Update #12 – End of Treatment!

So brave! Doing his blood draw by himself

So brave! Doing his blood draw by himself

So fun!

So fun!

Flying brothers!

Flying brothers!

Picnic in the mountains

Picnic in the mountains

IMG_5349

2nd to last round of inpatient chemo!

2nd to last round of inpatient chemo!

So happy at the park

So happy at the park

Gondola ride in Aspen

Gondola ride in Aspen

Cousins trip to Aspen

Cousins trip to Aspen

Just waking up...

Just waking up…

Nurse JB during inpatient chemo

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!!!

Update # 11 – May 10, 2015

Happy Mother's Day

Happy Mother’s Day

Outside with Ky-Ky

Outside with Ky-Ky

Fun at the zoo!

Fun at the zoo!

 

Snuggling at chemo

Snuggling at chemo

JB's postcard project!

JB’s postcard project!

Laughing hysterically with my brother.

Laughing hysterically with my brother.

 

Who me?!? Just out for a drive...

Who me?!? Just out for a drive…

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

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

Samples at the grocery store! Yum!!

Samples at the grocery store! Yum!!

 

Oh boy!

Oh boy!

7am! Ready to conquer the day!

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!

 

Update#10 – April 10, 2015

Welcome home Mac!!

Welcome home Mac!!

We will miss you guys!

We will miss you guys!

Weekend dinners with Aunt Martha & Uncle Allan

Weekend dinners with Aunt Martha & Uncle Allan

Laughing with Aunt Martha

Laughing with Aunt Martha

Mac & Julio doing music therapy

Mac & Julio doing music therapy

Briah & Mac after treatment

Briah & Mac after treatment

ohammed & Mac rocking out before radiation

ohammed & Mac rocking out before radiation

Last proton beam radiation treatment!

Last proton beam radiation treatment!

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

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

I GOT THIS!

I GOT THIS!

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

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

"Proton Radiation Friends"

“Proton Radiation Friends”

Celebrating with my radiation therapists - with me every morning.

Celebrating with my radiation therapists – with me every morning.

Celebrating with "Ky-Ky"

Celebrating with “Ky-Ky”

In the recovery room on my last day.

In the recovery room on my last day.

Daily walk with Will at Christopher's Haven.

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.  

 

Update #9 – February 16, 2015

Mac & JB doing crafts at chemo

Mac & JB doing crafts at chemo

Family trip to Georgetown Cupcake in Boston for treats!

Family trip to Georgetown Cupcake in Boston for treats!

A superhero with Star Lord

A superhero with Star Lord

Brothers in bed after a nap

Brothers in bed after a nap

Helping my nurse with my "tubies" after chemo

Helping my nurse with my “tubies” after chemo

Mar and Mac playing on the "pad"

Mar and Mac playing on the “pad”

Amazing! Three very handsome dudes!

Amazing! Three very handsome dudes!

Snacks and phones with Pa

Snacks and phones with Pa

Sweet boy

Sweet boy

Happy Valentine's Day!

Happy Valentine’s Day!

Playing in hotel rooms! So fun!

Playing in hotel rooms! So fun!

Iz, Mike and Mac out for a stroll

Iz, Mike and Mac out for a stroll

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

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

Sushi with cousin Hal!

Sushi with cousin Hal!

Brandon and JB freezing in Boston

Brandon and JB freezing in Boston

Mac and Ga at Mass General for chemo

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

Mac on TV

Mac is famous

Super Bowl Wager

Superheros at Christopher’s Haven

Superheros

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

Mac eyeing the cupcakes!

Mac eyeing the cupcakes!

Dr. Mac

Dr. Mac

Music therapy with Julio

Music therapy with Julio

In patient chemo with Iz

In patient chemo with Iz

Mac's apartment door at Christopher's Haven

Mac’s apartment door at Christopher’s Haven

Truly a first class trip

Truly a first class trip

Ga and Mac on the jet

Ga and Mac on the jet

Hockey and ice skating on the Charles River

Hockey and ice skating on the Charles River

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Happy 4th Birthday JB!

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.

Update #7 – December 28, 2014

Ms. Susan bought JB his first menora

Ms. Susan bought JB his first menora

Merry Christmas Gumpy! Nuggets tickets!

Merry Christmas Gumpy! Nuggets tickets!IMG_4024

 

Finishing off Santa's cookies

Finishing off Santa’s cookies

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Turtle and Tiger in the Christmas pagent

Turtle and Tiger in the Christmas pagent

Marshall and JB having "guys time."

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 5th – 10th 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 10th and be home for about a week before heading back to Boston for the six-week stay. January 20th 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.

 

Update #6 – December 15, 2014

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

 

Update # 5 – December 4, 2014

IMG_3728 IMG_3737 IMG_3730 FullSizeRender FullSizeRender-1

Again, where has the time gone? So much has happened in the last couple of weeks and we have lots to report on. It was JB’s idea to write a “Thanksgiving message” for Mac’s website and it was me who fell down on the job and never got the post up last week. Better late then never, right? The day before Thanksgiving we woke up early and started to talk about all the things that we have to be thankful for…you could see the wheels turning in JB’s head. He so poignantly noted, “We have a lot of things to be thankful for.” I agreed. We took turns saying what we were thankful for and JB’s list, not surprisingly, far surpassed ours. Marshall and I said things like we were thankful for our family and friends who love us and for Mac’s doctors. JB’s list included the following:

I am thankful for my family and really Mac; I am also thankful for Dr. Carrye and Dr. Nick (Mac’s doctors); I am thankful for my school and my house; I am thankful for the balloon fairy (who drops two balloons on our doorstep every Tuesday after chemo); and I am really thankful for all these presents and especially for Toy Thursday from Karen (and David) Landsdowne.

