Maggie’s Cancer Journey

On July 5th, Maggie went to see her pediatrician because she had thrown up a few times the week prior and just seemed really shaky and weak. We thought initially that she had some kind of stomach bug or viral infection. The pediatrician noticed that her eyes weren’t dilating as quickly as she thought they should, so she sent Amanda and Maggie to the Texas Children’s ER.

When they got to the ER they took her straight back for a CT scan. The head ER physician came into the room to talk to Amanda and that is when she knew it was something serious. On the CT they found a mass and arranged an ambulance to take them both to Texas Children’s Hospital in the Houston medical center.

When they arrived they were quickly met by a room full of doctors and nurses who prepared Maggie for her first surgery. They said that the tumor had blocked a part of the brain where cerebral spinal fluid (CSF) is supposed to drain out. Because it was blocked, the pressure was building up in her brain which is why she was shaky, unbalanced and throwing up. If the pressure gets too high, it can cause serious longterm damage to her brain so they were going to perform a surgery to implant a tube to allow the CSF to drain. That day was a whirlwind, it was just six hours from the time Maggie saw the pediatrician in The Woodlands until she was in surgery in the medical center.

The next day, July 6th, was a recovery day, and an MRI that evening. The MRI was to give them a better view of where the tumor was and its size. On the way down to the MRI, Maggie hulked out, as Amanda likes to call it, and begin ripping off her gown and monitoring devices and stood up in bed and jumped to Amanda as we were wheeling her down the hall. It took a few sedatives but she eventually calmed down. That strong-willed spirit is something the girls in our family come by naturally; sorry Amanda, you know it's true.

The MRI showed a tumor that was about the size of a racquetball on her cerebellum. It was behind her right ear. This is the area of the brain that controls balance, coordination, as well as other things. They scheduled surgery to remove it the next day.

We took Maggie to the operating room at 11 AM and didn’t see her again until 10PM. The waiting and feeling of helplessness was so hard, but the surgery went well and the surgeon called it a gross total resection. That is fancy doctor speak for getting as much of the tumor that is visible. Because the tumor was on her brain, they couldn’t be super aggressive with removal because that could cause damage to the brain. What this means though is that there are tumor cells left behind that are microscopic.

Biopsy results showed the tumor was cancerous, and soon the oncology team met with us to explain a treatment plan for Maggie. She has medulloblastoma sonic hedgehog variation (that’s seriously what it’s called). We are still waiting on further biopsy results to know the specific genetic mutations her tumor has, which will more specifically determine her prognosis. Maggie will have to go through 6-7 rounds of chemotherapy; each round lasts 4 weeks. The first 5-7 days Maggie will be admitted to the hospital to receive chemo, and she will then come home for three weeks of recovery. During that time she’ll go from really sick to gradually better, and then the process starts over again. It’s a lot for anyone to go through for 7 months, much less a two-year-old. Since Maggie is under three, she can’t go through radiation therapy, which would further increase her chances of beating cancer. She can only receive chemo due to her age. The oncologist told us medulloblastoma can be cured, and we feel positive that Maggie will beat this. We also know that we are in one of the best places in the world for this type of treatment and Maggie has that strong will that I mentioned earlier.

Our three other kiddos are handling it all mostly okay. Her big sister is probably taking it the hardest and is asking all kinds of questions that we are neither prepared nor capable of answering. It was a hard conversation with them, but they all understand what is going on, and all of the potential outcomes.

We are really thankful for all of the friends, family, neighbors, co-workers, and others who have prayed for Maggie and loved on our family. It’s helping make this situation somewhat bearable. So many people want to know how things are going and how they can help in some way. Some friends have mentioned creating a gofundme as an option for people to help. We were initially a little hesitant. We are blessed to have good insurance, flexible work arrangements, and friends and family bringing meals and checking in on us. We know there are lots of other families in similar situations, that don't have those things, so it felt, and honestly still feels, a little uneasy creating this.

But, we can acknowledge that expenses related to all of those do start to rack up. There are things we expected like medical deductibles and copays that will we have for the next several years for continued treatment and follow-ups. There are other things that are smaller but add up, like driving back in forth to the Med Center and paying $14 a night for parking. There are also unexpected expenses for toys and ice cream because I'm currently unable to tell any of my kids no for anything they want. As we go through the next six months, I’m sure there are other things that I’m not thinking of yet.

With that said, if you feel called to help with this, please use this gofundme, to do that. Also, pray for Maggie, pray for our three other kiddos, and pray for Amanda and I. We’ve still got a long uphill road ahead.

We have kind of developed a family motto over the years. We spend a lot of time in the outdoors, in state and national parks. Anytime we finish a hard hike, mountain bike trail, or climb, I’ll look at each kid and tell them, “We do hard things.” It’s hopefully a reminder to them later when they come across another hard thing, that they have done something difficult in the past and they can do it again.

We know right now is one of those hard things, but I also know that “We do hard things.” In a year or two we will look back and this will just be another hard thing that we did. Love you all, thanks for visiting the site.