Monday, April 20, 2015


Superman Sam shirts have sold out. What an amazing outpouring of support for these shirts. I have some amazing photos that his mother shared with me. These photos give you a taste of what an amazing boy he was:

I was recently asked to write a letter to request more support for my fundraising campaign. It was a little bit of a challenging request because I feel so much guilt for what Kevin has to endure (and my kids) because of me... I have mentioned this a time or two before - but man, it just doesn't get easier.

I am hopeful that the donations don't continue to slow down. I am hopeful that people will contribute whatever they can - nothing is too little. I am hopeful that someday, leukemia and other blood cancers, will not be a life threatening disease. 

I am writing to ask for your support to reach my goal of raising $50,000 by May 15th, 2015 for the Leukemia and Lymphoma Society. This fundraising campaign is going on throughout the nation; whomever raises the most in each state will be named the Woman or Man of the Year.
With that said – I don’t care if I win. But I desperately care if I hit $50,000. Once I hit that dollar amount – I have a say in what type of research the money will go towards. I will be directing this money to AML research. I have focused my entire NP career on pediatric cancer; specifically pediatric AML. I see new families and children diagnosed with leukemia frequently. I see families and children who have relapsed leukemia frequently. I hear the stories of how they thought something was wrong – but never did they think leukemia.
On May 28th, 2013 my husband was diagnosed with blast phase-CML (a cancer similar to AML that behaves and needs to be treated like AML). We met Dr Carlson (Kevin's Oncologist) the first night in the ED before he was transferred to the ICU. He spent weeks in the hospital getting intensive chemotherapy, fighting life threatening infections and getting almost daily blood and platelet transfusions. He unfortunately needed a bone marrow transplant to live that resulted in more intensive chemotherapy, life threatening infections, horrible side effects and daily blood and platelet transfusions. He had a BMT under the supervision of Dr Hari and his team. The process was difficult but was his best chance at survival. Today, as Kevin's recovery is underway, he must take nightly chemotherapy pills. This little pill can push his body’s tolerance limits; but he takes it because he has too.

I can’t believe this happened to us. I still can’t. I am still stuck in the days prior to his diagnosis – never once did leukemia cross my mind. He even said – “what if I have cancer”. I told him to shut the F%$^ up and he didn’t. I was so, so wrong. I didn’t notice the months of symptoms. This is what I do for a living and he almost died from something I did not notice. The amount of guilt and panic I have about this is unreal – it is a soul crushing, self-hating, pure disgust of myself.
This fundraising campaign has given me an outlet. Maybe, if I can reach this $50K mark – I will feel like I have done something. Maybe, this will help me deal with the fact of what I missed. Maybe… Please help me. I am worried that I will not get to $50K. I don’t want to deal with more disappointment in myself. Please consider a donation of money. When you think of an amount – please think of more. Future patients and families are counting on you. This disease is horrible and it destroys lives. Please help me raise this money and advance the cure!  

Thursday, April 16, 2015

Life after Transplant

Life after bone marrow transplant hasn't been easy; but he is here - and that is what matters.

Kevin generally has good days but there have been a few bumps along the recovery path.

He still has to take chemotherapy every single night.
This one pill can cause so much destruction. It's scary.

A few months ago Kevin had a really bad week. He was having these head pains - like a stabbing feeling in the back of his head that literally brought him to the floor multiple times a day. It was awful. So awful. I couldn't do anything to make him feel better except stay home with him and the kids and make sure he was safe. He couldn't even bring himself to move for about a week. I was terrified that he had relapsed. I was so scared that there was a mass of leukemia cells in his brain causing this. A few days later he had a CT scan of his brain which was normal and the headaches just stopped.

A month or so after that he started having horrible nights. I would wake up to him moaning and unable to stand up because of the pain he was in. Other nights I would wake up to him projectile vomiting all over the bathroom. All because of this chemo pill that keeps his leukemia away. He needs this pill to live - but sometimes it is hard living taking this pill.

In February we went down to Nassau for my brother's wedding. It was so bad for Kevin. Every night I would lay in bed next to him while he slept and just cry. He had so much belly pain that he couldn't really function. He would try and  participate in the festivities but it was hard for him. His body is still at risk for getting infections - and he got one. It took at least two weeks for him to get better.

With every single side effect he gets from his medications or a virus - I am scared that it is a relapse. I know the odds are that it is a side effect of chemo or an infection - but my mind thinks leukemia. I don't think this reaction will ever stop.

There has got to be better treatments for cancer. Research is really the only way to make sure this happens. Everybody who has a cancer diagnosis deserves the chance to enroll onto a clinical trial. Unfortunately, this is not the current reality. Cancer research costs lots and lots of money. A cure is not cheap. Organizations like the Leukemia and Lymphoma Society help to fund research. My fundraising campaign will help future patients. So back to my goal in the next 4 weeks... please consider donating. Please.