Living with Burkitt's

One family's experience with Burkitt's Lymphoma

What can you do to help?

We have been overwhelmed with gratitude to everyone who has expressed their support in any way since Andrew has been in the hospital with what we now know is Burkitt’s Lymphoma. This has been the most difficult challenge of our lives. Wonderful family, friends, neighbors and colleagues have brought Andrew gifts, visited us at the hospital, sent cards, cared for Madeline, made Chris’ work days easier, taken over my PTA responsibilities, put up our Christmas decorations, bought us food, given us breaks, given us gift cards, cleaned our house, done our laundry, returned our library books, covered our home and street in yellow ribbons and even offered to be tested for bone marrow compatibility. It doesn’t look like that will be needed, but we are appreciative all the same.

Some of these acts of service occurred after we asked for help, while many others were done without our prior knowledge. Regardless of the reason, we are touched and humbled.It would be impossible for us to accept the offers of everyone who has offered to help in any way, but it is nice to know you’re there, because we have needed to accept some of those offers.

To those who are looking for ways to help us or families in a similar situation, here are some ideas.

1. Prayers and kind thoughts

We have felt gratitude for every person who has said or written that they are praying for us or thinking of us. It really does help just to know you care. To know that the powers of heaven are being called upon in our behalf by so many gives us great strength.

2. Gift cards 

There will come a time when the home-cooked meals that have been offered will be needed and appreciated, but nobody has eaten more than cold cereal at our home in three weeks and counting. We have been doing lots of driving back and forth and paying for most of our meals in the cafeteria. When Chris’ co-workers gave us fuel and restaurant gift cards our first week here, it was the gift we would not have thought of on our own, but it was exactly what we needed.

3. Gifts and service to healthy siblings

Madeline doesn’t understand what Andrew is really going through, but she knows that he is receiving a lot of fun gifts and nearly all of her parents’ attention. It’s hard for healthy siblings not to feel frustrated and jealous. Grandma and Grandpa have been heroes for keeping Madeline’s life as normal and happy as possible. Neighbors have helped to pick her up from school and drive her to lessons and activities. If you’re thinking of gifts for a family with a sick child, consider the needs of healthy siblings as well.

4. Donations to the hospital

I have been amazed by how much we have benefitted from the donations of strangers to Primary Children’s Medical Center. We have played with the hospital’s toys, read its books, watched its DVDs and played its video games. Volunteers play live music in the lobbies and staff the playroom. Andrew has received new books and toys as gifts from the hospital and its donors. One of our friends makes hats for the cancer clinic. When she told us that, we had no idea how relevant it would be. PCMC is an amazing place and much of that is due to the generosity of many in the community.

We consider a donation to Primary Children’s Medical Center to be a donation to us. Here is a link where you can learn more about donating money or items to this special place. The Festival of Trees is happening in Sandy, Utah now. Be there. It’s a fun family event that supports Primary Children’s Medical Center.

5. Whatever feels right to you

Every gift has been appreciated because of the love with which it was given. The combined efforts of and ideas of many have staved off boredom and increased our comfort during some really long days. Visitors have brought fresh energy and smiles. Acts of service have brought grateful tears to our eyes. Toys, books, magazines, snacks, movies, cards, kids’ drawings, posters and more have lifted our spirits tremendously. Thank you. Thank you. Thank you all.

I have been taught how to be kind from so many of you. When this trial is behind us, I hope never to forget your example so that I can extend the same kindness to others.

Festival of Trees, Primary Children's Medical Center

Festival of Trees

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What does chemotherapy look like?

Andrew received his first dose of chemotherapy yesterday afternoon. It wasn’t technically his first dose, because they injected a small amount into the area where they took the bone marrow biopsy last Friday, but it did not visibly affect Andrew. I can live with that.

What they gave Andrew yesterday is something we are calling Starter Chemo. While it has been explained to me at least twice, I’m still not sure I completely understand it. I’ll do my best to explain. Starter Chemo is a combination of drugs that should begin to slow the cancer’s growth, but it’s not a full-scale attack. A first-time, full-scale attack could blow up and scatter the lymphoma cells, which could cause a chain reaction of bad things. I didn’t pay close attention to what those are, because Starter Chemo is supposed to avoid that problem.

