Keep Your Head Above Water

Wow!  You ever look back on an event and think "I can't believe how blessed we were to have this happen in our lives!"??  Well, that's exactly what happened to the Clan last week!  Last week we were chosen to be one of the families blessed by the charity known as Jason's House. 

Jason's House is a charity organized by the Surfside United Methodist Church.  It's mission is to "give free vacations to families burdened by care for a child with life-threatening cancer".  I can't begin to express what a magnificant blessing this was to the Knotts Clan this year!  It has been such a stress filled year for all of us, and to be given the opportunity to spend time reconnecting with each other...well, it literally brings tears to my eyes! 

The amount of loving thought and planning that goes into this event is staggering!!  You see, not only were we provided with an amazing stay at a *beach front hotel*, but EVERYTHING was provided for us.  *All* of our food was covered, as well as an amazing array of *entertainment*!  But that's not even half of it!!!  When we first arrived at the church, we were greeted by the fabulous volunteers and ushered to a room where the children were all given hats, stuffed animals, silly bands, t-shirts, bags of sea shells and so many snacks it made their heads spin!!  Then they were escorted to the church parking lot where they were allowed to pick out a Corvette to go cruising in!!!  As we packed up to head over to our hotel, the kiddos were presented with two *huge* bags full of goodies!  Every detail imaginable was thought out, and I promise you that there were enough surprises in those bags to last the whole week!!  From beach toys to bubbles to books, Elaine and her volunteers provided us with everything we could possibly need to have the best vacation ever!

And it really, really was the best vacation we've ever had!  Not wanting to press our luck with sunburn (Benjamin burns very easily due to the chemo), we spent the mornings playing on the beach.  Then we spent the evenings out on the town.  And let me tell you, there was so much to do!!  We enjoyed the Dixie Stampede, Ripley's Aquarium, parasailing, The Grand Cirque, a day at the Water park and so, so much more!  It was such a blessing to see everyone laughing and smiling again.  And so, to the amazing volunteers of Jason's House, I extend a very heartfelt "Thank You!"!  You brought a much needed healing to our family that no doctor could!

Author's note:  I will post pictures as soon as I can get them off of Ken's computer. ;)

When we were in the hospital delivering Benjamin, we packed several things with us, and one of them was my *favorite* labor and delivery movie...Aliens.  No body else will admit it, but seriously, when you're in the middle of labor, you really do feel like shouting out PLEASE...KILL ME!!!  Okay, I have to admit I'm strange. But then again you knew that!! 

You want to know the funny thing??  That first paragraph has nothing to do with the rest of the post other than that I really, really like the movie Aliens...how's that for random! :P  Now...back to the topic at hand...  I'm not going to sum up the movie.  If you haven't watched it yet...shame on you, you should go out and watch it now and then come back and read this post. (kidding!)

From Misc.

If you've been reading this blog for any length of time, you know that the last year has been...well...long.    A year ago, when our little man turned "Terrible Two", we knew something was wrong, but none of the doctors could tell us what it was.  It still hurts me to look at pictures of before our little guy was diagnosed.  It makes me angry that he had a large lump sticking out of his eyelid for *SIX* weeks and no one even bothered to run a simple CT.  Meanwhile, the very cells that are supposed to protect his body from bacteria and viruses were busy turning in on themselves and literally eating away at the bones in his skull (and little did we know, his spine and leg).  And then, in a blur, two short weeks after his birthday was the fever, the ER visit, the admission to MCG and finally (after what seemed an eternity) the diagnosis of Langerhans Cell Histiocytosis. 

A year of chemo, roids rage, CTs, MRIs, PET scans, bone surveys and several inpatient stays.  When I look back on all we have been through this past year, it simply amazes me.  Not particularly how much Ken and I have been through, though that hasn't exactly been a piece of cake, but more so our little dude and his sissies.  There has been so much for them to go through at such young ages.  Benjamin continues to astound both myself and his nurses at how well he handles the pokes and prods that go hand in hand with chemo.  He's just so amazingly strong!  His sisters have truly blown me away this year!  Even when Benjamin has been roid raging (which actually is usually a lot more like really bad PMS), they are so patient and sweet and loving with him.  They really do deserve the title "Super Sibs"!

It is difficult knowing that for many years to come, Benjamin's birthday will serve as a reminder of his diagnosis with LCH.  It's also hard to deal with the knowledge that there is a chance (roughly 40%) that he will spend another birthday on chemo somewhere in the future.  It breaks my heart to know that there is still so little known about this disease (whether it is genetic or environmental, what initiates it...the list goes on and on) and that other children all across the world are having to go through the exact same trials that we went through or worse (I know of several families that have had over 4 recurrences, and several that are having to go through bone marrow transplants!). 

