Update #9 – February 16, 2015

Mac & JB doing crafts at chemo

Family trip to Georgetown Cupcake in Boston for treats!

A superhero with Star Lord

Brothers in bed after a nap

Helping my nurse with my “tubies” after chemo

Mar and Mac playing on the “pad”

Amazing! Three very handsome dudes!

Snacks and phones with Pa

Sweet boy

Happy Valentine’s Day!

Playing in hotel rooms! So fun!

Iz, Mike and Mac out for a stroll

Special dinner with Bonnie and Polly. . . thank you to our unknown friends

Sushi with cousin Hal!

Brandon and JB freezing in Boston

Mac and Ga at Mass General for chemo

The title of this update should read, “Still in Boston, still snowing, still freezing.” We have the news on in the background as I am typing and the lead story opens with the newscaster saying “over six feet of snow in the last three weeks here in Boston.” Today the high was six degrees, all people do is shovel, the sidewalks are just like ice skating rinks and we fall asleep to the scraping sound of the snow plow that circles the entry way of our apartment building all night. This weather is nuts! That said, what is really most important is that Mac continues to do pretty darn well! We are settled into a routine here now and actually the time has passed fairly quickly. Honestly, I can’t believe that this is the start of week four – and that we only have two more weeks to go. I was certain that while I was here I would have time to write/post an update every week… boy, was I wrong! I think people wonder what the heck we do with all of our down time, but in actuality, there isn’t much down time. We have treatment every morning – Mac is the first of eight children to get radiation because he is the youngest and they know how hard the anesthesia eating/drinking restrictions are on the babies. We arrive about 7:15 and are usually in the gantry (this huge space ship looking radiation machine) by about 8:00 am each morning. I hold him as they put him under and then return to the waiting room. Mac is then wheeled back to the pediatric recovery room in his hospital crib after his proton treatment and as soon as he stirs, the nurses call me to come back. Compared to the other children, Mac is quick to wake up and typically wakes up in good spirits. One mom calls him Mac-Jack in the Box because he will be sound asleep one minute and then pops up asking for his “mama” the next. Most of the kids wake up slowly and are groggy for a bit. By about 9:30 we are out of recovery and back in the waiting room socializing with Mac’s friends. No surprise, he spends the next few minutes waving at other patients in the waiting room and talking to all the familiar faces he sees. Paul, the awesome man at the front desk of the radiation center, has a graham cracker ready for Mac as soon as he walks back into the waiting room from treatment. As Mac wolfs down his cracker he periodically holds it up to show everyone in the room and says, “Paul.” Of course, people smile and laugh. It is pretty cool to see this little human being, a cancer patient himself, buzzing around a waiting room full of cancer patients spreading joy and laughter. Last week, one of the older patients, who is there alone, randomly came up to me and said he just wanted to introduce himself. He knew Mac’s name and told me that he is praying for him and his recovery. He said he is a special little boy. I said thank you and I know.

In addition to our daily treatments, lots has happened in the last couple of weeks. Like I said earlier, very little down time because we have been so busy! We had a great visit with Marshall and JB who came the first weekend in February. JB was thrilled to be reunited with his brother. Marshall jumped right in and took over treatment duty in the morning which gave me a nice break for a couple of days. We all got out for a few adventures (despite the weather), had great dinners and enjoyed being together. My mom also left at the end of their weekend and it was hard to see all of them go. Mac woke up for a week asking for Iz and Ga and searching around the apartment for them. After Izzy left and my mom wrapped up her two week stint here (thank you both, you are amazing and I couldn’t have started this Boston endeavor without your help!!), Polly and Brandon flew in. Mac had a blast visiting with them and most notably, constantly teasing Polly by calling her Iz and then bursting into hysterics. Who knew a sense of humor starts this young! As Polly and Brandon left, Mar and Bonnie arrived. As usual, Mar hit the ground running and Bonnie was great fun. One night when Bonnie was in town we splurged and went out to a fancy dinner at her hotel. Polly, Bonnie, Mac and I decided we had earned a good bottle of wine, so Bonnie ordered away. We had delicious appetizers and then ordered salads and dinners. Mac liked, and ate all of, one of the dinners so much that we ordered it again! In the middle of dinner, Mac started waving at one of the women seated at the table next to us. One thing led to another and they soon knew Mac’s story and why we were in Boston. The women at the table then told us that she was bald just like Mac 18 months earlier as she went through chemo and cancer. It was almost as if Mac knew. We had a wonderful night and a great dinner. By 10:00 p.m., long after Mac’s bedtime, it was time to get the bill and head home. As we asked for our check, our waiter looked puzzled. He said, “your friends picked up your bill.” What? Our friends? He said, “you know, the table right next to you, they paid your bill with theirs when they left.” We were shocked – they had left thirty minutes earlier and didn’t mention a thing. My jaw dropped when I put together what had happened. My first thought was that our bill must have cost a fortune, second thought was how would we ever be able to find them to thank them, and my final thought was how am I going to keep it together in this restaurant? As my brain processed these things, I realized one, the bill did cost a fortune (especially with Bonnie ordering the wine!), two, I likely would never be able to find the woman at the table who bought our dinner, and three, there was no way I could control the tears that came streaming down my face. Fortunately, Polly cried almost as hard in the middle of the restaurant with me! If karma counts for anything, that woman has a lot of it headed her way. What a special night.

