So brave! Doing his blood draw by himself

So fun!

Flying brothers!

Picnic in the mountains

2nd to last round of inpatient chemo!

So happy at the park

Gondola ride in Aspen

Cousins trip to Aspen

Just waking up…

Nurse JB during inpatient chemo

So, the light at the end of the tunnel, the one that didn’t even seem to exist last October, is finally here. We made it.  Mac did it.  Today, July 15th, marks his last day of chemotherapy.  After 40+ weeks of weekly chemo, we are almost done. It is so difficult to accurately reduce to writing what this experience has been like or what it feels like to finally be reaching this milestone in Mac’s life.  It is easy to say we are thrilled that chemo is over and feel so very fortunate that his response to treatment has been good,  that we are forever grateful that Mac handled the last 10 months so well,  but there seems like there should be a bigger, more grandiose, more important word to encapsulate all that this amazing child has endured and what the last day of treatment truly signifies… but I am not sure that word or those words exist.

I think over the last 10 months, I have said “one day at a time” at least a hundred times. Literally.  And probably more.  I’ve said it to myself when I wake up at 2:00 a.m. feeling overwhelmed by cancer,  I’ve whispered it into Mac’s ear as he falls asleep in my arms after vomiting repeatedly from chemo, I’ve explained exactly what the phrase means to JB as he’s heard it in passing on several occasions and inquired, and I’ve said it to many, many friends, co-workers, neighbors, nurses and doctors as it has become my colloquial answer to the “how are you?” question when I haven’t had the energy to say more.  And now, one day at a time, we have finally made it here…

We will head to the hospital first thing in the morning.  Assuming Mac’s counts are high enough, he will then be admitted for his last round of in-patient chemo.  As usual, he is hooked up to an IV (pre-hydration, then chemo, then post-hydration) for about 24 hours. Entertaining an active and social 22 month old isn’t always easy when he is tethered to a pole but he seems to understand his limitations and often times just hangs out in his hospital room snuggling and laying low.  Although we are in the early stages of planning a big end of treatment celebration/birthday party for Mac in September, we couldn’t let his last round of chemo go uncelebrated.  We have planned some great surprises that will hopefully make this trip to the hospital and his last round of chemo a memorable one.  Like always, Mac will have his team of supporters rolling in to see him and inevitably he will greet them with a huge smile, even if he isn’t feeling well.  And again, as usual, during this monumental last round of chemo, Mac will exemplify poise and strength and we will all try to somehow hold back our tears…guessing we won’t be all that successful…and that’s okay too!

It is a big day so I am going to cut this post short and will post a proper update once we have chemotherapy completed.

Ultimately, as end of treatment approaches, we are reminded of how long and tough this road has been.  We are also reminded of how lucky we are to have such incredible love and support from our family, friends and community.  Mac has been a rockstar through an unbelievably difficult journey.  I think his success, strength, and happiness through it all is remarkable and largely attributable to the positive thoughts, prayers and healing energy so many have sent our way.  Thank you all. We did it. And congratulations Mac – YOU DID IT!!!

Happy Mother’s Day

Outside with Ky-Ky

Fun at the zoo!

Snuggling at chemo

JB’s postcard project!

Laughing hysterically with my brother.

Who me?!? Just out for a drive…

In-patient chemo… Looking a bit rough but still so darn cute!!

Samples at the grocery store! Yum!!

Oh boy!

7am! Ready to conquer the day!

