Elias's Story Part Two: Parent's Letter Project Medulloblastoma, chemotherapy - Elias' parents

Dear parents of a young child undergoing chemotherapy,

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 chemotherapy treatment.

What to expect

Eli's chemotherapy consisted of three “induction” rounds and three “consolidation” rounds. They were spaced three weeks apart. The basic pattern was like this: Eli would be admitted to the hospital on the first day of the round and receive a room. The nurses would begin infusing the chemotherapy drugs and the whole process would take a few days. Eli would then be discharged home and monitored for fever as his immune system tanked. (And because it was a strong chemo regimen, it really would tank.) If he got a fever when he was “neutropenic” (meaning he had no white blood cells to fight infection), he would have to go back to the hospital, checking in through the ER, but usually going on to stay in the inpatient unit until his immune system came back. Then he could return home until the beginning of the next round.

In practice it was less neat than this. The first round began only two weeks after surgery and included an extra procedure to collect stem cells (to be used later in the treatment). The stem cell collection had to be done under just the right conditions, and there were days of waiting for everything to line up and even some uncertainty whether it could be done at all. Eli ended up staying the whole three weeks of that round in the inpatient unit, not feeling at all well. Looking back, maybe it wasn't so surprising, but as novices we were very surprised and unhappy.

Other things happened, too. Eli's blood counts always dropped within a few days after being discharged from chemo, and he had to be re-admitted for fever five out of the six rounds. He ended up getting some of his chemotherapy injected directly into his spinal fluid, an additional step that no one enjoyed at all. And by the end, Eli's little body was so beat up by the chemo, on top of surgery, that he developed new problems requiring extra medical attention.

Several times at the beginning, we heard this statement from nurses and doctors: “This will be harder on you than on him.” I think this was meant to comfort us. But, with all due respect, it was a load of crap. I don't know how other people felt about it, but by the end of the second week of chemo I was angry when I heard someone say this to us or a fellow parent. Eli got extremely sick and extremely tired of the hospital. He was not happy to see his big brother go home without him. He suffered. A lot. Did he suffer less than we, who had to see this? Who cares? I would have been willing to suffer a lot more, if he could suffer less. What got us through was not some illusion that he wasn't suffering as much as it appeared, but the realization that we just HAD to do this. We had to give Eli a chance. So we did - and it was worth it.

In sum, be prepared to spend a lot of time in the inpatient unit. Be prepared to be tried to the utmost. Normal life is suspended for a while. Instead, try to make it bearable for your child and yourself. We found bringing his older brother Jacob in to visit was great therapy for Eli and also valuable for Jacob. He got to see his brother and didn't have to imagine the worst. They could even have fun in the play room together! Another thing that cheered Eli (and us) any time was getting visitors bringing a little gift or take-out food. We asked friends, family, and his school teachers to do this for him on a regular basis.

Getting started

One positive thing I have to say about this process is that the rotation of Children's attending physicians for the oncology inpatient unit is outstanding, and the fellows also are very good. They were accessible (by phone, too, when we were at home), understanding, and of course knowledgeable. When we had a question or needed a new order, we rarely had trouble getting the attention of the attending doctor or fellow. The nurses, too, were in general wonderful – kind and eternally patient. It was very comforting to have such a competent staff to depend on.

Our main point of contact with Eli's tumor team was usually our nurse practitioner. She was the one who would resolve problems, schedule procedures, answer questions, send records, and generally get us through. Know your nurse practitioner and value her or him!

Likely the very first thing your child will have to do is get a central line surgically implanted. Eli had a broviac catheter. (There is a separate letter on broviac care.) Having a broviac seemed strange at first, but it really is necessary for the hundreds of medication doses, infusions, and transfusions your child will receive.

Check the medications the nurses give your child. Check the name of the drug, the dose, and the timing and make sure everything matches what the doctor told you. You are part of the team caring for your child. Ask about common reactions to the drug; we were shocked once to see Eli start shaking after getting one medicine and being told by a nurse that it happened all the time. We would have appreciated knowing that before hand!

