Dear parents of a young child diagnosed with a brain tumor,
Something was very wrong with our son Elias. A lively two-and-a-half year old in February 2008, he suddenly began vomiting every other day. The first week, we thought it was a stomach virus. Then it was over. Five days later, he started again. Another virus? A few weeks later, we were calling the pediatrician nearly every day, trying to eliminate allergies, infections, and gastrointestinal problems. On March 14, 2008, we learned the unbelievable truth: our beautiful, precious son had a medulloblastoma - a malignant brain tumor.
During the next few nightmarish days in Children's Pediatric Intensive Care Unit (PICU), things only got worse. From an MRI we learned the tumor had spread, and there were several lesions along the spine; it was an aggressive, "high-risk" cancer and Eli had a poor prognosis. Our son was vomiting often now, and his eyes were wandering. He would need immediate surgery to remove as much of the large, primary tumor as possible. As the cancer had already spread to the spine, John Myseros, MD, Eli's wonderful neurosurgeon, would not attempt to remove the entire tumor at risk of damaging the brainstem. All of our hopes were now centered on Eli's Children’s brain tumor team: Dr. Myseros; Sarah Leary, MD, his pediatric neuro-oncologist; and Roger Packer, MD, pediatric neurologist and director of the Brain Tumor Institute at Children's National.
Looking back, it was amazing good fortune that we happened to live in the Washington, DC. Children's National was the natural place for Eli to go. It was just there. But over the next few weeks, every doctor, neurologist, pediatrician, and oncologist I spoke to said exactly the same thing, “You need to be with Dr. Packer's team at Children's National.” One specialist from National Institutes of Health even said, “If it were my child, even if I were halfway around the world, I would go to Dr. Packer.” Knowing that we had the right doctors to treat Eli's rare and dangerous condition gave us the only peace of mind possible at that time.
The thing I've since learned about Children's successful approach – it's a team effort. Each child's team will have at least a neurologist who tracks the tumor's effect on the nervous system and a neuro-oncologist who oversees the chemotherapy/treatment plan. You also are assigned a nurse practitioner and a social worker to look after you. Furthermore, treatments for all the children are tracked and discussed by the entire brain tumor group. No matter whom we saw on any day, we always felt Eli had a roomful of experts behind him.
Eli's treatment plan consisted of three main parts: surgery, chemotherapy, and radiation. The doctors hoped to shrink the tumors with chemotherapy and get Eli to the age of three, when craniospinal radiation could be administered without hopeless damage. We followed the plan to the letter. Eli's surgery was on March 18. His chemotherapy began March 31, lasted four months, and ended in August 2008. His radiation began in September (by then he was a little more than 3 years old), lasted six weeks, and ended in October 2008. Then, because of the aggressive nature of Eli's cancer and the high risk of recurrence, Dr. Packer advised that we continue with a course of experimental therapy at another institution in New York City. This treatment lasted five weeks, ending Thanksgiving Day in 2008. Altogether, Eli was treated for nine very long months following the plan set out by the Children's team.
I will not lie to you, as a parent whose child may be following the same treatment plan- it was terrible. Chemotherapy for Eli was particularly terrible. During those four months, Eli dropped from 31 to 25 pounds, lost all his hair, including his eyebrows and lashes, was weak and pale, and was barely able to walk. He barely smiled during the last month. Dad's job went on hold and our family income plummeted. Our older son Jacob, 5 years old, was worried and sad every time Eli went to hospital. There was nothing to do but hold on to hope and tell ourselves we had to keep going.
Was it worth it? Absolutely. Every day, sometimes every hour, we reminded ourselves that we had to give Eli the chance he deserved. The important thing was that he was still with us, still his unquenchable self. Then, at last, the treatment ended, the cancer beaten down. We were so grateful then and are even more grateful now, nearly one year later. Eli has since grown back his hair, his weight, his energy, and good spirits. No one can tell the dreadful experience he has had by looking at him.
Things have not exactly gone back to normal. You can't just snap back. Even Eli, who has been very lucky and doesn't seem very much changed by his experience, recovered slowly. The danger of recurrence continues to hang over us, and we live from one MRI to the next. And of course, we won't know for years how much damage the radiation has done. So, we have learned as much as possible to take each day as it comes and be glad for each and every one of them. And whatever happens, we are infinitely grateful for the wonderful care we received at Children's National and secure in the knowledge we chose the right doctors for our son.