Good news to report!  Mac had another round of scans last week (April 29th) and things look good.  The last set of scans were done in December, so these scans, also used to measure the initial impact of radiation, were greatly anticipated.  The tumor in his prostate is still there, and it can still be seen in the base of his bladder, but it continues to shrink and thankfully, there were no signs that the cancer has spread.  The anxiety and the uncertainty surrounding these scans sucks, but I think that just comes with the territory.  When I was a little girl, I remember wishing that I had a magic rewind and fast-forward button for my day-to-day life – so I could replay all the fun slumber parties, water-balloon fights and Christmas mornings… and I could fast-forward through all the strep throats, time-outs in my room and long, boring drives in the car. Thirty years later, as I sat and waited for the results of Mac’s scans, I thought about that magic button.  Immediately, I thought how nice that fast-forward button would be for me in that waiting room, but then I thought a bit more.  How nice would that fast-forward button be for Mac – for him to have for each round of “big chemo,” or for the time he had the catheter in for a month, or for those first nine brutal days in the hospital when he was diagnosed, or for every time he had to wake up from anesthesia, or for every time they access his port, or for each time I give him a shot, or really, just for CANCER. Wouldn’t it be amazing to just fast-forward through these last eight months? Fast-forward through cancer? As much as I would love to take every bit of hurt and fear and pain and sickness away from Mac, I have come to realize that these last tough eight months have also been filled with life… Mac’s life… that is filled with his infectious smile, with his veracious appetite, with his belly laughter, with his calm demeanor, with his reassuring presence, with his charming expressions, with his quiet courage, with his unbelievable strength and with his angelic soul.  Although I am 100% certain, and have seen first-hand, that pediatric cancer is a terrible, terrible thing that no child should ever have to endure, I am somewhat uncertain about the fast-forward button.  On one hand, I would kill for the magic button for Mac to blur and speed through the awfulness that is his cancer, but then, on the other hand, I also want to constantly be reminded to stop and slow down and appreciate every day of his life.

As cliché as it sounds, I have always believed in the phrase, the idea, the concept, of “it takes a village to raise a child.”  Clearly, I feel as though my boys have been raised by an incredible village (I would need more than a website post to elaborate on that and will spare you all!), especially since Mac was diagnosed last fall.  One small, but very large example of this is JB’s “postcard project” as we have come to call it.  Just before we left for Boston in January, we got a call from one of our dearest friends from Steamboat.  She had an idea that she wanted to run by my mom before putting her plan into action.  All I knew was that my mom thought it was great.  A couple of weeks later, a huge map of the world arrived for JB.  And for those who don’t know, JB’s latest fascination is geography.  JB was instructed to hang the map up and to start checking the mail.  Within days, postcards started rolling in (another favorite of JB’s is getting mail!). JB was to stick a push-pin on the map for every place that he got a postcard from.  Random people, complete strangers, some friends, mostly anonymous buddies started sending postcards.  Each day JB eagerly awaits the mail and checks his postcards.  The cards usually include some factual information about the postcard location/city/state and have an encouraging message for JB about being a great big brother to Mac.  Most of the cards are signed “your secret pal” or your friend from y,z,x.  JB has received over 300 cards to date and knows more about world geography than any other 4-year-old. The initial thought behind these postcards was for them to serve as a positive distraction for JB while we were in Boston – it certainly served that purpose and continues to be the source of lots of joy for this little boy.  He has albums (one international and one national) for his postcards and they are ordered alphabetically by country and state, respectively.  His map is covered in colored push-pins that span east to west, north to south.  He knows where Siberia and Guam are on the map.  He says Russia is huge and Chile is the really long, skinny country in South America.  He wonders why Canada can’t be part of the United States because so many states are touching it anyway.  He knows every state in America and has now memorized every state’s capital. Really.  So, in addition to giving my son a jump start on world geography, all of these people – this international village of people – have also shown him that kindness, caring, friendship, love, hope, and encouragement come from all sorts of people, from everywhere in the world.

I know at age 4, JB doesn’t quite grasp that ladder piece, but years from now he will… he will be able to look back on when Mac had cancer and remember all of his postcards from all of his buddies – and he will realize how many people took the time to care about him and make him feel like a really special, important big brother during a really hard time in his family’s life. And for that, Village — whoever and wherever you are — I thank you.

