The Top 9 Things You Need to Know When Your Child is Diagnosed With Cancer

When David was diagnosed at 16, he was the first person in my immediate family to have a cancer diagnosis. We were shell shocked, to say the least. To be told that your seemingly healthy teen who had a bad headache is going to die… well, nothing prepares you for that. What happens next, though, is something I very much hope we can help parents prepare for.

David went to heaven four years ago, but we have stayed very active in the brain tumor community. It has been a huge part of my life for the last six years. (He was diagnosed in 2010.) I’ve learned a lot since then, some of it while David was in treatment, and some of it after he passed. All of it is information that I would rather forget, but it is important for parents like me to share their journeys so that those who follow after us can have a smoother path.

So here it goes, my top 9 tips for parents who’ve just heard that their child has cancer:

1. GET A SECOND OPINION. (Sorry for the all caps there, but really, this is important.) I don’t care that your doctor has been your family’s doctor for the last 3 decades. I don’t care if you are at one of the top hospitals in the country. Get a second opinion. Doctors are humans, and a lot of what happens in cancer treatments is up to their judgement. You may find that you don’t want to be on the path that they recommend. That isn’t a criticism of them. People are different. Paths are different. You almost always have to talk to more than one institution to know what all of your options are.

2. Do your research. Over and over again, I talk to families who say, “Well, our doctor said it is a ___ and we should do ___.” Then they just do it. We’ve been trained to honor medical professionals and trust their judgement. That’s not a bad thing. But being led around like a blind sheep can lead you into a treatment path that isn’t right for you or your child. When you are given the diagnosis, look it up. Start with major websites that can give you reliable information. A really good place to start is at https://www.cancer.gov/types

From there, look for foundations that specialize in the type of cancer that your child has. Since David had brain cancer, I can tell you that the sites I found useful were:

http://abc2.org/guidance/find-care – to find out which hospitals specialize in brain cancer – more on this later.

https://endbraincancer.org/we-can-help/ – to get guidance on what your next step should be. At the time I sought their advice, they were very frank about the type of testing they recommended and what to look for in a doctor, including referring me to a Neuro Oncologist.

3. If at all possible, go to a hospital that has a brain tumor team. ABC2.org only lists hospitals with a dedicated brain tumor team. The world of brain cancer research was virtually stagnant for many years, but in the recent couple of years, discoveries are being made very rapidly.  I don’t think it is practical to expect a doctor that deals with many types of cancer  to stay on top of every new treatment coming down the pike. Most will wait for the “tried and true” treatments before they change their recommendations. Brain cancer patients frequently don’t have that kind of time. Cutting edge treatments could mean the difference between life (or at least extended life) and death.

4. Ask every question you have. Write them down between appointments and don’t be shy about going through your list. The medical staff is there to help you and your child and the first step of that is making sure you understand what is going on.

5. Don’t be afraid to “fire” your doctor. I know that isn’t going to make me very popular with some folks, but here’s the deal. This is the single most stressful thing you will ever go through. You need to know that the doctor is 100% on your side and will fight for your child. If they ever make you feel like you are wasting their time, or your child doesn’t deserve treatment, move on.

6. Seek help. If you have found a doctor you like, but they are far away, ask for help. There are many foundations that fund travel and related expenses. Hospitals themselves sometimes have funds or auxiliary groups who can assist you. Crowdfunding websites help people raise money all the time for just this reason. You aren’t a slacker if you need help paying for all of this. Treatment is expensive. Time away from work means you have less money than normal. Going to doctor’s appointments means you need extra daycare, pet care, home care. It adds up. You can find a list of resources for brain cancer patients at http://www.dragonmasterfoundation.org. (Full disclosure: I’m President of that foundation.)

7. Make a Plan B. For everything. You may have a reliable vehicle, but what happens if your transmission blows? You have a friend picking up your other kids from school, but what happens when they get the flu? Most likely, you have people offering to help you, but they don’t really know what to help with. Get them involved in your plan B.

8. Make a treatment Plan B. I could have included this above, but this is super important. If your child has an aggressive cancer or one that has a high probability of recurrence, ask your doctor to tell you what the next line of treatment is. Time after time, people are lulled into a sense of security because treatment is going well, and the BAM! The cancer comes back. Everyone wants to believe the treatment will work, and if it fails, you have that same shock that came with diagnosis. Knowing what the next possible treatment is can really help you feel more prepared.

Side note: We were blindsided when David’s cancer spread. He had been on a clinical trial and was doing so well that his results were presented at a conference. We just knew he was going to beat his cancer. When it spread, we were kicked off the clinical trial and had to scramble to figure out what options were available for him.