Anyway, those are just a few thoughts that have gone through my mind this last week.  As far as Benjamin's birthday, it was a smashing success!!  A couple of days before his birthday, Benjamin and I were looking at pictures and he saw an old Halloween picture of Autumn where she had dyed her hair black.  He got such a kick out of the idea that we decided that it would be fun to give him a new "do" for his birthday.  Soooo...we headed over to Party City and he picked out some blue hair color (and a Spongebob balloon...and Spongebob party hats!).  Since Momma's a sucker for mohawks, we slicked up the little guys hair and gave him the most fashionable blue mohawk in town!  Then it was time for pinatas, cake and presents.  It's fun to see how much he gets into opening his present and how genuinely happy and surprised he is!  It's nice to see that even though he's been through so much, my little man is still so amazingly happy and fun loving! 

From Misc.

Local girls Genevieve and Autumn Knotts headed back to school today.  Teachers were unsure whether they would be ready for the academic duo, but are prepared to give it their best effort.  The girls mother is quoted as saying "I'm going to miss those girls.  What will I do with all the spare time I'm going to have?!"

Okay, okay...so it wasn't quite important enough to warrant local news coverage, but today *is* a momentousness moment!  For the first time ever, both of my big girls are going to public school this year!  Last year was very disruptive, to put it mildly, so as I've mentioned before, we decided to put Genevieve back in public school.  To be honest, it was a difficult decision.  We have a fabulous public school, but there's just no way you can match the one on one environment of home schooling.  However, since Benjamin's still finishing up his chemo, we decided that the girls would be less impacted if we sent them back to a brick and mortar school. 

This morning I packed up the girls and we waited out on the curb for the bus.  It was a very exciting time for the girls.  It's kind of funny seeing Autumn walk Genevieve through what the school day schedule would be like.  And then it finally came.  As the bus rolled up to the curb and the girls gave me their good bye hugs, I felt a mixture of emtions.  Pride at the brave young women that my girls are becoming...at the strength they have shown this last year.  Anxiety over the whirlwind of adjustments that Genevieve is going to have to make this year.  And maybe, just maybe a tinge of guilt.

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!

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.

This past month, my girls and I have lived separate lives...literally.  While the girls headed out to AZ to be spoiled rotten by their Grandmas and Aunties, Benjamin and I (and a few other special helpers!!) have been working our tails off trying to renovate their bedroom.  The project took waaaaaay longer than I thought it would, but in the end, I am thrilled with the way it turned out!  Unfortunately, I couldn't turn up any "before" pictures, but just imagine el cheapo white paint right on top of the dry wall (no primer) and you'll have a pretty good feel for how it looked.  Anyway, he's a few pictures of the project and of course, the finished product.

When I was in younger I used to watch General Hospital.  One of the main reasons I watched it was because of the hunk (Jack Wagner) who played the character Frisco Jones...but I digress.  If you haven't watched a Soap Opera, then I'll give you a brief primer.  Basically, EVERYONE cheats on one another and EVERYONE lies...a lot.  There ya go, now you got the basic plot for just about every Soap Opera out there.  During my GH years, one of the story lines was that there was a spy agency (the WSB) that several of the characters were involved in.  One of the agents, Robert Scorpio, ends up bumping into an old flame and former agent Anna Devane (Geee.....I wonder where *this* long term story arc ends up?!).  During one of their first encounters, Anna "faints" and Robert (and his wife) find out that Anna has a *horrible scar* on her face (that she covers with hair).  We are told that the scar is from an accident during her agency days.  However, as the story progresses, eventually Robert finds out that Anna's horrible facial scar is a fake...a piece of latex make up that she applies to her face.  Infuriated, he confronts Anna about the lie.  Anna's response struck a chord with me... here's the direct quote...

"After all my operations and skin grafts my face was finally mended...but not the scars inside.  Nobody else can see them, but I can feel them."

This past week has been very difficult for Ken and I.  Lots of emotions...pain, fear, frustration, anger....you name it we've had it.  That got me to thinking.  Wouldn't it be handy to be like Anna from General Hospital and have a scar that you could just paste on your body.  Then everyone would be able to see the pain you feel.   A visual reminder of the invisible wounds inside.  I wonder if we had a system like that, would people tend to be more gentle and loving with those covered in scars, or would we tend to avoid "those" people.  Would we reach out and cover the person in love like the Good Samaritan, or would go out of our way to distance ourselves from them like the priest and Levite?   I think I'll leave my readers with that thought while I search out latex makeup on ebay. ;)

In reply Jesus said: "A man was going down from Jerusalem to Jericho, when he fell into the hands of robbers. They stripped him of his clothes, beat him and went away, leaving him half dead. ³¹A priest happened to be going down the same road, and when he saw the man, he passed by on the other side. ³²So too, a Levite, when he came to the place and saw him, passed by on the other side. ³³But a Samaritan, as he traveled, came where the man was; and when he saw him, he took pity on him. ³⁴He went to him and bandaged his wounds, pouring on oil and wine. Then he put the man on his own donkey, took him to an inn and took care of him. ³⁵The next day he took out two silver coins^[c] and gave them to the innkeeper. 'Look after him,' he said, 'and when I return, I will reimburse you for any extra expense you may have.'