Starter Chemo (COP)

Different cancers require different plans of attack. Our plan includes the Starter Chemo (COP), followed by two big-gun cycles of  COPADM and two cycles of CYM. Each letter stands for one of the drugs in the chemotherapy. Lots of other drugs, including familiar names like Zantac and Benadryl, are given around the same time to combat the side effects of the chemo. In some cases, as with Benadryl, a drug is given to combat the side effects of a drug that is combating the side effects of the chemo. Thinking about all those drugs in my son makes me hurt, but what else can we do? Pulling a Parker Jensen is not our style, though I understand his parents a little better now.

We received the COP yesterday. It consists of two cancer reducing drugs and a steroid, Prednisone. The Cyclosphosphamide and Vincristine are given just once,while the Prednisone is given twice daily. Prednisone may make him moody, hungry and puffy. The other drugs may carry the traditional chemo side effects, such as nausea and hair loss, though we’ve been told that we might not see a big difference in Andrew in this week’s dose. The nice thing about the COP is that it will not greatly reduce his ability to fight the infections we have been dealing with, so it’s a good compromise between fighting the cancer and recovering from surgery. We are praying that Andrew will get past the infections quickly. The improvement we’ve seen overnight makes us all hopeful.

The first COPADM will probably be administered next week, and then the remaining cycles will be given approximately every three weeks thereafter. Chemo treatments could be delayed if Andrew is not healthy enough to receive them. As we learned while we were here over Thanksgiving weekend, chemo can be somewhat scheduled around holidays or big events. The number of patients in the ICS grew significantly on Monday morning.

The administration of chemotherapy is not as exciting as one might think, especially if you’ve been in the hospital as long as we have. It looks like all the other drugs that have been given to Andrew intravenously through an automated pump over the past three weeks. Andrew calmly watched television throughout the process. The nurse administers all of the chemo. There is one drug that she administers by hand through the PICC line. She wears a disposable blue chemo smock and purple chemo gloves for that.

The surgeons thought Andrew looked great when they cruised through today, and said that they will probably not stop in so often unless something changes. As much as we like them, we won’t be sorry to see less of them and their 7 a.m. visits. Our goal today is to take some walks while Andrew’s immune system is still in good shape. We’re hoping that things will be really boring for a few days.

Andrew took his first real bath in weeks today. He was nervous about it, and didn’t have much fun in the tub this time, but he felt a lot better when he was done. When we returned to his room, his bed was changed and we were happy to see that his stuffed friends had kept busy while we were gone.

After the bath

Andrew has lost about four pounds since we’ve been here. As many of you know, he didn’t have excess weight to begin with so that’s a lot more significant than if I were to lose four pounds, which is hypothetical, sorry to say. Andrew is all bones and angles now. The nutritionist said this morning that he needs to start eating or he may have to have another nose tube for nutrition. The predisone may increase his appetite. The lack of surgical procedures may help too, since he had to fast every time he needed one. Breakfast went well. Keep praying for a hearty appetite!

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It’s Complicated

One of the most frustrating things about this experience is that if there is a complication to be had, we just plan on it now. We miss those carefree, innocent days when we thought we were dealing with a quickie case of appendicitis in a healthy kid. Appendicitis led to a bowel shutdown, which led to surgery, which discovered intussusception and blockage, which led to cancer (?!), the treatment of which has been delayed by infection, high fevers, and most recently, fluid collecting in and leaking from the lining of his lungs. Of course, cancer is not a complication of appendicitis. It was the real problem all along, but the road to that realization was a bumpy one.

Our oncology team wanted to start chemotherapy last Friday. That was delayed through the weekend by ongoing fevers as high as 103 Fahrenheit. By the way, PCMC uses the metric system, so temperatures are taken in Celsius and weights are taken in kilograms. 103 F is equal to 39.3 C. We have been in and out of the 38’s and 39’s (101+ F) for much of the past week. When we eventually go home, we will need to check back in to the hospital for any fever over 101 F. Chemo was held again on Monday due to another fever spike.

We had a CT scan that day, our fourth in three weeks, which showed some collections of fluids in the intestine and lining of the lungs, either of which could cause infection. Our teams, which include Surgery, Oncology, Infectious Disease and Radiology, put their heads together and decided to attempt to drain the abscesses on Tuesday. Sedation was required. For the fifth time in three weeks. Urg.

