Cuts for a Cause

Today we had the privilege of participating in the Cuts for a Cause to benefit Tufts Floating Hospital. I can not say enough about how gracious the Bruins players that participated were to the kids. Mac was very nervous so once the clippers were on hand he did not want to do it. Luckily, big brother Liam came to the rescue and took over. I can't blame Mac. If Chara was sitting in front of me I'm not sure I would have wanted to take clippers to his head either. I have to say, the players today really showed what it meant to be a role model. They were friendly and patient even when some people where pushing past the kids to get an autograph. We made some really great memories today thanks to the people at the hospital and the Bruins!

Busy Week

We all had a busy week this past week. Mac continues to go to radiation Monday - Friday. This week he got chemo as well on Monday. He continues to react well to his treatments. He was actually out riding his bike on Monday afternoon. We also went to clinic everyday. Monday - Wednesday they checked his blood cell counts and hydrated him via IV for a few hours. It made for really long days at the hospital. So Wednesday night a visiting nurse came and got us all set up at home to hydrate Mac overnight with a pump and IV. This also eliminates the need for me to constantly remind him that he needs to be drinking! Friday his red blood cells were a bit low so he got a transfusion. It was amazing to watch the color return to his face after only 10 minutes into the transfusion!

Mac will be home all next week with us!

"Be faithful in small things because it is in them that your strength lies."
Mother Teresa

Super Mac

We are almost half way through radiation! Our final session will be on April 11th. Mac continues to amaze me. He is not really drinking or eating enough so we have been going to the clinic before radiation for hydration. Today he got hydrated, sedated, had radiation, returned to clinic to finish hydration, got chemo and then returned home. I thought he would nap since it was a very long and busy day, but instead he went out to play ball and ride his bike with Liam. I thank God everyday for giving Mac not only the strength to get though his days but to exceed our expectations. He had yet to complain about anything. Although with the new type of dressing on his central line I have to wrap almost his whole upper body in Glad press 'n seal before his baths which he did say he "wished he didn't have to do". He is scheduled to be home the rest of this week and next. I talked to his nurse today and hopefully he will be admitted the following Monday instead of the scheduled Wednesday. He will be in for at least 6 days the first week of April and we are hoping we will be home that Saturday in time to celebrate Easter at home!

Mac's hair is thinning quickly. I have mixed emotions about this. I have no doubt he will be as handsome as ever, but have a real fear about him being bald. Not because of what he will look like but because everyone will know he is a child battling cancer. Up to this point we have been able to go out and pretend we are a "normal" family. The whole world will now be aware of our "new normal" life that revolves around medication checklists, flushing of central lines, and our constant reminders for Mac to drink something. To many this may not seem like a big deal, but it was my oasis. My time away from hospitals and my home with the constant reminders of this horrific disease.

Each day brings another step on this journey we never wanted to travel but could not have asked for more supportive family and friends to walk with. Thank you all for standing by us and continuing to pray for Mac. We could not ask for more than to have our good days outnumber the bad ones and that is exactly what God has given us so far!

Monday, March 12th

Mac has done amazing this round of chemo. Although we remain in the hospital because of skin irritation around the port site  I am optimistic we will be discharged soon. They are trying a new type of dressing...hopefully this help! I can't wait to get him home to enjoy this nice weather I keep hearing about.

It was funny today because everyone was saying how beautiful it was outside and as I sat here looking around I couldn't help but feel the same way about the BMT unit! It has been so nice here, especially the last couple of nights. After dinner Mac will join 2 other little ladies in the unit as they all ride their tricycles in a circle around the nurses station. The moms will pull up chairs to watch them and chat. I couldn't help but compare it to hundreds of other neighborhoods around New England tonight. Kids were probably outside enjoying the extended sunlight and warm weather. Although we have no natural light in that area and there is no fresh air I sent Mac off to ride his bike telling him to "be careful" and "come home when the streetlights come on". This has become our 2nd home and although the neighbors change frequently I know if ever I needed anything I could always find someone to help! Last night was like a block party when one of the kids brought their IPAD out to play music has they rode their bikes. The irony was not lost on me when the song they chose to play in the Pedi Oncology Unit was Beat It by Michael Jackson. As it played and I looked at these kids I said a prayer that each and every one of them "beats" their cancer!

Tufts Harbor Walk & Run

One week down...

Well, we have successfully completed one week of radiation! Today was a bit rough though. Mac decided he did not want to be sedated. He screamed, kicked, and tried to rip the tubes from his catheter away from the doctor. It is so hard to watch him go from that to sedated in a matter of seconds. Hopefully next week will be a little bit easier for him. On the ride home we talked about it and he said he did not like the way it felt when the propofol is injected. Next week the plan is to try to distract him with either a Child Life Specialist or hypnosis. I asked if once we went home they could hypnotize him so that every time I clapped my hands he would immediately go clean his room.... sadly they said no : )