#GoGold4MSKids

Maggie's Blog

Oh, April. The month when spring is in full swing, the temperature is starting to climb (but not so much to make it unbearable), and little rain showers come to bring May’s flowers. I love the lightheartedness of spring. Stores start stocking clothes in pastel colors, and the sun shines a little bit longer. Spring is the time of new growth as the flowers start to bloom. April used to be one of my favorite months. And I want to really put an emphasis on the words “used to”.

 

Early in 2014, I started having some issues with my stomach. I figured it was one of the typical issues that people have with their digestive systems, especially since those are pretty common in my family. That’s what my family thought, too. I started a probiotic but that didn’t help. So my mom made an appointment for me with our family doctor. During that visit, he thought I might have Ulcerative Colitis or Crohn’s. I was just one month shy of turning 16, so he referred me to a pediatric GI. In our discussions with her, she had the same assumption as our family doctor, that it was either Crohn’s or UC. She decided to do a colonoscopy to get a definitive answer. But while she was doing the procedure, she couldn’t get the scope in all the way. She told us the mass could possibly be inflammation but took a biopsy and ordered a CT scan the next Monday.  She promised biopsy results when we returned.

Monday, April 7, 2014, I had a CT scan then went with my parents to the GI office. My doctor walked in and greeted us, and then things got serious. “Maggie, you have cancer.” Hearing those words is something you never imagine hearing. There is absolutely no way you can be prepared for it. But it didn’t end there. Not only did I have colon cancer, it was Stage IV. I had the main tumor in my colon but also had spots on my lungs and liver.

 

 As you can imagine, I couldn’t control my tears. At that moment there isn’t really anything that anyone could say or do to make it easy. There isn’t a way to sugarcoat that kind of news. I didn’t even want to look at my parents because I knew they were a mess, too. Thankfully, my amazing GI already had plans for us to talk to a surgeon at Blair E. Batson later the same week. We planned to hear what he had to say but probably go somewhere else for my treatment.

 

Thursday we met with Dr. Berch, a pediatric surgeon at Batson, and Dr. Collier, an oncologist at the Children’s Cancer Clinic at Batson. They explained the best way to start would be to surgically place a chemo port and give me a temporary colostomy so that we could focus on shrinking the tumor without the worry of total blockage.  I would have chemotherapy, and, soon thereafter, radiation treatments. After shrinking the tumors, I would undergo surgery. Both doctors told us we could pursue treatment at a different hospital and offered to help us make those arrangements. But after meeting them and hearing their plan, we felt incredible peace with staying at Batson. It would allow me to maintain a sense of normalcy, as it was only 90 minutes from our home in Hattiesburg, close to family and friends. Little did I know the impact that the decision to stay at Batson would have on my life.

 

Since starting treatment in April 2014, I have had 3 major surgeries, almost 50 rounds of chemo, 28 days of radiation, and countless nights in the hospital. I have absolutely fallen in love with Blair E. Batson. Doctors, nurses, techs, other patients, and even the people delivering food trays have had a profound impact on my life. I have learned so much from them and even realized that I wanted to pursue nursing as a career. (And this is coming from the girl that passed out the first time she had blood drawn.) I love to tell people about how special Batson is to me. I also learned how incredibly blessed I was to be diagnosed with an adult cancer.

 

The vast majority of children treated at Batson for cancer have one of the 16 major types (100 subtypes) of pediatric cancer. Yet only 4% of the funds from the National Cancer Institute (NCI) go toward research for these pediatric cancers. After I learned this, I knew I wanted to be an advocate for those battling childhood cancers. Despite the fact that my cancer is stage IV, I have done incredibly well due to the advances made through colon cancer research. I want all children AND adults to have the same chance.

 

I’m so excited and thankful to have the opportunity to share with you through several posts this month, which is Childhood Cancer Awareness month. In my next few posts, I’ll get to share more of my journey with you and more about why September is such an important month. I can only hope and pray that my words will somehow make an impact in the fight against pediatric cancers. I also hope that this month you will go gold for Childhood Cancer Awareness month!! See you soon!

 

 

In my last post I told you about my diagnosis, the beginning of my cancer treatment, and why I decided I wanted to speak out for childhood cancer awareness and research funding. In this post, I’m going to tell you where I am now. Well, I’m actually going to tell you what brought me to where I am.

 

In January of 2016, I was able to take a small break from treatment. All my scans were considered stable with no measurable growth. I enjoyed those few months without chemo and was able to squeeze two years of missed normalcy into those days. Then May came around, and it was time for another scan.

 

This scan showed a small new growth in the liver and slight growth in size and number of lung nodules. We started a new chemo but ultimately decided to surgically remove the liver tumor. So late in August 2016, I had surgery on my liver to remove the spot. The post-surgery biopsy results came back showing a lack of clean margins, meaning cancer cells were still present. After talking to my oncologist at Batson, we decided to consult an oncologist at M.D. Anderson. This doctor specialized in treating colon cancer, so we felt that was the right decision

 

After reviewing my scans and running some new tests, the doctor recommended we try a phase I clinical trial, a trial in which all participants receive active drug. He explained with a proven regimen that brought me to the point of near remission as a back-up plan, we were safe to explore experimental treatments. MDA had clinical trials to offer, but we were encouraged to find one closer to home. After mom did some research, she found a phase I trial opening at UAB, which was closer to home than Houston.

 

I started at UAB in fall of 2016. Every two weeks I received an infusion, and every day I took two pills. My first scan after two months of the trial showed stability. But in April of 2017, I was beginning to show signs of jaundice starting in the corner of my eyes and slowly spreading to my face. A scan revealed a small liver tumor pressing on my bile duct resulting in the jaundice. I needed a simple endoscopic procedure to place a stent to allow proper drainage.  Five procedures, two trips to the ER, and two hospital admissions later, I had a plastic stent keeping my bile duct from closing.