A fellow Histio Mom (Mom to Joey B that I mentioned last night) wrote this and it was so good that I thought I'd post it here on the blog. Right now it pretty much sums up how we're feeling...

I’d like to apologize in advance for the length of this post, but I’ve got a lot of information that I need to write out. :)

Wow!! What a trip! For those of you who have been following my blog, you’ll probably remember that we have been planning a visit to Texas Childrens Hospital in order to see Dr. Allen (one of the top US LCH researchers). Well, we just finished up the trip (I’m actually writing this in the airplane as we travel from Houston to Charlotte…ahhh the amazing wonders of the modern world!!). It has been such an amazing experience that it’s hard to put into words…but you know me, I’ll give it a try! ;)

The beginning of our trip was…uhhh…more than a little stressful, and that’s putting it extremely kindly! Having heard such wonderful things about the folks over at Corporate Angel Flight (and, let’s face it…having the cash reserves dwindle significantly). We were entered into their system and told that it could take a few weeks for them to match us up with a flight. Unfortunately, they had no flights available for us, so we needed to go to Plan B. Thankfully, our neighbor works for one of the major airlines in Augusta and was able to hook us up with Buddy Passes (which cost significantly less than regular airfare, but are standby seats). Plan B was going really great up until the day before our flight when our neighbor called us to let us know that all the flights of that day were becoming overbooked and the Buddy Passes weren’t going to work. Not a problem..on to Plan C. So I booked us on the 8:30 flight and finished all the packing and was ready to go. We got down to the airport and waited for our flight to board. About ½ hour before it was supposed to leave, we found out that it was going to be delayed because “they couldn’t find the pilot” (uhhh….yeah, I don’t want to be on a flight without one of those!!”) That was fine because the flight out of Charlotte was delayed too. Long story short, at about 10:00pm the gate agent informed us that the flight was going to be delayed until 10:30 and we had missed the last connecting flight out of Charlotte, so we would be booked on the 5:30 am flight the next day. Needless to say, we returned home very frustrated, but there was nothing we could do. After fixing all the hotel and rental car arrangements, we got some sleep and got up at 4:00am for our flights. Thankfully we were able to contact the Drs. office and reschedule our appointment for a couple of hours later since our new flight would have arrived at in Houston at the time when our appointment was scheduled.

So tired and a little on the frustrated side from all our “adventures” in traveling, we arrived in Houston and I am pleased to say that things were simply amazing from there on out. After freshening up at the hotel (who after hearing about our airline experience let us into our room before checkin in time!) and having lunch, we checked in at the oncology area and were truly blown away!! First of all, the hospital is HUGE!! But even though they see a high volume of patients, you would never know it, because a trip to the oncology department is almost like a visit to a children’s museum. There was a large playroom filled with all kinds of different toys and staffed by a lady who acted out puppet plays for the children, then there was at least two arts and craft areas (there might have been more, but we were met by the Dr. very shortly after our arrival, so I didn’t get to check everything out). There were several mobile gaming systems for older kids and a decked out infusion room. There was also a dedicated Child Life Specialist for the oncology wing (who brought Benjamin a DVD player and Spongebob DVD to his room for us!).

But the real treat was when we got to meet up with Dr. Allen. It’s really hard to explain what a relief it is to talk with a doctor who specializes with the ins and outs of this tricky disease called LCH. Dr. Allen was gracious enough to give us two hours of his valuable time, but those hours passed quickly as Dr. Allen listened to our concerns and addressed them one by one. Obviously, we were able to discuss many things during our appointment, and we’re still processing a lot of the information, but overall, Dr. Allen was very pleased with Benjmain’s progress. After having his radiology department review Benjamin’s scan, he said that we are very well on the road to recovery with his skull lesions and we stand a good chance of avoiding him developing Diabetes Insipidus. He was, however, a little concerned that Benjamin’s last bone scan showed some activity in his L4 vertebrae and suggested that we have a PET scan done to determine whether it looks suspicious for active disease. If the PET shows anything abnormal, he suggested that we have a biopsy performed. If the biopsy shows that there is active LCH then he suggested that we switch to “salvage” chemotherapy. While I hate to think that that might be the path that we need to travel, in many ways it is a relief to know that we have a plan of attack. However, if the PET looks good, then we will be right on track for ending up our chemotherapy in August…and maybe being free of this rotten disease once and for all!! Obviously, you can tell which way our thoughts and prayers are headed!