I thought it was a pretty good list.

We had a great Thanksgiving dinner with all of our family together. Usually, between the Campbell’s, the Breit’s, and the Wilhelm’s, there is a cast of thousands at holiday dinners. This year, because of Mac’s condition, we scaled back. Although we missed all of our guests, it was nice to be low-key… and to serve a gourmet meal on paper plates (my brilliant idea that Mar and Ga agreed to!!).

About three weeks ago, Denver had a week of brutally cold weather. Up until that week, Mac and I had been getting out for walks regularly, since otherwise we were cooped up in the house all day. Well, with the frigid temperatures and Mac’s counts being down, we spent that entire week inside – literally, all week, with the exception of chemo, without a trip out. So, by Friday night, when Marshall came home from work, the boys and I told him that we must get out. Marshall’s response was that we weren’t supposed to take Mac out. I knew that and thought – to hell with the rules tonight, we are going out! Both boys knew we were breaking loose and were so excited!

At 8pm that night, when most reasonable parents are putting their kids to bed, we were bundling our kids up and taking them out! As we loaded into the car, we called Mar and Pa (Marsha and David) to either one, say goodnight, or two, invite them with us on our jail break. They were in! So we picked them up and all piled into our car for an adventurous Friday night! We went to a great Mexican restaurant that we love and we had an awesome dinner. I was nervous about bringing Mac out in public and planned to wipe down our table and the highchair at the restaurant with my Clorox wipes. We discussed on the car ride over how I would tell the waitress who seated us that we mean no disrespect to them by sanitizing their furniture, but that we had a sick baby and needed to do it. As we were being seated, I told the waitress just that. JB then chimed in “Mac has cancer and chemo and is bald and that is why he can’t be around any germs and why we needed to disinfect his highchair.” Oh boy. Such a talker he is! I then explained how much we just needed to get out of our house and this was the place we wanted to come. The next thing we know, a round of margaritas was delivered to our table from the owner. She told us she was honored that we chose her restaurant to come to, especially given the circumstances. It was so thoughtful… and of course, brought tears to my eyes.

And the waterworks continue for me these days… I find myself tearing up (or down right crying) more and more. Whether it is looking out my bedroom window to see my neighbors raking our leaves, or going into JB’s classroom for the Thanksgiving lunch and seeing a basket the size of a trash can filled with “chemo day” presents, food, and gift cards from all the kids and families in JB’s classroom, or finally being able to return to work where I could not ask for two more incredible bosses or a more supportive group of colleagues, or standing in the elevator at Children’s holding Mac when a random woman nods and says to me that God only picks the children with perfectly round heads to get cancer, because they still look so beautiful even after their hair falls out. I never use to be a crier… for better or worse, that has now changed.

One of the things that has been really difficult for us over the past several weeks (that we were just recently able to articulate) is that we are now “on the other end.” Both Marshall and I are usually the ones meeting others, our clients, who are in crisis, who have hit their rock bottom, and who desperately need our help, our advice, our counseling. Often, they are the ones crying. We are the ones in control, who provide guidance and expertise to those in need. Although not a truly accurate comparison between these legal and medical realms, the tables have now turned, and we are the ones who are desperately seeking help and guidance and advice from Mac’s doctors. We are not in control of this situation and it is such a hard thing.

In the interest of not turning this “update” into a novel, here is my last story. Earlier this week, a nasty stomach flu hit the older generation at our house. I was the first one down, and Marshall followed the next day. It was brutal and thankfully the boys never got it because we were able to ship them each to a respective grandparents’ house for 48 hours. Again, what would we do without Mar and Pa and Ga and Gumpy who step up to the plate on a moments notice. I was even too sick to take Mac to chemo on Tuesday so my mom, Marsha and David stood in. They were incredible – they texted a play-by-play, all Mac’s lab counts, everything they knew I was at home wondering anxiously about. They called themselves “Chemo Team B” — I call them Chemo Team A+.

Through all of the pain, grief and heartache we have been hit with, I wonder, everyday, how it is affecting our boys. At times I try to convince myself that Mac is too young to remember this when he gets older, but I have a feeling that no child who goes through cancer, even a child of Mac’s age, escapes this experience without it somehow being ingrained in who they are. Mac has such a sweet, strong spirit – even on really tough days. He is gentle, but he is a fighter. I know he will beat this cancer and he will go on. What will JB take away from all of this? I think what he will take away is how many people love him and his family…that generosity and kindness to others are good things and make the world a better place… that even when life gets really, really hard (because cancer f*u*ing sucks), you still go on…

Update #4 – November 21, 2014

Erin has been encouraging me to “chime in” on the blog for the last month.  I have been reluctant to do so as she tends to have a better way of finding the silver-lining in the tough situation that we face.  Regardless, this is my attempt to contribute.

The last week has been really difficult.  JB came down with Strep Throat on Saturday.  For the last 6 weeks, we have been hyper vigilant about germs in hopes that Mac would not get sick. Given his compromised immune system, a common cold can be a serious issue for him. While we knew that Mac would eventually get sick in the coming year, unrelated to the cancer, we have tried to do everything possible to delay the inevitable.  In some ways, our efforts seem ridiculous in that JB is in pre-school around 100+ little kids 3 times a week, Erin and I are frequently in and out of jail (for work), and Mac is at the hospital every week.  Nonetheless, we were not prepared when JB finally did get sick.  The anxiety of not knowing where this could go or what it could mean was rough.  Fortunately, it all ended well.  Our pediatrician is amazing and had JB examined, diagnosed and on antibiotics by 10:30 Saturday morning. Our parents, who have been rock solid, jumped to action and helped us keep the boys separated for the weekend.  We dodged a bullet in that Mac did not get Strep – but the experience underscored how fragile he is right now.