As our revolving door of visitors continues to circle, Izzy and Mike returned to Boston from New York for a surprise last minute visit and Pa flew in from Denver for what he thought would be a long weekend. Izzy was here for the first cycle of in-patient chemo and remembered how brutal the “shared room” situation was (Mac did great, we were a mess!), so she came back for Mac’s second cycle of in-patient chemo to help us. It was so nice to have her here again! And lucky for us we were able to score a single room – instead of spooning on a very small hospital cot, I slept on the cot and Iz slept on the pull-out chair. We joked that this go around was like being at the Ritz! And as usual, Mac did great.

Pa arrived last Thursday and anticipated being here for the weekend and then flying home with Mar. Well, the Boston weather had a much different plan for them. On Friday after treatment, Mar, Pa, Mac and I were able to escape from the hospital and our apartment for a quick getaway to the Cape. My aunt and uncle invited us down and we jumped at the chance to get out of town.   We had a really nice trip and enjoyed the change in scenery. As we were driving back to Boston from the Cape on Saturday afternoon, Mar and Pa got word that their morning flight home was canceled due to the blizzard. Unreal. The soonest they could get back to Denver would be four days later! Saturday night we watched it snow (a frequent pastime in Boston!), complained about the ridiculous weather, and laughed. By Sunday night, after being in the apartment without leaving for 24 hours, we really laughed. Somehow, Kylee’s flight from Denver was not canceled and she was able to land Sunday night. We were thrilled to see her and Mac loves having his “Ky-Ky” here. Also, somehow, all of us have managed to have a pretty good time together in this teeny-tiny apartment! And because we’ve still got 20 square feet of unused space, we have been inviting Hal (Marshall’s cousin, Marsha’s nephew) over for dinners! Such fun! Hal has also been an incredible Boston asset. He lives here and knows just about everything. We have been seeing him weekly. Mac and JB adore him and the second we tell Mac that Hal is coming over, Mac is at the door calling, “Hal, Hal, Hal.” I don’t think many people can say they have truly enjoyed being snowed-in for days while living in a cramped apartment with their in-laws… but I can!

Kylee is now here for the next two weeks/until we leave. I can’t believe the end is in sight! Eighteen treatments down, ten to go! We had planned Kylee to be here for the “home stretch” when we thought things would be getting rough – although the last four weeks have been long, AND COLD, and tough at times, we are hanging in there! At the end of this week, my mom, dad, and JB will fly in for a long weekend. We are very excited to see them and I am dying to get my hands on JB! Each time I talk to him or see a picture of him he seems older. I feel like I have missed so much with him in Denver.

Like I said earlier, we have had a revolving door of family here to visit which has made a huge difference. It has made our time here not just about cancer treatment, but rather a unique and special adventure that just so happened to include some out-of-state chemo and radiation. The help and support that you all have given us is not repayable. You have all put your lives on hold, uprooted from your cities, dealt with awful weather, slept on pull-out couches, hospital cots, and in the “grandmother suite,” just to come here to be with us… we are so very grateful.

Again, before this post turns into a novel, I will wrap it up. But, I cannot finish this update without a quick story on Mac’s moment in the spotlight. As I know many of you have heard about or read about, a Super Bowl bet between two Hollywood superheroes lead to some some exciting times at Christopher’s Haven (the place we are staying across the street from Mass General). Both Chris Pratt (Star Lord of Guardians of the Galaxy and Parks and Rec on tv) and Chris Evans (Captain America) paid a visit to the kids at Christopher’s Haven. On the morning that they were here, Mac had radiation treatment. As we got off the elevator in our apartment building (just after treatment and Mac waking up from anesthesia), Mac heard the commotion at the end of the hall in the playroom. We got him out of his stroller and let him wonder in… at the entrance of the room was Star Lord, in full costume, and Captain America. While most of the kids were a bit taken by the real live superheroes and somewhat shy, Mac walked up to them and reached up his hands to be picked up. Star Lord swooped him up and received a big smile. The picture that ran with several of the stories in the news was this moment that the photographer captured perfectly. (Thank you to tech experts Gina and Eric, our close friends, who have been managing this website from the start, who posted some of the media coverage of this event on the site). Clearly, Mac had no idea who these guys were, but he knew something special was going on… to watch the kids who did understand and to see the smiles on their faces was awesome. Both of these superheroes were such nice guys and seemed genuinely thrilled to be there – they brought tons of toys and paraphernalia that they signed for all of the kids. I was interviewed by a few different newscasters during the day and of course sounded much less articulate than I had hoped, but one thing I did say, that I think is definitely true, is that these kids, the cancer patients, who endure all kinds of battles each day, are the real superheroes. They are the strong ones, they are the ones that keep fighting, they are the ones that should be our role models.