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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

From Cancer Mom to Baseball Mom

It's been about a year or more since I've written in this journal which is a complete shame. So many positive, happy memories and moments have happened to our family. Time passes these days way too quickly and I find it hard enough to keep up with 2 five year olds on a day-to-day basis. 

The boys have been doing great. We celebrated their five year old birthdays (can you believe it, FIVE!) this past January and had so many friends come visit. March marked Mason being 3 years cancer free and 2 years since Miles's cancer diagnosis.  April brought us many other reasons to celebrate: we walked our annual March for Babies walk, went to our NICU reunion, and celebrated Miles's TWO YEAR post transplant surgery.  

May decided to bring us an unexpected hospitalization over this past weekend for Miles, his first since his trach was removed last June. We were admitted to our regular oncology wing floor. We were admitted around 10:30pm, with Miles spiking a 102 fever. Due to his immunosuppression, anytime he has a fever over 100.5, we really need to be bringing him in. Once we arrived, we saw several nurses we knew and although that puts me at ease, it certainly doesn't matter to Miles.  For him, the hospital is the hospital and although he received superstar treatment, it makes no difference to him. Meltdowns and chaos ensued as we tried to access his port, draw bloodwork, and get him settled in for the night. I wish I could figure out how to best console him when we need to access his port -- all his favorite reinforcers : music, iPad, toys, etc. don't do the trick when he gets past his tolerance threshold. By around 12:30AM, he was all settled in for the night and had a decent night sleep, considering the circumstances.

His fever quickly disappeared once he received Tylenol and a dose of IV fluids and antibiotics. The only eventful moment yesterday was he de-assessed his own port so the nurses had to redo it, which of course, triggered another meltdown of epic proportions. One of the nurses we have known now for four years (can you believe we've been in and out of this hospital for FOUR years now between both boys?) asked how they were doing, and when I mentioned they were both in T-ball, she said, "Better to be a baseball mom then a cancer mom!"  I couldn't agree more. I'll take the Baseball Mom title a million gazillion times over. She also said this:  I will never forget the day Miles was diagnosed -- none of us will. Telling a family their child has cancer is always difficult.  But telling you? Again?  That was the hardest. 

It is always surreal to me to be in this particular wing of the hospital.  Seeing friendly faces that helped you through the worst of times. I truly have a love/hate relationship with this place. It's always good to be here when you need to be and at the same time, seeing what you see while you are here, for the time you are here, you can't wait to be discharged and go home.  Home -- back to where you are safe, your kids are safe, and your biggest worry of the day is making sure you get to the baseball game on time. 

xoxox, 
me 




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Comments

2 Comments

Wendy Sibley
By Wendy Sibley
So glad to hear that Miles is doing better! So happy that Anne and Charlie could be there to help out with Mason!
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patty harper williams
By patty harper williams
Happy you are a baseball mom x2. Glad they are both doing so well
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