While this trip did not go exactly as planned and was *much* more expensive than we thought it would be, we are thrilled that we finally have answers from someone who’s seen a lot of LCH. Ken and I return to Augusta with much to be thankful for, much to think about, and a whole lot to pray about!! So, if you don’t mind, we would appreciate your prayers for our family. Our journey isn’t quite at an end yet, and we could use all the comfort that we can get. I would also appreciate prayers for several of our other LCH warriors. Nataly is having a very rough patch of things and is in the hospital waiting for answers as to why she has taken such a bad turn. Joe N. has been switched to a more aggressive chemo (he wasn’t responding to the last treatment) and seems to be on the rebound (but he could still use your prayers). Joey B. has had a recurrence and is going to need a stem cell transplant. My friend Justice S. needs prayers…she had another seizure a couple of days ago. And last, but certainly not least, prayers of thanksgiving for my little princess Sophie whose liver tests came up more positive than expected. Sadly, this is only a fraction of all the fabulous Histio warriors that I know about, but I’ve already wrote and epically long post, so I think I will wrap it up for now. :)

Author's note: I have many pictures to share from the trip, but it's very late so I will have to post them tomorrow. :)

I have sneaky friends.  Very, very sneaky friends!  Several months ago, my friends submitted my name for a contest in the local Parenting magazine.  I knew something was up when my friend called me and said "Hey, I just wanted to let you know that we entered you into a contest.  So if you get a phone call saying you won something, don't think it's a spoof or anything."  So I mentally filled the information under the heading of "Wow, my friends are really cool and loving." and thought very little of it.  And then I got the call.  Karin from the Augusta Family  magazine called me up and let me know that my friends had written a stirring submission about how wonderful of a Mom I am (yes, I was able to stifle a laugh!) and that I had been chosen for their Mommy Makeover.

And this is where I will be honest...  I hate makeup...I hate dresses, and I really don't enjoy the whole "fashion experience".  I'm not sure why.  I know that many people would kill to have a beauty makeover, but the first thought in my mind was "Run like the wind Nellie!  You've got a head start and they can't possibly catch you!!"  But you see, I love my friends.  And my friends had gone out of their way to make this possible.  And so, I resigned myself to fate.  I, Nellie...Queen of shorts and tie dye shirts, was going to have a make over, and there was nothing to be done about it.

I like to think that a lot of my success from this event came from the fact that I was honest right from the get go.  I told the wonderful ladies that I didn't know anything about fashion and to treat me like a preschooler.  Use small words and be very specific about what they wanted me to do!  And so we tried on clothes...a LOT of clothes as we slowly whittled down my body type.  I was forbidden to hang up any of the clothes once I had tried then on and was severely reprimanded when I folded up a pair of pants.  (Kidding!   Actually, I was treated like a Queen and it was tempting to ask how much it would cost for me to hire the Dillard's fashion team as my private fashion consultants!  However, seeing as I have extremely limited financial reserves at the moment, I was pretty sure it would be out of my price range.)

After my killer outfit was finally discovered, I was whisked away to the hair salon.  Again, not another one of my strong points.  I learned that there is actually a term for my favored type of hair style...wash and wear.  Funny...I thought it was wash and stick under a baseball cap!  We were even daring and added a little bit of a red tint to my hair...oooo lah lah!! 

With hair glued in place with a large amount of hairspray, we headed over to makeup.  Of all things, this was the thing I was dreading the most!  Makeup and I have had a long history of malevolence.  I do believe the last time that I have had makeup on was when at my wedding...and that was a looooooong time ago!  There are many reasons why I dislike makeup, but probably the biggest one is that I feel like I have mud globbed all over my face.  Pretty mud, but mud all the same.  Anyway, I am pleased to say that even with all that history, I found this experience with makeup to be much more pleasant!!  Maybe it's the really high quality makeup that they used...maybe it's that I had an expert putting it on, but this makeup felt...dare I say it...comfortable! (Ahhhhh!!!!  I *can't* believe I just typed that!!!!) 

And then finally after everything was in place, we had the photo shoot.  Again, very unfamiliar ground!!  I'm used to being the one behind the camera!  Thankfully, the photographer was very patient and told me exactly where to stand.  I wish I could show you some pictures from the event, but I'm afraid we're going to have to wait until the next edition of the Augusta Family  magazine comes out. 

