Elias's Story Part Three: Parent's Letter Project Medulloblastoma, radiation, and broviac catheters- Elias' parents

Dear parents of a young child undergoing chemotherapy and using a broviac catheter,

In addition to our letter about brain tumors and medulloblastoma [featured in the letter titled “Medulloblastoma- Elias’ parents”], we would like to share more specific tips for getting through radiation and caring for your child's broviac catheter.

Radiation

After chemotherapy, radiation really seemed peaceful and orderly. The main differences were that radiation was done on an outpatient basis (and the blood counts never got to the point requiring hospitalization), and it lasted only six weeks. Every day Eli had the same routine: go to the hospital in the morning (having fasted overnight), sedation, radiation, wake up, go eat breakfast, and carry on for the day. It began only a few weeks after chemo, so Eli was still pretty thin and weak, and daily sedation and radiation didn't exactly make him feel better. But really he was happy to be home and less sickly overall.

The only advice we have is that you may wish to “shop around” a little. Children's National does not offer radiotherapy treatment. We learned that most children's hospitals do not offer radiation because the cost is too prohibitive so they partner with adult hospitals who have a much larger population of patients needing radiation. We were not happy with the first radiation-oncologist and hospital we visited and eventually chose another in the region. In the Baltimore/DC, area, there are several choices. During the radiation treatment and beyond, we continued to consider Drs. Leary and Packer and the rest of the Children's National folks as Eli’s “real” medical team. We checked in with them weekly and trusted them for the major decisions on Eli's care.

Broviac Care

Eli's central line was a broviac catheter. It was a blessing because getting IV lines into Eli's little veins was a nightmare, and the broviac was easy to use. On the other hand, the broviac took a lot of care and we heard tales of broviacs going bad and children yanking theirs out. As it happened, we managed to keep the same broviac the whole nine months of treatment, although it was a little difficult to use near the end. The following are our tips for care.

The nurses use the broviac for infusing fluids and medicines, as well as for drawing blood. Sometimes they will have trouble drawing blood from the broviac. In our case, Eli's broviac worked very well for about six months and then became tricky to use. The reason for this was unclear to us. Often the nurse assumed the line was clotted up and would want to put a chemical agent in to dissolve the clot. This could result in more than an hour of delay. But we were very diligent about flushing Eli's lines daily and felt clotting wasn't the problem. Two other steps usually helped us, without the use of chemical agents. The first step was to change the caps at the end of the line. These caps, if a few days old, could get cloggy. The second step, which was the most important in Eli's case, was to try different positions. By the last two months of treatment, we could only get a blood draw by leaning Eli down on his right side. This usually made him protest, and the squirming and yelling actually seemed to help! It was always an enormous relief to see the blood drawing out at last. It's upsetting to get stuck and be unable to go ahead with a procedure just because of the blood draw.

Pin the broviac up in your child's shirt with a broviac clip. This will keep your child from yanking on it and keep the broviac caps out of the diaper area.

The nurses at Children's National will train you in caring for the broviac. The lines require daily flushing and “locking,” and at least weekly cap changes. Also, the site at which the broviac enters the chest will have a dressing over it. This dressing must be changed and the site cleaned carefully weekly, at least, or whenever the child has a bath or gets wet. You might be tempted to skip these steps on a tiring day, but we tried to keep it up, even when we were traveling. The broviac was such an important tool for his treatment. Eli actually enjoyed the quiet time and attention (although we sometimes did it when he was already asleep). When your child is an inpatient or visiting the outpatient clinic, you can ask the nurses to do these things for you.

As we said before, Eli managed to keep his broviac. But we knew of other kids who yanked theirs out, and it was stressful but turned out OK. The other reason a broviac may need to be replaced is because it gets a bacterial infection. A few times we were told this might be a possibility, but carefully selected antibiotics cleared the lines. We realized that the doctors do their best to keep the broviac so as not to interrupt the treatment, and in response we became very diligent about broviac care. As a parent of young children, you know that kids will do the darndest things. You just can't guard against every possibility. So do the best you can, keep your eyes open, but don't beat yourself up if you have to get a new broviac.

Sincerely,

Emily and Solomon, Elias’ parents

Treatment Team

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