr. Storm (appropriately named for us I think!) took us to one of the private conference rooms which we soon learned to dread, and told us that a lab tech had chanced another look at Maverick’s blood and had found a ‘blast’- an immature blood cell that the marrow had spit out before it had fully formed. Dr. Storm thought Maverick either had Mono or Leukemia. We prayed for Mono. Finally, Mav was admitted and along with Daddy and Papa was moved up to the Hemotology/Oncology floor. No one under the age of 16 was allowed on that floor due to RSV and flu precautions. So, Sawyer, Granny, and I slept in the waiting room so I could continue breastfeeding.

The next day we met our oncologist and many more tests were done. Eventually we were again pulled into a private room and were told that it wasn’t Leukemia. We were so relieved – and then so crushed all in the span of about ten minutes. It wasn’t Leukemia, but more than likely Neuroblastoma, a word we had never heard before. We learned that Maverick’s treatment would last at least a year and would include: six rounds of chemotherapy, surgery to remove primary tumor, an autologous stem cell transplant, possible radiation, and five rounds of immunotherapy and retinoic acid. After Mav was diagnosed and we learned more about this new part of our lives we were able to understand why he had been waking in the middle of the night. In retrospect, we were able to see that what we thought were night terrors was actually Mav waking in extreme pain because the cancer was everywhere – including his bones. Many things suddenly began to make sense.

Over the course of the next week, we cancelled our family trip to Silver Dollar City and Maverick had his first surgery: a biopsy of the mass inside his jaw and implantation of his infuse-a-port. He also had baseline tests for his heart and his hearing so we could track these for effects of chemo. Because Maverick was at stage 4, our doctors wanted to get chemotherapy underway as soon as possible. After all the initial testing and surgery, and one mad dash back to Little Rock for an MRI (the mass near his spine was concerning), we were able to spend Christmas at home where we were only able to visit with family through the glass front door for fear of germs! During this time, we received a call from our health insurance company saying that Arkansas Children’s Hospital (ACH) was out of network. They did grant us an emergency extension until January 31st since our pediatrician sent us to ACH and we needed to get treatment underway, but this was a VERY stressful time to begin with. The fact that our insurance might not help with the bills never entered our minds. Who cares about the cost when all you want is for your baby to be well?

A few days after Christmas we began round 1 of chemo. We were being told that if we didn’t transfer to an ‘in-network hospital” our insurance would cease payment at the end of January. In the beginning when things are new and many decisions are being made and you see your child going through things that they should never have to, you try to find SOMETHING that you can control. We wanted to stay at ACH because it was the only part of our lives that was stable. Moving to a new place when we weren’t yet comfortable with what was happening to us was scary. Round 2 of chemo went off without a hitch with the question of which hospital still hung in the air. As our January 31st deadline loomed closer and closer, we decided to meet with an oncologist and get a tour of OU Children’s in Oklahoma City. We met Dr. Meyer and the decision was made. He talked to us for an hour and never seemed rushed and to top it all off, Maverick loved him. He is still the only doctor that Mav doesn’t shy away from.

On January 31st, we began round 3 of chemo at our new hospital. This round was the first to make Maverick extremely sick. We actually had to be readmitted for dehydration a few days after we went home because he could not keep anything down. New hospital. Still pretty new to this whole cancer thing. First time seeing Maverick really sick. This was not an easy time. One bright spot here was that the second round of scans that we did when we moved to OU Children’s Hospital (OUCH) showed that the tumors had shrunk significantly in size!

We continued through the next two rounds of chemo battling nausea, dehydration again, and mouth sores. Daddy had to learn how to administer a white blood cell stimulating shot that he had to give each night at home. Maverick didn’t return to day care (which was the hardest for him) and had to miss out on so many things we had previously taken for granted. No more going out to eat. No more visiting the library. No more playing with his favorite cousins. No more Bible class at church. No going ANYWHERE! Josh and I continued to work as much as we could although I don’t think there was a single week that I was able to teach school every day. We were going back to OUCH almost every week for treatments, dehydration, testing and scans, or blood transfusions. We also had to go to the hospital for Mav’s stem cell harvest. In the operating room, he had to have a double lumen catheter inserted into his shoulder and be hooked up to “Mr. Fatty” four days in a row for four hours each! This first go-around, we didn’t get enough stem cells for his transplant so another try was scheduled. The first three days of the second try we were able to barely get enough but we pressed for one more day. On the fourth day they harvested double what they had the previous days combined!

After round five of chemo, a whole new battery of scans and tests were done to prep Mav for surgery. His primary tumor was located above the adrenal gland that rests above the kidney. We were told that the surgery could take anywhere from an hour and a half to three hours and that they might have to remove a kidney and most likely the spleen once they got in there and could see the tumor with their own eyes. Mav would need to spend the first night in the ICU so he could be kept a close eye on before being moved to a regular room for the rest of recovery. Surgery day came. We were only in the waiting room for 45 minutes! The tumor hadn’t encroached on any other organs and Mav didn’t have to spend the night in ICU! We were able to go home a few days later. Once he recovered, we had the 6th and final round of chemo. Now we are gearing up for his stem cell transplant in June. We will move in to the special Stem Cell Unit at OUCH for at least 3-4 weeks. Mav will be given an extremely high dose of chemotherapy that will kill all of his bone marrow. His cells that were taken during the harvest will then be inserted and we will wait for them to multiply and replace the sick marrow that was killed off. During this process Mav will be at his sickest and will suffer from all the effects of chemo: nausea, loss of appetite, mouth sores, diarrhea, etc. We are hoping that Sawyer will be allowed to visit because we will miss him terribly while we are staying in OKC.

Once transplant is finished we will have five rounds of immunotherapy and retinoic acid to get through. Maverick will be enrolled in Pre-K but will be unable to attend until treatment is over. By Christmas of this year we should be finished with treatment! We are so looking forward to traveling and being together- no more separation and long hospital stays. Mav is looking forward to starting school in January- a semester after his classmates. This has been the darkest time for us but has also been filled with so much light! Sometimes it takes a crisis to truly see all of the good in the world- and we have been continually blessed.

You learn as you endure this crisis that you do need help, and most of the time you are so focused on your child that you aren’t sure what help you do need. There have been so many people, like Ally’s House, that knew what we needed without being asked, and offered that help. There is no way to express how much everyone’s love and support has meant to us along the way. ‘Thank you’ is definitely not enough.