When it's all said and done, I have got to say that the Mommy Makeover was a really amazing event!  Never, ever, ever in my life did I dream that I could have had that much fun at a makeover!!  I'd like to thank Karin and the Dillard's team for all the hard work that they put into making the Mommy Makeover such an amazing event!!  You ladies really know how to make a woman feel like a Queen!!

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....

1. 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!!
2. 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".
3. 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!
4. 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

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.

I can't believe how much fun I've been having with my Cricut! It really is such an amazing tool and has so many applications that it almost boggles the mind! Lately, I've had a fun time designing things with the vinyl. In my previous post, I've already put up a picture of the Histiocytosis decal that I designed (but I've gone ahead and put it here too since I'm so proud of it!) By the way, the symbol above the web site is the Japanese Kanji which means "Warrior". I thought it was very fitting for all of our Histio warriors! If for some reason anyone is interested in having a Histio decal, please let me know and I'll be sure to get one out to you. :)

From Misc.

Lately I've had a BLAST designing stick figure decals. You know, the trendy little white stick people that see adorning just about every SUV now a days. But of course, being Nellie, I wasn't content to have just your normal, everyday stick people...oh no, I had to add my own little twist. Here's a couple of pictures of the work I have done. I have to say I'm pretty proud of how they turned out!

From Misc.

From Misc.

Before I go any further, I’d like to apologize for this post. Some of my readers are not going to appreciate the words that come below. I’m sorry, but I feel like what I am about to write needs to be said. I would also like to add some precursor information. If you are new to the site, I want you to know that I *am* a Christian. I believe in God and I believe that he is actively at work in our lives. I also believe that He cares about all of his children and did not wind up the earth and then watch impassively as things unfold. I also have a firm Biblical foundation for my beliefs and if you’re curious, just email me and we can talk further.

Sooooo, with all that being said….

This week our oncology group lost a child to cancer. I don't know the family. I didn't get to meet the child. Still, my heart is broken all the same. I hate cancer. I hate what it does to vibrant young people, robbing them of the joyful times that they should be enjoying. I hate that even with all of our medical advances sometimes we still lose some of our brave warriors.

One of the things that really drives me crazy is when you are struggling with something and well meaning people say things like "Don't worry about it, God's in control." or "It will all be ok.". While they are well meaning, I don't think using those phrases are the most useful things to say to someone who is hurting and worried. Yes, I *absolutely* agree that God is in control. I don't doubt that, but here's the thing. Sometimes God's plan doesn't look a thing like ours. Do I want my child to be sick and have to go through chemo? Of course not! Is God still in control even when I don't get the answer to the prayer that I want? You bet. Am I still worried about his illness even though I know that God is working out a plan? You bet your sweet cheeks I am.

When someone is facing a major source of worry, there are so many more helpful ways to encourage someone than to throw out cliches, even if they are well intentioned. I'm sorry, but saying that "God is in control" and leaving it at that is like putting a cute kids bandaid on a gushing chest wound. It might make you feel better, but it isn't going to do a whole lot of good to the person who is wounded. And frankly, to say "It will all be ok" is basically the verbal form of slapping someone in the face. How do you define "ok"?! Because I have seen amazing Christians that fervently prayed for their loved one to be healed only to see that loved one pass away.

So, what should you do when you're talking to someone who is going through a crisis? My biggest piece of advice is to L-I-S-T-E-N to them! A lot of times, just having someone who is willing to lend a compassionate ear while you lay out your worries and pain is all that is needed. Sure, it takes a lot more time than whipping out a feel good statement, but I promise it will be time well spent for both of you. When you do speak, be compassionate and loving. If you don't know what to say, that's ok. Recognize that they are going through something bigger than the two of you and do what you can to help. God really is in control, but he needs our hands, hearts and all of our compassion to help people who are going through the storms of life.

Greetings from the great state of GA. :) Once more I have only good news to report. Benjamin is doing great with his treatments and we are looking forward to having this part of our Histio journey behind us. The current plan is finish up chemo around the end of August. Our next set of scans is scheduled for next month, so please continue to pray for us. You’ll notice that I said “this part of our Histio journey”… one of the more unpleasant things about Hisito is that you’re never really sure whether or not it is truly gone. With so few people to study, it’s hard to know for sure what the true recurrence rates are. Depending on the study you look at, Benjamin’s form of LCH has a recurrence rate of about 37%. That means that there is a chance that anywhere from 6 months to 10 years later we will be facing another round of chemo with our little guy. We all know that God is ultimately in control, and he can completely remove the rogue cells if he wants to. However, our plans are not always God’s. So, as we finish up these last few months of chemo, we look forward to how ever much “normal” time we might have (hehehe…as if there was *ever* anything “normal” about our Clan!!).