The last several weeks Mac continues to demonstrate how well he has tolerated treatment and how fortunate we are.  He continues to grow, gain weight, reach milestones, and talk up a storm.  For a toddler with cancer, he looks and acts pretty amazing.  His vocabulary is expanding by the minute and he is surprisingly good with people’s and Sesame Street characters’ names.  His sense of humor is emerging and his mischievous streak is such fun to watch.  He likes to climb and jump on everything and loves laughing with his brother.  This week was unusually tough because we had our first treatment delay.  At this point in chemotherapy, most kids have had multiple delays, so it is not uncommon, but hard nonetheless.  Mac was set to go to inpatient chemo Wednesday and Thursday this past week, and Wednesday morning after accessing his port and doing labs, we learned that his counts were too low to receive chemo.  So, they sent us home and said to try again Friday in hopes that his counts would be high enough by then.  We took the overnight bags home, cancelled the tag-team child-care coverage schedule that took days to formulate, and started again to gear up for Friday.  Take-two, Friday morning… and unfortunately, Mac’s counts were still low – they had risen since Wednesday, but not enough.  In the grand scheme of things, this is no big deal, but it sure made for a hectic and tiring week.  We are hoping the third time is a charm and will return to the hospital Monday morning for another try.  Ironic that we are disappointed that we didn’t get to stay in the hospital and were denied chemotherapy… again, another reminder of our new normal.

Happy Mother’s Day to all the moms who read Mac’s website.  He is blowing you kisses and sending you a sweet smile.   As every mom knows, motherhood is often hard, overwhelming, exhausting, and somehow also incredible – with or without pediatric cancer.  Thank you Mac and JB for making the hardest job in the world so worth it!

Welcome home Mac!!

We will miss you guys!

Weekend dinners with Aunt Martha & Uncle Allan

Laughing with Aunt Martha

Mac & Julio doing music therapy

Briah & Mac after treatment

ohammed & Mac rocking out before radiation

Last proton beam radiation treatment!

All my people getting me ready to go into the machine.

I GOT THIS!

Mac with Rachel (his nurse) after ringing the bell.

“Proton Radiation Friends”

Celebrating with my radiation therapists – with me every morning.

Celebrating with “Ky-Ky”

In the recovery room on my last day.

Daily walk with Will at Christopher’s Haven.

It has been way too long… so much to say and so little time to write.  I have been meaning to sit down to do an update for weeks now – literally weeks – and I have not done it.  Some of it is lack of time (or more accurately stated, sheer exhaustion by the time kids are asleep and I have a free second) and some of it is feeling overwhelmed as to how to accurately articulate what the last few weeks have been like.  How and where do I even begin? 

The last post I did was at the half way mark of treatment in Boston – hard to imagine that since then we have finished six weeks of radiation and are now more than half way through our year of chemotherapy.  Leaving Boston was bittersweet.  It is amazing how much we grew to love Christopher’s Haven, our team of doctors and nurses at Mass General and the families and kids we met during our time there.  I feel like I could write a book about all the incredible families we met and their stories.  We met people from all walks of life, from all over the globe and became friends in one small waiting room.  I will never forget some of the conversations I had with other parents in that waiting room.  They were constant reminders of how fortunate we were even in the midst of really tough, daily treatments.  There were other kids who stopped eating during treatment and had feeding tubes put in.  One baby was unable to breath on his own during anesthesia, and only needed anesthesia for the radiation, so had to have a trach tube put in (yet another surgery and more time in the ICU) simply to help with breathing while he was under.  And then a couple of other children had treatment delays because the radiation was just too much for their little bodies to handle.  Fortunately, Mac had none of these complications.  Each day he continued to eat and smile and play.  He never once protested being put in the stroller and wheeling over to the hospital.  On numerous occasions I wondered to myself, how is he still trusting me when I continue to take him into the doors of the radiation building – he knows they will access his port, poke and prod him, and that he will leave feeling much groggier then when he arrived… and he was still okay.  Ready to go with a smile on his face.  He is such a trooper and he made my job so much easier.  There were many, many occasions where I felt like crying and I’d look at him and have to remind myself that if he can do this, so can I.  Ironic that my strength comes from him…

