Good evening!

Winter is here and the Holidays have arrived. Every morning Nathan runs downstairs to see where his elf, Sydney Crosby, has landed.  He then loves to FaceTime his family to see where their elves have landed.  It is the highlight of his day.  This year has been especially exciting because our newest family member, Meredith, has been sharing her Hanukkah traditions with us every day.  It has been such a wonderful addition to this already magical time of year.

The last update I sent was in August.  At that time, Nathan’s neurological symptoms were regressing and he had to start back on an every two week chemotherapy regimen.  Since then, Nathan has received 9 rounds of chemo and he has again stabilized.  Neurologically, he is doing very well and the MRI last week showed exactly what we are seeing.  The tumor is the same size as it was at the end of September.  There actually has not been any major changes in tumor size since the fall of last year, but Nathan’s symptoms often change before we will see anything on a scan which guides the need for treatment.  

One of the biggest accomplishments over the past few weeks has been that Nathan is starting to trial small amounts of regular water.  Due to his compromised swallow and paralyzed left vocal cord, all of Nathan’s liquids are thickened and we use his feeding tube for 90% of his hydration.  This is the first time Nathan has ever been able to drink thin liquids without immediate signs of aspiration.  He has also made great strides with his physical and occupational therapies. He is starting to do things independently and is using the left side of his body at a more age appropriate level.  His voice has also gotten significantly stronger.  He is able to find high and low sounds for the first time and keep up with all of my crazy songs that I sing all day long.  He is in a good place right now and we could not be happier.  The biggest challenge is finding a way to keep him in this positive place with the least amount of toxicity.   

At this point, we will start to space his chemotherapy treatments to once a month and hope that his symptoms remain stable.  After we stopped this chemotherapy in April, he started to regress within 6 weeks. Unfortunately, we are starting to see some side effects from the chemo that we hope do not effect his ability to remain on this treatment. He has developed neuropathy/joint stiffness in his ankles and feet, a limp, and high blood pressure.  It breaks our hearts to see our little four year old get out of bed every morning and struggle to walk for the first hour of the day. Although these complications add to the complexity of his care, we do appreciate the bigger picture of stable scans and overall neurological health. We 100% believe that Nathan’s neuro oncologist in Boston puts the preservation of Nathan’s body and development before any other decision.  He looks at the comprehensive picture and does not ignore even the smallest of details. 

One of the biggest challenges of managing a child with a brain tumor is that it truly effects Nathan’s entire body.  During our several appointments in Boston yesterday we addressed concerns over facial nerve stimulation, vocal cord function, swallow function, inter cranial pressure, pathway inhibitors and their effects on genetic mutations for Nathan’s tumor type, neuropathy, blood pressure, the list goes on and on.  We often leave appoints extremely overwhelmed because so much of the terminology is new to us.  We are an accountant and a musician and now we are expected to make life changing decisions on very complicated medical issues.  We have to accept that so much of this is out of our control.  There are not always answers to important questions.  We have to be patient, not panic, and always educate ourselves to the best of our ability to make sure Nathan is safe during these fluctuating times. Our own insecurities and worries must always take a back seat so we can see through a focused lens and help Nathan.  My final prayer every night is asking God to help Mike and I make the right decisions for his medical care because it the biggest responsibility we will ever have. Recently I have had more moments of wishing our days of hospitals, therapies, and medical management were less.  I only let my mind go there for a minute and quickly realize that God trusted us to do this job and we will do whatever it takes to make sure Nathan gets what he needs. 

Last year, Nathan was nominated to be a Make-A-Wish child.  We have been working with this wonderful organization throughout the past year to help Nathan fulfill his wish.  We all know the name Make-A-Wish, but through this process we have learned what this absolutely incredible group of people do for kids like Nathan and we could not be more impressed. On November 27th, he received his wish to have a truck play set.  He still loves his trucks more than anything in the world and wanted a truck stop where he could serve them food and the truckers could get out and play.  Well, they fulfilled his wish far beyond our wildest dreams.  I think one of the best parts for Nathan was watching the set be built in the yard.  He did not leave their side as they bolted on each piece. This amazing weather has allowed Nathan and Samuel to enjoy the play set every day.  It brings us such joy to see him being a kid, climbing, jumping, and swinging just like he should be.  We are so appreciative to Make-A-Wish and the smiles they bring to kids like Nathan.

Every time I look out our window and see the play set it reminds me what is achievable when you fully commit to a goal.  Nathan spends 3-4 days a week in therapies to make his body as strong as it can possibly be.  Last week he received his 75th round of chemotherapy and more IV’s than I want to remember. He never once complains or questions what is asked of him.  He does every single thing the doctors tell him to do and therapists ask him to practice. When the countdown happened and the kids all went on the play set when it was finished I did not feel bad that Nathan was a Make-A-Wish child, I felt peace that he was healthy enough to enjoy this incredible gift. 

The Holidays are here and we all have so much to be grateful for this year.  It is always humbling to spend time at Children’s Hospital, or as Nathan calls it, “my hospital.”  There are so many sick children that will spend their Christmas in a hospital bed instead of in their homes.  We are grateful for the perspective we have been given and pray that we never take even one day for granted. 

You have all followed this journey and supported us every step of the way.  Each month brings a new challenge, but your constant encouraging words give us the strength and faith to do our jobs as Nathan’s parents to the best of our ability.

We wish each of you a very blessed Christmas, a happy Hanukkah, and a new year filled with health and love. 

Love,

Mike, Beth, Nathan, and Samuel

Nathan and Samuel on his Wish Day. Samuel is Nathan's best friend and number 1 supporter!

Getting ready for his MRI on December 2nd

Enjoying his favorite s'mores donut from Peace, Love, and Little Donuts while watching his swing set go up.