For many months, a thought has been rolling around in my mind. Sometimes it would push itself to the forefront of my thoughts, and sometimes it would just hover in the background... I really love the care we have been given here at MCG. I love the nurses and the clinic staff. It is an amazing place. However, there are only 2 LCH children treated here (which I'm very, VERY glad that there aren't more), and the thought kept coming to mind that perhaps we needed to seek out the advice of an expert, someone who is very familiar with the ins and outs of the tricky, nasty disease that is LCH. I did research (okay, so I obsessed!) and one group kept coming up over and over and over again. Dr. McClain an Dr. Allen over at Texas Children's Hospital.
A few weeks back, the urge grew stronger, and I made some inquiries. The folks over at Texas Children's were very, VERY supportive. Since the girls are going to be hanging out with their Grandparents, June seemed like a very opportune time to try and make the trip. So, I made more inquiries and everything began to fall into place. When I called to make the appointment, I was told that Dr. Allen (who will be the Dr. who sees Benjamin) only sees patients on Mondays. That was a huge bummer because Ken doesn't have a Monday off in the forseeable future. I talked a little with the amazing Sandra down at TCH and she said she'd talk to Dr. Allen and see if maybe we could schedule an appointment for one of Ken's days off. I was completely blown away when Sandra called me back an hour later and told me that Dr. Allen had agreed to come in and see us ON HIS DAY OFF. Wow!! I'm telling you, this group of doctors is amazing!!
Sooo, several other arrangements still need to be made. I'm in contact with the Ronald McDonald house to see if we can stay there for our short little visit, and I still need to get plane tickets, pack and all the other little details for a trip like this. However, I am excited beyond belief that we are going to be able to meet with one of the foremost LCH researchers in the US and talk over Benjamin's current progress and options for the future should a recurrence present itself. Yeeeeeehaaaaawww!!
I was talking to my Mom the other day, and somehow the discussion rolled around to charitable causes. Now I don't have a lot of spare money just rolling around now a days, but like all Americans, I have the freedom to choose where I spend some of my "discretionary income". When I do have an extra $1 or $5 to contribute, here are some of the charities that I contribute to....
- The Histio Heroes Research Fund. Yep, I'm selfish. I admit it. But hear me out... Unlike a lot of other childhood cancers (yeah, yeah....histiocytosis isn't exactly a cancer...but it smells, looks and quacks like it, so cut me so slack (wink)) there is basically no government spending allotted to research for LCH or any of the forms of Histiocytosis. Yep, you heard me....NO research money. No money=no research=no new treatments...which is a bad thing. Thankfully there is now a fund set up to help fund the research that Drs. McClain and Allen are performing over at Texas Childrens Hospital. If you're interested in contributing, please click on the link above which will take you to the Texas Children's donation page. Please make sure to specify under 'Comments' that the donation is for The Histio Heroes Research Fund!!
- The Children's Miracle Network. Staying in the hospital can suck (Ok...ok, it doesn't suck for Benjamin because he LOVES the nurses on the 5th floor and would love to visit the CMC regularly if he had his choice, but I digress...). It's hard being away from home and your room and toys and family. That's where the Children's Miracle Network come in. They are the folks who help make sure that there are toys and DVD players and DVDs available to help ease the pain of being stuck in the hospital. They do a lot of other things to help make inpatient stays more bearable from chronically ill kiddos, but you probably don't want to be spending the rest of your day reading this blog post! If you would like to donate to the Children's Miracle Network here in Augusta where Benjamin goes, just follow the link above and make sure that you click "Direct my Donation To...My Local Hospital: Medical College of Georgia Children's Medical Center".
- Make a Wish. You know what sucks more than being in the hospital?? Having any life threatening disease! I could write novels about the havoc it causes not only for the child with the disease, but also for the whole family! (But again, I'm not sure you want to spend that much time reading here, so I'll make it brief) That's where Make A Wish comes in. Just for one moment the child and his family gets to shirk off the pain and frustration and become STARS! It doesn't get anymore worthwhile than that!