Burkitt's Lymphoma

Phineas and Ferb on the jumbo-tron

For this procedure, we discovered the hospital’s Jazz Room. It’s a room in Radiology that is decorated like the locker room of the Utah Jazz NBA team. Signed photos, jerseys, shoes and ceiling tiles surround the hospital equipment. It even has a jumbo-tron. Andrew is not the Jazz fan he ought to be, but Chris was impressed. They tuned the huge screen to Phineas and Ferb while they prepped Andrew for the procedure. We were sent out of the room a few minutes later. I assume that after the sedation kicked in, the screen was tuned to Andrew’s insides via ultrasound.

The procedure seemed to go well, and chemo was set to start on Tuesday evening, but after a couple of hours back in the room Andrew suddenly cried out in pain and gasped for air. I ran for the nurses and they all rushed in. I think I took my first breath after a nurse called that his oxygen levels were OK and I saw that Andrew was breathing. I saw a couple of Code Blue responses when we were living in the surgical unit. Sirens wail and a dozen people run for the room. One Code Blue occurred as our surgeon caught me in the hallway and told me for the first time about the tumor. Code Blue seemed appropriate because something similar was going on inside my head.

Burkitt's Lymphoma

NBA signatures on the ceiling

A mobile x-ray machine was called up and Andrew screamed in pain when they made him lie flat. The x-rays showed that the fluid in his lungs had sprung a leak and a PICU (Pediatric Intensive Care) doctor was called up. She looked him over and decided that it would be better to wait until morning rather than attempt a blind drain of the fluid. A diarrhetic was administered to flush him out and chemotherapy was postponed once more. At that point, I was starting to feel the same longing way about chemotherapy that I felt about labor in my 38th week of pregnancy. It seems wrong to want something that is going to cause pain, but if we can’t avoid it, let’s get it over with already!

Burkitt's Lymphoma

Jazz display case in Radiology

Andrew slept sitting up and was comfortable enough through the night. Can’t say the same for myself. I usually get a tolerable amount of sleep here, but it was hard to stop worrying. Nurses come and go throughout the night and machines start beeping every so often. If the nurses don’t hear them right away, I keep the call button handy. Because of the light outside the door and the glow of monitors and machines, it’s never very dark in the room. The bed is basically an open ended couch. It could be worse.

This morning we returned to Radiology for an ultrasound. The Radiologist found that there was very little fluid left in the lungs, too little to justify the risk of installing a drainage tube. I am nearly always relieved when the doctors recommend less intervention instead of more intervention. More intervention too often means more complications, despite the benefits. I asked three different doctors about the pain Andrew was still feeling and their best guess was lingering inflammation or a possible tweaked nerve. He seems to be feeling better, but he is still hesitant to lie flat.

Chemotherapy is being administered now. Despite the nurse’s HAZMAT suit, it’s not as dramatic as one might think. More about that later.

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Our journey begins

How did this happen to us?

We ask ourselves that question on a daily basis. Last month at this time, we were a happy, healthy family. Our lives weren’t perfect, but for the most part, we knew how good we had it. Our problems were of the usual sort: stress at work, busy schedules, keeping track of finances and an occasional case of the flu. That’s where our journey began.

Two months before diagnosis

The day after Halloween, a Thursday, Madeline was sick with the flu. I asked Andrew how he was doing and he mentioned that he had a stomachache. Who doesn’t on the day after Halloween? I made a mental note to make him a green smoothie as soon as I could get to the store for supplies. He has a history of minor digestive problems and I figured that would fix it, because it usually did.

Over the weekend, Andrew starting having painful abdominal attacks. They immobilized him, but they were brief and only happened about once a day. When they were still happening on Tuesday, November 6, I left a message for his pediatrician asking for advice before we left for Kindergarten. I was volunteering at the school that day, so I was already there when he had two more abdominal attacks.  I checked him out and called the pediatrician, who gave us an immediate appointment. I was advised that it could be a virus, but that it was probably best to bring him in.

The pediatrician looked him over and recommended that we go directly to Primary Children’s Medical Center (PCMC) in Salt Lake City to get an ultrasound for intussusception, which is where the bowel telescopes inside itself and can cause big problems. At PCMC, the radiologists found an enlarged appendix and we were given the option to stay there for an appendectomy or go to the hospital near our home. We opted for our home hospital. Andrew had an appendectomy that evening, which went well. I watched the election results from a painfully uncomfortable pull-out bed in his room.