Mac had his third “big” round of chemo on Tuesday.  Erin and my mom had him at Childrens by 8 am and they were there until 5:30 p.m.  Mac was a trooper, like always.  He was smiling, playing with every expensive piece of medical equipment he could get his hands on when nobody was looking and even was able to overlook “hospital food” wolfing down anything and everything he could get his hands on.  Chemo days are draining.  It is hard keeping Mac occupied in a hospital room for 10 hours, trying to process everything the doctors and nurses are saying, and most difficult of all, seeing all the sick kids. It only takes about 2 minutes on the pediatric oncology floor to put everything into perspective. It is a really difficult place to ever feel “comfortable.”

Erin would say “Mac really struggled with chemo this time around.”  I would say it differently.  I would say, the last three days f*c*ing sucked.  Mac was hardly phased with the first two big rounds of chemo.  So, I am guessing that the cumulative effect finally caught up with him.  Within an hour of getting home on Tuesday, he turned ghost white and was vomiting violently.  That lasted all night and well into Wednesday. His longest interval of sleep was maybe 20 minutes.  Erin literally never left his side and was calm and in control. I wish I could say the same for me.  At one point in the middle of the night, Mac was so physically exhausted that he was not even waking up when he got sick.  We were scared he would choke on his own vomit, that he was getting dehydrated and whether or not this was a normal chemo reaction or something different.  Mac’s oncologist, whom I am beginning to think might actually be a saint, was on the phone texting with Erin throughout the night, walking us through things.

Mac is coming around, but it was scary how sick he was.  The hardest part of the last couple days for me is seeing him so sick and vulnerable and being totally helpless.

The “protocol” for this type of cancer, for somebody Mac’s age, calls for 40-some weeks of chemo followed by “local control” – either surgery or radiation- usually at 12 weeks.  We are on week 7, so we have decisions to make in the coming weeks.  Both surgery and radiation are effective against this type of cancer, however, each carries with it its own risks and consequences.  We have talked to many different doctors about our options.  We have also tried to do our research.  Unfortunately, there are a lot of unknowns and no easy decisions.  This is a rare location for this particular type of tumor and Mac is younger than most of the other kids who have to go through this.  That all translates to there are no black and white answers, which in turn, translates to frustration and anxiety for us.  We are overwhelmed by the magnitude of the decisions that we are going to have to make in the coming weeks.  Balancing quality of life concerns with a desire to be as aggressive as possible in attacking the cancer seem to be objectives at odds with one another. With that said, I remain confident that we will get this figured out.  Mac’s doctors are amazing.  Their constant willingness to dig deeper, talk to more people, and look for more answers is incredible and inspiring. Erin and I already feel that we have incurred a debt we can never repay for everything they have done for us, and more importantly, for Mac.

In closing, Mac is incredible and cancer sucks.

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Update #3 – November 4, 2014

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It has been almost two weeks since our last update and we have good news to report. After last week’s ultrasound of Mac’s bladder and prostate, we learned that his tumor is responding to the chemo and it is shrinking. Because the tumor shrunk enough, the doctors were able to remove Mac’s catheter in hopes that he would be able to pee. And he peed!! We have never been so excited to change diapers in our lives! Although Mac did great navigating life with a catheter in for a month, it was definitely an added stressor that was hard to manage with an active 13 month old. The night that the catheter came out he slept so soundly… and through the entire night, which had not happened since his diagnosis.

Mac had his long day of chemo last Tuesday and another short day of chemo yesterday. He has been tolerating the treatment well and continues to have a smile on his face at each appointment. After last week’s treatment he was more tired than usual and had some vomiting, but nothing that we weren’t able to manage at home. Fortunately, Mac still loves to eat, which I love to see. He also loves to crawl around the house, read his books and play with his brother. Sometimes I have to remind myself that he can still be a “normal” little boy and that he isn’t just a cancer patient. It is amazing how all-consuming a diagnosis can become – and as we adjust to our “new normal” we try each day to appreciate all that Mac can do, even with cancer. On that note, last Friday we dressed the boys up and went trick-or-treating around our neighborhood. We had lots of fun! At literally every house, JB would say trick-or-treat and then promptly follow-up with, “Also, can I please take a piece of candy for my baby brother, Mac?” Good thing Mac has someone looking out for him! When we got home, JB wanted to count all of his candy – 103 pieces to be exact. When we reminded JB about how nice it was to collect all that candy for Mac, and inquired about half the candy technically being Mac’s, JB said that the candy had too many grams of sugar in it for Mac, and that he better keep it all. Again, what would Mac do without JB… and what would JB do without Mac?