- Give Kids the World. Children that make the Wish to go to Disney World get to double dip. Not only do they get and all expenses paid trip to "The Happiest Place on Earth", but then they get to stay at about the coolest accommodations on the planet!!! We haven't been there ourselves personally (though I'm crossing all my fingers hoping that's what Benjamin's wish is once he gets to make it!!), but from what I've read from other friends stays, it is a simple amazing place. I mean...seriously...would you even want to leave if you were staying in a building that looked like a life size version of Candy Land, has it's own playground and putt putt course, and where you were encouraged to eat ice-cream WHENEVER YOU WANT?!!
We recently got the results back from Benjamin's most recent MRI and Bone Scan. The MRI results are AMAZING! All, I mean ALL of the lesions are gone, and the Bone Scan confirms that there is no active LCH in the area!! The MRI even showed a small section of healing bone.
However, I was slightly caught off guard by the news in the Bone Scan that there is still a small amount of activity in Benjamin's spine (L4). We knew about this activity from the previous scans, but I guess in my mind I had assumed that the activity was due to healing bone and not LCH. Now I know that not to be true, and it's a little frightening and disappointing to know that at 9 months of treatment there is still active LCH in his spine. There are many things that I "know" intellectually.... I know that the treatment is working and that this is the last place those stupid little cells are hanging out. I know that sometimes LCH takes a little longer to remove from the spine. I know that eventually Benjamin will be LCH free. Still, all this knowledge doesn't take away the frustration and fear that Ken and I have been feeling this week. Frustration at the stupid disease lingering around when we thought we had eradicated it. Fear that in August it still won't be gone and we will have to extend his treatment plan longer than we thought. Don't get me wrong, we are totally celebrating the fact that all those nasty little rogue cells are gone out of his skull!!! So please, pray for the Clan and celebrate with us!
So much has happened over the last few weeks, and I am busy scrambling to catch up... but first thing's first...
Relay for Life
A couple of weeks ago, the Clan participated in the Relay for Life here in town. What an amazing experience! I can remember participating in the Relay several years ago when I worked for Monsanto. I remember being taken back by all the planning and care that went into the event. Everyone was so caring and dedicated. One lap at a time they were determined to work towards a cure for cancer. I remember being impressed back then.
This year was very different. It's hard to put into words what it means to participate in the Relay in such a different capacity this year. This was our first year in the Survivor's Lap. In every Relay for Life, the very heart of the event is the very first lap, which is reserved for those that are battling or have battled cancer. It's hard to describe the range of emotions that raced through my mind as we traveled around around that track in our golf cart. The pain of those first days of diagnosis when the path ahead of us seemed impossible and unbearable. The trials of all the inpatient stays that scattered the family and brought more tears. The friendships iron clad and amazing in strength in power. Friendships that were brought about by this ugly beast called cancer, but endure beyond it. The strength that no one really wants...the strength that comes from passing through the storm. All those emotions and more passed through my mind as we were driven around that track in our golf cart.
As for Benjamin, I'm pretty sure his mind focused in one direction that went something along these lines.... "Dude...all these people are clapping for *ME*!!!!" It was funny to see the little guy smile and wave to everyone as he passed by, even passing out his new word "Hiiii". :) And hey, who could blame him...after all, if just for a few minutes, he really was the star of the show!
This letter is actually a repost from last September, shortly after Benjamin was diagnosed. To me it reflects the love and concern that a Chemo Mom has for their child. This post goes out to all my fellow Histio and Cancer Moms, whose struggle is epic and hearts are stronger than most.
Dear Benjamin,
My dear, sweet, wonderful little man! I am so sorry that you had to be saddled with such a tremendous burden so early in your little life! In so many ways, it is cosmically unfair that you have to be tested and poked and prodded in a time in your life when you should be running and exploring and learning all about the world you live in. Believe me when I say that if I knew of any other way to make you healthy I would do it in a heartbeat! If I could, I would take this burden from you, but I can't. And so I have to watch as people cause you pain in order to save your life. I know you don't understand what is going on. I'm sorry sweet little man!