Burkitt's Lymphoma

Waiting for appendectomy

We were discharged the next morning and he was acting like his old self, despite a couple more short abdominal attacks, until he had an attack that wouldn’t quit at about noon on Thursday, November 9th. I called his surgeon and the nurse at the hospital who recommended a laxative and a heating pad. By the time we got those going, he had become lethargic. He was moaning and vomiting often.

After a couple of hours and more phone calls, we decided it was time to go to the Emergency Room. We spent five anxious hours there while he drank the contrast liquid and had a CT scan. The CT revealed an intestinal blockage and the ER doctor got Andrew’s surgeon on the phone. They guessed that he had an ileus, a common complication after abdominal surgery where the intestines shut down temporarily. They guessed that his system would start up again after a few days in the hospital, but they recommended that we bring him to back to PCMC, just in case it was something more serious. They put a tube down his nose to suck out fluids from his stomach and that was a terrifying experience for all of us.

We drove directly to PCMC and checked in through the Emergency Room. The doctors didn’t seem overly concerned because they assumed that his body would start working again on its own after a day or two on an I.V. We were assured that the necessity for another surgery was nearly impossible. During the night, his tube came out somehow. They left it out for a couple of days until his vomiting became worrisome. Putting it in the second time was just as horrible as the first.

They also replaced his I.V. with a sturdier PICC line so they could give him protein and lipids intravenously. They put a tube down his other nostril in an unsuccessful attempt to get a particular x-ray. He continued to suffer from abdominal pain and was not allowed anything to eat or drink for a week. It was miserable.

Burkitt's Lymphoma

Taking a break during a walk

By Thursday, November 16, his situation had not improved, so the attending physician decided to operate. Once inside, they found the intussusception that his pediatrician guessed in the first place (we’re keeping her) and a kink in the intestine about a foot farther down. The intestine in between was blocked by something and had died. It fell apart in the surgeon’s hands and we were grateful they hadn’t waited any longer before doing surgery. They cut out the bad part and sewed him back together and we were on the road to recovery once more.

We spent the night back in our old room, but his sodium levels were dangerously low and we were soon moved to the ICU on the 2nd floor for two days where the staff could monitor him more closely. We didn’t realize how private and homey our room in the surgical unit on the 3rd floor had been until we spent time in the ICU, so we were happy to move back upstairs on Sunday, November 18. On Monday, the PICC line was removed due to infection. I didn’t think I would miss it until the antibiotics burned through four I.V.s. in three days. Every time the I.V. failed, his hand and arm swelled up to twice its normal size. A few days ago, another PICC line was installed at the same time as the bone marrow biopsy and lumbar puncture.

Things took a turn again on Monday when our surgeon came to visit in the middle of the day with the report that Pathology had found a lymphoma in the tissue removed during surgery. A tumor had caused both the blockage and the intussusception when his intestine tried to pass it. It was all very sketchy at that point, but we met the oncologists later in the day. They guessed that we were dealing with Burkitt’s Lymphoma. That diagnosis has since been confirmed. Burkitt’s Lymphoma is a highly aggressive, but highly treatable cancer. The odds of being cured are in our favor. We are grateful for such a sunny outlook, but we still fear the worst. We feel like we have already beat the odds in all the wrong ways this month.

Burkitt's Lymphoma

On Sunday, November 25, we moved to the ICS on the 4th floor. We have now spent quality time on every floor of the hospital, since Radiology is on the first floor. We are expecting four cycles of chemotherapy over the next few months. The first dose has been postponed for a few days because of ongoing infections from the surgery. Lots of bacteria were set loose in Andrew’s body when his intestine fell apart in surgery and despite being pumped full of serious antibiotics ever since, the infections persist. Chemotherapy will compromise his immune system, so they don’t want to give it when there is known infection. There doesn’t seem to be any worry that the infections will go away eventually, but every day chemotherapy is postponed is another day that an aggressive cancer lives on.

We have been asked many times how we are holding up. What is the right answer to that? I usually respond that we are O.K. We are functioning and doing the things we need to do. Occasionally, we even find little things to smile or laugh about, but there is no way to thrive under these circumstances. While one of us sleeps at home every night, nobody has lived there in three weeks. We are exhausted. We are sad. We want things to go back to the way they were before. We know that even if Andrew is cured, which is likely, our lives will never be the same.

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