One family we became good friends with was from Dubai.  Their son, Mohammed, is about six months older than Mac, although both boys are the same size (Mac is huge!). Mohammed’s mother doesn’t speak English but his father’s English was amazing.  Mac and Mohammed had cribs next to one another in the recovery room, so they saw each other before and after treatment each morning.  During one of the first conversations I had with Mohammed’s dad, he asked me if the doctors had explained to us why and how Mac got cancer.  He said, “what is the reason for this cancer?  Have any of the doctors told you the reason?”  Such simple questions that as a parent I too have wondered a hundred times.  I heard a sense of desperation in Mohammed’s father’s voice and knew, first-hand, where that angst came from.  Almost trying to reassure myself, I answered him as calmly and confidently as I could.  I said that there wasn’t a reason that this cancer had happened to Mac, and I suspect to most of these kids.  I told him that the doctors were not able to provide a reason or an explanation as to why Mac got cancer and that it was not something that we did or didn’t do to cause this to happen.  He smiled and shook his head and then translated what I had said to his wife.  She smiled too and placed her hand on her heart.  

Mac and Mohammed became fast friends and loved playing together each morning.  Some mornings they even got to do music therapy together in the play room.  Seeing the two of them, side-by-side, strumming on ukuleles or simultaneously hitting the xylophone with their mallets was one of my favorite memories.  In the recovery room, Mohammed didn’t like getting his port accessed whereas Mac never seemed to mind.  So, Mac was always accessed first and then it was Mohammed’s turn.  Often, Mac would try to reach over to Mohammed when he cried to try to hand him his lovey.  Fortunately for Mohammed, he never actually got a hold of Mac’s slobbered on lovey, but Mac sure was thoughtful to offer.  

On the last day of treatment, as the elevator doors to the radiation building opened, Mohammed was standing there in the waiting room.  He was holding a big, boxed teddy bear and there was a folded shirt on top of the box.  Mac jumped out of his stroller and walked to Mohammed.  As I took the box out of his arms, I was able to see the shirt that Mohammed was wearing.  Despite really trying not to cry, the tears, once again, came rolling down my cheeks.  Mohammed was wearing a black t-shirt with a photograph of Mac and Mohammed doing music together printed on the shirt.  Above the picture read “Proton Radiation Friends”.  We showed Mac his shirt and he immediately wanted to put it on – over his clothes.  So we did… and he was so happy.  He knew.  The best shirt he will ever own.  Both boys spent the morning walking around in their matching t-shirts… Mohammed with his dark skin, Mac with his pale glow, both in their black t-shirts, ready to conquer the world, and more importantly, pediatric cancer.     

It was really hard to say goodbye to everyone on that last day.  After a patient’s final treatment, there is a bell ringing ceremony.  The patient rings a bell that is mounted on the wall of the radiation building’s waiting room three times to signify the end of radiation and the completion of a huge part of treatment.  Marshall flew out for Mac’s final treatment and was with Kylee and I to help Mac celebrate.  It was such a special and significant day – probably more so for us then for Mac, but one day we will tell him all about it.  Lots of people were there to help Mac ring the bell and celebrate with him.  The radiation therapists who had been with Mac each day for the last six weeks came out, his nurse Rachel, his favorite music therapist Julio, and all of the incredible families that were going through this fight with us were all there to cheer Mac on.  After we had said our goodbyes to everyone and I had given Mohammed’s mom one last hug, one of the mom’s came up and said something I will never forget.  She said you and Mohammed’s mom seem so close yet you have never said a single word to each other.  She was right – we hadn’t ever really spoken – but we didn’t have to. We were each from two completely different worlds, but our cultural differences and language barriers melted away once we met – at Mass General we were just two moms, with two sweet little boys with cancer, fighting the same difficult and scary fight every day… we didn’t need words to understand that. 

