Advice to DIPG Parents

Here is the best advice I got from Bea's doctor the very first time we met a year ago. No matter what happens Bea will be cared for. She will be OK.

This may seem like strange advice when a doctor has just told you that your child's disease is 99.5% terminal. But, the sentiment made perfect sense to me. So, I'll share my interpretation: No matter what happens to Bea she will be loved and cared for and cherished. Whether or not she survives this is be true. It is my job to make sure that she feels nothing but love and caring from me and that I protect her from the grief, fear and anxiety I feel.

You MUST HAVE AN EXTREME SENSE OF URGENCY with this disease. This does not mean I suggest you panic all the time. What I mean is this. Time with your child is precious and you may not have a lot left. It's awful to think about and advice that I hate to give. But, make the time that you have with your boy or girl absolutely wonderful. DON'T WAIT FOR MAKE-A-WISH. They do not work fast enough for your child. Fundraise and take the dream vacation on your own. As long as your child is physically healthy enough let them do every physical activity they want.

This disease can cause very sudden changes in their physical abilities and after radiation these abilities do not typically recover or recover well. By sudden I mean a change that appears over 2-3 days.

BUT HOW DO I FUNDRAISE? A friend of mine helped us out with She set up choices that were monetary, gas cards, gift cards, movie passes, etc. You can do it yourself or ask a friend to take care of it for you. I also set up a Paypal account and linked from this blog to receive donations. All donations went into a separate account we made just for fundraising for Bea. That way we could keep track of everyone's generous donations.

If you have the means or the insurance to cover it keep your child in physical therapy. It may be awful for adults but it's like a gym class for kids and they usually really like it. Bea loved going twice a week. Having someone keeping an eye on her every week gave me a lot of peace, too.

YOUR TIME: You may not have a lot of it. You really don't. Do not sit around and wait for a doctor to find a trial for you. If they say they are taking care of it, the process can take a few weeks because they are busy taking care of your child and many others. Get things rolling yourself. Your doctor will help but if you take the lead the process will be MUCH faster. This doesn't mean that your doctor is incompetent or uncaring. They are responsible for a lot of kids, especially if they're one of the best out there.

YOUR DOCTOR: First and foremost make sure that you have a well-educated but caring and loving oncologist or neurologist. Someone who hugs. Someone who listens. Our doctor is just such a person and I feel that we are in very good hands on all kinds of levels. She will occasionally tell us what we want to hear but most of the time I feel she's a real straight shooter. I don't want to be told everything is going to be OK when it's not. But, when it's said I literally need a hand, sometimes.

YOUR FAMILY and FRIENDS: Lean on them as much as you need. They're there for you. Don't be a hero. This is not the time or place for it. Start a Carepages or Caring Bridge site and email everybody you know. Post to the site so that they can keep up. If you don't you will be bombarded with texts, emails and phone calls that are full of love but that will overwhelm you. Don't exhaust yourself with correspondence. Your child needs that energy.

SELF-EDUCATE: Do your due diligence. Learn everything you can about the cancer. Learn everything you can about cancer, period. DIPG is one of the most difficult cancers to treat but that doesn't mean that you can't discover something that will help. Don't give up. Consider alternative treatments as long as they don't cause pain or discomfort. If the main medical establishment doesn't have an answer then they have not succeeded yet then as parents we have to consider all options.

This includes finding out about all of the clinical trials out there. Really read up on them and determine how invasive the process is. We chose a clinical trial where the side effects are minimal and the impact on Bea's life would be low. We did not want to pursue anything surgical or anything that would make Bea sick because we need this to be a great year.

The good news is that there are some clinical trials that are being pursued as cures as opposed to a means to hold off the cancer for a few precious months. There are trials going on at St. Judes, Stanford, Sloane Kettering, Dana Farber, Pittsburgh Children's Hospital and MD Anderson, to name a few.

The trial itself will typically not cost you anything but you will likely have to find a way to get there. There are organizations such as Angel Flight that can help there. Ask your social worker for help on this. It's their job.

JOURNAL: Keep a journal of some sort. It is very, very healing to write in my blog. But, I also have a second journal where I write things I don't want anybody to read. They both help me a lot.

