I know I have gone an entire SUMMER without blogging. I wish it was because I had so many profound thoughts that I couldn’t even put one on print, but that was not the case. Or it could have been, that there just was no time to sit and write with all the exciting adventures we had going on. While we were very busy this summer, that was not the case. So my goal was to sit down the first blog back and write about our wonderful summer and how much my kids had grown…yadayadayada! But that is not the case today.
I guess in all stories it is important to start from the beginning, or well the beginning of this specific story. The reason for me blogging today. Last summer we were anxiously awaiting the arrival of our BEST FRIENDS, The Foust family. For any of you who know me personally you know how this family is like our family! 24 hours and counting I received a phone call informing me that they were one the way to the ER with their youngest Jaxon. At the time he was just months old. That call was the beginning of MANY more to come. Their trip to the ER ended up being a flight in a helicopter to the Children’s Hospital in Atlanta with many questions to come. After different diagnostic possibilities dwindled down and a week long stay in the Hospital (also consisting of NO family vacation for the Fousts) they narrowed it down to Langerhan’s Cell Histiocytosis (LCH). Histio…What? I had never heard of it. Apparently not many people have heard of it!
LCH is a disease that can be cured but in some cases can be fatal. It requires chemotherapy and other various medications. LCH is a disease where the body has too many histiocytes and they cluster together and form lesions or tumors in various parts of the body. For Jax it was in his bone marrow, liver, gall bladder, skin, and lymphnodes in his abdomen. In Jaxon’s case we had noticed the disease setting in through a rash, but like any normal parent, Kristen started topical treatments for it, thinking it was nothing. Especially not a disease like LCH. We were all shocked and confused. I was mostly upset that I could not be closer to, well, just be there. So Jaxon began rounds of chemo and steroids to fight this terrible disease. He had to have a port in to help with the chemo and other medicines. Thus the life in the Foust house changed.
As a mom I remember the nights I was up worried because of an ear infection or breathing difficulties with my little ones. Kristen has to deal with so much more than that for her son. She has to watch Jax closely. If he runs a fever he has to go to the ER immediately. Two weeks ago, that meant going 3 times in ONE WEEK. Not only is it stressful transporting him to the ER, almost no one has heard of this disease. They show up at the ER with a print out of what there son has just so that they can receive proper treatment. This can get very frustrating.
This entire past year I have watched Jax’s entire family adapt to his illness. I have see the strength through many many visits to the doctor. I have witnessed the irritability that comes over Jax when he has bad days, and yet nothing keeps this family down. This little fighter continues to boldy take on this disease and through the love of his family he overcomes obstacle after obstacle.
Not long ago it was thought that Jax would be getting a break from chemo. His tests had been looking better and there seemed to be a silver lining beaming through. Then they noticed his rash appear in new spots and his routine testing was moved up to check in on this little man….enter present time, the reason you are not hearing about me, but the reason you are being told of Jaxon.
I got a call from Kristen. I could tell the tone in her voice was weak and she started sobbing. For the first time since Jax’s diagnosis I heard her break down. She questioned her strength as she told me the news that two new lesions were found in Jaxon’s little body. One at the base of his neck and one in his eye bone. Devastating. That silver lining has turned very black. There are so many questions and now possible new forms of treatment as they look for possibly 3 to 4 more years of fighting this disease. The problem is, there are not a lot of answers. There is not a lot of information or funding for this disease. So I ask myself, if this were MY kid what would I want people to do?
I would want people to help me help them :). And we can. On October 8 Kristen will be putting on a fundraiser to raise money for research. Histiocytosis is considered an “orphan” disease and therefore there is no government funding for research. You can help by donating any of the following materials, monetarily, OR both ;). Here are the ways you can donate. Kristen needs the following items which can be shipped directly to her:
– Embroidery thread (She really needs this) for hair wraps..all colors
– Hair paint (the spray on kind)
– Face paint and stencils
Money for items such as popcorn for popper and cotton candy supplies.
If you are in GA on October 8, near Paulding Meadows your family can attend this fund raiser for only 25.00 per family. IF you cannot make it, how cool would it be to send 25.00 in lieu of your family. In this time money is tight. Believe me I know! Remember how you would feel if this was your kid, and you needed help. Wouldn’t a sacrifice be such a sweet gift?
You can send any of these items or your family donation to:
415 Hiram Way
Hiram, GA 30141
Make Checks payable to The Histiocytosis Association of America.
or for more information email Kristen at email@example.com.
So this blog isn’t what I planned to start my amazing comeback 🙂 but it is far more important.