Nausea and loss of appetite will be a big problem, especially during the chemotherapy infusions. Although our doctors said that nausea could be controlled, the anti-nausea medications did not seem to do much for Eli. He lost a lot of weight, so maybe we never fully figured this out, but we did manage to avoid a feeding tube. We offered him frequent small portions with as much variety as we could manage. Many times, seeing a new food would get him to take at least a few bites. But, we had to accept that some days he would eat hardly anything. There was a lot of up and down with eating.

Fever and transfusions

Actually, the chemotherapy infusion is just the beginning. The fun really begins afterward. Accept that after discharge your child will probably get a fever and have to go back. It is extremely important to wash hands and keep the central line clean and out of the diaper area. But, it probably won't keep your small child from getting a fever when he's neutropenic. Most times we could see the fever coming on gradually for a few hours, even before the temperature readings registered a true fever, and we'd prepare to go. We had our bags ready at all times. Keep in mind that neutropenic fever and infections are a real medical emergency; we always got a speed-pass into the Emergency Department (ED).

When Eli got a fever, he would go first to the Children's National ED. While they always let him in quickly, once inside the ED things could slow down considerably because of the many things going on there. It was limbo; prepare for long hours in an uncomfortable room, not knowing anything. We would sometimes call up to the oncology inpatient unit just to find out what was going on. And at changeover time (7 am and 7 pm), everyone disappears. Eventually, you will be transferred upstairs, but don't assume anyone's working on your problem in the ED unless you stay on the case.

When the doctors determined that Eli had a fever and was neutropenic, he would be formally admitted, get an antibiotic, and the inpatient nurse would take blood cultures to check for bacterial infection. Sometimes these were positive, sometimes negative. If positive, Laboratory Medicine has to identify the bacteria and determine the best antibiotic; they'll keep taking cultures until they are negative. The situation resolves when a) the fever goes away; b) the cultures are negative; and c) the white blood cell count has come back. No one goes anywhere until then! You may have to continue giving your child antibiotics through his central line at home, which is actually easy and much better than being at the hospital. We discovered that in case of disagreements between infectious disease doctors and oncology doctors, the oncology doctors had the final say. Always check with the Oncology team for the final orders about antibiotics or central line decisions.

Your child will probably need a lot of blood transfusions. In each chemo round, white and red blood cell counts drop and platelets drop, too (blood doesn’t clot without platelets). So your child may need red blood cell transfusions and also platelet transfusions. Doctors had different opinions on how low Eli's levels should go before they would order a transfusion. Some tried to hold off as long as possible on the principle of avoiding transfusions unless absolutely necessary. We sometimes found ourselves pressing for a transfusion! Whenever Eli's red blood cells got to the borderline, he became very pale and sick-looking, and his energy would disappear; in fact, we got pretty good at reading his levels just by his appearance. With low platelets, he would get nosebleeds, and the blood loss would further drop his red blood cell levels. We kept a close eye on Eli when counts were dropping, because they could drop pretty quickly. We sometimes had to go back to Children's National just for a transfusion.

Eli got heavy nosebleeds with low platelets, and we were pretty shocked the first time he vomited up a stomach full of blood. The doctors didn't seem to worry about this much – we always wanted to get a platelet transfusion well before they wanted to order one (a platelet transfusion solves the problem, but it doesn't last very long). They did teach us the proper way to stop a nosebleed; pinch the soft part of the nose, firmly, while the child is sitting up. Unfortunately, this is easier in theory than in practice on a screaming baby.

Medications and IV

Eli went through lots of procedures that required sedation. The main problem with sedation is your child must fast for many hours beforehand. This is extremely hard for babies and young children who are already irritable and very, very hard on parents, too. A few tips: try to get the procedure scheduled as early in the morning as possible. If you don’' have to wake them up, great – they won't beg for food if they're sleepy. Also, we often found ourselves fasting, too, just because we didn't want to eat in front of Eli or because we were too stressed. Don't do this - it will only make the problem worse. Step out of sight, and get something down. Finally, if your child can't be calmed, let him be heard – it can't hurt.

