Jacob's Wish

Please take a moment to read a great post from Reis Baron about his son Jacob (LCH warrior) and their family's experience with histiocytosis.

Jacob's been doing so well!! He's even had a cough (his first that we can remember) this week and it hasn't slowed him down a bit. We still kept him home from school today to make sure it didn't escalate or challenge his breathing. One thing about living with LCH is that the normal school-kid illnesses put you on hyper-alert, and it's hard to know if a cold might lead to a fever, which might lead to who knows what. So admittedly amidst the honeymoon phase we're still stressed when confronted with some of the more common toddler issues. You learn to live with it and move on with a watchful eye.

Last we left this saga we were looking forward to good bloodwork, which thankfully we got on the 12th. So Jacob had his final shot of Vinblastine, and completed his final round of Prednisone. Tomorrow is his last day of Pepcid, and best of all we've tried the 6MP (oral chemo) with some Grenadine by mouth and he loved it. This is HUGE, as it means (for now anyways) we will have no problems with the oral meds once the G tube is out. We were so worried that he wouldn't like it. Imagine having to give your child something by mouth every day for a year and they don't like it? OUCH...glad we don't have that problem...yet, anyway ;-).

The 12th was quite a day. Along with the good bloodwork in the morning, Jacob got a visit that evening from our new friends at the Make A Wish Foundation. Jacob's lead oncologist recommended him for the program, and with the help of the social work staff at Tomorrow's Children Jacob was officially asked to make his wish. We were honestly surprised, as we originally thought that Make A Wish was specifically for kids with terminal conditions. But we learned that the program more broadly covers children with life-threatening illnesses, regardless of the current state of their prognosis/recovery. It's been very humbling getting acquainted with the organization, and we're truly blessed to have them in our lives.

They came in with a cool Thomas the Tank Engine bag with a few new trains for Jacob's collection, and we discussed the gift that we felt would be ideal for him. Obviously at his age it's a bit early to take full advantage of anything from a Disney trip to meeting a celebrity. But with physical development being a major concern right now, we felt that something geared toward helping him strengthen on a daily basis would be ideal. Little did we know when they say "dream big" they really, really mean it. So we've officially gotten word that in the early spring of 2010 Make A Wish will be installing an above-ground swimming pool for Jacob in our back yard. WOW!!!! We really still cannot believe it. What an amazing gift...it is truly humbling to say the absolute least.

Needless to say 2009 has been a turnaround year for us. Quite amazing how every day has been a step further away from those days in the PICU when Jacob was indefinitely unconscious. And it's so unfortunate that in the amazing community of people we have met throughout this experience, we are confronted with sobering stories of kids who are facing huge challenges with Histiocytosis and similar rare conditions. It's so tough to hear about some of these kids who lose their battle with the disease. It's just so cosmically wrong, and just so brutally sad. We've been lucky to encounter some amazing people along the way, and we want to acknowledge them, as we've learned so much, and because of their hard work we realize how much we can do to raise awareness of these rare diseases. Here are a few children whose stories you should absolutely check out:

Ivy Kate's Story - We stumbled across Ivy's story, and we were intrigued that her course of treatment was remarkably similar to Jacob's. We reached out to her amazing family when we were in the PICU, and they gave us some invaluable perspective and encouragement. Ivy is doing well these days after battling LCH (among many other things) since she was 3 months old (2004).

Sydney's Story - While Sydney was sadly only with us a very short time, her story is amazing and her family's efforts to spread the word about Histio conditions is truly incredible. Sydney's blog is an amazing resource of information on countless Histio cases, as well as fund-raising events and information. Many thanks to Michael Golding, Sydney's Dad, for his tireless efforts to spread the word.

Henry Goldberg - While settling in at the hospital, for what would be a several-month stay, we were greeted by one of the Tomorrow's Children social workers holding a messenger bag. On it were the words "Hope for Henry". He presented us with the bag, which we opened to find a portable DVD player for Jacob. Such a generous gift, and we were stunned to find out that Henry was a boy who lost his battle with a rare form of anemia in 2002. The Hope for Henry organization, started by Henry's family, has given out hundreds of high-end electronic items to children facing life-threatening illnesses. We were overwhelmed by their generosity in our time of need.

These stories, among the many we've read at Caring Bridge, are constant reminders that we have so much work to do in spreading the word about LCH and other rare illnesses. Once you face this disease it becomes part of your life mission to get the word out, and help in any way you can. All of the above people have taken that concept to the next level, and we look forward to doing our part so our efforts can hopefully bring some comfort to families who will unfortunately face this disease in the years to come. They say every journey begins with a small step. We're so thankful that we're fortunate enough to see the path ahead of us now. Here's to stepping cautiously...

Many thanks to you all...Much Love...

You can read more about Jacob on his blog -- The Jacob Skye Baron Blog.