Radiation days 1 & 2

Mac began radiation yesterday. The doctors were amazing! They went out of their way to make both of us comfortable. One of the sedation nurses even made Mac a Superman pillowcase out of super soft fleece so that every day he goes he will have it instead of the standard hospital issue white one. After the first treatment Mac developed severe headaches and nausea. I spoke with the doctors this morning about it before his 2^nd treatment. They assured me this was not a side effect of the radiation but may be due to the tightness of the mask or a reaction to the sedative and low fluids in him. Immediately following today's treatment Mac was given tylenol to try to prevent a headache. I am happy to say it worked! Mac had a great afternoon and has started to eat a little more. I cannot say enough good things about the staff at The Floating Hospital. Every department seems to go out of their way to make us all feel more at ease with what we are going through. Tomorrow is treatment #3 out of 30. After radiation we will go to clinic for chemotherapy.  

Harbor Walk & Run

We have started putting together a team of walkers and runners for the Tufts Medical Center 2012 Harbor Walk & Run. Our team name is the Super Mac Attacks. Anyone interested in donating can follow the link to our team page. Any and all support is greatly appreciated!

http://www.harborwalkrun.org/faf/search/searchTeamPart.asp?ievent=1006775&lis=1&kntae1006775=A39DEA09CF9349628EC4DC9A9B3FEB77&team=4984437

Chemo Round 2

We just arrived home from round 2 of chemo. Mac is one of the bravest people I know. This round was much tougher than the last. He had nausea and vomiting everyday and has developed mouth sores. He was also constipated so he was in pain for several days. Mac is in great spirits. I, however, feel like I am standing in the doorway of hell and have no choice but to walk through it. I have gotten a glimpse of the pain he is facing. I know in the weeks and months to come he is going to get a lot sicker before he can get better. It is so hard to look at your child and see the pain in their eyes and wish for nothing but the power to take that pain on yourself so they don't have to.

As always thank you to all of you for all of your prayers and support!

Mapping

Mac went in for his radiation mapping today. He did so well! It only took about half an hour for them to make his mask and do the mapping. It helped he was sedated! He also had a check up at the clinic. We were given the green light to return on Friday to check back in for round 2 of chemo. I am hoping this stay will only be 4 or 5 days so he can spend the 2nd half of Liam's vacation at home with him. He is sleeping so much better at home and just acts more like himself here. It has been so nice to have dinner as a family and return to our tradition of watching Wheel of Fortune every night!

Some Changes to the Blog

At the request of the family, we have removed all photos from the blog.

The intention of this site was to provide updates to friends and family regarding Mac's progress. We'll continue to provide information to all who are thinking of and praying for Mac and our family, but we will not be posting any additional photos during this emotional and stressful time.

Liam

I just wanted to share a quick story about Liam. This boy as I mentioned before has become a source of strength for me. He amazes me with his compassion and insight.

We were driving home from the hospital when the following conversation took place:

Liam: "Mom, can I ask you a question?"
Me: "Of course. You know you can ask me anything and anytime."
Liam: "If you had 1 wish what would it be?"
Me: "That Mac would be healthy. You?"
Liam: " I would wish that there would be no such thing as a tumor or cancer so that no one would ever have to suffer from it."
Me: "Wow. You wish is way better than mine."

I just love this kid!

waiting...

Well, radiation mapping for today has been cancelled. They are having some type of technical difficulty with the machine. They are thinking it will be pushed back to possibly Tuesday. We are not sure about the date though. We are waiting for confirmation from the anestesia people.

Mac has been on antibiotics for 2 days now because of a fever he develops around 6 pm. They are going to change the dressing on his broviac catheter to see if they can see anything ... we are hoping it is just red because of his super sensitive skin. All blood cultures have shown up nothing so far, which is good. So today we just wait. I am still clinging to hope that he may be able to come home tomorrow as long as he doesn't get a fever tonight and the blood cultures remain clear.

1st Round of Chemo

Well, mac has his 1st round of chemo on Saturday. It was a 24 hr dose of Methotrexate. We couldn't have asked for it to go more smoothly. He was up playing and laughing during the day and slept well at night. Everything went really well. Last night he did develop a fever, but it was brought down rather easily with 1 dose of tylenol. Although his appetite for hot dogs and donuts has significantly decreased since being taken of the steroid.

Today, Mac has a rather busy day. He met with an occupational therapist and a physical therapist. He also made time for a winning game of Sorry in the playroom with one of the Child Life Specialist. He is holding up exceptionally well given his whole world has been turned upside down.

Tomorrow we go at 1:30 p.m. for radiation mapping. He will be sedated and they will make a mask for him to wear during all of his radiation treatments. Anyone who knows Mac knows that he is at his best when in costume so hopefully this will not be to much of a painful experience for him.

We are still waiting for the most recent set of numbers but we are crossing our fingers that Thursday may possibly be the day when he can come home for a short time before starting his 2nd round of chemo!


Here is Mac on Sunday getting ready for the Super Bowl. Although the Patriots lost we were all smiles here at how well he was holding up!

Saturday 2/4

Mac started his first round of chemo today. It was started at 4:30 pm and will run for 24 hrs. The usual side effects of nausea, vomiting, and mouth sores are expected. So far he is doing well and we have our fingers crossed this will continue over the next 20 hrs.

Out of the mouths of babes...

Mac has had a really good couple of days. He goes in for surgery tomorrow morning at 7:30 a.m. They expect him to start chemo at some point tomorrow afternoon.

When putting Liam to bed last night I asked if he had any questions or wanted to talk about anything. His answer was that of most 8 year old boys, "no". I pressed a little harder and asked if he was scared about his brother having brain cancer. He again responded "no". I said "you have no questions about his cancer?'. Liam "No, I know he is going to beat this." I thank God everyday for Liam and Billy! Their never ending optimism and strength is amazing!

Darth Gorilla!

There was one bright spot yesterday - besides Mac's enormous meal! Two members of Paul Newman's Hole in the Wall Team stopped by to paint this bigger than life-sized gorilla for Mac's wall.

Like Mac, this is one-of-a-kind: A gorilla, in a Darth Vader costume, brandishing a light saber...and a banana.