Eli resisted swallowing oral medications. He was very sick and annoyed, and it was hard to reason with him. Bribes didn't help in his case. There were two approaches that did help. One, we would ask if there was an alternative that can be given by IV. For example, we couldn't manage to give Eli his weekly antibiotics to prevent pneumonia. He would cry until he vomited up the medicine. It had such a strong taste, we couldn't slip it into food (which is what we did for tasteless meds). There was an IV alternative that was not as good as the oral med, but it was a lot better than nothing. We stopped the weekly misery, and he didn't get pneumonia.

Unfortunately, there is no IV alternative for Tylenol, which believe it or not is the oral medicine Eli most often had to take (for high fever). For this, a couple of nurses used a sort of forced feeding approach. Hold your child's nose until he opens his mouth. Squirt the medicine toward the back of his mouth and let go of his nose. If done well, he will basically have to swallow the med. Unfortunately, if he is nauseous, there's a decent chance he'll throw it up after crying. We got through somehow.

As an inpatient, Eli spent much of his time hooked up to an IV bag. Often the fluid flow would be fast for one reason or another, and then he would pee a lot. We had to change his diaper frequently and keep a liner under him to keep his bed from getting wet. A nice technician will change diapers at night so you don't have to wake up to do it. Another problem is that the IV monitors are always beeping (when the line gets blocked or the medication runs out), and at night this can disturb sleep. Again, a nurse who is not too busy can make life easier by coming in before the drug runs out to prevent the beeping.

Getting through

A big problem with small children is just getting through the day at the hospital. We kept a large supply of inexpensive rewards to brighten things up for Eli –he liked stickers and temporary tattoos. The play room was also good, but the art room was even better. If your child cannot actually go to the art room by the hematology and oncology outpatient clinic, the therapists come to the inpatient side and are always ready to hand out a little something for the kids to do.

We tried to keep Eli active on his good days. There are physical therapists and occupational therapists at Children's National who can come play with your child. But we found just a little walk or a little art work did wonders for his mood and we're convinced it helped him recover more quickly afterward. There were lots of days, though, he would hardly move, and we'd feel better if we did just one good thing that day. Go to the playroom for just a little bit, have one solid little meal - one day at a time.

Constipation may become a problem because of diet, stress, and lack of movement, not to mention the treatment. We used Miralax® daily - get a giant tub at Target.

Other things we kept on hand: plastic cups and utensils, lots of drinks, lots of towels and blue liners (called chucks), and broviac clips. All these things can be found around the unit, but we liked to gather a supply at the beginning of each stay. From home, we brought lots of fresh clothes and hygiene kits (for us and for Eli), a sack of food, DVDs, and stickers. Whenever I went home from the hospital, I would unpack all the dirty stuff and repack immediately – you never know.

Mouth sores can be a problem during chemo, but we had good results just brushing Eli's mouth one or two times a day. The nurses brought out all these bad-tasting liquids we were supposed to swab in Eli's mouth, but he predictably rebelled. The doctors gave us permission to just brush instead - one of many compromises on the little things we had to make to get through.

The last three rounds of consolidation chemotherapy were a little easier in some ways: we spent a little less time in the hospital overall. On the other hand, one aspect of consolidation was very hard: because one of the chemo agents gets excreted through the skin and is toxic, he had to have a thorough bath every four to six hours for two days! Imagine waking your already thin and worn-out child several times at night for a bath, and you can see it wasn't a happy time. I believe he lost even more weight then. I can't think of anything to make this part easier, except that we learned to do the whole process very quickly so it was over in a matter of minutes.

There also is this consolation: It may seem endless, but it does end. That knowledge was all that kept us going in the last couple rounds. And happy was the day we got our last discharge. Even not knowing whether we were really going to beat the cancer, it was a joyful day. Eli had beaten the tumors back – that was enough accomplishment. Without the chemo, he began to cheer and improve very quickly. Kids are wonderfully strong.

Sincerely,

Emily and Solomon, Elias's parents

Treatment Team

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