The girls have been doing great, and I am amazed as I watch them develop into the beautiful young women that they are becoming. Genevieve has really shot up like a weed this part year, both physically (it won’t be long until she’s taller than me at this rate!) and mentally. I can’t believe that next year she’s going to be in the 4th grade! Where does the time go?? Autumn continues to amaze me how quickly she picks things up. She has remained the top AR (Advance Reader) reader leader in the school for 3 months in a row! Averaging about 3-5 books a week, she is a voracious reader and is quickly devouring all the books in the household! I’m really looking forward to seeing what she does in 1st grade. Lookout world, here comes Hurricane Knotts!

Speaking of school, we have decided that both Genevieve and Autumn will be going to public school next year. I have thoroughly enjoyed my time homeschooling Genevieve, but this past year has been a bit of a stretch for both of us. It seemed like just when we would get caught up, Benjamin would get sick again and we’d be behind once again. I also need a little time to regroup and strategize. It’s been quite the year and a few things have fallen through the cracks. Now that we’ve got a little bit of down time, I plan on getting the household back up to speed.

As always, I’d like to thank you for your continued prayer for our Clan. It’s been amazing to watch God work in our lives, and I look forward to seeing what he has planned for us next. :)

I really can't believe it...this weekend my first born turned 9 years old...9! I know it sounds cliche, but it's really hard for me to believe that I have been a parent for 9 years. Where has the time gone?! It seems like just the other day we brought Genevieve home for the first time. I was so nervous! I never really liked children, and especially not babies, and here I was entrusted with the most beautiful little girl I had ever seen in my life! Just a blink of an eye and years went by..she was a big 4 year old putting her baby sister Autumn in dress up clothes. I remember watching them play together so sweetly, Genevieve has always been such a caring big sister! And now, now I find that 9 years have gone by more quickly than I could possibly have imagined and my big girl is so grown up! She has traded Dora for Disney Fairies and Maisey books for Harry Potter. She has grown from a tender little infant barely able to take up a cushion on the couch to an amazing young lady who holds her little brother's hand during chemo and tells him that it's all going to be ok. As I look at the past and marvel, I can't help but wonder what the future is going to hold for my little princess. However, I know that whatever comes her way, she's going come through it with style and grace like she always does.

Anyway...enough nostalgia...back to this weekend. Ever since she was about 6 years old, Genevieve has been asking for a Nintendo DS. Since they are rather fragile items, I told her that she could have one when she was 10. So, for year after year, Genevieve has dreamed of the day that that elusive glowing piece of electronic wonder would warm the palms of her longing hands. Through all these years, she's waited with an uncharacteristic patience. So, Ken and I talked it over and decided that since she's been so good this year, we would go ahead and let her have it for her birthday this year. We coordinated with Aunt Kelly and Grandma Gregory to get her the game that she really wanted, but we kept it all ultra, uber top secret. The big day finally rolled around with Genevieve none the wiser about the treasure that waited for her in that blue gift bag. Here is the footage for your viewing enjoyment...

Yep, I've been AWOL for a while, but it's all been good!  Benjamin continues to do amazing through his treatments.  Sometimes I wonder if he doesn't have mutant healing genes like Wolverine.  On that note, we have officially gone one whole month without being inpatient!  That's right, my boy made it through the whole month of March without going to see his girlfriends on the 5th floor!

We've had several big events since the last time I wrote.  First of all, we had a blast celebrating my birthday!  I was really surprised by the girls this year, they went all out and got Momma a gift that she really loves!  Mmmmhmmm they got me the Mack Daddy of all Nerf guns...the Vulcan EBF-25!!  Fully automatic with a firing rate of 3 darts per second, Momma is truly one happy camper!  I've even taught the kiddos a new game...it's called "Run Like a Chicken"! (grin)  I also received a most  generous and downright *ADDICTIVE* present from my Mom for my birthday.  Yep, I got me my very own Cricut! I'll be honest, in the beginning I really didn't think I'd be using it for much more than making paper dolls for the girls (which is pretty cool in and of itself!).  Then I discovered two things...an amazing piece of software called Sure Cuts A Lot, and Cricut's adhesive vinyl.  I'm not going to go into very much detail, but we'll just say that the girls newest complaint is that "Mommy hooked the Cricut up to the computer and now we don't get to use it anymore!".   From car decals to this years Easter eggs,  I've probably had more  fun playing with that little gadget than a person should!  After my gifts we headed out to watch "How to Train Your Dragon"...in 3D!!  I'm pretty much a sucker for any movie with dragons, but I gotta say, that movie is totally cool!!!  A total must see!  So, in summary, it's true...this was the BEST BIRTHDAY EVER!!

