Update #7 – December 28, 2014

Ms. Susan bought JB his first menora

Merry Christmas Gumpy! Nuggets tickets!

Finishing off Santa’s cookies

Turtle and Tiger in the Christmas pagent

Marshall and JB having “guys time.”

“Cancer is so long,” says JB out of the blue one morning. I remember that first hellish week in the hospital when Mac was diagnosed and we met with a child-life specialist. I didn’t really hear what she had to say when she first came into Mac’s hospital room to meet us, but I tried to make a mental note of her name and where I could find her if and when I needed her. Although it took a while for the initial shock and sleep-deprivation and the feeling that I had the wind knocked out of me to subside, I eventually realized that I had to keep going… And that I had another son, who didn’t have cancer, but who now had a baby brother with cancer, who also needed me. At our next chemo appointment at Children’s I found the child-life specialist. I asked her for help. I remember holding it together for the first, superficial part of our conversation… “How’s Mac doing at home?” “We are hanging in there.” “He looks great…” Etc. etc. Then, she asked about Mac’s brother, JB. I was impressed that she had remembered his name, and got the initials correct, from the one time I had told her his name two weeks prior. I remember it was at that point that I started to cry. It seemed so incredibly unfair that my baby had cancer and almost as unfair that my oldest baby – one of the most thoughtful and empathic three year olds ever – had to somehow wrap his head around and deal with a sibling with cancer. I asked the child-life specialist desperately what I could do to help JB navigate this. What do I tell him? How do you explain cancer to a three year old? How can I stay strong for him when I am terrified and uncertain about everything myself? The child-life specialist was great. She told me something that still resonates in my mind 12 weeks later. She said we, adults, have an awful connotation of cancer – we think about people being so sick from chemotherapy, people being in the hospital, people dying from cancer. She said but young kids don’t know what cancer is – they have no frame of reference of “cancer” … So, you can create his frame of reference, she told me. I remember thinking what a big responsibility that was, but also what a unique opportunity. She suggested that we be honest with JB. That we tell JB that Mac has a serious illness called cancer, but, that Mac is going to get better… And that we have to believe that. Mac will get medicine called chemo that may make him sick and he might get more medicine called radiation, and he might even have surgery. Mac will have lots of doctors and nurses helping him get better. And lots of trips to Children’s Hospital. I liked what the specialist said. I liked the thought of JB somehow hearing a positive spin on a horrible disease and a tragic situation that our family was now in. As much as Marshall and I hate cancer and hate to watch precious Mac go through this, never have I heard a negative word out of JB’s mouth about it. Not once in three months has JB said Mac’s getting more attention or Mac’s cancer gets him a lot of presents or that it’s sad that his brother can’t do as many fun things because of germs… Instead of saying he hates cancer – cancer sucks – cancer makes people really sick – cancer ruins people’s lives – JB so insightfully said, “Cancer is so long.” And he’s exactly right. It is long… And we’ve got a long way to go. But we will get there.

I didn’t know how to respond to JB other than to say, “you’re right, buddy… Cancer is so long.” I then mumbled to myself, “And I can’t believe it is already December.” To which JB of course heard and replied, “and after December it’s January, then February,… [through all the months]… And then September!!! And Momma, do you know what happens in September? Mac’s hair grows back!!! And he will have a birthday!” Unreal. Nothing gets by that kid. We told him a few times that chemo would make Mac’s hair fall out. We told him once that chemo would end in about a year, near Mac’s second birthday. Funny.

So, in closing, thoughts from a three year old: cancer is long but eventually your hair will grow back…just in time for your second birthday, and many, many, many more birthdays after that. A pretty good spin on a really shitty disease.

