Living with Burkitt's

One family's experience with Burkitt's Lymphoma

Our journey begins

on November 27, 2012

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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37 responses to “Our journey begins

  1. Carltonaut says:

    Thanks for sharing the details. Your family has been through a lot, so if there is anything we can do to help, please let us know. We will keep you and your family in our prayers. Keep an eye out for the Utah Jazz – they tend to make a visit to Primary Children’s this time of year. The Utah Grizzlies have usually stopped by, too. 🙂

  2. Nancy Ellison Martin says:

    So sorry you guys have to go through this!

  3. Sheraine Bruce says:

    Allison- thanks for taking the time to share your experiences. Your family and especially Andrew been on my mind ever since I saw the word ‘Lymphoma’ on your FB post. (Heart stopping) I’ve got a son the same age, and I can’t imagine what you’re going through.

    I live in Layton again, I want to help in any way I can.
    It sounds so empty, but please know that you’re in our thoughts and prayers,

    I adore you, hang in there.
    Sheraine

  4. Heather Clark says:

    Oh my goodness, you guys. I was in graduate school with Chris eons ago – I haven’t seen either of you since your wedding umpteen years ago – but you are all in my thoughts each day and I am wishing you all the very best. I know this is hard on each and every one of you. Many hugs and wishes for good health to you and your family.

  5. Poulsens says:

    All of you are certainly in our prayers Allison, every day.

  6. Amy Dover says:

    We are thinking of you and praying for your family. Sometimes life just isn’t fair!! Our kids ask about Andrew a lot and Olivia even made something for him yesterday. We’ll see if we can get it up there soon! All the best..

  7. jana says:

    I love the blog, it’s nice to see a picture when I can’t be there in person.

  8. Sarah Workman says:

    Thanks for letting us know. I will forward this information to my family. We are all praying for you and your family. Yes your life has changed and it won’t be the same, but in time you will have a new normal. This time will be a learning and growing time in all your lives.(even though it sucks) You will all be stronger for it. You and your family are loved by so many, Please feel our love and use it to buoy you up when you feel you can’t handle any more. Sometimes you can just focus on the next hour or the next 10 minutes.I wish you peace.

  9. Pam Campbell says:

    We are thinking of you guys and hoping and praying for the best!

  10. Paige Hill says:

    Allison,
    I am so sorry for all your family is going through…so heartbreaking. We are praying for Andrew and your family. We would love to help in any way! So glad you decided to keep a blog so we can keep up with what’s happening. Hope to see you guys soon! Take good care!
    Paige

  11. Greg and Annette Vernon says:

    Chris, Allison, We are saddened to hear of this challenge that has come to your little family. Please know that our thoughts and prayers are with you and may you find strength and comfort in the Gospel of Jesus Christ. We are always available if you need anything at all.

  12. Mary Colins says:

    We love you guys and are keeping Andrew in our prayers. My dad added Andrew to the prayer list in the Mesa temple last week. Heres going for hope and lots of faith.

  13. Jeff and Tracy Simmons says:

    What a hard thing for your family to be going through. Can’t help thinking about you and your family. We are keeping you all in our prayers.

  14. Polly says:

    Thinking of you and your family. Many, many thoughts and prayers are with ALL your family. Love you

  15. Bonnie says:

    Oh Allison! I am so sorry this has to be a trial for you and your family. I know it is hard to watch your baby be in pain and suffering. I’ll be praying for you and your family. There must be a plan, trust Heavenly Father to bless you. Thank you for the blog. xo

  16. Jennifer S. says:

    I am glad to hear the details so that we/I aren’t bothering C. with questions. I want you to know that your prayers are with you and that what a BLESSING to live by a GREAT Children’s hosipital. This blog is great therapy for you and for everyone else who cares about your family.

  17. Cathy Ashman says:

    Allison, I thank you for the blog, it makes it evident not only of the struggles your family is enduring but of our Heavenly Father’s love for each of you. All of you are in my prayers, hoping that you can be home soon.

  18. Ashley Pabst and family says:

    We sure love you guys and are praying for you daily. Your family is strong and will be able to get through this! Laurie and Benson ask about Andrew and Madeline a lot. We miss you and hope to see you soon. (Our cars are getting lonely for their twins, too.)

