Living with Burkitt's

One family's experience with Burkitt's Lymphoma

About Us

One month prior to diagnosis

One month prior to diagnosis

Our son Andrew was diagnosed with Burkitt’s Lymphoma in November 2012.  He was five years old. It took three weeks in the hospital and two surgeries to find out that a tumor was blocking his intestine. A few days later, we were told that Andrew has cancer. To read the beginning of our story, click here.

In late March 2013, Andrew was declared cancer free! We return to the hospital regularly for check-ups and we pray every day that the cancer will not return.

Our Family

Allison is a stay-at-home mom and freelance writer. In addition to this blog, she writes the family travel blog tipsforfamilytrips.com and is a contributor to the Deseret News and FamilyHow.com. Allison has promoted family travel on television and on popular family travel blogs nationwide.

As Andrew’s primary caregiver at home, Allison has picked up all kinds of new skills, such as administering I.V. medications, flushing a PICC line, changing a sterile dressing and figuring out all kinds of oral medications.

Chris is an elementary school principal and former school psychologist. He is an excellent researcher and he understands statistics, which are useful skills in our situation. Chris enjoys writing in his limited spare time.

Chris is also best at giving drama-free baths without getting Andrew’s PICC line wet and hunting down the foods that Andrew is willing to eat or drink at all hours of the day.

Madeline is eight years old. Being the sibling of a cancer patient is difficult, but she is making the most of it. She quickly found her way to the playroom at the hospital and her new career goal is to be a Child Life Specialist. She is a social butterfly who loves art and fashion.

Andrew amazes everyone around him with his resilience. He loves all types of animals and dinosaurs and can recite an impressive number of animal facts. He loves the Magic Treehouse book series and we have had the opportunity to read plenty of them in our hours at the hospital. Every day, he resembles the superheroes he loves even more.

Until Andrew was diagnosed with cancer, we were a healthy, happy family. We still do our best every day to be a happy family, but this experience has changed our lives forever.

Contact Us

We welcome comments on this blog and we read every one. Thank you for sharing this journey with us and for lending your support.

You can also contact Allison by email at allison AT tipsforfamilytrips DOT com. Please, no requests for sponsored links or sponsored guest posts.


12 responses to “About Us

  1. Kiran Mandava says:

    Hello there, I came to know about your blog through the Burkitt’s lymphoma Facebook page. My name is Kiran and my older kid (7 year old) is diagnosed with the Burkitt’s lymphoma). After reading through your blog I realized there were so many things common between the two cases. We lived in SF bay area till 2011 May and moved to India, and came back to US when the kid is diagnosed with Burkitt’s on Nov 11th 2012. My employer was good enough to move me back to US for treatment. He started his treatment on Nov 20th at Lucile Packard Children Hospital at Palo alto. He is being treated with ANHL01P1 protocol. Including the first COPR session we are done with 5 chemo sessions already. We just finished the last one last Saturday, so we are in the waiting period for the counts to go down. (my kid was diagnosed with stage 3 but the doctor wanted him to go with the stage 4 protocol).we left our younger one with my parents back in India, we will bring him back once we are through this treatment cycles. Was just wondering if you would be able to share the treatment protocol your kid is on, if it is ok with you. I totally agree with you this is the toughest part of my 37 year life and I still can’t hold tears when I talk to the close ones. (I am the father and my wife seems to be taking it little better). My kids name is Nikhil.

    • Allison says:

      Hi Kiran. Congratulations on completing treatment! I hope Nikhil’s lymphoma is gone for good and that your family will be reunited soon.

      I don’t know the name of our protocol, but we have been told it is the standard protocol for Andrew’s situation from the Children’s Oncocology Group, a consortium of all the major children’s hospitals in the U.S. Andrew was diagnosed at Stage 2, though we were told that stages don’t mean as much with lymphoma.

      Our course of treatment has been two COP, two COPADM and two CYM. The COPADMs and CYMs are each 3 weeks apart. We received two COPs at the beginning instead of one because Andrew was not yet healthy enough after his surgery to endure the heavy COPADM. The second COP gave him more time to heal without allowing an aggressive cancer a chance to grow. I have written two posts with more detail about our chemotherapies. Here are the links.

      COPADM: https://livingwithburkitts.wordpress.com/2012/12/28/bring-in-the-big-guns/
      CYM: https://livingwithburkitts.wordpress.com/2013/02/11/bingo/

      Best wishes to you and your family!