From Misc.

From Misc.

And then there was Easter!  As tradition now dictates, we spent a whole day dying Easter eggs with our neighbors.  Since we have connections, we were able to get about 5 dozen eggs, which meant that there was plenty of eggs for both the little kids and the young at heart to decorate!  As always, we had a great time!  We also had a really fun time eating Easter dinner with my neighbors mother.  I am really thankful to have such amazing people in my life!!



As if that weren't enough, this week we started Spring break.  It's been a much needed reprieve for both the girls and myself.  We have mostly stuck around the homestead and enjoyed visiting with our neighbors and just hanging out, though we did manage to get down to the lake on Wednesday.  The weather has been in the lower 90s this week, and the girls thought it would be fun to go swimming.  They did have a really great time, but I'm here to tell you, that water was C-O-L-D!!!!  It was funny watching Benjamin running into the water teeth chattering, but not wanting to get out!

Speaking of "fun" times...  Benjamin performed an experiment tonight that NONE of my children have ever done before.  Yep, leave it to Chemo kid to decide that mini robin eggs (the Easter candy) are just the perfect size to shove up your nose!!  Boys!!  Sigh.  However, I'm **very** thankful about two things...1) That it was a candy that begins to dissolve on its on when exposed to liquid (ie snot) and 2)  my husband is so smart and came up with a completely non invasive way to flush out the remnants (a nice warm shower).  I'm also really thankful that Benjamin has had such a runny nose the last week or so, because I'm afraid otherwise it would have been another oh so fun ER visit.  You know it's bad when you look your 2 year old square in the eyes and say "I know what you're thinking and you are *not* going to the 5th floor for this!  Let me assure you that they can handle this just fine in the ER and that you will *not* be able to visit your nurse girlfriends!"  Still, since we already have an Ophthalmology appointment tomorrow, I plan on swinging Mr. Booger Butt down to the clinic for them to have a quick look see up his nose.  It's amazing all of the interesting experiences one has while parenting!

I think I'll go ahead and wrap up this post.  As you can see, it's been an amazing and (mostly) fun filled month!  I'm looking forward to seeing what the future holds for us in April. :)

I am completely bowled over!!  A few weeks ago we were contacted about the prospect of receiving tickets to the circus for our family.  Little did I know then what a blessing we were in store for!  After talking with our Media Relations specialist at MCG, we learned that an organization called Give it 4 Ward was sponsoring the event.  We also found out that the local news station, WRDW, was interested in shooting a little footage of the give away.  I figured it would be a good pick me up for the kiddos, so we worked out a time to get together. 

May I say that I am amazed at the generosity of Candye Smith and her organization!!  Not only did they treat us to 5 tickets to the circus, but they also showered Benjamin with presents!  As you can see in the news footage, Benjamin was ECSTATIC about the tricycle that they gave him!  As a matter of fact, after the interview was over, the little guy watched us like a hawk as we loaded up his new bike in the car.  On the ride home I caught him fingering the tassels from his tricycle pretty much the whole ride home!  I guess he just had to make sure that it really was his.  Every morning since then he has made sure that he gets to ride his trike first thing!  Yes, Candye found the perfect gift for our little Bubber Dude! 

The girls were so excited about going to the circus that they kept asking me over and over and over when we were going.  Then, to make the day even more special, Bruesters ice cream held a promotion that morning.  If you showed up in your PJs you got a free waffle cone!  As I told Genevieve, there are many things I will do for free ice cream...the *least* of which is to show up in my PJs.  So, after we enjoyed our free cones (some enjoyed them a little more tactility than others....aheem...ie Benjamin) we cleaned up and then headed over to the circus.  We were **not** disappointed!  Benjamin really enjoyed watching the trained cats, while the girls preferred the lions and the girls who spun from their hair.  The show was amazing and the kiddos happily chatted away about it on the drive back home. 

I am just amazed at the fantastic generosity of organizations like Give it 4 Ward!   I'm not sure whether or not Candye knows the full extent of how uplifting her ministry is, but I know for certain that our Clan will not be forgetting this "random act of kindness" anytime soon.  Do we plan to Give it 4 Ward??  Yes ma'am we do!

Another blood draw down. Benjamin is doing much better and his cough is almost gone. It was really strange that he caught a cold and didn't end up in the hospital. Nice and refreshing...we should do this more often (or hey, he could just stay healthy!). Benjamin has started wetting the bed just about every night and he seems to be wetting his pull ups. I told our nurse practitioner and we got a urine sample. I am praying that as one of my friends said "Maybe it's just a toddler quirk". I really don't want it to be diabetes insipidus. We can deal with DI if we have to, but obviously I really don't want to. That's one of the things I hate the worst about this stinking disease. It makes me feel paranoid.


