One Year

December 11: One year ago today our world came to a pause with 4 words: “your son has cancer.” While it is impossible to describe the all-consuming fear, anger and sadness that comes with such a diagnosis, watching Michael through this journey has been remarkable. At 4 years old, he is a warrior. His strength, resilience and smile is infectious. He has overcome obstacles that a grown (wo)man could not endure. Only raw facts can paint a picture of his continued bravery:

  • 116 overnight stays in the hospital
  • 28 cycles of chemotherapy
  • 16 radiation treatments
  • 2 surgeries
  • 24 blood transfusions
  • 11 trips to the ER
  • 126 million new stem cell
  • 6 months of immunotherapy

And by the grace of God, he is here. Fighting.

Our wish for him today and every day is that he continue to live life to the fullest. May he always embrace challenges in life with a smile … may he always be surrounded by love … and may one day he be blessed with a cure.

To our friends, family, co-workers and community that have supported us through this year, “thank you” will never be enough. We owe you a part of ourselves. To the angels that watched over us, thank you for answering all our tearful pleas. And to all the doctors, nurses, teachers, social workers and more, thank you for loving and caring for our family like your own.

The journey for Michael is far from over, but one thing is certain: he is strong, he is brave, and he is LOVED.

Ready to Fight

This week marks 3 months (90 days) since we learned Michael has cancer. To sum up our sweet boy’s bravery in a few words would not do it justice. The numbers speak for themselves:

  • 21 doses of chemotherapy
  • 17 blood / platelet transfusions
  • 2 surgeries
  • 42 overnight stays in the hospital
  • 7 scans

These are obstacles a grown man or woman should not have to handle, let alone a 3-year-old child. Yet, when I look at Michael I see the face of bravery and resolve. The look of a boy far beyond his years, who fights for life every day, faces each obstacle with a smile on his face and a bag of superhero figurines by his side. He defines the term “courageous” and has taught us more about strength, perseverance and love than we ever knew before.   

This week will test that courage to a new level. Michael has been cleared for surgery and will undergo a lengthy operation within the next few days to remove roughly 80% of his tumor. This is a huge milestone in his treatment plan and one that we have prayed long and hard for. I know he will make it through this phase stronger, ready to take on the next phase of complex treatment, and surrounded by love. And I am confident we will too.

I’ve heard the phrase many times, “it takes a village,” but never understood the meaning until recently. Words cannot express the gratitude we feel for all of you – our friends, family, co-workers, community, etc. You have taken us into your hearts and into your families. You have fed us, cared for our children, been a compassionate listener, sent messages in the middle of the night, taken on added responsibility, and so much more. We are making it through this nasty nightmare because of you.

Our older boys, Anthony and Peter, are making it through because of you too. Thank you to everyone who supported Anthony on his St. Baldrick’s project. He raised nearly $13,000 (that is insane!) and will shave his head on live TV this Friday. What’s more, his Middle School classmates raised almost $300,000 (this blows my mind!). Together we will fight this awful disease and together we will make a difference. We already are.

“I Love You Great”

We officially passed the first month of treatment and our second round of chemo. The first round of chemo was really rough on Michael, but the second week of treatment was a bit more tolerable. This month, we also underwent surgery to place Michael’s central line in his chest. He likes his “tubies” much better there than in his arm and often pretends he is Doc McStuffins by helping us and the nurses clean them daily.  

Not surprising, we were thrilled to get discharged from the hospital yesterday and, if all goes well and he stays fever free, we should be home for 10 days. On January 22, we will return to the hospital for his stem cell retrieval, where his stem cells will be collected over 1-2 days, frozen and stored in preparation for the 6-week Stem Cell Transplant that will take place later in his treatment plan. For now, we will be grateful for the time we have at home, playing and watching Peter Pan on repeat. 😊 Then on January 29, we will return for Round 3 of chemotherapy, which is slated to be a high-dose, brutal round targeted to kill the neuroblastoma cells. I am dreading this treatment and I absolutely hate cancer.

