Living with Burkitt's

One family's experience with Burkitt's Lymphoma

Drum roll, please…

Today is the day we found out whether or not Andrew’s cancer is gone. We arrived at Primary Children’s Medical Center at 9:00 a.m. and spent the morning in Cardiology and Radiology getting an echocardiogram, EKG and CT scan. Until today, I didn’t know there was a difference between an echocardiogram and an EKG. One uses ultrasound, the other is electrical.

Chris and I nearly panicked at one point in the CT Room. Andrew was doing well – acting like a typical 6-year-old. He is no longer worried about CT scans and he was acting silly. The area where the medical staff views the CT is separated from the radiation area by a soundproof glass wall.  As the doctor looked at Andrew’s scans, we noticed that he seemed very concerned and that the tech was crying. We found out that they had been talking about something sad that had happened in the tech’s life, but we were really worried for our family for a few minutes.

We arrived in the clinic at noon, and we waited. And waited. The CT computers were having technical difficulties, which did not allow our doctors to see the results.

We learned quickly that Andrew’s immune system is nearly at zero today. What!? It was normal last week and it wasn’t that low yesterday. He has had some diarrhea and a stuffy nose the past few days, but otherwise seems to be fine. Unfortunately, it was enough to knock out his ANC in time for the big day. It nearly threw a wrench in our Spring Break plans.

Our doctors were uncertain whether or not it was a good idea to take out Andrew’s PICC line with an ANC that low. They ultimately decided that it would be OK because his monocytes (another part of the white blood count) are high. That’s an indication that the ANC is on its way back up.

Furthermore, PICC lines are meant for the short-term. Even if Andrew still had cancer, they would need to put in a new PICC line or a port. The PICC line is gone.

With that behind us, we moved onto the diarrhea problem. It is probably a virus, but C-Diff is still a possibility. C-Diff is an infection that cancer patients are especially prone to, and it can wreak havoc. Because we waited around for so long at the clinic, Andrew finally produced a stool sample and we will call in the morning to see if we need to fill an antibiotic prescription for C-Diff.

Our day was starting to feel like the results show of American Idol. We’ll reveal the answer… after these messages! At 3:00 p.m., we finally went to lunch, hoping that the CT results would be available when we returned.

They were! And we learned that…

Andrew is cancer-free!!

His echocardiogram and EKG were normal, indicating that the chemotherapy didn’t damage his heart. The CT scan of his abdomen, where the original tumor was found, was clear. Two small spots were found on his chest CT, but they are “unlikely” to be infectious and “very unlikely” to be cancerous.

We will return to the clinic in seven weeks for another CT scan or ultrasound. Burkitt’s Lymphoma is very aggressive and if it is coming back, it will probably come back quickly. They’ll be watching those spots.

In the meantime, we are celebrating Easter and Andrew with my family tonight and Chris’ family tomorrow. We will be in California for a beach vacation by Easter night. If Andrew gets a fever, we still need to go to the Emergency Room wherever we are. The odds are in our favor though, and we are excited for this opportunity to celebrate and spend time as a family. I’ll share details and photos when we return.

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Back to School

2nd First Day of Kindergarten

Yesterday, Andrew went back to school. On Monday, during a particularly bored and restless moment, I asked him if he would like to go back to school on Tuesday, and the answer was an enthusiastic “Yes!” He is attending half-day Kindergarten for three days this week. We think he’s up for that.

I contacted his teacher and principal, and getting Andrew back in was pretty easy. We had a few requests to ensure his health and safety while we are still waiting for his final scans and removal of the PICC line:

  • No P.E. or outdoor recess
  • He will bring his own water bottle. No public drinking fountains, please.
  • Please keep him away from children with obvious symptoms of illness. I know all parents want that, and we are playing the cancer card to get it this week.
  • No rough play with other children.
  • He must wear a hat whenever he goes outdoors.

The last rule is the only one I hope he will need after our visit to the hospital this Friday. He will be on an antibiotic called Septra for a few months that will make his skin more sensitive to sunlight. We are grateful that his teacher and the office staff have been so concerned and accommodating.