Now enough random story-telling and on to some important updates regarding Mac and his treatment. In the second week of December, Mac had his 10-week scans (everything seems to be measured in “chemo time” – meaning week one was the start date of chemo, just four days after he was diagnosed). We were all excited and anxious at the same. Mac spent the morning under general anesthesia while he had a PET scan, a CT scan of his lungs, and an MRI – all to determine how the chemo was working and to ensure that the cancer still had not spread to any other place in his body. We were elated to learn that Mac’s tumor has shrunk significantly (i.e., he has had a great response to the chemo) and that the cancer has not spread. Such a long day waiting for those results, but so worth it! That same week Mac spent another two days at Children’s for in-patient chemo. Because the last big round of chemo at the end of November made him so terribly sick, the doctors and nurses suggested keeping Mac in the hospital overnight to continue fluids and anti-nausea medicine intravenously. Although being admitted into the hospital (and into the room next to the one we were in for over a week when he was first diagnosed) was a little unsettling, it ended up working out for the best. The oncology nurses are incredible and did all that they could to make us both comfortable for the night – Mac got Ativan and I got a foam egg crate for the pull-out couch! It was hard to see such a little guy so doped up, but I tried to remind myself that a sedated baby was better than an inconsolable vomiting baby. Overall, Mac did much better and we are set for his next big round of chemo (this Tuesday) to be done in-patient again.

The following Monday, Mac had another surgery. More anesthesia, more recovery rooms, and more waiting. Ahhh. The surgery involved several biopsies of tissue surrounding the tumor with the hope that after the procedure, Mac’s doctors would know if they could successfully do the bigger surgery as opposed to radiation, as a means of “local control.” After receiving the pathology from the surgery, we learned that radiation was likely the better option, given all the circumstances. We were disappointed that surgery became a less favorable option, but at the same time, we were glad we opted to do the procedure that gave us that information on the front end. And in a sense, having radiation emerge as the “better” option took the pressure of making the decision between surgery and radiation away.

So, we are now headed to Boston for radiation. Massachusetts General Hospital is one of only a few centers in the country that offers a more specialized form of radiation called proton beam radiation. We have elected to do this type of treatment in the hopes that this radiation kills all the cancer cells but spares as much normal tissue, organs, bones, etc as possible. We are set to leave for Boston on January 5^th – 10^th for a week of “pre-treatment” appointments. We will meet all the radiology team and Mac’s new oncologist – he will continue to get chemo during radiation (which sounds brutal!). We also have appointments scheduled with the anesthesia team because he will go under for each radiation session – six weeks straight of daily radiation treatments (again, sounds brutal!). We will return after January 10^th and be home for about a week before heading back to Boston for the six-week stay. January 20^th is the start date of radiation. Again, this all sounds fairly overwhelming and the thought of separating our family for that long is heartbreaking. But, we will manage. The plan right now is to have Marshall and JB stay in Denver and fly out for a few weekend trips. They have both told me it will be great “guys time.” I will take Mac to Boston and we will stay at a place called Christopher’s Haven, just across the street from the hospital (I think similar to the Ronald McDonald House here in Denver). Fortunately, my aunt and uncle live in Boston so we hope to see them regularly and escape to their house on weekends if Mac is healthy enough. Also, thank goodness for our incredible families here who have offered to accompany us to Boston and help hold down the fort in Denver. Between our awesome nanny (Kylee), grandparents, and aunts, I think we will keep the Boston to Denver airlines in business this winter!

On a lighter note, we had a wonderful Christmas this year and wish all of our friends and family a belated Merry Christmas. Mac was healthy and able to partake in all the fun! He and JB had a 30 second appearance in the Christmas Eve pageant at St. Luke’s church and loved it – special thanks to Mar for facilitating that one!! Both Christmas Eve and Christmas included delicious dinners with all of our families together. It was great to all be together and enjoy this special time of year. I think my favorite moment of the holiday was sitting down for Christmas dinner at my parents’ house and suggesting that we say grace (we can do that at least once a year, right?!?). As we all held hands around a huge rectangular dining table, Polly began… She said here’s to our families being together, good health, and happiness. And just after the words “good health” were uttered around a surprisingly quiet and usually very loud dinner table, Mac let out a loud, joyful laugh. We looked over at him as he was sitting in his highchair, pulled up to the table, holding hands for grace, and saw a huge, magical smile on his face. That was his way of saying grace – and of telling us all that he is going to be ok.