9. Trust yourself. All of the tips above are for families who are prepared for an aggressive battle. However, not every family chooses that path. We were fortunate because David was a teenager and could tell us his wishes for treatment. Most parents are dealing with younger kids who may or may not understand the repercussions of treatment. We had an amazing neuro oncologist who would always lay out possible treatment options to us and the last choice was always, “or you can do nothing.” David had glioblastoma multiforme, and even now, six years later, there are no easy answers for that type of cancer. Brain cancer is a tricky, nasty beast. If there were one thing that was certain to work, I would recommend it, even if it made the child feel bad for a while. After all, what is six months of feeling bad compared to the potential 77 years of life lost when a child dies from cancer? But with brain cancer, there are no guarantees. Heck, for the aggressive cancers, there is very little hope. The families that push forward with treatment do so because it feels right for them, and frequently, because they want to help other people.

David was pretty adamant about helping others. His tissue was donated to research, and it is now part of an open access database that is empowering research around the globe. (This is also a project funded in part by Dragon Master Foundation. For more info on that, go to Cavatica.org.) It was a heart-breaking journey, but it was not in vain. I know that David would be thrilled to know that researchers are sharing data and working around the clock. We don’t know the answers yet, but I have every confidence that they are on the horizon.

I used to preface my help to people by saying “I’m JUST a mom…” because in the world of cancer research, I don’t want to come across as a doctor or researcher. However, my hard earned “momcology” degree is valuable, and I’m moving forward with a sense of purpose that my message is important and needs to be heard. Do you have tips you’d like to share for newly diagnosed patients? Please share them in the comments!

Treatment Options

We spent a good part of yesterday at VCU talking with the Radiation Oncologists about David’s next step in his treatment. They are concerned about the tumor he has in his 4th ventricle. It is partially obstructing the flow of Cerebral Spinal Fluid, and it could cause major problems if it grows and blocks that passage way. They recommended treating it right away with stereotactic radiation to try to keep it from having any further growth. Radiation would most likely keep the tumor from growing, but we wouldn’t see the full benefit for 5-6 months. There is a potential that the swelling from radiation could cause some issues, but they think they can control that with steroids.

With something this major, we felt it was important to get a second opinion, so we went to the National Institute of Health’s Cancer Center today. Mark had planned to drive David up there and Richard and I were going to meet them. Mark had some car trouble at the last minute, and so Richard and I picked up David and took him to his appointment. I offered Mark a ride, too, but he said he would just talk to David about it when he returned. We met with Dr. Fine, who is head of the NeuroOncology Department at NIH. He said he had presented David’s case to their tumor board, and that they felt he had some time before the tumor in the 4th ventricle started causing any problems. He said that there are a number of symptoms that would show we are heading for trouble, and David isn’t exhibiting any of those. He recommended that we do a mix of Avastin and Carboplatin for a month to see if it would halt and/or shrink  the tumors. He recommended this approach because a) it would attack all the tumors we can see, as well as other cancer cells we can’t yet see and b) it would give us a chance to evaluate the chemotherapy without any side effects from the radiation clouding the results.

We expressed some concern about the Avastin and possible problems with wounds healing because if the tumor does start to block the flow of CSF, they would need to put in a shunt to drain the fluid. Dr. Fine said that he didn’t think there would be a problem with that.

He further recommended another MRI in a month to see what effect the chemo was having, and said that radiation could be an option at that point if we weren’t happy with the results.

We talked about possible trials, and Dr. Fine thought that chemo was the best option to quickly combat the growths that David currently has. He definitely has an eye on clinical trial options for David, and I felt that he was really optimistic about David being able to be with us for years. With a GBM, that is a great outlook. We are hoping that we can keep fighting this disease with the latest tools at hand until they find a cure.

David wants to talk to the Oncologist at VCU tomorrow to see if he has any recommendations that differ from Dr. Fine’s plan.

These are tough decisions for anyone to make, but especially someone who has only recently had this power given to them. (That 18th birthday was a doozy!) I’m really proud of David for how he has handled everything so far, and pray that God will continue to guide him down the path that is right for him. We stand behind David in his fight, and I know that many of you do, too.

Cancer is a tough battle, but every day we see little signs that God is with us. Please continue to pray for wisdom that we will all make the right choices, that God will give David the strength to fight this disease and stand up for himself, and that David will be able to just relax and enjoy some time with his friends very soon.

We really enjoyed our time with him today, even though he was very tired. He slept for the entire car ride, and even while we waited at the hospital. He did wake up to eat dinner at Mike’s American Grill, though! It was Richard’s birthday, and we had a really nice meal there with some friends before taking David back to his dad’s house.

Tomorrow will be a big day of decisions, so I’ll sign off now to get some sleep. I’ll let you all know what he decides.