Circle Time

Mine is the bald one

Two days down, and Andrew seems to be doing well. I’m sure that he is behind in his learning, but I am hopeful that we can help him catch up quickly. Andrew’s teacher reports that Andrew seems to be a little overwhelmed by the Kindergarten atmosphere and rules. After three hours in a room with 20 six-year olds, who wouldn’t be overwhelmed after being away from it for five months?

She also reports that Andrew’s attitude can be challenging when things aren’t going his way. I admit that we spoiled him over the past few months, because he had to endure so much. We have been accommodating, but we are moving back to a less-indulgent parenting style at home, and we will support consequences for inappropriate behavior at school. I hope that’s not too rough on the boy, but I think it’s good for him.

Andrew looks fragile with his bald head, skinny body and the aura of his recent history, but he isn’t. He powered through the field trip at the children’s museum last week and came home with energy to spare. We want to keep him healthy so he shows well at his big appointment this Friday, but I don’t think he would fare worse than the rest of us if he picked up a virus at this point. It was always the bacterial stuff we were most worried about anyway. I am grateful to have reached this point of his treatment, and am optimistic, and anxious, about our appointment on Friday.

Stay tuned, everyone!

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Best Easter Egg Hunt EVER!

Family with Easter Bunny

Last Saturday, we attended the Make-a-Wish annual Easter Egg Hunt. This year in Utah, the event was held at two locations: Hogle Zoo in Salt Lake City, and the Ogden Eccles Dinosaur Park in Ogden. We chose Ogden.

The day was cold and there was a light dusting of snow on the ground. We dressed for the weather in parkas, hats and gloves. We arrived a little early and had time to explore the indoor museum before the hunt began.

My girl

Because of the cold, attendance was light. There were only about twenty or thirty kids and thousands of candy-filled eggs littering the grounds of the Dinosaur Park. The organizer started dividing the children by age, and then said, “Aw, go where you want. Just don’t run over the little ones.”

Egg Hunt

I was glad I had brought extra grocery bags because my kids’ plastic buckets filled quickly, while there were still plenty of eggs. I followed Madeline while she filled the grocery bag. There were so many eggs, she complained that her back hurt from the bending and from carrying the heavy bag. When it was full, she gave up, leaving eggs on the ground.

Andrew’s bag was not as full as Madeline’s, but Chris told me that Andrew exclaimed during the hunt, “I hate cancer, but this is totally worth it!” I can’t say I agree with the last part, but it was great to see him so happy.

After the egg hunt, the party continued inside the museum where our children were delighted by a face painter, balloon artist, crafts and games.

Angel

Andrew is planning to return to school this week for three days. He will hopefully go tomorrow!

Yesterday, We took Andrew to Primary (LDS children’s Sunday School class) for the first time since October, and he did well. He jumped right back in, and we will be back to reminding him not to talk out of turn in no time.

Ogden Dinosaur Park

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Welcome to the weekend

The weekend is here! I am glad to say that we have plans.

Andrew’s blood counts came back this morning and they are all heading in the right direction. His ANC is 3.3, which is pretty good. So… We’re free! We’re free!

Tonight is Family Movie Night at our house. We eat pizza and popcorn in the family room and attempt to find a movie that appeals to everyone. That can be challenging at times, but I am optimistic about tonight. Rise of the Guardians is ready to load into the Blu-Ray player.

Tomorrow, we are planning to attend the Make-a-Wish Easter Egg Hunt at the Ogden Eccles Dinosaur Park. It will probably be really cold, but it sounds like it will be a lot of fun, so we are excited.

I am grateful to everyone who has followed our blog every day for the past few months. Now that our days are less newsy, we may not write new posts every weekday. We will still report every time something interesting happens – and it will! Our final scans and our Make-a-Wish trip are still on the calendar.

If you have not subscribed to Living With Burkitts, and want to make sure you don’t miss a post, now is a great time to do that. Just enter your email address in the right sidebar and every new post will be delivered to your inbox when it is published. I promise not to give your email address to anyone else.