Throughout the last two weeks we have continued to meet with different doctors/specialists about Mac’s diagnosis and potential courses of treatment. It is unbelievable how exhausting it is just sitting in a doctor’s office or hospital exam room with a doctor for a consultation like this – you’d think we were training for a triathlon! It is usually a toss-up as to who looks more spent when we leave… Marshall or me. What we have begun to realize is that the doctors don’t have all the answers. Mac’s age, type of cancer and location of his tumor is a scenario that is proving to be more unique than we thought, which is tough for us as his parents. I met another mom of an 18 month-old girl with leukemia yesterday at clinic. As Mac was flirting with this sweet bald baby girl, the mother and I started to chat about our babies with cancer – when were we diagnosed, how’d we know something was wrong, what was the course and length of treatment, etc. This mom said that one of the best things for them was that everything has been so streamlined – the type of chemo, the length of treatment, everything, was all mapped out for them on day one when they received her daughter’s diagnosis. She said that they didn’t have to make any decisions, that the course of treatment and what to expect was very well defined – black and white. Never in my life did I expect that I would be envious of another mother with a child who has cancer, but yesterday I was. I thought to myself how much I wished Mac’s situation were black and white… that the doctors could tell us exactly what we needed to do in terms of treatment for the best outcome. Do this chemo on this date; do this surgery on this date. Period, end of story, as JB would say. I wished that we, as Mac’s parents, didn’t have to face so many choices, so many “options,” and so many unknown outcomes. For us, nothing seems black and white, instead we are living in the gray area. We will continue to collect as much information as possible so we can make the best decisions we can for Mac going forward. As overwhelmed as we feel at times, we try to also remind ourselves that Mac is an incredible baby. He is strong and he is a fighter… and he will get through this. Please keep sending love and prayers – we know they are working!

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Update #2 – October 22, 2014

 

We have had another very busy week and I’m not quite sure where the days have gone.  Most importantly, Mac has remained healthy this week and we have been able to stay at home. We went for his “short” chemo treatment on Tuesday and he was a rock star.  Mac’s blood counts were surprisingly good again this week, which is great news. Even when the nurses are accessing his port for blood draws and to give the chemo, he is smiling…and Mac’s smile lights up the room. He is getting good at sticking his pointer finger out for the pulse/ox machine and he opens his mouth and says “ahhh” on command when the doctors need to take a look inside. It is a toss up as to what provides him with more entertainment… the automatic Purell hand-sanitizer dispenser or the doctor’s stethoscope! We are learning the routine on our “chemo days” and are so appreciative to have a grandmother or aunt with us to help. Next Tuesday we go in for our long day of chemo, so are already planning how to attempt to keep him occupied. 

Our families continue to be amazing and help more than we ever thought possible. Our friends and colleagues also continue to reach out to us and support us, which makes a world of difference. We are so touched by all who have sent messages or emails or phone calls – the outpouring of kindness from our communities is unbelievable. After enough time at Children’s, and seeing what other families are going through (some with little support), we are again reminded about how fortunate we are. Marshall and I also talk daily about how incredible the staff at Children’s has been. The doctors are always available to us when we need them or have questions, the nurses at the clinic are great, and one of our close family friends, who happens to be a veteran doc at Children’s, has literally been our life-preserver, keeping us afloat, since Mac’s diagnosis. 

Christmas in October…
Almost every day since we have been home from the hospital something has arrived at our house. People have been so generous. The meals that have been delivered are delicious (and all three of my boys are thrilled that I am not cooking!).  The groceries that miraculously arrive in our kitchen have spared me trips to the store and Costco. And the gifts for the boys have been a welcomed distraction. At one point last week, I contemplated taking some of the gifts and stashing them away for Christmas, or taking them to the hospital to donate to other kids in need.  But when JB woke up from his nap and came down to find his second gift-wrapped package on the front porch and said, “Mom, this is like having Christmas, but it’s October!!” I decided to stop worrying about too many gifts at once or the boys getting spoiled or stashing gifts away.  I think, if anyone deserves Christmas in October, it’s these two sweet boys. 

Late night hair cutting party…
Mac’s hair started to fall out last Sunday… Hours after we took some great family pictures at our park. Just like they told us, one day it would just start coming out in clumps. There was hair everywhere. Yesterday, after chemo, we were eating dinner and Mac started coughing. He had put a handful of food in his mouth that was also accompanied by a huge clump of hair. As we came to his rescue and tried to fish the hair out of his mouth, he started to laugh. Marshall was almost in tears, but Mac was smiling. Mac reached his hands up to his head, while looking straight at Marshall, and pulled another big chuck of hair out. Still smiling. Mac was telling us that it was ok… It’s only hair… And that it is a nuisance now.  After dinner, Auntie Polly, JB, Mac and I went outside and cut what was left of Mac’s hair. Marshall stayed inside. Mac looks darling “as a bald,” as JB calls it. Who needs hair to be incredible?? Not Mac! 

Assistant for a day…
Last Friday, Marsha took JB to school and there was a note on the classroom door. The note said that one of the kids in the class had strep throat earlier in the week. Marsha did not let JB into the classroom and immediately called me and asked what to do with JB. My first thought was to bring him home as we cannot risk exposing Mac to any illness at this point. Then, I remembered how excited JB was about “shabbot sing” at school and I thought about how disappointed he would be if he had to leave school. How was I going to explain to JB that because his brother has cancer, he can’t go to school today – doesn’t seem fair.  In buying myself a few minutes to make up my mind as to what to do, I asked Marsha to talk to the school director (who knows JB well and knows about Mac) about the situation and call me back. My phone rang 5 minutes later and Marsha said, “Handled.”  The school director instantly handled the situation.  It took her about six seconds to come up with a plan. She looked at JB and said she needed as assistant for the day. She needed help in the office, she needed help researching owls (a fascination of both of theirs), she needed help setting up the auditorium for shabbot sing, and she needed a special friend to eat lunch with her in her office. JB’s eyes lit up and without missing a beat, he was her man for the job! What an impressive school director, I’d say. How lucky and special I felt that entire day… that she was willing to do that for my son… And for my other son.  Thank you. 

