Update#10 – April 10, 2015

Welcome home Mac!!

We will miss you guys!

Weekend dinners with Aunt Martha & Uncle Allan

Laughing with Aunt Martha

Mac & Julio doing music therapy

Briah & Mac after treatment

ohammed & Mac rocking out before radiation

Last proton beam radiation treatment!

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

I GOT THIS!

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

“Proton Radiation Friends”

Celebrating with my radiation therapists – with me every morning.

Celebrating with “Ky-Ky”

In the recovery room on my last day.

Daily walk with Will at Christopher’s Haven.

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

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

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

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

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

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

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

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

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