Far too often I'm afraid, we as a society get tunnel vision and lose track of the bigger picture. While I am so, SOOOOO thankful that our son has beaten back Langerhans Cell Hisitocytosis, there are many others that have had to endure this disease. Too many. I have put a lot of thought into this, and I have decided that since no one in the mass media seems particularly interested in putting information about Hisitiocytosis well I guess I will. So, every month I'm going to ask a Hisitio family to share their story with you.
And so, without further ado, meet Maureen, Jim, Alexis and little Histio warrior Kenny...
Jan 2nd 2009 is a date a lot of people all over the world will remember. It was the day John Travolta and his family loss thier son but it was also the day I sent my sick son to a hospital 4 1/2 hours away to start the fight of his life. Jan 3rd it was suspected that Kenny would be fighting a rare disease called Histiocytosis. Later it was confirmed to be Langerhans Cell Histiocytosis. So rare that at the time there were only 250 confirmed cases. So rare that government funding for research was not possible! Then you hear words that most of us have heard of but never personally experienced so close to home..chemotherapy and worse case..radiation. FOR A ONE YEAR OLD CHILD??? ARE YOU INSANE??? Can my child handle this? Can my family cope with being split down the middle with several hours between us? So many things start running through your head, your heart starts actually feeling pain, your eyes start pouring tears down like a hurricain, your arms start aching and you look at your child....and he starts smiling at you.
Your mind starts a whole different conversation within itself...why my child? why this? what about...? what if...? how...? did I...? what are his chances...?
So you start the testing, the xrays, bone scans, etc..etc..etc..! Start the chemo. At this point, Kenny and his Dad (Jim) spent 6 days away from me and our daughter Alexis. The nights were the longest even though Jim and I talked often. Kenny seemed to sleep a lot and when he did talk..he talked a lot with Alexis. Which was very comforting to her. After seven days..Kenny and Jim make a very surprising trip home...for good! Since he had responded so well to treatment, they let him leave. BUT...with the understanding that he was to return for chemo every Friday for six weeks. Problem one...expensive to travel 4 1/2 hours weekly. Problem solved..a local doctor agreed to give Kenny his chemo treatments every other week. Great! Next problem...since it was such a long trip, we would need overnight accomendations. So I had to swallow my pride and ask for help. Where yet another problem arises. Because of this being considered a "cancer-like disease" most of the charity organizations like to help children/families with CANCER and/or LIFE THREATENING ILLNESSES. So here goes emailing all the information I could to prove my son and family did indeed meet thier qualifications and needed thier help while I am choking on my pride to ask for help.
Children's Miracle Network came through with some help and angels were also helping us in other ways! Kenny handled his chemo and daily meds like a pro. Never got sick from it either! After six weeks, Kenny's chemo was then given in his broviac every three weeks while taking another type of chemo medicine orally every night.
We were very blessed with how Kenny handled his chemo treatments, lengthy waits for ct/bone scans, long periods of no food or drinks for several several hours! All while he was cute, smiling, adorable and handsome! He became a HERO to our part of the world. An inspiration to cancer survivors who were much much older than him in our neck of the woods. Jan 15th 2010, Kenny received his last chemo treatment and June 25th had his broviac removed. HE IS A SURVIVOR. Within this time period, Kenny has also undergone dental surgery twice for removal of teeth that were damaged from the disease and then later from the chemo and medicines associated with chemotheraphy treatments. All the while..Smiling! Laughing! Being cute! And simply irristable!
As far as how the rest of the family has dealt with this...it has been trying. But not on our faith or friendships! They were our priority after Kenny. Strong, believing in miracles and learning to let the guards down to cry and let our friends shoulder our burden if even for a minute.
For me...it has taught me to speak up and speak out! Yeah, I'm sure some people got tired of hearing us talk but let me tell you where TALKING has gotten us. Relief for our own state of mind knowing someone is listening. Bringing awareness of yet another rare disease. Kenny has been on the news, in the newspaper, in Histiocytosis Association of America brochure and Honorary Chairperson for our local Relay For Life organization.
Kenny has also given so much emotional strength to people. Yeah, in his body he is only a baby (2 years old now) but in his heart, he shows the strength of a warrior! Alexis and Kenny's relationship has been so touching too! He knows she has been his rock and therefore, she has become even more protective of him. Jim can finally start bragging about what a real hero is! I can't say much about his emotions because he is very private about it but I know he has grown more appreicative of his job from this because NOW he can say when he has to deal with cancer patients or survivors, he knows how they feel, what they are going through or been through.
I have dealt with some criticism. Because of how well Kenny accepted the treatments, there were times that I had to PROVE he was fighting for his life by showing his broviac off. Most recently, I have heard that some doctors that are doing research for histiocytosis currently see just 400 cases. And that is ONE state in America! Not including all over the world! The first 2 weeks in January 2010, 7 kids lost thier fight to this disease! Breast cancer, autism, colon cancer, skin cancer, hiv/aids, etc. Support them, donate to them, fundraise for them. But don't ever look at my son and his extended family fighting for thier lives, loosing thier lives or beat the odds and tell them you can't help them because no one famous has promoted a disease that hardly anyone has heard of! Our kids mean just as much if not more to us as your kids do. So help spread the word....please.