  19. Tracy Pratt says:

    Allison & Chris, We have added Andrew & your family to our nightly prayers. His name has been added to the prayer list at the Salt lake Temple & the Bountiful Temple as well. I know there is power in prayer. We pray that you feel the embrace of our Heavenly Father’s arms & find peace during this trial. We love you all! It is a shock to see so many people we love that are a part of our Big Savior of the World experience going through such huge physical trials right now. You are not alone & we are all here for you. We have 365 people in Savior of the World right now. Would you feel comfortable if we shared with them about Andrew & asked them to add him to their prayers as well? I know it wasn’t by accident that you were called to serve as the publicity Manager. Please get rest when you can & let us know what we can do to serve you. Sending you a great big squishy hug filled with love & good healing energy my friend.

    LOVE YOU!!!
    Tract Pratt

  20. kim says:

    Allison, thank you for sharing this story through a blog. We are thinking of you guys and pray continually for Andrew. I’m sure that you are struggling a lot more than most of us know….you are so strong and positive! We sure miss you guys a lot, especially Andrew and Madeline! If there’s anything we can do at all, please keep us posted! Love you guys!
    Kim

  21. Ady Hahn says:

    Allison, I’m so sad to hear about Andrew’s illness. He’s such a sweet little guy. We’re all praying for him. Thanks for sharing your story with us.

  22. Robyn says:

    I cannot look at the pictures without crying. I wish it could back back to the way it was too. We will pray and we love you.

  23. Nolan Petersen says:

    We are indeed shocked by the terrifying events you’ve been through and know that you’ve been blessed and strengthen by the Comforter to endure such trials. And what blessings have been showered upon Andrew to come through it all! We understand that the chemo still hasn’t started so bless his heart: It’s impossible to imagine how such a little boy could endure all that! We want you to know that you and Andrew are in our every prayer that Andrew will be bless with complete recovery!

  24. bales says:

    Your family is in our every prayer. Please call if you need anything at all. We love you!

  25. Katie Baird says:

    So sorry to hear that Andrew and the rest of you are having to deal with this awful illness. I am praying for your and appreciate your blog updates. We love you all!!

  26. Michelle Brennan says:

    Best wishes for successful treatment without complication for your little boy. Hopefully he will be on the road to recovery soon. Prayers from Connecticut coming your way.

  27. From one mother to another, I’m so sorry. This puts everything into perspective. Thinking of you guys!

  28. Circe LeNoble says:

    Wow, Francis, I am so sorry to hear the struggles your family are having. We’ve been there with the serious health problems and uncertainty and fear of a diagnosis. Once Savannah’s diagnosis came through with Celiac disease, we were immediately on the road to recovery though. We are sending all our love and warm thoughts to you and your family. I look forward to seeing pictures of everyone at Disneyland.

  29. Caroline Earl says:

    Allison, I am thinking of you and your sweet family. Andrew is so brave. You have the cutest kids. I hope all of you can hang in there. You are in my thoughts and prayers. Please keep me posted. 🙂

  30. […] family’s travel plans may be on hold due to my son’s recent cancer diagnosis, but Tips for Family Trips lives on. I still have great local places to recommend and […]

  31. […] November 2012, my son was diagnosed with Burkitt’s Lymphoma. When we finally started the calendar, at the last minute of course, I found myself sorting through […]

  32. […] UPDATE: This was just the beginning of  a long journey. My son was diagnosed with Burkitt’s Lymphoma a couple of weeks later. Read the rest of the story and keep up with his progress at livingwithburkitts.wordpress.com. […]

  33. Jennica says:

    I found your blog looking for someone else. We are part of the Burkitt’s family. My son was dx dec 30, 2011. We finished his chemo July 13,2012. It is a hard bumpy road. It is tear jerkily painful to watch your child suffer. Knowing you cannot to much more to help. Prayers for you Andrew.

    • Allison says:

      Thank you Jennica. I’m glad to hear that your treatment is behind you. I’m looking forward to that, because you’re right. This is hard. Best wishes to you and your family.

  34. Dianne Murphy says:

    It was nice hearing from you Allison. Although Al & I are not there very often, your all in our thought and prayers during such a difficult time. Please give Andrew a hug for us. Al & Dianne Murphy

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