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Miles’s Story

Miles and Mason were born at 25 weeks, 5 days gestation on January 20, 2010. Mason weighed 1 pound, 10 oz and was 13 1/2 inches long and Miles was 1 pound, 9 oz and 12 1/2 inches. Being preemies, both boys faced a lot of challenges early on, mainly diagnosed with chronic lung disease. At two weeks of age, both boys had a PDA ligation, and later we found out they had severed Mason's left vocal cord during the surgery. Mason spent a total of 4 months in the NICU, being weaned off the ventilator, before coming home on oxygen. Miles ended up spending 3 more months in the NICU and 2 months at Our Children's House before finally coming home after being trached and still needing a ventilator 24/7.

Mason has always been tiny even for his adjusted age, and is typically in the 5th percentile. He currently only weighs in at 16 pounds and is now 14 months old (March 2011). On March 29th, (2011) we went for a routine check up with his GI Specialist, who felt his liver under his rib cage.  The next day, we went in for an ultrasound, which confirmed there was a mass in his liver. Over the next few days, we ran various tests including blood tests, an MRI, a CAT scan and a biopsy. On April 6th, we received the official diagnosis of hepatoblastoma, or liver cancer. Mason will have 6 rounds of chemotherapy and surgery to resect the tumor. His first round started the day after diagnosis on April 7th.

We will be forever grateful to Mason's GI Specialist. Had he not questioned his findings during such a routine exam, we would not have discovered this cancer until it was way too late. We've been told hepatoblastoma is pretty rare but has a pretty good success rate when treated with chemo and surgery.  I wanted to start this blog to keep everyone up to date on Mason's progress. Please feel free to check in frequently for updates and keep us in your thoughts!  

Update: Miles went in on March 5th, 2013 for an X-ray, ultrasound, and CT scan to confirm what we thought was sever constipation issues. What we discovered was a large mass on his liver. By Friday, March 8th, 2013, we received an official diagnosis that we are also dealing with hepatoblastoma. The mass is covering over 80% of his liver.  He started the same chemo regimen as Mason did almost 2 years ago. 


Latest Journal Update

Reach for the Stars

Last Friday, we experienced our first outdoor movie with the boys (Despicable Me 2). It was at a local park close by and we were able to pack a picnic, bring lawn chairs, etc.

The boys had a great time. Both boys wanted to jump in on the action and play with some older kids before the movie started at dusk. They were running around, laughing, chasing bubbles...we could barely keep up--such a "normal" toddler thing to do! I realized I am definitely shaping up to be one of those "helicopter moms" that follows her kids'  every move. Mostly though for good reason: both boys are constantly getting themselves in situations that are above their current gross motor skill area of expertise and neither possesses what I consider to be a healthy dose of fear that they may fall or get hurt. Miles may be slightly more timid but he's getting braver by the day...and, he doesn't have the greatest balance or core muscles to always get his body to do what he wants to do. 

Sitting watching an entire movie (even their favorite) can be a challenge at times as well but overall, they did great. My favorite part of the night was this little exchange:

Mason (sitting on my lap): Mommy, I can't reach them (as he reaches both hands up to the sky). 
Me: Honey, what are you talking about?
Mason:  The stars...I'm too little to reach them yet. 
Me: Sweetie, we are all too little to reach them. 
Mason: Yeah. We are. 

And yet, reaching for the stars is what I seem to be doing a lot of lately. 

I have always held on to hope that Miles and Mason will beat the odds dealt to them due to their medical predispositions. And they have, over and over again. There were many days we didn't know if they would survive the next hour or day, let alone continue to thrive and flourish.

But they have.

With every step of progress and with each milestone hit, I continue to hope....and believe....and stretch my arms out to the limitless sky...knowing there are no limits to what these two boys can do and what they are capable of. 

Miles' had his six month developmental check up yesterday. Overall the session went well. I always walk away learning a thing or two and thinking about different options we haven't explored yet. Miles cooperated for a bit but then he lost interest in answering questions which made it difficult to finish the assessment. The doctor observed enough however to know he's still showing signs of being on the autism spectrum (mainly toe walking and looking at objects using his peripheral vision) so even though we didn't get to the autism screener, he's still keeping the same diagnosis, PDD-NOS. 

The promising and hopeful part of the session was the doctor basically saying time will tell if Miles is truly on the spectrum or not. While he is currently still showing some "typical signs" of autism, she believes what we'll see as he continues to grow and improve health-wise, is that a lot of those red flags will go away. And some already have. He has better eye contact, is more social, has stopped incessantly spinning objects (although he'll sneak it in if you let him). His medical history is so complicated it's hard to tell at this stage what is truly going on. Is he autistic or just globally developmentally behind because he has been so sick and hasn't had the same opportunities as healthier children his age? 

Really what he needs at this point is more opportunity to be around kids and play. This summer we'll really be focusing on his social communication deficits (once the trach is out of course). We'll also be looking into hippotherapy (riding horses/ponies) to help his motor and sensory input too. I'm sort of excited to look into it; I've heard great things. 

May you always reach for the stars,