That said, if this last month has taught us something positive, it is that we are surrounding by incredible friends, family, coworkers, and an amazing community.  Friday reminded me of just that, when Anthony came home from school smiling ear-to-ear carrying a bag of hundreds of homemade cards from 6th graders at Lincoln Middle School. As I read through the cards — some from kids I know and many from kids I have never met — you could feel the outpouring of love for our sweet boy. They drew pictures of Michael’s favorite cartoon characters and wrote endearing notes in which they promised to pray for him.

As tears rolled down my face, I realized that we need to appreciate the good that this awful disease is creating. We need to find ways to turn adversity into resiliency … find strength during our worst days … and hope that this disease teaches us all to take time to love more.      

The other night, as I sat with Michael in the hospital and whispered “I love you”, he whispered back something that, at the time, made me laugh. He said: “I love you great.” As I reflect, he has it right …  and we “love all of you great” for supporting us through this time.

Heroes do not need hair

It is hard to believe that we are going on 18 straight days in the hospital. In some ways it feels like an eternity, in other ways it feels like time has stopped. Quite honestly things feel surreal, as Michael looks and acts the way he always has … the way any rambunctious 3 year old should. But deep down inside, we know the world has shifted and life as we know it is changed. 

Today was a reminder of that when Michael started to lose his hair. Small, fine stands of hair all over his hospital pillow, bed and jammies. In the grand scheme of things, this should not feel like a big deal, but it is a subtle reminder that his diagnosis is real and this horrible illness will be on display for the entire world to see. I pray that kids are nice and that no one casts judgement. And I pray that his brothers are not alarmed by the drastic physical changes that will impact our sweet boy before they get to see him next.  

We keep trying to remind ourselves that the road to recovery is long and we are still at the starting line, but we have courage, love, family and friends at our backs. Nevertheless, days like today are tolling. 

Hopefully tomorrow is a better day and we will learn to be thankful for all the struggles we will go through in life. I’m hopeful they will make us stronger, wiser, more patient and kind. I am confident these struggles will not break us … They will make us. 

After all, who ever said heroes needed hair?

Thanks for your prayers

It is with deepest appreciation that we thank you for the outpouring of love, support, calls, emails and texts over the last week. What had started out as an ordinary day on Tuesday, December 11, quickly turned on its head when we brought Michael to the pediatrician for a typical belly ache and fever. It was within moments of seeing the alarming look on the doctor’s face in the exam room that we knew something was wrong. 

In the hours to follow, we would learn that Michael has a massive tumor (about half the size of a football) growing deep within his abdominal cavity and, soon after, came the dreaded phrase that no parent should ever have to hear: “your child has cancer.”

In particular, Michael has a cancer called Neuroblastoma – a rare pediatric cancer that formed from immature nerve cells on his right Adrenal gland (which sits just above the kidney). It is an aggressive cancer that impacts only 700 children globally a year. Getting the right expert to combat his cancer was imperative.

In the midst of chaos our first 24 hours since diagnosis, we learned that the formidable expert in this area of oncology treatment is Dr. Sue Cohn, who is based out of the University of Chicago. Through a network of friends and work colleagues (and miracles), we were able get in contact with Dr. Cohn and explain our situation. Without hesitation, she immediately transferred Michael by ambulance to U of C and agreed to take lead on his oncology medical care.

Since arriving at this hospital, Michael has completed 5 rounds of daily chemotherapy (and has responded well) and is recovering from an 8-inch incision in his tiny belly.  We remain faithful that the tumor is contained in his abdomen and has not spread to his bone marrow or bones. We ask that you please pray for this as well.

Depending on the results of all these tests, we hope to take Michael home by Christmas to see all the presents Santa has for him. We will return on January 7 for surgery to place a port in Michael’s chest, followed by another 5 days of in-hospital chemo treatments.

His journey to recovery will be long– complete with dozens of rounds of chemo, a surgery to remove the tumor, immunotherapy, more chemo and, finally, radiation. But we are ready to fight. More important, we are determined to win.

While the past 7 days have been a blur on many levels, one thing has been crystal clear: our little boy (and his older brothers) are surrounded by an amazing extended family of relatives, friends, co-workers, hockey players, and neighbors who are sending love, prayers, hope and well wishes. THANK YOU.

As we look to the weeks ahead, we wish you and your families a wonderful holiday. May you use this time to love more, enjoy those around you and appreciate all the blessing you have been given. 

Until we chat again, please keep us in your prayers.