The good folks at Children's National have asked us to write this letter to share some of the big and small lessons we learned on our journey. Here are some of the things we found out that may help you, at the beginning of your own journey.
The Big Picture
Your child's treatment will take a long time. True, we heard of pediatric cancers for which the treatment plan was years long, but seven to nine months minimum is still a long period in a family's life, especially when much of that time is spent in crisis. Also, the entire family will be affected. One or both of you may have to take leave from work or quit your job. Siblings will have to adjust to a fragmented family life. You may have to travel long distances to get the right care. And your child may get very, very sick as the chemotherapy and radiation treatments pile up on his or her system.
All of this is going on when you are struggling with fear for your child's life. To say the least, it's going to be hard. So here's the first thing we learned that got us through: Get all the help you can. Don't be proud. Don't let offers slip away because you're too frantic and tired. The best help probably comes from family. Unfortunately, our families live far away. But, we accepted two meal chains from our neighbors and from our son's preschool; we asked our friends to help baby sit our older son after school; we asked a local volunteer organization that helps cancer patients to do our grocery shopping (and they would have done other things, too, had we needed it); we asked people to come visit our son in the hospital. People were so eager to help, and it did help a lot. Social workers at Children's National can help with other things, too, like counseling, finding community resources, and getting financial assistance.
We found we needed all the strength we could muster. We had to be our child's advocate and protector during treatment. The people at Children's National are on your side, but they have many children to treat. You need to make sure your child gets what he or she needs. Ask questions of your doctor until you understand the exact plan of treatment. Then make sure everything is done according to the plan. It will take plenty of energy. There will be so many things your young child won't want to do, and there's no formula for making a toddler cooperative! We had to try to remain calm and ease Eli through one procedure after another.
One of the most important bits of advice we got from a doctor friend was that we should keep a treatment journal. We wrote down everything as it happened: discussions with doctors, questions and answers, as well as a detailed log of every medical intervention. We'd keep track of the drugs administered, with time and dose, the nurses that were assigned to us, vomiting episodes, temperature readings, everything. You'd be surprised how useful this was. We were often so tired that it could be difficult to remember anything after it happened. The clear record helped keep Eli's care on track. It was helpful in our conversations with doctors. Even if you can’t write everything down – and it isn't really necessary to be complete – try to keep some log of major events and your discussions with doctors.
Absolutely don't be afraid to ask the same questions again and to seek second opinions, at all stages of the treatment. Treatments are tailored to the child and to his or her disease. Our own treatment plan was not strictly mapped out from the beginning. Each step depended on how well the previous step went. We kept a running dialogue with Dr. Packer and Dr. Leary, and often we got their opinions of what the next step should be with only a couple weeks to spare. It's not a lot of time, but we contacted doctors at other institutions (as recommended by the team at Children's National), sent them the MRIs, and set up phone conversations for second opinions. They were willing to do it. The doctors at Children's National, too, were perfectly comfortable with our seeking second and even third opinions.
Here's another important thing we learned: after an MRI, wait for the radiologist's report and have your doctor discuss it with you. We came to grief when a nurse took a quick look at our son's images and told us that she only saw the one tumor. In fact, there were additional lesions on his spine, a fact which completely changed the picture as far as his prognosis and treatment went. We went numb when we saw them. And it was all the worse because, until then, we had thought there were no metastases.(Children's National Medical Center procedures prohibit non-attending physician staff from discussing their own preliminary impressions of diagnostic studies with parents to avoid exactly this type of scenario. Appropriate staff have been reminded of the need to follow procedure on this subject.)
Our final bit of general advice is: don't try to do each and every thing. Pace yourself. It's a long haul, and you've got the whole family to think of. We were lucky that my husband's job allowed liberal leave, so we alternated days at the hospital. On our days off, we spent time with our older son and took a break. Giving ourselves a little slack allowed us to keep our older son on a fairly normal routine of school and play, and to enjoy ourselves as a family, even during this hard time. We were able to attend to our health and maintain some perspective. If you're alone and have to be with your child full time, perhaps you could get a family member, a friend, or even a hospital volunteer to give you breaks. There are some ways to relax at Children's National: televisions throughout the hospital, computer access in the Ronald McDonald room, showers on the fourth and fifth floors, and a library next to the cafeteria.
The words “cancer” and “children” should never go together. It's just not fair. I wish I could explain why this has happened to us and to you. I can't. Just remember, you don't have to do it alone.
Emily and Solomon, Elias' parents