Yep, I know what you’re thinking...Nellie’s finally cracked! You wondered how long it would take, and now you’ve got proof...haha! However, I assure you that I am not quite over the edge yet...close perhaps, but not quite there. :P
Soooo...you’re wondering about the title, eh? Hehe...ooookay...I’ll explain..
No
Evidence (of)
Recurring
Disease
NERD for short. Yep, that’s right...we are officially LCH free!!! PET and CT scans confirm what we didn’t dare to dream. Our son has faced the monster that is Histiocytosis and kicked its sorry butt to the curb!! We have no idea why the bone scan from May continued to show abnormal uptake...nor do we really care at this point in time! We are now focused on finishing up treatment and then (somehow) learning how to go back to living this “normal” life that we’ve hear so much about. ;) By my calculations, we have approximately 3-4 more chemo treatments to go before we wrap up this year of treatment. And then, it’s tooootally time to PARTY!!
And so, to those who have been following our journey and have been praying for the Clan, I would like to extend to you my biggest THANK YOU!! You were there for us when we were weak, lifting us up in prayer. You were there celebrating with us in our triumphs. And I hope that you will continue to read along with my mad rantings in the future! Thank you so much!! Your kind words and prayers mean more to us than you could possibly ever know! :)
Today was a typical scan day...long, difficult and tiring. I don't know what it is about scan days, but they are so tedious. I think part of what makes them so trying is having to keep food away from Benjamin until he is done with his scans. I understand the importance and safety reasons behind keeping patients NPO ( Latin nil per os or in plain English nothing by mouth...see and you didn't think you were going to learn anything by reading this post!) before anesthesia, but you try explaining to a 2 year old that they can't eat that stuff in the vending machine, even though they are HUNGRY and see how far you get.
Still, it constantly amazes me how amazingly strong children are. By lunch time I was tired and hungry and more than a little crabby. Alternatively, my little dude was joyfully playing on the play place at the hospital and watching Spongebob in the treatment room. He finally crashed out on his Daddy's chest just before his favorite anesthesiologist (kinda sad to know that he has a *favorite* anesthesiologist at the age of 2) came to put him to sleep.
Normally we have our scans done at the local childrens hospital and we part with Benjamin shortly after he is put to sleep. Today's scan was done at an off site facility, so we watched as they carried our little boy down the hallway and put him on the PET scanner. I'm not really sure why, but as I watched them load my little boy onto the machine and hook up all the monitoring equipment to his little body, it brought tears to my eyes. I mean, it's certainly not the first time we've done this, but seeing him lying there was difficult. I'm not sure if it's because it brought back those ugly memories of the initial diagnosis or that it was the knowledge that we're doing this scan to determine whether or not he still has active disease in his spine, but it was...hard this time.
Thankfully the scans didn't take too long to perform (we started out at 8:30 and finally got finished by 2:30) and it wasn't too much later that they brought Benjamin out to us. It did take a little longer than normal to wake Prince Charming from his beauty sleep considering that it was his nap time, but he eventually woke up with the aid of a bottle of Coke and the promise of McDonalds french fries. :) The rest of the day went well and everybody seems back up to par after a couple of good meals. And now we wait for the results to come in...
I'd like to thank everyone that's been praying for us. This has been a difficult part of our journey, and we are anxious to find out where we go from here.
Ahhh...it's been a while since I posted. Just "Normal" life around here. We picked up the girls last week and have been having fun spoiling them! (By the way, Benjamin was STOKED to see his sisters again...even though he had a rough time waiting around at the airport for them to arrive. He kept standing at the gate, watching people get off the plane and going..."GenGen, Autumn..".big frown "No GenGen, Autumn"). You can tell from the picture that he was thrilled once they finally got off!
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| From Airplane |
The girls have enjoyed their time at home resting up from their amazing trip, but of course, they were very excited to celebrate the 4th of July! We had such an amazing time! We bought loads of Pop-Its and Smoke Bombs and watched as the kiddos had the time of their life smashing the Pop-Its and playing in the smoke. We grilled out hamburgers and had a feast of chips and homemade ice cream and soda. Then we all loaded up and headed over to Fort Gordon to enjoy the fireworks. It was so fantastic to just be a family again, to shirk off all the worries and just enjoy watching my children be children. I just loved sitting on our blanket and listening to Benjamin saying "Wow, wow, wow" while the girls stared up into the sky in sheer joy.
It has been an amazing holiday week, one that was thoroughly enjoyed and needed. Now we are back to business. Thankfully Benjamin's PET/CT was moved up to tomorrow. Obviously, we are anxious to find out what's going on with his spine and what course of action we're going to be following in the next few months. As soon as I get a chance, I'll let everyone know what the results are. For now, we would covet your prayers.