Update #1 – October 14th, 2014

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Mac was released from Children’s Hospital last Monday night, 10/6, after he received his first dose of chemo most of Sunday. As we had been at the hospital for a week with a combination of aunts, grandparents, and us always at Mac’s side, it took a few hours for us to pack up the hospital room and head home.  Seemed like we had been living there for months! Mac seemed very relieved to be at home, in his own crib.  He slept for nearly nine hours his first night home, which was a drastic improvement from his sleeping patterns at the hospital.

We are adjusting to our life at home with Mac’s diagnosis.  He has a catheter, which has been stressful for Marshall and I to tend to without a nurse’s supervision.  Also, due to his chemotherapy treatment, Mac is very susceptible to infection.  We sterilize our house from top to bottom multiple times per day.  JB took quickly to the new routine of using hand sanitizer, taking off shoes, then washing hands whenever we enter the house.  He is quick to remind all of our guests to do the same and always assures them, “it’s for my baby brother Mac, so he can stay healthy.”

Mac had another chemotherapy treatment at Children’s yesterday, 10/13.  We were there for a few hours and Mac was a star patient as usual. The nurses accessed his port and he did not flinch. So brave. The doctors said he looked great and after receiving his blood work, were pleased to see that his counts were good. Mac will get almost a year of chemo (in three week cycles, with shorter treatments every week). Again, we remind ourselves that this is a marathon, not a sprint. There are still several decisions about his course of treatment that need to be made. We are so fortunate to have such incredible family support and an amazing team of doctors that are helping us with these tough decisions every step of the way.

 

People are amazing…

-Last week after Mac’s first chemo treatment we got to come home. Obviously, it was great to be home, but we were so nervous about taking care of Mac without the security of the nurses being two minutes away, or just down the hall. JB obviously picked up on my stress surrounding Mac’s catheter, and caring for it properly. During one diaper change, I realized we had run out of the gloves I was supposed to be wearing. I called for Marshall to help and both Marshall and JB came running into Mac’s room. As Marshall and I discussed what to do and where to go buy more gloves, JB quietly stood back and assessed the situation, and then he was gone. I assumed he didn’t care much about our “glove problem” and returned to playing with his toys, or writing down his numbers. But, within a couple of minutes, he came back into Mac’s room with something in his hands. JB said, “Mom, I know you are out of gloves to change Mac. I got you this seran wrap from our kitchen to put all over your hands and fingers so you won’t get pee on you when you change Mac’s bag.” I didn’t know whether to laugh or cry when JB said this to me. Way to problem-solve, right? Three year olds are awesome. Who needs sterile gloves when you have seran wrap?!? Thanks, JB! You are amazing.

-Our first day being admitted to the hospital was rough. Between the sleep deprivation from being up all night in the ER the night before and the overwhelming news that Mac’s tumor could be cancer, we were in rough shape. Most of that day was a blur, but one thing, we will never forget. After we got Mac situated in his hospital bed crib and oriented ourselves with all the equipment in the room, the nurses station, etc., we noticed a purple card sitting on the counter in the room. In black capital letters, the outside of the card read, “PAY IT FORWARD.” I opened the card and read… tears started to stream down my cheeks. The card was from the mom of the little boy in the hospital room a few doors down from Mac. She had seen us moving in and saw what a hard time we were having – her message said that she has been in our shoes. She wanted to offer her support and tell us that as hard as this is, we will get through it. She included $40.00 in cash in the card – she said “I know it’s not much, but hope it helps a bit.” A complete stranger, who had never even met us before…dealing with her own tragedy with her son, and still was able to do this for us. I have kept her card and the $40.00. Some day, I will be able to pay it forward. That mom is amazing.

-We have been home for just over a week now and we are all hanging in there. Some moments, we are hanging by a string, but we are still hanging! Everyone has been so thoughtful and we appreciate it so much. The cards, the food, the gifts, the calls, the texts, and all the positives thoughts to Mac have been incredible. Thank you. Mac has done surprisingly well and his spirits remain high. His laugh and darling smile still light up our world everyday. I don’t think it is any coincidence that Mac has learned to kiss this week since being home. He kisses his Lovey, the characters in his books, and anyone and anything he can get his hands (or lips!) on. He is a smart little boy and he knows how much people love him… he can’t talk yet, but I know he wants to make sure he tells people how much he loves them too. Mac is busy sending kisses. He is such a trooper – and completely amazing.

46 Comments

  1. Beth Brown

    Erin, you don’t know us but we are friends of your parents. Ga just told us last nite about all of this. We are so saddened to hear of all that you are going thru, all of you. Share your journey as widely as you can bear to – that also is a way of paying it forward – but also you will need a wide net of support, including prayer support and you will have that with us for sure. Love and kisses to Mac– Beth, Wayne, and Paige Brown.

    Reply Oct 18, 2014 @ 14:35:39
  2. Marleen

    This web site is awesome and I love the photos of all of you. Steven and I are just steps away if you need anything, at anytime. We are here for the journey with you. Give Mac a kiss for us and tell JB I love the song!!

    Reply Oct 18, 2014 @ 17:51:21
  3. Laurie Rose

    Erin, you and Marshall are the best parents and little Mac could have hoped for. So proud of you guys. The monks and I are sending good energy every day.