 

While recovering from the trauma of internal bleeding, the placement and removal of an external biliary drain, and other complications, we discussed the next phase of cancer treatment. The current trial obviously was no longer effective, and UAB did not have another to offer at that time. MDA happened to start accepting patients for a new study for which I qualified. After several tests and appointments in Houston, I was approved and ready to start the trial. On the day I was initially supposed to begin, I started having pain we discovered was related to the plastic stent. A GI at MDA went in to remove the plastic stent and replace it with a permanent metal one. There were no complications, but the start day to my treatment would be pushed back by several weeks as a precaution by the sponsoring drug company. One of my tumor markers showed a rapid increase, which possibly meant there was new tumor activity of some kind since I had been without chemo for over a month. Through lots of prayer, my parents and I felt led to return to Batson and restart the standard chemo we knew had been successful.

 

The change from standard therapy to clinical trials brought more than new medicine. It meant a switch from a pediatric hospital to an adult setting. I didn’t realize how big the change would be or how much I would miss the children’s hospital. But since returning to Batson, I can honestly say it feels like I never left. UAB and MDA contributed key parts in my treatment. The staff at each place was incredible, but Batson feels most like home. I realize now how much I missed the doctors, nurses, techs and other patients. Batson has brightly painted ceiling tiles and the lady that brings my food trays and knows when I won’t eat them. It has nurses that make me laugh and one that will laugh with me when I talk funny because of an allergic reaction. Batson has a Child Life Specialist who knows how much I love reading and writing and put together a book of writing prompts just for me. I know there are other amazing children’s hospitals out there, but there isn’t another like Batson.

 

I love that I came back just in time for Childhood Cancer Awareness month. Batson is the reason I became passionate about advocating for children’s hospitals and pediatric cancer awareness. If it weren’t for Batson, I wouldn’t know how important these issues are or why I should even care. That’s why in my next blog post, I’m going to share more about childhood cancer awareness, the lack of research funding, and what part that will play in my future.

I cannot believe that Childhood Cancer Awareness Month is almost over! This month I have seen more posts about childhood cancer than over the last three years combined. From gold ribbon Amazon boxes to local news stories about children I personally know battling cancer, the word is getting out. I feel proud 2017 has been a particularly successful year for raising awareness for childhood cancers. I know that we have come so far, but there is still a long way to go.

 

For a while after my diagnosis, I felt slightly angry toward those around me who didn’t seem to understand why childhood cancer awareness month was so important. But then I remembered until I had been thrown into this world of seeing young children suffer each day I didn’t know the harsh realties of childhood cancer either. I cannot blame others for not understanding something they have never had to personally experience. That is what sparked the desire in me to bring this issue to light.

 

Not only do I wish to bring awareness to childhood cancer research, I want to be on the front lines of the fight against it. Before I was diagnosed with cancer, I was an absolute wimp when it came to needles. When I got my ears pierced, I ended up passing out in the middle of Claire’s. After several more fainting spells, including one while having blood drawn, a cardiologist told me I had a vagal nerve condition causing me to faint whenever my body experienced some kind of stress. I wasn’t sure what my career field would be in, I just knew that it would not involve blood or needles. Of course, along with my cancer diagnosis came an unavoidable acquaintance with needles. Now I plan to become a nurse and want to work in pediatric oncology. I went from a fear of IVs to wanting to be the one placing them. Childhood cancer has become so important to me I want to spend the rest of my life treating the children that battle it.  

 

Funding research for pediatric cancer is the only way we can absolutely eradicate this disease. Currently, childhood cancer only receives 4% of the National Cancer Institute’s budget for cancer research. That 4% is spread across 16 major types of cancers and around 100 sub-types. Over 15,000 children are diagnosed with cancer every year and 2500 of those will not survive. Cancer in children is considered rare but is still the #1 disease killer of children in the U.S. Even when children survive, they still suffer from the effects of the toxic drugs used to treat them. Many will be diagnosed with secondary cancers later in life. Cancer is like a burglar breaking into a house but managing to escape. They may be gone, but their fingerprints are all over the crime scene.

 

Mortality rates among children with cancer are drastically different than they were 50 years ago. This doesn’t change the fact that there are still forms of childhood cancer that haven’t seen a change in chemotherapy regimen in 40 years. One form of brain cancer has a 0% survival rate. No child has ever managed to survive because researches just don’t have the funding to study it. I am thankful to have been diagnosed with an adult cancer that has seen new drugs receive FDA approval just since my diagnosis. Colon cancer is much easier to treat because of the vast amount of research surrounding it. That same kind of advancement needs to be happening in the realm of pediatric cancers.

 

Funding cancer research is incredibly important, but a lot of families in the throes of a cancer battle right this second will not reap the benefits of that research for many years. That’s why it is important to support those fighting cancer in ways with a more immediate impact. That can be anything from donating snacks to the Children’s Cancer Center to monetary donations that will help those families cover bills.

 

Awareness should not just be about knowing all the facts. We need to hear those facts and then take action to change them. I am thankful that Blair E. Batson has given me an even bigger platform to share my passion about this issue. I hope that maybe just one thing has resonated with you and you feel called to action. Cancer should not just be a battle for the person that is diagnosed. It is going to take ALL of us fighting as hard as we possibly can to wipe out this disease. I hope that this month we have been able to recruit a few more warriors to fight along side us.

 

I had never written much of anything until my diagnosis, and I think you can tell that now it is hard to get me to stop. Thank you so much to each and every person that has taken time out of your day to read my blogs and for a wonderful September. This month may be coming to an end, but I hope you continue to go gold for childhood cancer 365 days a year.

Part 2

Part 3