RADIATION: Beatrice tolerated it very well for the second half. For the first half she was a crazed child when she woke up from sedation. She screamed. I got punched in the face. She told me she was going to send me to jail. It's common, unfortunately, for this to happen. She woke up with a terrible headache and the doctors and nurses couldn't put 2 and 2 together. She'd get Tylenol AFTER the radiation and I suggested that she get it BEFORE. Guess what? That and having a snack ready for when she woke up did wonders. I was a completely different experience for her and we left there content.

CHEMO: We did not do chemo. It was not presented as a good option for Bea. Our doctor confirmed a lot of what I'd been reading online. There is a barrier in the brain that makes it difficult or impossible for chemo to effect DIPG. And most chemotherapy makes you very sick and unable to do much. So, even if it had been presented as an option I don't think we would have done it.

Also, some clinical trials will not take your child if they have had chemo during radiation. So, if your child has been recently diagnosed look up what clinical trials are out there and see if chemo will eliminate them from the study. It may be worth passing it up.

And again, chemo may make your child really sick during the precious months you have with him or her.

STEROIDS: Steroids are often necessary but commonly cause these side effects: swelling of the face and belly, enormous appetite and temper tantrums when the child can't be fed that second and susceptibility to germs. Meaning, when your child is on steroids they will be more inclined to get colds. Bea was on steroids for 3 weeks and got a whopper of a head cold her first week back at 1st grade.

FOOD: Take out as much processed sugar out of your child's diet as possible. Cancer loves sugar. When a person who has cancer is being tested to see if the cancer has spread guess what they're injected with? Glucose - or, sugar? It makes the cancer dance around and go crazy. It loves it. So, why feed it what it loves?

Bea ate blueberries every morning after radiation. This was her snack right when she woke up. Blueberries are high in antioxidants. Any berry is, actually. Her tolerance for the radiation and behavior during the day was remarkable. She did not get tired. She was not irritable. She lost some hair but well after the radiation was over and it was not a lot. She did not vomit or have any other bad side effect. Even the staff at Emory where she had her radiation said the blueberries may have helped her.

Replace white bread with mult-grain bread. I mean, whole grain that has at least 5 different grains. Your body processes (turns to sugar) this kind of bread slower than white bread. Instead of refined sugar try agave nectar. It's not expensive, can be bought at any grocery store and is lower on the glycemic index than regular white sugar. Your body metabolizes agave nectar slower than refined sugar. And, best yet, it tastes really good. I use it in my coffee now.

Supposedly yellow, orange and red veggies and fruit have the antioxidants that are especially good for combating this kind of cancer - sweet potatoes, carrots, yellow peppers, tomatoes (best if cooked), strawberries, beets, cherries, etc. Eat 'em up.

FUNDRAISE: Fundraise, fundraise, fundraise... This can become a full-time job but it's not that difficult. It's just time consuming.

First, set up a Paypal account to receive electronic funds. If you contact Paypal directly (call) they will help you set up an account where you can take gift donations.

Second, try to accept a variety of donation types. We have one here so you can see: A friend of ours set it up for us. It's been a life saver and also how we've paid for our trip to Disney we're doing at the end of May.

Get online to fundraise. Set up a blog, a facebook page and a twitter account and post to them regularly. Perfect strangers who you don't know and will never meet will generously gift monetary gifts. It is so incredibly heart warming to know that there are people out there who want to help you child with no real benefit to themselves. I've been amazed at how kind and supportive the world has been to our family and it's really taken a load off.

GIFT TAXES: Don't worry about taxes on monetary gifts. Don't call them donations. They're not. They're "monetary gifts". You are not liable for the tax on small gifts.

TAKE CARE OF YOURSELF: This is the last bit of advice before I go and play with my kids, who just woke up. Eat, sleep, exercise and socialize. If you are losing weight, eat more. If you are gaining weight, eat less. If you feel nervous all the time, take a hot bath. Read a mindless book. Get some sleep. Take walks, jog or run. Play some tennis or baseball so you can hit the ball hard as hell. Who cares if you're good at it? Get out with your friends occasionally. If you can't, talk on the phone.