    Reply Oct 19, 2014 @ 02:11:33
  4. Pat Flint

    Erin and Marshal,
    I was one of your Mom’s roommates at CWC along with Laurie and Molly. I can only imagine all the love and support that you are receiving knowing your wonderful mother. I also send love and will visit your sight often. Thank you for having it
    Pat

    Reply Oct 19, 2014 @ 13:40:35
  5. Stephanie Muldberg

    I am Michael Roth’s Aunt- and I have been thinking about you since Izzy told me about Mac. I think that you will find that kids with cancer are some of the bravest kids there are. I love the story about the woman who gave you $40. When my son Eric was in the hospital, I too was having a bad day and one of the parents offered me one of her meal tickets. Her thoughtful gesture remains with me today. I paid it forward many times.
    I am so glad that you have so much support- I know that it can be difficult to ask for help- but I hope that you do. People want to help- they just don’t know what to do.
    Sending your family hugs. We are all crazy about Izzy!!!

    Reply Oct 19, 2014 @ 23:02:17
  6. Jeanne Gilchrist

    Erin and Marshall,
    Lots of love, hope, and prayers from all of the Gilchrist’s.
    Love,
    Jeanne and Tim

    Reply Oct 20, 2014 @ 01:58:33
  7. Peggy & Bob Moir

    Erin and Marshall,
    As always your family is in our prayers. Mac is a strong little guy. He is already showing us how brave he is with his winning smile and positive attitude. I know you have a great support system, but I am only a plane ride away if you need me! Everyone wants to help…being in Virginia I feel so helpless, but am filling the prayer box daily! Please give Mac an extra hug and kiss from me..and also give JB a big kiss from me. What an awesome big brother!
    Love,
    Peggy and Bob

    Reply Oct 20, 2014 @ 21:04:50
  8. Tara Emrick

    We are thinking of all of you daily and sending so much light and love. Please know we are here for you and will continue to hold space….sending healing light to Mac and love to all of you….

    Love, Tara & Bryan & the entire HIP staff

    Reply Oct 21, 2014 @ 03:43:39
  9. Mary & Walt Wooten

    Erin and Marshall,
    Mac and all of your family is in our thoughts and prayers from Santa Fe. We are glad you have such great support.
    Much love,
    Mary & Walt

    Reply Oct 21, 2014 @ 03:45:21
  10. Ann and Toby Hodson

    Beautiful photos and website Erin and Marshall!

    Toby and the all of us are thinking about you every day. Loved reading about
    JB’s help and brilliant thinking. They are such adorable brothers.

    Sending much love,

    Aunt Ann

    Reply Oct 21, 2014 @ 07:32:46
  11. Courtney Johnston

    Erin and Marshall, I just heard the news and am in tears here in my office reading through this site. I am heartbroken for you all but I have no doubt that Mac will kick this cancer’s butt and assemble an army of adoring fans in the process. You are both so strong as individuals and as a couple – you will undoubtedly get through this with grace and humor. Please do not hesitate to pick up the phone and call or text me (303-521-2678) for anything at all. We live very close to Childrens and we are happy to help. We can take JB if you ever need it – one more kid in our zoo is nothing 🙂 Please know we are praying and thinking of you all. Love, Courtney and Mike

    Reply Oct 21, 2014 @ 17:36:40
  12. Anita Wagner

    Not a day goes by that I am not thinking of all of you and sweet Mac and his and your marathon. I have no question that you have the strength and love to make this journey to recovery but I so wish you didn’t have to. We carry you in our hearts and are here in any way you might need.
    Sending love and light.

    Reply Oct 22, 2014 @ 15:09:15
  13. Jessica

    Sending you all our support and well wishes. Each one of you will be securely nestled in our prayers. We will check back often — we want to be with you on this journey. Lots and lots and lots of love, Jessica, Albert, Lucia and Rafa

    Reply Oct 22, 2014 @ 15:14:09
  14. Tracey Guerin

    Sending so much love, light, and positive thoughts to you, Mac, JB, and your entire family. I have no doubt that the only memory Mac will retain of this difficult time is all the love and attention he received. xoxo, Tracey

    Reply Oct 22, 2014 @ 16:33:10
  15. Judi Perrill

    Erin,
    Just talked to your Mom to learn of this website – please know Mac and you all have been in our thoughts, hearts and prayers and are here for anything you need anywhere along your “marathon course”.
    Sending all my love and hugging you from afar –
    Judi (aka Nonna)

    Reply Oct 22, 2014 @ 16:45:26
  16. Amanda Brinton

    The girls and I have listened to Mac’s theme song over and over. You are all in our thoughts daily. We are sitting with the difficult and keeping our positive light with Mac in our hearts. Lean in Erin and Marshall, as much as you need to. Love to you all
    Amanda

    Reply Oct 23, 2014 @ 02:31:11
  17. Sue Danielson

    Erin and Marshall, since running into your Mom, Erin, while we were in Denver, you have all been forever in our thoughts. I have seen firsthand the love and support yours and Marshall’s family has always given and know your will find the strength and guidance to all get through the months ahead. I’m sending you a hug and trust we will keep Mac and all of you in our prayers. Please tell JB hello from “Nonnie Sue”.
    Warmly, Sue and Dave Danielson

    Reply Oct 23, 2014 @ 16:05:30
  18. Andi Lavin

    Erin and Marshall,
    Seeing Mac’s smiling face in these amazing pictures brightens my day so I can only imagine how sweet he is to be around in person. I’ve gotten to know the Breit family pretty well and I can safely say that Mac has an incredible amount of love and support around him which is such a beautiful thing. There is so much good in your family, it is truly an inspiration. All of you are in my thoughts daily and if there’s anything I can do from New York City or that my brother in Boulder can do to help, we are more than happy to help.

