Relapse

As we celebrated Ed's 7-year post Stem-cell transplant this past April 15, this is certainly the last email I thought I'd be writing. There's no easy way to say this, so I'll just have out with it -- Ed has relapsed with Leukemia.

Many of you may remember that Ed was originally diagnosed with Acute Myelogenous Leukemia (AML) in December 2002. He achieved remission in February 2003 and had an unrelated Stem Cell Transplant in April 2003. We have been very fortunate in that since then Ed has been very healthy and relatively issue-free.

A few years ago, Ed began to experience some neuropathy in his hands and feet. We've been successfully managing his symptoms with the help of a neurologist at the Detroit Medical Center. Since March 2010 however, Ed's symptoms have quickly escalated and he's become profoundly affected by the neuropathy in his legs and feet. He's completely lost the use of his right foot and needs the assistance of a cane to walk; he also has to deal with intermittent pain in both his legs and his hands. We'd been treating his symptoms with sporadic success when he woke one morning about 3 weeks ago with a severe headache and nausea. He also began to experience sporadic double vision that turned to constant within one week of onset. Our neurologist ordered an MRI which revealed an enlargement of the orbital eye muscle to twice the normal size. From there, the doctors ordered a biopsy of the eye muscle and a spinal tap. The results of the spinal tap were negative, but the eye muscle biopsy revealed that leukemia cells had infiltrated the orbital eye muscle.

The Bone Marrow Transplant team that saved Ed's life 8 years ago on on board with us again- this time at the Karmanos Cancer Institute in Detroit. Immediately upon getting this initial diagnosis, they performed a bone marrow biopsy to confirm what, if any, activity was occurring in Ed's blood and marrow and also to analyze at the cytogenetic level what kind of Leukemia he has. So far, Ed's blood and bone marrow do not show any leukemia activity, but the doctors tell us it's inevitable that it will show up there. We also received word today that Ed does have the same Leukemia as last time, with the same chromosomal abnormality. It is unclear if the neurological issues Ed has been having are related to the leukemia; our doctors have advised that knowing won't alter our treatment plan. For now, Ed is receiving daily radiation treatment for the eye infiltration. We're hopeful that his vision will return to normal within a week or so. We'll be meeting with the team next week to determine next steps. Most likely, Ed will be hospitalized to receive induction chemotherapy.

As you might imagine this news has really thrown us for a loop; it's just insane to think of going through this again. We shared the news with Regan and she was understandably upset, but took it in stride overall. Fortunately she has lots of school and dance activities to keep her occupied. For now, we're trying to get through each day as normally as possible; trying to enjoy the mundane, focus on our kids and make things as normal for them (and us!) as possible. Most importantly we're trying to rally and find the strength to know that we can go through this again and have a successful outcome. The odds were not good last time; and you can bet they're not good this time either. But, we will resurrect our mantra that "tomorrow will be a better day".

Many of you may be wondering what you can do to help. I can say with absolute certainty that your prayers for a good outcome are absolutely needed. You also might consider donating blood at your local blood bank; and lastly consider signing up with the National Marrow Donor Program. It takes just moments to register and if you're called to be a match, you could save someone's life.

We will continue to send out updates as we get more information. Please feel free to forward this on to anyone we've inadvertently left off this distribution. For now, we'll leave you - with love and highest hopes!

Ed, Kelly, Regan and Ryan