      • Kiran says:

        I am sorry If i gave a wrong idea that we are done with the Chemo. Nikhil’s plan looks similar to Andrew’s except that Nikhil still has 4 more maintenance chemos after the 5 main ones. (1COP + 2COPDAM + 2CYE)..I think maintenance is there if it is diagnosed as stage 3 or stage 4…at this point we are done with the “1COP + 2COPDAM + 2CYE”..but the ugly part is even the maintenance ones are strong..(1COPDAM + CYE + COPR + CYE..each are 28 day cycles…so 4 more to go)…

      • Allison says:

        I see. We are not scheduled any maintenance chemotherapies after our four big cycles, so I didn’t realize that those would be part of your plan. Those are some tough maintenance treatments. I hope that everything goes well for your family, with few complications and no delays.

      • Sonil Singhania says:

        HI Kiran and Allison……Hope both the boys are doing great and have got back to their school routines. My son, Aditya (13 years) was diagnosed with stage 4 Burkitts Lymphoma on 20th Dec 2014. We have just completed 9 cycles of chemo- the treatment took 6 months. We brought him to Dr Allen Yeoh at NUH, Singapore after the first COP cycle in Delhi. He is due to get some immunoglobins next week before getting his Hickmans line out. Since both of you have finished the treatment 2 years ago,,,I was wondering how has the journey been post treatment, especially for the first six months. How often did you have to do the FBC- full blood counts- what other measures did they follow to keep a track post treatment? I think we still have to keep them away from crowded places and continue the food restrictions. How long did it take for their immunity to fully recover and when did they get back to school? my son cant wait to eat sushi.

        Also, do any of you have pets at home. we have been in Singapore but when we go back to Delhi in 10 days we have a pug at home.

        Sonil – Addy’s mom

      • Allison says:

        We have had few complications since the end of my son’s treatment. We returned for CT scans/ultrasounds and blood tests every 2-3 months for the first 18 months. Then six months. Now we will return once a year. Our doctors believe that my son is cured of Burkitt’s Lymphoma, but want to watch for long-term complications. So far, there have been none.

        We were given approval by our doctor to take a Southern California vacation about 3 weeks after his last treatment. He felt and looked well. That was Spring Break, and he returned to school immediately after we came home. We were extra-vigilant with hats and sunscreen for a while after that, and watched for anything abnormal, but otherwise resumed our pre-cancer life. We do not have pets, so we didn’t ever discuss it with our doctors.

        I’m glad to hear that you are nearing the end of treatment! Best wishes for your son’s recovery.

  2. Nicky says:

    I pray for your son and hope he is doing okay. I was diagnosed in 2011 with Burkitts at the age of 43. I spent about 4 1/2 months hospitalized that year. I am in remission. I cannot imagine a child enduring those treatments. It is a life altering experience your family WILL never be the same, but its not suppose too. You will appreciate all the little things in life and realize that nothing is really worth worrying about if you can’t change it at that moment. Hugs to your family!

    • Allison says:

      Thank you, Nicky! Andrew is now in remission too, though we will return frequently for checkups. We have been changed, and I still mourn our pre-cancer days, but we have received many blessings and are hopeful for the future. Best wishes to you! May your cancer never return.

  3. Kym Langford says:

    Hi Allison,
    I am brought to tears reading your post. Our family as well heard the devastating news that our precious 3 year old daughter Bella had cancer. It was wrapped in her small intestine and was a bit larger than a golf ball when they removed it. Her first surgery was June 16th 2013. Bella had Burkitts lymphoma as well. Currently she is doing great. No more treatments, she finished 3 weeks ago. I also wanted to say that we are going on a make a wish trip to Disney over Thanksgiving break. We are thrilled, thanks for all the great info from this post. Please feel free to write me back.
    Blessing,
    Kym

    • Allison says:

      Yes, your story sounds a lot like ours. I’m so glad to hear that your Bella has completed treatment and is doing well! I’d love to write you back. I’ll send you an email soon.

  4. Christine Loggins says:

    Such a wonderful happy story! I stumbled across this page by Google searching red mans, to show someone what it looks like. Like your son, mine was also diagnosed with burrkits lymphoma, also at age 5. That was the most trying time of my life, the hardest thing a parent could ever have to endure, watching their sick child go through so much, and praying it will all be ok, all the while keeping a brave face for the child and all around… Our story too has ended well. My son is also cancer free! And through all the struggle and pain came the best life lessons. I am grateful for each day we have each other, and don’t take for granted the time we may have left. Thank you for sharing your story.

    Christine Loggins

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: