You made it! Here it is... the blog where you get to sit back and laugh at - or be completely horrified by - life with 5 kids, 2 parents, some frogs, a cat & a rabbit (and those are just the creatures we know about).


Cure JM!

UPDATE: Ann's 5K that inspired this post has passed, but there is a current fundraising link that she has that benefits the CureJM foundation. Please read the story and consider donating here. Thanks!

One of our babysitters during the week is my cousin, Ann Marie. She watches Charlotte (& sometimes Sean) two days a week when I am at work. She is one of our army of caregivers who makes my crazy life a lot easier every week. Ann is married to my cousin, Mike, and they have three wonderful boys, Ryan, Tyler, and Cameron.

In addition to their terrific boys, they had another adorable son, Mikey. Here is the beautiful piece Ann wrote for Mikey's memorial website:

Mikey was a beautiful, smart and healthy little boy. At the beginning of 2005, everything changed. First, Mikey started with a rash on his face. We went to see Mikey’s doctor and he said it was Fifth disease. We went back because Mikey was getting muscle weakness. He couldn’t sit on the floor to play with his toys or even go upstairs to see Papa and Nana - which he always did. The doctor kept telling us it would go away. 

We went to another doctor's office. They told us the same thing. They even told us "I would send him to a rheumatologist, but they will laugh at me because he is walking." I decided that wasn't an acceptable answer. I took him to the ER. After all of that, we got referred to a rheumatologist. We went a few days later and they told us that Mikey had a rare auto-immune disease called Dermatomyositis. When we were told this we were very upset. We had no idea what to expect. We told ourselves that we would get Mikey through this. He was one strong little boy. That’s when something went wrong. 

Mikey went into the hospital for 3 days to start his treatment (steroids and methotrexate). But, during this time, Mikey developed possible pneumonia. The doctors weren’t sure so they treated it as pneumonia and continued with his JM treatment. One month later, on April 2, we were back in the hospital. Mikey was sick again. (We told the doctor he was sick again, during his infusion, but we were told he was fine and continued with the infusions.) He was admitted into the hospital because he couldn't breathe and his heart rate was through the roof. 

It took over a week to finally know what Mikey had. He had PCP pneumonia. At this point Mikey was in the ICU on a ventilator and in a drug-induced coma. He was then put on ECMO because his lungs couldn’t handle the pressure of the ventilator anymore. ECMO is a lung bypass machine. It would give Mikey’s lungs a chance to rest. About a week into being on ECMO, we saw some improvements. We thought he was going to come off ECMO. But when it came time to wean him off, he couldn’t tolerate it. His lungs were just too sick. We were finally told he could be put on the lung transplant list. It was a very tough decision to make. If he did get the transplant in time, he could suffer a lot. Lung transplants are the most difficult to do. We decided to at least put him on the list, then we would see how things went. We wanted him to have every possible chance. 

Mikey’s condition started to get worse. He was already on ECMO for 40 days. That was the longest that they had had any patient on it. So, if anything came up they weren’t sure how to handle it. He was already starting to have some complications. We didn’t want anything to happen that could cause Mikey to suffer. We had to come to the decision to let him go. This is a decision that no one should ever have to make. How could any parent make this decision? We put it off for a few days. 

Finally, that day came. I think that Mikey told us that it was time. He fought so hard the whole time, but his numbers were starting to drop. We called our family and friends to come and be with us. Mikey was with everyone that he loved. Later that night, Mike and I were able to be alone with Mikey. We talked to him and told him how much everyone loves him. I held him while the machines were turned down. It was the first time I was able to hold him in almost 2 months. At 2:20 am on May 27, 2005, Mikey passed away. 

As a mother, I cannot even begin to fathom the pain Ann and Mike must feel every day missing their little boy. I have to say, though, that they are two of the nicest, most positive people you could ever meet. It really puts things into perspective for me, when I let stupid little things get me down.

In a few weeks, Ann is running a 5K in honor of Mikey to raise money for the Cure JM foundation. She has been training and fundraising. I am writing this post to appeal to any of you out there who would like to donate to such a worthy cause. No child should have to suffer as Mikey did. And no parent should have to go through what Ann and Mike have gone through. So, take a minute today and make a donation. Any amount is another dollar toward helping find a cure for Juvenile Dermatomyositis. THANK YOU!

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