Oh Benjamin, you are so spectacular! Time after time I have had endless nurses and chemo Moms tell me how amazed they are at the way you react to your treatments. You are such a trooper! You hardley ever cry, and you always bounce back so quickly! You are such a sweet little boy that I know it is hard for the nurses to give you your treatments. The only thing that makes it easier for us is knowing that we are doing the best we can to help you live a long, healthy life. Just remember that when things get hard for you, it's ok to cry! Mommy is always ready to grab you up in my arms and cuddle and love you! Day or night, I am here for you.
My son, I have absolutely no doubt that God has something amazing in mind for you! I don't exactly understand all of His plans right now or why this is happening. But I know that He is good and that He loves you very much! Have faith in Him and you will be blessed!
It is my prayer that you will be completely healed while you are still young and that you will not remember any of this. If not, I would hope that you remember all the love that was poured out on you by your family, your church, and even total strangers!
With All of My Heart,
Mom
It has been a rough week for me personally. I’m not going to go into any details…it is a lot of little things that have been whittling down my resistance, slowly but surely. I have taken a few steps to try and take away some of the pressure on me. Hopefully they will work. :)
Anyway, as a Mom I don’t get a huge amount of “Me” time, but one of the few things I do enjoy is the ABC Television series “V”. (Interested?? You can check out the latest episode here) The basic plot of the show is that a group of alien Visitors (or V’s) land on the planet proclaiming that “We are of peace…always” and then go about systematically solving all of the worlds problems with their vastly superior technology. Obviously, there is a catch. Unknown to the general population, the Visitors are actually cannibalistic lizards (of course, they disguise themselves as humanoids) that are bent on world domination. (Like you didn’t see *that* coming. ;) Anyway, one of the V’s “gifts” to Earth is Visitor Healing Centers where people can be treated (free of charge of course) and cured of basically any life threatening problem. And that got me to thinking….
You know what? Right about now, if this wasn’t science fiction, I would openly welcome one of these Healing Centers. Honestly, I would even be ok with aliens eating a couple of people here or there if they would just wave their magically lights on my son and all the other Histio and Cancer Children and make it all go away. Matter of fact, I’ll bet I could come up with a list of several candidates for the Visitors menu faster than you can say “Would you like fries with that.” And I wouldn’t even break a sweat doing it.
Sigh…
There’s a reason it’s called Science Fiction. Real life is difficult. It is hard waiting on God. It’s hard when it feels like He isn’t there. It’s excruciating when you don’t understand His decisions and people you love are suffering and in pain. And while it is tempting to search for a quick fix, I have heard that there are lessons you can learn from trails. That is my prayer right now…that God will show use this time to mold me into a stronger woman. Because if He doesn’t I’m gonna issue out an intergalactic summons. First come, first serve. (Kidding!!)
Okay, apparently I live in a cave because I haven't seen this commercial before today. Thanks Dana for opening my eyes to this brilliant advertising gem! This made me laugh so hard!
Alright, alright, so it's a corny title. Still, it IS exciting. We have now made it two whole months without an inpatient stay! It's sooooo nice that Benjamin's been healthy! I'm really hoping that the chemo is doing its thing and that maybe, just maybe we'll get out of this thing without the LCH coming back or Benjamin developing Diabetes Insipidus. That is my prayer. I know that we'll be fine if the LCH comes back, but if it was our choice we'd vote for the holes in his skull to close up and for him to go about living a "normal" life. :)
I was pretty disappointed yesterday when I found out that we were not going to be able to get a slot at Jason's House over the summer (Jason's house is a program that provides a beach stay for families of children with cancer). I was dismayed when I found out that our hospital gets 4 slots for this great program. We have roughly 20 families going through treatment and we get 4 slots. I wish there was a way to get more funding for the families of our clinic. I'm telling you, these families are AMAZING, and you wouldn't believe the kind of crap they go through to keep their kids well. They deserve a break from the crap of life with cancer. It's funny what you take for granted when you don't know any better...like family vacations. I would write more on this topic, but I'm afraid it would sound a lot like whining, so I think for now I will close.
