Welcome to our CaringBridge website. We've created it to keep friends and family updated about Mason and Miles. Get started by reading the introduction to our website, My Story.
Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.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. On March 29th, 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!
Tricks and Treats
Nov 14, 2013 10:08amThis is my lame attempt at trying to catch up on my journaling...I'm getting so far behind but don't want to stop doing it. I want to keep chronicling our journey since we still have a ways to go, plus, I am still considering writing a book one day (in all my spare time--ha!)
We had a great Halloween this year with the boys; this was the first year Mason really understood what trick-or-treating was and to my surprise, Miles LOVED it. A lot of kids on the autism spectrum have a hard time with it, get anxious, scared, etc. but Miles did great. I was a little skeptical at first, given I had bought their firemen costumes a few weeks before and both boys refused to wear them (only the firehats, for a few minutes at a time). I wanted to make sure they had time to get used to them and hopefully, by Halloween night, like them enough to keep them on. To my amazement, both boys kept on their costumes and loved all the excitement of trick-or-treating at night with their friends. They still can't eat the candy but that's okay. I just wanted them to have fun.
Soon after, we had another trip to Houston; Miles needed to check in one more time with the liver team before the end of the year. We were able to stop his Urdisol (which helps lower risk of liver rejection) and we also discontinued his Magnesium. The Prograf anti-rejection med he needs for the rest of his life can affect your body's magnesium levels, so we had to supplement. This drug has also been causing Miles to have diarrhea issues for the last several months (or so we thought). Turns out, his diarrhea issues could be due to both a combination of the mag and something called enteritis. The liver doctor's theory is the chemotherapy has inflamed the lining of the small intestine and Miles's body isn't able to absorb what it needs to as quickly as it needs to. We are doing multiple stool sample tests to see if we can pinpoint the cause and then hopefully, we'll have a treatment plan. It would be really nice for Miles (and all his caretakers) if he was able to have regular bowel movements! He has had diarrhea pretty much on average twice a day, every day, since before his transplant. As I write this today, he's been off the mag for a week and a half and although it's getting a little better, the diarrhea isn't completely gone, which makes the liver doc's theory about enteritis much more plausible.
Since we are talking bathroom talk, I'm ecstatic to report Mason is FINALLY potty-trained! He couldn't have planned it better. We've been working on it for months now and he just hasn't been ready. The night of our 10th wedding anniversary, I dropped the kids off for a sleepover at Miss Janna's. I was still in the car driving home when I receive a call that he's went to the bathroom with no problem! Just walked right up to Janna and said he had to use the potty. Janna, Luther, and her kids were all clapping and cheering him on and explaining how all big kids wear underwear, not diapers. He was so excited I guess, clapping and saying, "I get cartoons back! Mommy is going to be so proud of me!" (In a last ditch effort, I took away cartoons permanently until he went "pee pee on the potty". He didn't have cartoons for about a week). He loves his cartoons and I was hoping and praying if anything motivated him to finally use the potty, that would. I guess being in someone else's house with older kids already potty trained can actually do the trick too! There was so much excitement going on in the house, Miles wanted to partake and sit on the potty to get attention too. :)
I cannot even tell you how many "tricks" we have tried to get Mason to use the potty. I have tried everything anyone has recommended and so many different strategies in parent/toddler books. I am so relieved something finally worked--I knew he could do it, and easily...it was just a matter of him wanting to and being motivated enough to do it. It has been a few days now. He's had a few accidents but he's getting better everyday in letting us know when he needs to use the bathroom. Another milestone reached. This momma is so incredibly proud.
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