Since returning to Denver, I have kept in touch with several of the families that we met in Boston.  This has been a wonderful source of support and even though many of us have returned to our home states/hospitals, I still feel such a connection to these families.  Knowing that other families are living their “new normal” makes us feel like we are not so alone. An insignificant example relatively speaking, but illustrative nonetheless…  Last week one of the moms posted on her Facebook page some pictures of her son, who also has Rhabdo like Mac, at the playground.  Her son has been in the hospital for nine days because his white blood counts were so low (down to zero at one point) and they were finally out.  The caption read something like “All moms bleach the playground equipment before letting their kids play, right?!” She said it somewhat facetiously but they reality is that only a few moms have to actually bleach playground equipment – moms like us.  Only a few moms have to disinfect restaurant high chairs and tables if they are lucky enough to be able to go out.  Only a few moms have to learn to ignore the whispered “germaphobe” comments that others say under their breath.  And only a few moms come to realize that the strange looks from others as you are sanitizing really don’t matter.

It doesn’t seem possible that we have been back for almost a month now.  Being back together as a family has been great.  I don’t think I fully realized how much the boys missed each other until seeing them together again the first couple of weeks we were home.  JB couldn’t keep his hands (and hugs) off Mac and Mac couldn’t do anything without asking and looking for “J” first.  Still, when we sit down for dinner, JB announces that he should sit in between Mac and me because we were gone in Boston for six weeks.  I am also back to work part-time which has been a nice, normal thing to do.  It certainly makes things a bit more hectic, but we are managing.  Most importantly, Mac continues to do well through chemo.  We are back to Children’s for weekly chemo treatments and will do our next set of scans at the end of the month.  As always, fingers crossed, hoping for the best.

Marshall and I still talk regularly about how much everyone’s love, support and prayers have helped us get through this —  As impersonal as the world wide web may typically seem, I feel like this blog (or whatever you call these posts??!) has become an incredible venue for connection, strength, love and support.   I feel like each story I share or experience that I put in writing memorializes one of the many, many steps we have taken on this long journey.  When we started down this terrifying road, I felt like we were walking in the dark, even walking blind-folded at times, on a path that was completely foreign and lonely… barely putting one foot in front of the other.  Now, six months later, although we are still in the midst of treatment, and cancer, and lots of unknowns, I feel like we are no longer in the dark and no longer on a terrifying road alone – rather, our path has been filled with light; we are walking with the strength of so many people behind us and Mac is leading the way.  He has given us hope and he reminds us that there is a light at the end of our tunnel.  

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.

Mac on TV

Super Bowl Wager

Superheros

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.

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.

Although I am frankly intimidated by the high bar Erin and Marshall have set for Mac’s blog, I asked them to pass over the keyboard. For those of you I have not met, I am Mac’s aunt/Marshall’s sister, Polly.

Since the day Mac was born last September, at exactly 10 lbs, there was something sweet and wise about him.  While he never requires that he be the center of attention, he always is. He has a way of pulling everyone towards him. He is content and observant, and bashfully playful. He has a unique calming effect, and everybody wants to be the one holding Mac and playing with him – my mom and I have gotten into more than one argument over this (we’ve dubbed it “baby hogging”). Two and a half months after being diagnosed, Mac is still as sweet, wise, and captivating as can be. And yet, he has changed. He has a more determined look in his eye. He is more vocal about what he needs. And he is stubborn (not to be confused with whiny), expressing to us how he feels and how we should help him. Mac is so close to walking (he is taking steps!), but he is calm and clear that he just isn’t ready yet, and that it is OK. There is something in his sweet sparkly brown eyes that tells you to trust him, that at one-year-old, he knows what he is doing.

When I get anxious about his diagnosis, I don’t find myself necessarily calling friends or family, but instead heading over to their house to play with Mac and JB. At a collective age of five, those extraordinary boys seem to have a handle on the situation better than the many adults hovering over them (probably mostly me). For being nearly four, JB amazes me at his compassion and ability to play with Mac while also being careful and aware that his baby brother has cancer (he is the first one to hand you hand sanitizer as you walk into the house). He roughhouses just enough to remind us all that Mac is his toddler baby brother and that Mac, like all babies, should play, play, play. At the same time, JB is careful, protective over, and patient with Mac.