    All the love being sent to Denver,
    Andi

    Reply Oct 24, 2014 @ 15:11:47
  19. Jayne & Rex Splitt

    Erin, Marshall, and family,
    Your family has the positive energy, support from family, friends, and community, and a great medical team caring for Mac. We believe in the power of prayer and have been praying for your entire family that all of your needs are met and that your daily journey is lighter because of the outpouring of love and acts of service from family and friends. Thank you for taking the time to journal Mac’s updates and share with us.
    Our love & prayers,
    Rex & Jayne Splitt

    Reply Oct 24, 2014 @ 16:13:57
  20. Ruth Mares

    Dear Erin, Marshall, JB, and Mac,
    Thank you so much for sharing your beautiful pictures and the story of your journey. You and your entire extended family are amazing! You are in my heart and thoughts every day and I am sending lots of love and support and good wishes and positive thoughts for a successful outcome to this marathon!
    Ruth Mares

    Reply Oct 24, 2014 @ 18:04:38
  21. Paula Black

    Just want you to know that I think about all of you every day. Know I am sending love and healing energy to each of you. Through this arduous journey, may you find a rainbow each day. Hugs, Paula

    Reply Oct 24, 2014 @ 22:28:17
  22. June, Tito & Grace

    You guys are doing an incredible job! There are no ways to prepare for something like this. Keep loving and supporting each other and baby Mac will be cancer free soon enough!! I think about your family and surround you all with a beautiful healing light! I wish I was there to put my arms around you. XOXOXO
    June

    Reply Oct 28, 2014 @ 01:03:47
  23. Brooke Reves

    Sending lots of love and positive energy your way. I think about you all daily and I love your ability to always see the light. What incredible love and connection you all share. Thank you for keeping us all updated along this journey and know that we are sending you love, hugs and light.

    Reply Oct 28, 2014 @ 01:32:10
  24. Kim Oliver

    Erin, Marshall in the words of April it’s”Auntie Kim”. Thank you for sharing your journey of this precious angel. I’m asking God to place his loving arms around Mac healing his little body, and then blessing you with strength to get you through each day. Keep smiling its contagious and a sign that everything will be alright!

    Reply Oct 29, 2014 @ 17:53:42
  25. Miss Lyndsey

    Hello Campbell-Breits!

    Thank you so much for sharing Mac’s journey with all of us! Your HIP family thinks of you everyday and we are with you, whenever you need anything. Mac is such a special little guy and has an absolutely infectious smile! I know he is going to give this thing everything he’s got. Tell JB to keep up the good work and keep everyone in line. He is such a great big brother! Sending hugs and positive ju-ju to you and yours! Xoxo

    Reply Nov 03, 2014 @ 01:38:18
  26. Susan Charles

    Dear Erin and Marshall,

    You, Mac, and JB have been in my mind and heart since hearing about Mac’s cancer when staying with Marsha and David Oct. 1 and 2. I had the pleasure of chatting with JB and watching as he showed off his spelling skills with Marsha. He is such a charmer — genuinely excited about others and life in general. You are fabulous parents, which is no surprise!! Now JB shares his sweetness by helping Mac choose his favorite song and being the champion big brother. You will all continue to navigate this challenge in your wise, loving manner.

    Thank you for this website. It is probably a source of strength for you but still takes your precious time and energy. Erin and Marshall, you are all in my prayers each day. love, Susan

    Reply Nov 05, 2014 @ 03:35:43
  27. Dolores Santos

    Dear Marshall and Erin,
    The only thing that I can say after seeing this beautiful page is that Mac is one tough guy and that he will be okay because he has 2 of the best parents I know and the best big brother he could have asked for! My family and I (specially Benjamin) keeps praying for him and for you…. I know that sometimes might seem that there is no way out but Mac himself is teaching all of us to be positive and that with a smile everything seems better.
    Keep hanging in there and all our prayers are with you!
    Dolores, Paco and kiddos!

    Reply Nov 05, 2014 @ 23:22:18
  28. Amanda Brinton

    Thanks for the update. Your ability to find the positive and insight within this experience is so special. I am sending love and comfort around all the decisions you guys have to make. You are in our thoughts and hearts. Love to you all,
    A

    Reply Nov 11, 2014 @ 03:53:24
  29. Casey Madison

    Erin and Marshall,

    Thank you so much for keeping this blog. I love seeing the photos and reading the updates…the ups and down, questions, and triumphs. JB’s insight is especially inspiring:) Mac is so fortunate to have parents like you! I hope to see you guys over thanksgiving.

    Love, Casey Madison

    Reply Nov 12, 2014 @ 02:59:19
  30. Polly

    The family pictures in the park are incredible!! I also love the picture where Mac is doing his “chores”, ie unloading the dishwasher, and then having a popsicle break with JB. Strong, happy (busy!!) and as cute as can be!!!

    Reply Nov 17, 2014 @ 16:16:23
  31. Rita Urness

    Erin,Words cannot express how sorry I was to hear the news about Mac the other day while speaking with Marsha. I have no doubt that little, strong, happy Mac will flourish given all the love, support and positive energy that surrounds him from your wonderful families and friends. Mac as well as your entire family is in my daily prayers. Rita xo

    Reply Nov 19, 2014 @ 15:03:42
  32. Gina Dardano

    Way to tell it like it is Marshall! No filter. No censoring. Just plain and simple. Cancer SUCKS.

