Update #8 – January 23, 2015. . .from Boston

Mac eyeing the cupcakes!

Dr. Mac

Music therapy with Julio

In patient chemo with Iz

Mac’s apartment door at Christopher’s Haven

Truly a first class trip

Ga and Mac on the jet

Hockey and ice skating on the Charles River

Happy 4th Birthday JB!

We are finally here and finally writing an update! I feel so out of touch as I have not written in over three weeks now. We have been busy to say the least. The first full week in January we made our first trip to Boston for Mac’s “pre-treatment” appointments at Mass General. When JB got wind of the dates of this trip (Jan 5-10th) and realized that his birthday was in the middle of this trip, he very matter-of-factly said that we shouldn’t worry… “we can just have my birthday party at the hospital.” So… the plan for Marshall and I to take Mac and leave JB with grandparents that week quickly changed. Lots of money later, JB had a ticket to come to Boston with us for his birthday (and so did my mom because we needed someone to watch JB most of the week when we were at a million appointments with Mac). We stayed with my aunt and uncle which was great. They were gracious hosts and it was so nice to come home to a great dinner after being at the hospital all day. On January 8th, we had a special birthday celebration for JB. Chinese take-out and a very special surprise delivery of delicious, beautiful, personalized cupcakes from Georgetown Cupcakes (and our amazing friends Ben and Katherine). It was hard to say who was more excited about the cupcakes… JB, Mac or all of the adults!? The rest of the week was spent meeting new teams of doctors – oncology, radiation, anesthesiology – and gearing up for our 6 week stay for proton beam radiation. After only a day at Mass General, Marshall and I both felt more confident in our decision to bring Mac to Boston for radiation. Although this huge, bustling hospital feels a bit like Grand Central Station, we really liked the doctors we met and were so impressed with the level of care Mac would receive. For the first time in 14 weeks, since Mac was diagnosed, we met other kids and parents in our exact same situation. As awful as this sounds, it was comforting to talk to and be with other parents who know what this is all about. Parents who were complete strangers become instant friends because we have something terrible in common. We have been searching for other kids like Mac for weeks and overnight we found them here. Overall, it was a good week.

We got home, unpacked, and did laundry just in time to repack and head back to Boston a week later. The week in Denver flew by and it was hard to say goodbye. Six weeks away sure seems like a long time. Despite spending hours trying to get schedules and calendars for everyone sorted out, I still felt like coordinating things for Mac and JB, who would be over a thousand miles apart, seemed like a rubics cube gone bad. Just a few days before we were set to return to Boston we got a phone call. An organization called Corporate Angel Network was able to find us seats on a non-commercial plane to Boston. It felt like we won the lottery! The stress of traveling on a crowded, germ-filled plane, navigating our way through two very busy airports, trying to explain to security my cooler of medications that I needed to take with me, etc all slipped away. After the call from the organization, I got a call from one of the pilots — he was just calling to introduce himself and to see what Mac, my mom, and I wanted for lunch on the plane. Trying to keep my composure, the only thing that came out of my mouth was, “I should be calling to get your lunch order, not the other way around!!” The pilot was so nice… he clearly knew we had no idea what to expect and were just so thankful that this corporation was willing to let us fly on their plane. The pilot told me there was no security, I could bring whatever I needed, that the plane was very comfortable with a couch for Mac to sleep on, and that we would be the only ones flying. Again, trying to keep it together on this phone call, I just started to cry. I asked who do we pay for these seats and what the cost was and he said there is absolutely no charge.

As heartbreaking as it was to wave goodbye to Marshall, JB, Marsha and my Dad as we pulled away from the hanger, flying to Boston on the most beautiful jet I’ve ever seen sure was a treat… and a huge stress relief. The two pilots on the plane were incredible and took such good care of us. Initially, we were scared to touch anything for fear we might break something on this brand new plane, but we settled in quickly (funny how that works!!), forgot about cancer for a while, and enjoyed every minute of our flight. During the flight, Mac and I even got to go up to the cockpit – there was something magical about being there and looking down on the world… it was as if we were flying with angels. I am fairly certain we were!

When we landed, my aunt and uncle were there to greet us and when we arrived at Christopher’s Haven late Monday night, Izzy was waiting in our apartment. Familiar faces sure made our arrival special. Tuesday morning, January 20th, Mac got his first dose of radiation. We arrived at the proton beam center at 7:00 am where his nurse, Rachel (who is amazing!!), accessed his port for the week. We begin in a pediatric recovery-type room where there are four other kids’ beds and a crib for Mac (it’s even labeled “Mac’s Crib”). Each child has their own space/bed and their own quilt that stays on their bed and used when the children are waking up from anesthesia. Rachel knows each child’s favorite toy and usually has it waiting on the bed in the morning when they arrive. Mac, like usual, was quick to warm-up and was smiling within minutes. Because it was our first day, Izzy got to come back with Mac as well and she came with me into the radiation room where Mac was anesthetized and put into his immobilizer. I never thought it would get easier to hold my baby and watch doctors inject him with anesthesia making his body go almost instantly limp in my arms, but it does. Rachel had explained to us the week before that kids really get into a routine each day when they come for radiation and that it really isn’t as bad as we think it might be. What she said was exactly right – for me and for Mac. By Friday of our first week (treatment #4), Mac knew the drill and actually seemed like he likes going. For me, by Friday, I was able to leave him in the radiation room without tearing up… it does get easier.

In the midst of daily radiation treatments (each treatment is about 30 minutes, excluding the time in recovery after radiation) last week, Mac also had in-patient chemo. He did wonderfully while Izzy, my mom and I were in rough shape. We were in a “shared room” in the hospital which was brutal. The rooms are small to begin with and then divided in half by a curtain for two patients. There was one small reclining chair in the room and when we realized that was where we were suppose to sleep, we all three started laughing. Fortunately, we were able to upgrade to a metal cot with an awful mattress. Izzy and I squeezing into this “bed” and attempting to “sleep” was a complete joke. All we could do was laugh. The best part about the night was that Mac did not get sick from his chemo and the next morning he got to do music therapy with the incredible Julio who Mac adores. Mac spotted Julio on the floor as he was headed to the playroom and somehow Mac charmed Julio into a private session in Mac’s hospital room. Within minutes, Mac and Julio were sitting on the infamous cot, rocking out to Twinkle Twinkle and Twist and Shout with a guitar, shakers and a rainbow colored xylophone. I think it is pretty remarkable that after two radiation treatments and in-patient chemo, all within 24 hours, Mac still wanted to dance.

The week came to an end with Toy Friday at radiation – Mac got to pick a toy from the toy closet and I got to pick one from the sibling closet for JB. Although all of us were exhausted from a long first week here, we felt a sense of relief having a week under our belt. The nurses and doctors here have been wonderful to us. And I don’t know what Mac and I would have done without Izzy and my mom here this first week. It made a world of difference. We miss JB and Marshall so very much and can’t wait for their visit next week.

Several people have asked for our address here and asked if we can get mail – we have our own mailbox and would love to hear from people!

Mac Breit/Erin Campbell

c/o Christopher’s Haven

1 Emerson Place

Unit # 2-O

Boston, MA 02114

Thank you for all of your thoughts and prayers and support as we embark on this part of Mac’s fight. The phone calls, emails, and texts mean so much to us. Whenever I am feeling lonely in Boston I read them or visit this website and reread all the comments that people have posted and it reminds me how lucky we are to have such special people in our lives. Mac is a trooper and I know he feels such love and strength from those surrounding him… even from a distance.