Annie, Zen and I are on Spring Break in Utah. Unfortunately we are not hiking slot canyons and have no more hot springs in our sights. We are very sad to say our son Zenzi has leukemia. Specifically, T-Cell Acute Lymphoblastic Leukemia (ALL). The T-Cell type makes up about 15% of all ALL cancers, the B-Cell type makes up the other 85% of cases.
Thankfully, this is a very curable disease but will require rigorous chemotherapy and a lot of time.
We had made it all the way to St. George, UT but the last 4 hours were pretty rough. Z was very low energy and had been throwing up most of the day. We took him to the local hospital expecting to hear he had mono or strep throat but the bloodwork contained a far more dire diagnosis.
Tuesday evening Z had a 90 minute surgery where they took bone marrow samples, inserted a (semi-permanent) port catheter and performed the first of several lumbar punctures to diagnose spinal fluid. We also began the first 3 of 5 chemotherapy medications with other combinations expected over the next 28 days. Interestingly enough, this chemo protocol is a nationally accepted regimen which begins killing the leukemia cells immediately (in case you’re really curious or in the medical field, all the medications and their dose dates are listed below).
There are so many different side effects and things that might happen so we will simply take each day as it comes with the hope and understanding that after 28 days, all of the leukemia cells will be dead and flushed, and the side effects will begin to wear off. (Please send any and all suggestions and amazing remedies to Miss Annie!)
We expect Z will be in the PICU at Primary Children’s Hospital in Salt Lake City for at least a week if not two. There is a good chance we may be here 4-5 weeks before Z’s blood cells are strong enough to withstand the world at large. We will take each day as it comes and already know and feel all the love and support we receive from every one of you. Thank you.
Annie has already talked about starting a blog and who knows what Z will do! Zen has a pretty darn good attitude and is ready to take on this next challenge. Ben flew in last night from Florida and will join us in SLC for a few nights before heading back to join his Up With People cast and head to Mexico for the month of April. Annie and I are grateful to have a room in a local Ronald McDonald House
Thank you all for your love and support. We love you all!
Marc, Annie, Ben & Zenzi
Vincristine- Days 1, 8, 15, 22
Dexamethasone- 2x Daily for 28 days
Daunomoicin- Days 1, 8, 15, 22
Pegasparagase- Days 4 & 18
Methotrexate- Days 8 & 29, possibly Days 15 & 22 as well
I am not quite sure how this works- does an update go to you if I make a new journal entry? I suppose if you signed up to have it sent to you then it will update you!
It is painful to come to this sight. I was suppose to be posting updates on Z's treatment. We never got a chance. I am angry, sad, disgusted, hurt. What a journey. I know Z does not want me to wallow. I know Z wants me to live. His body couldn't but mine can. His spirit is all around. I will make Z proud.
Z loved instragram. I need a way to share with folks and remember/ honor Z. So I have started an instragram account- welovezenzi. Please follow me. Some posts are inspirational but others will be hard to read. Our society seems to avoid grief, or grieving people. Let's put a stop to that. Be vulnerable. All the advice to us grieving parents says FEEL YOUR GRIEF. Walk through it, not around it. Also find joy, even if it is only a little at first, it is there. Read about an amazing thing that happened to us yesterday, on the instragram account. If you don't have instragram, start an account and only follow me if you don't want to deal with it all. Download the app and it will take a few minutes to get started. Join me on my journey. Hell yeah I am sad. My life is shattered but I will rebuild, remembering and honoring my child. I have a lot of people to help heal as well. I remember ZENZI!