Enjoy your weekend, everyone!

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Thank You

I know many of our blog entries have a common theme of gratitude for the kindness of others. I feel like I need to write one more as we are hopefully near the end of this trial. I don’t think you can go through something like this without being profoundly changed. The change that has been greatest for me is the extension of my appreciation for others.

Selfishness is a concept that is easily understood; the rewards of such behavior are immediately realized and apparent. Kindness is not as easily fathomed. I know why someone would try to get as much as they can while extending as little effort as possible and it usually disgusts me. A trip to Walmart, or an amusement park, will usually offer a cornucopia of base human behaviors. However, hidden behind this veneer of the visibly apparent natural man is an underworld of kindness seen at its fullest strength when facing a time of crisis.

I have been truly amazed at the capacity of people to be kind to others. And not just from those you might expect. One would think that family, ecclesiastical leaders, co-workers and close friends would reach out and help when times are difficult, and those people have not disappointed. However, we have been blessed with enough spontaneous, and often anonymous, cash donations to cover nearly all of our medical costs. We have received gifts from people we haven’t seen in years. Dear friends in the medical field have offered free and wise counsel.  It is surprising who reaches out, and who doesn’t. I have learned something meaningful about people.

Sometimes I feel encompassed by kindness. Random acts of selfishness and boorishness feel jarring instead of commonplace. A couple of weeks ago I was cut off by a car on the freeway. Anyone who has driven in Utah for any length of time cannot be surprised. I was surprised by how taken aback I was by this rude act. I started thinking, “Doesn’t this guy know this isn’t how people behave?” I worry that as Andrew’s cancer starts fading into the rearview of life that I will also be lulled into forgetting the important lessons I have learned over the past few months. I know the only antidote to future apathy is to jump in and be a part of extending kindness to others.

This world of kindness and compassion is one I forever want to be a part of. It is really easy when you think about it. My church offers an infrastructure of service opportunities. I haven’t taken advantage of that as fully as I should.

There are so many charities deserving of help. In the past, the charitable organizations that have received most of my money are those involved in research like the Multiple Sclerosis Society, Cancer Society, etc.… I now have a much higher respect for those who practice a more applied charity such as the Make-A-Wish Foundation, Primary Children’s Medical Center and HopeKids Utah.  These organizations provide something almost as important as life saving research. They provide motivation, hope, optimism, courage, and anticipation to children who need it when they fighting such a difficult battle. People who volunteer for these organizations are truly angels.

I am grateful to all who have asked how Andrew is doing. I love all those who tell me Andrew and our family have been in their prayers. I have received much spiritual endurance throughout this ordeal and much of it has come from the prayers of others. I am especially touched when I hear the prayers of children for Andrew. Their pure pleas always soften my hardened heart.

I also appreciate the warm thoughts from those who claim to be atheists or agnostic. I have a feeling God also hears their thoughts and counts them as prayers despite their best efforts.  I really wish I could list all those who have helped us through this difficult time. But there really are too many to list. I also wish I could express to everyone who has offered even the smallest act of kindness towards my family the extreme gratitude felt. We truly have been buoyed by all of you.

No act of kindness is wasted or taken for granted – at least not by me.  Thank you!

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Back to normal, and is that really what we want?

Today feels like one of our pre-cancer days. Andrew is acting like a typical six-year-old, and my to-do list is looking more like it did before cancer disrupted our lives.

After sending Madeline off to school, I got ready for the day and dropped Andrew off with my mom so I could go to a routine, but overdue appointment with my doctor. I waited for an hour-and-a-half to see the doctor for about ten minutes and I remembered clearly why it had taken me so long to finally make this appointment.

My next stop was Target, where I spent two hours shopping for Easter supplies, vacation supplies and a few groceries. Perhaps it would not have taken so long if I were more organized. It certainly would not have taken so long if either of my children were with me. I can’t say it was unpleasant to wander the aisles of Target by myself for that long, but by the time I was done, I felt like my day was getting away from me.

There wasn’t much leisure time to be found back at home. The usual chores beckoned. Madeline and Chris came home. Dinner was prepared, served and cleaned up. Chris had an evening obligation at church, so he left for that. Homework, piano practice, bedtime stories…

It’s nice to get back to normal, but in some ways it isn’t. Cancer has changed us and given us a chance to reconsider our priorities. We had a great life before and we have a great life now, but I wonder about those to-do lists. Are they filled with things that really add value to our lives? Am I using my time as well as I could?

With fresh perspective comes fresh opportunity.

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I survived the Kindergarten field trip

Discovery Gateway

Green Screen!

They should make t-shirts with that phrase for parent and teacher chaperones, especially when the destination is the children’s museum.

I have now been on this field trip with both of my children and have learned that chaperones spend a lot of time counting heads and running back and forth to the bathroom. Thirty minutes each way on a bus full of six-year-olds is really the highlight of the trip, though.

Discovery GatewayAndrew’s teacher sent me an e-mail about this field trip last week, but I didn’t tell Andrew about it until after his Complete Blood Count came back yesterday. His ANC (immunity indicator) was 2.0 – a little low, but not worrisome. His other counts were also low, but not alarmingly so.

Andrew was ecstatic when I told him we were going to Discovery Gateway in downtown Salt Lake City.

Andrew and I met his class at the school, but thanks to cancer, we dodged the bus experience and drove separately. Andrew was so glad to be going, he didn’t seem to care.

Andrew and I were assigned to the group where his best friend’s mom was the chaperone, so she and I were able to share the head counting, and chase four little boys in two directions at the same time.

Discovery Gateway is a fun place for children to learn and explore. On the main floor children build with construction equipment, run a home, fill up a car with fuel, go grocery shopping, go rock climbing or ride a horse on the farm. The huge water table or the ball “beehive” are usually my kids’ favorite activities on the lower level.

Upstairs, children put on plays, draw cartoons, anchor the news, forecast the weather and play with science toys. One of the museum’s most popular exhibits, a LifeFlight helicopter is open for exploration on the patio of the second floor. Our group made a beeline for it as soon as we reached the top of the stairs.

Discovery Gateway

One thing I am grateful for was that this really was a normal field trip in most ways. We did drive separately, and I was more obsessive with the anti-bacterial gel than I might have been otherwise, but Andrew had no trouble keeping up with his peers. He was able to play without any special limitations.

I am also thankful that Andrew is doing well without his nose tube. If our cheapo scale is correct, Andrew has actually gained weight since he vomited the nose tube last Thursday. The appetite stimulant, and maybe, just maybe, the natural healing process, seem to be working.

Yep, things are going well. Nevertheless, we remain cautiously optimistic.

Discovery Gateway

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Spotlight on HopeKids

HopeKids

Last Saturday, our family attended a special screening of the new Disney movie Oz: The Great and Powerful courtesy of HopeKids. We arrived at the theater bright and early in the morning to share this experience with a theater-full of families just like ours. Thanks to HopeKids and its sponsors, the movie, as well as popcorn and drinks were complimentary. HopeKids frequently sponsors fun family events like this.

HopeKidsThis is technically our second HopeKids event. The first was held in the hospital at the beginning of Andrew’s third round of chemotherapy. Valentine’s crafts and games were held in one of the hospital’s conference rooms, but unfortunately, our children didn’t get to attend. The hospital had just banned visitors under the age of 14 due to flu season, so Madeline was out. Andrew was hooked to heavy I.V. fluids, which made field trips like this inconvenient for him. So, Chris and I made a brief appearance and had the pleasure of meeting C.R., the president of Utah’s HopeKids chapter.

We have since learned that C.R. lived in Arizona when his own child became seriously ill, and eventually succumbed to her illness. Inspired by their local HopeKids chapter, C.R. and his family gave up his engineering job and relocated to Utah to lead a HopeKids chapter here full-time. We have been grateful for their efforts and we look forward to giving back to this organization and others that have helped us so much.

What is HopeKids? Here is the mission of the organization in its own words.

