Yes, it's been a while but all good news :) Jake is done with chemo!! He's been such a good little boy through all the emotional and physical ups and downs. I hope he never has to go through this again; it's just way too much for any child to experience and we are extremely thankful it is over.
Of course he will have routine scans for the next few years and at least one more surgery (to remove his port eventually). In fact, his next scans are scheduled for the end of this month and, as time draws nearer to each scan, I will definitely feel worried that this disease has had a few months to fester and build strength. That's exactly what happened when Jake relapsed this past December. If he relapses for a second time, Dr. Newton recommends a full year of chemo.
Yes, yes. Think positive, I know. So...during Jake's appointment his brother decided to play the new family favorite game of UNO. We LOVE this game! It's easy enough for the boys to play and fun enough to not lose interest. Once he was done with the chemo and we had a prescription refill in hand, we headed down the road to the Hard Rock Casino to celebrate with some Ben & Jerry's ice cream. Oh, it was soooo special to them both! We wandered around and checked out all the famous musician memorobilia. By the way, Michael Jackson's outfits which had been displayed previous to his death, had been removed in order to protect them and to prevent swarms of people coming to pay respects.
In general, both boys are great and enjoying the summer. They LOVE water and swimming! Often times they will spend about 4 hours a day (on and off) at the pool or playing in sprinklers. Austin lost a tooth last month and I discovered another loose one today. School starts back on August 6th and he will be in first grade! Jake is working on deciding what he wants to do for his wish from Make-A-Wish; although, I'm not quite sure he understands the significance of this. He still says he wants a Transformer toy or something silly which I can buy him at Walmart. It may take a little more coaching but it is totally up to him. If all he wants is the Bumblebee costume and helmet, then so be it.
I hope you all are having a fun and safe 4th of July today! We did lots of sparklers and snakes...we like the classics. The boys would die if they knew this but when I was their age my sister and I caught a mattress on fire when we lit up the snakes! It was out in a second though. We were fearless!
Love you!
From www.histio.org: "Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. The disease can range from limited involvement that spontaneously regresses to progressive multiorgan involvement that can be chronic and debilitating. In some cases, the disease can be life-threatening.The vast majority of peoplediagnosed with histiocytosis are children under the age of 10, but it is also found in adults of all ages.
It is approximated that histiocytosis affects 1 in 200,000 children born each year in the United States. This illness is so rare, there is little research into its cause and treatment, and it is often referred to as an "orphan disease," meaning it strikes too few people to generate government - supported research."
If you would like to donate to help research Jake's disease, please click on this link: http://www.histio.org. And spread the word about it! The more people you share Jake's story with, the better chance we have of really knowing the why's and how's of Histiocytosis.