JB also seems to be initiating Mac into “toddlerhood”. To the dismay of many of the adults in our family, JB, Reese (their cousin), and I have grown to love the “bar game” at my mom and David’s house (known to their grandkids as “Mar” and “Pa”). This involves us sticking our feet between the banister bars on the second floor and screaming “MAAAARRR” at the top of our lungs. Mar quickly comes to the entryway, “yells” at us, and comes running up the stairs to chase and tickle us. Mar should be in the running for grandmother of the year – I think her record is doing this 15 times in a row.  This year at Thanksgiving, Mac really got into the game…and there  is nothing better than seeing his bald little head crawling as fast as you can imagine, feet literally tumbling over his head, and then bursting into giggles when his grandmother eventually catches and tickles him. As soon as one round of the game finishes, he quickly uses sign language for “more” and yells “mo, mo!” When Mar finally tires, Pa steps in and brings the mop, popping it up to tickle their feet between the bars. Again, along with Brenda and Bruce, grandparents of the year!

So much of this narrative has been about Mac and JB, but I worry about Marshall and Erin. I’ve always looked up to them both individually and as a couple, and no parent should have to endure what they are going through. Early Tuesday morning (12/9/14), I went to Children’s Hospital with Erin in preparation for Mac’s 10 week scans. Erin has figured out that the nurses on the oncology floor have the most experience accessing ports, and so arranged for us to get there early so they could access Mac’s port instead of having the radiology team do it. We then went down to radiology to wait for Mac’s scans. Although tired, hungry, and thirsty, as he isn’t allowed food or drink before anesthesia, Mac charmed each of the nurses and doctors who came into his room – showing just enough interest in them to have them hooked. Whether peeking out the hospital room door waving or blowing kisses as they left the room, Mac was in control of the room. When the time finally came, Erin carried Mac into the MRI room, holding him as they injected a Whiteout looking substance into his port. Within 10 seconds, he eyes closed and limbs went limp. Erin repeated “I love you” ensuring those were the words Mac fell asleep to. She then kissed his sweet forehead and laid him in the gigantuous machine so that he could get his scans, which would tell us if the chemo is working (IT IS!!) and if his cancer has spread (IT HAS NOT!).

Fast-forward 24 hours and Marshall is making a breakfast for kings, in this case, Mac and JB. Rumor has it that Mac ate three whole eggs plus the rest of the breakfast spread set before him. A day of scans can’t get our boy down!  Although JB may have been a bit more excited to have his Dad take him out for a bagel or donuts (one of their favorite activities together), he enjoyed having his baby brother home from the hospital for a family breakfast.

It’s funny how things work out. Mac was diagnosed exactly one month after Brandon and I celebrated our wedding with our families in Michigan. We could never really explain, even to ourselves, why we choose to have a short engagement or why we opted for a small, primarily family celebration. It seems there was something larger than our rushed decision making at play. Not only are Marshall and Erin wonderful parents, friends, and lawyers, they are also wonderful siblings. I don’t think I ever really thanked them for all they did for Brandon and me as we tied the knot. From taste testing every menu in Holland, Michigan, providing us with a play-by-play in Denver, to giving us the most perfect wedding gift (Rachel, the new puppy love of our lives!), to Erin doing my hair in between breastfeeding and diaper changing, they were amazing. We were able to spend carefree time together in Michigan, a place that we love and means so much to each of us. We have many great pictures of Mac playing and snuggling with his family, full head of hair, gearing up for the fight of his life . . . and, boy, can he fight! It seems like Labor Day Weekend was about more than Brandon and I getting married – it was about a time when we could all spend a happy long-weekend together without the weight of cancer on our shoulders. My dad, Mac’s grandfather, was bald, as is my now husband. JB and I like to say that we really have a thing for the balds. They are something special and Mac has some amazing guys wearing his uniform and on his team….

xox, Auntie Polly