HopeKids provides ongoing events & activities and a powerful, unique support community for families who have a child with cancer or some other life-threatening medical condition.  We surround these remarkable children and their families with the message that hope can be a powerful medicine.

Currently, HopeKids has chapters in three states: Arizona, Utah and Minnesota. A fourth chapter in the Dallas-Fort Worth area of Texas is in the works.

If you are interested in supporting HopeKids and its mission, financial contributions, in-kind donations and volunteers are gratefully accepted. Learn more about these opportunities at www.hopekids.org.

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Buh-bye nose tube

I was hoping we would be rid of the nose tube by now, but not like this.

Just before dinner last night, Andrew started panicking for a drink of water, which often calms his nausea, but I couldn’t get one quickly enough. Andrew, who hadn’t complained of nausea all day, vomited up his nose tube. It wasn’t pretty.

One end of the tube was hanging out of his mouth, while the other was still hanging from his nose. While I threw a towel over the mess, Andrew went into the bathroom and pulled the tube out and removed the dressing from his face by himself. What a kid.

What does this mean to us?

I promptly called the on-call Nurse Practitioner at the hospital and asked what we should do. I hoped that the answer would be “No more nose tube.” That’s the answer I got… conditionally.

Chris cleaned Andrew up while I was on the phone and we weighed the boy as soon as he was dried off. If Andrew’s weight does not drop much by Monday, then we have probably seen the last of the nose tube. If his weight does drop, then our home health care nurse will have a fun job waiting for her on Tuesday.

In the meantime, we will pick up a new prescription of Megace – an appetite stimulant. Andrew will have to take that at least twice each day by mouth, which he will not enjoy. That’s the biggest thing we will miss about the nose tube.

I had just ordered two new cases of the tube feeding formula, which probably cannot be returned. They are vanilla flavored, and can be used as a protein drink, but who knows if we can convince Andrew to drink them. I’m going to try to stop the order if I can.

Commence Operation: Fat and Happy.

Tube free

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So, now what?

Thank you all for sharing our joy from the Bell Ringing Ceremony yesterday. It was such a big deal, and then we arrived home and thought, now what?

We can’t go back to our old lives yet. While we hope that any lingering cancer cells are gasping their last right now, Andrew is not officially cancer free. As you can see from the photos, he is not tube free either. The last round of chemotherapy was just as potent as all the others, so it is not unlikely that we will return to the hospital with a fever or some other complication in the next couple of weeks.

But oh, that light at the end of the tunnel is getting bright.

In most ways, we will spend the next couple of weeks in much the same way that we spent previous intervals between chemotherapy treatments. Andrew and I will stay close to home. He will get plenty of “rest”, meaning more TV and video game time than is good for him. We will see his home health care nurse twice each week for blood tests. We will hope to be as fortunate with his health as we have been after the last two big chemo treatments.

If all goes smoothly, we will return to the Hematology/Oncology Clinic on Good Friday. Andrew is scheduled for an echocardiogram and a CT scan. If there is no sign of cancer, they will pull the PICC line and the nose tube, and Andrew’s cancer will officially be in remission. Good Friday, indeed.

We will return for scans every three months for two years, and if the cancer doesn’t return in that time, Andrew will be considered cured. I like that word.

In the meantime, we might start dipping our toes in the waters of freedom. In the words of our attending physician, “Go for it! The worst thing that can happen is that you’ll catch something and spend a few days in the hospital. You could sit at home and end up in the hospital anyway.”

Okay, then!

I let Andrew take his birthday scooter outside for the first time yesterday.

We may attend the HopeKids private screening of the movie Oz this Saturday. We had RSVPed for that event before Andrew’s last chemo treatment was delayed.

Maybe Andrew will make an appearance at church – at least Sacrament Meeting –  for the first time since October.

We are making tentative plans to go away for Spring Break.

My last hesitation is school. Andrew would probably be fine once his immunity is back up, but I don’t know if I would be. I worry about those tubes getting snagged on something. Once they’re gone, Kindergarten here we come!

It’s a sunny 72 degrees (F) outside. After the winter of our discontent, the hopefulness of spring is more welcome this year than ever before.

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