Update # 11 – May 10, 2015

Happy Mother’s Day

Outside with Ky-Ky

Fun at the zoo!

Snuggling at chemo

JB’s postcard project!

Laughing hysterically with my brother.

Who me?!? Just out for a drive…

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

Samples at the grocery store! Yum!!

Oh boy!

7am! Ready to conquer the day!

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

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

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

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

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