    Reply Nov 22, 2014 @ 04:52:09
  33. Peter Nechtem

    Erin and Marshall,

    Sara and I have been following your updates from up here in Massachusetts. You two are amazing parents. We are sending positive thoughts and prayers your way on a daily basis. Lots of love to all of you, especially little Mac!

    Reply Nov 25, 2014 @ 22:45:35
  34. Steve Rosen

    What Gina said.

    Reply Nov 26, 2014 @ 00:58:07
  35. Steve Rosen

    P.S. As Marshall & Erin’s neighbors the past several years, our garages literally face each other, it has proven heart wrenching to know how much their lives and Mac’s have been profoundly changed, and literally overnight several weeks ago. From the little we’ve seen of them since, and understandably so, we can only try to grasp at the magnitude of the decisions they face – and will face – the courage it will take dealing with those challenges. Erin and Marshall. As I’m sure you both know, our hearts and thoughts are with you at all times, with ALL of you, and we’re always here to help however possible. Marshall. You can write more than a brief, and a good one at that!. Erin. Prod him more often. Well done by BOTH of you on your updates. You guys are rock stars – BOTH of your children are blessed to have you!

    steve-o & marleen

    Reply Nov 26, 2014 @ 01:52:42
  36. Aaron Mauck

    Thanks for another update. I constantly wonder how Mac and you all are doing and I always look forward to the updates. It’s hard not to be moved by them and I probably won’t read the next one in an open office… You’re surrounded by countless folks that care about you guys just like you and your families have surrounded and support Mac. Please let us know if there is anything you need.

    Aaron

    Reply Dec 08, 2014 @ 19:42:11
  37. Brooke

    Thanks so much for taking the time to fill us all in. I think of you all often and send you vibes of love, strength and connection. You are one of the strongest MOST loving beings there is and I admire and adore you lady! We are all here if you need anything… even just to take the dog for a walk. REALLY. Love you

    Brooke

    Reply Dec 09, 2014 @ 03:51:09
  38. Aunt Lynda and Uncle Eddie

    Erin, I wanted you to know that we have prayer groups that are praying daily for Mac. I believe after the phone call tonight that our prayers are working. Uncle Eddie and I wait patiently for the results on Monday. You and your family are in our thoughts and hearts each and every day. Stay strong my lady and all will turn out well! Love you to the moon and back. Aunt Lynda

    Reply Dec 09, 2014 @ 23:58:36
  39. Moira

    I am most definitely not a crier but reading about your Mexican Night Out really got to me. The kindness, generosity and good will surrounding you is a tremendous reflection on both of you and your wonderful boys. Hugs and kisses to your little trooper. Moira

    Reply Dec 11, 2014 @ 00:17:54
  40. Samantha

    Thank you for creating this amazing site! The posts, pictures, and positive energy are incredible. Mac is truly a special boy with the absolute best support system. He and all of you are in our thoughts daily. XOXOXOXO

    Reply Dec 19, 2014 @ 20:25:44
  41. Jan Reves

    You are strong parents and have a couple of extraordinary boys. Together, you will face these challenges and ultimately do the very best for your little guy. I can’t help but think that Mac is teaching us all a thing or two about life!

    Reply Dec 20, 2014 @ 22:47:44
  42. Lainie Hodges

    Sending so much love and light. You’re all amazing.

    Reply Jan 19, 2015 @ 21:03:21
  43. Claire Hardon

    Such an amazing update. Thinking about you and praying for you as you embark on your Boston journey. I’m so glad you have some family close by, and of course if I can do anything for you Philly isn’t too far! Stay strong, keep the faith & I know Mac will keep you smiling through this difficult time.
    Love to all!

    Claire

    Reply Jan 23, 2015 @ 19:16:07
  44. Joan Darcangelo

    This site is so amazing, I cry , I laugh, I smile looking at all the wonderful pictures and simply love the unbelievable support you have from your remarkable family! Fran and I think of all of you every day and you are in our thoughts and prayers. That precious little smile on Mac’s face has got to help you get through these tough days.

    We love you all ❤️
    Joan and Fran

    Reply Jan 28, 2015 @ 02:31:04
  45. Michelle Mulchi

    Hi there. I was given a link to your site by my FaceBook friend, Mark Breit. I’ve been reading your updates, and am so inspired by the strength of your family as you go through this terrible ordeal. I hadn’t planned on leaving a message until I read the part about J.B. having a fascination with owls. I’ve been following a live cam of a Great Horned Owl mama sitting on two eggs in a nest in Savannah, GA. It is so interesting to watch, and I thought it might be something J.B. would like. The web address for the Cornell Lab bird cams is http://cams.allaboutbirds.org/all-cams/#_ga=1.43745253.1519980541.1421885146. Just scroll down until you see the one for the Great Horned Owl. Please know that your family will be in my thoughts and prayers in the coming days.

    Reply Feb 02, 2015 @ 19:50:24
  46. Nel Robison

    Hi. Erin, I just spoke with your Mom this morning and she filled me in on what you all have been through since September. My heart aches for all of you, I know it is horribly difficult. I love all your pictures and look forward to meeting your boys when this ordeal is behind you, Mac has recovered, and life returns to normal for all of you. You are all invited to come back to Nebraska at that point, we don’t have Ninny Nanny any more, of course, but Tiffany has sheep and the little lambs are simply adorable. Please know that you are all in my thoughts and prayers.

    Reply Feb 04, 2015 @ 22:51:06

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