On a bright note, my wonderful friend Dana asked me if I would write something for her blog. You can check out what I wrote here. Dana is an amazing woman and probably the coolest preacher's wife I have ever met! She is also a brilliant blogger, and you owe it to yourself to look around her blog. I'm positive you're going to love reading it!.

So often you fade away my bright shinning star. You are brilliant and beautiful, but sometimes in the hurry, the rush, the crowd of other things that press their way to the front you get lost. And for that I am terribly sorry for you are truly one of God's Great Things. Stunning in Intellect, Strength, and Charm you are the true definition of Grace. But tonight...oh tonight you shone bright! Your greatness shone as it should and you were truly resplendent! May you always shine and continue to irradiate the darkness with your beautiful smile...my Boo...my Autumn.

Just for a little fun to celebrate National Rare Disease Day...

You Know You're a Histio Mom When...
You carry around a thermometer in your purse just in case you need to take a temp on the fly.
You also carry around a tube of EMLA cream....and a box of sani-wipes...and at least 2 bottles of hand sanitizer.
You don't really have to be awake to make the drive to the ER.
The hospital greeter, security guards, and OR nurses know you on sight and ask how your kid is doing.
The people in the hospital billing department also know you by name.
You have a suitcase packed in the car for those surprise hospital stays.
You look at the calendar and say "Isn't it about time for our next fever?"
You have to explain to the ER nurse how to spell your kid's diagnosis and medications.
You know when National Rare Disease Day is.
You see the hospital chaplain and say "It's ok...we're just in for an MRI."
You know what a histiocyte is...and you find yourself explaining it to ER doctors.
People look at the massive scar on your kids chest and you reassure them by saying "It's ok...it's just from his port."
Your child has a favorite anesthesiologist.
Your "lite" reading material is a medical protocol.

Another stressful day...

Benjamin woke up at 6am whinny and very lethargic. As the day progressed he alternated between sleeping and crying. Totally not my little guy, but no fever, so I decided to keep an eye on him. Around 11am Autumn got up and began throwing up. Then around 12 am Genevieve started to throw up. Made a quick triage area in the living room with sheets on the couches and garbage cans. With Benjamin in my bed, I bounced around between the three for a couple of hours while I tried to get Ken home. Since it was a Sunday and we were thinking maybe Benjamin had an ear infection, I headed down to the ER to have him checked out once Ken was able to get home.

By the time we got to the ER, Benjamin was beginning to bounce back a little, and the doctors couldn't find anything wrong with him. They suspect that he was just recovering from the bug he had already had. Yay!!

Another blessing was that the girls were much better by the time I got back home. They're running low grade fevers right now, but they are feeling almost 100%. We're hoping that Ken and I are able to stay away from the bug and that Benjamin doesn't catch it again. It'll be nice when things are back to normal again. Thanks again for all the prayers!!

Sigh...it's been a draining week! Where to start...

We had the snow last weekend which was so fantastic and fabulous and a nice, NICE break for the family. Unfortunately, it also set us back a bit...GS cookie delivery was delayed and several other things got pushed back.

Soooo...Tuesday rolled around and we did the clinic thing and then headed back home to get the cookies ready for delivery. We had a fun time dropping off the cookies and chatting with the clinic staff (and of *course* hamming it up for a few pictures!). We got home and had a great dinner of pizza...things were going great! That is until about 11:30 pm when Benjamin woke up and redeposited his digested Digiorno all over Ken's shirt! Poor little guy was up all night throwing up, with Daddy and Mommy taking shifts watching over him. The on call oncologist wasn't particularly worried about dehyrdration, so we didn't take him in that night. He stopped throwing up at about 4:30 am and things were looking up again... until about 8am when he started running a fever.

Sigh...got him and me cleaned up and we headed over to the clinic to get some fluids and antibiotics. He perked up really well after a little bit of fluids and it looked like we were going home, but unfortunately, Benjamin's fever spiked to 103 (which is *not* fun...what with the full body shakes and the chattering teeth and all!!!). Soooo...we got a room over at the CMC and settled in for the night. By Thursday morning, Benjamin was looking like he was feeling better...until he threw when I offered him some Lucky Charms. Still, I was optimistic that we would get out of the hospital that evening (after a 2nd batch of antibiotics) since the little dude had definitely perked up. He even began eating again in the evening, but then Little Man had to go and ruin my plans by running a low grade fever. Soooo...another night spent at the CMC.

We got one of Benjamin's favorite nurses on Thursday night (as well as dinner and play time with his sissies) and that seemed to do the trick. :) This morning with his appetite perked up and no fever, the Oncologist finally agreed to let us go home. Ahhhhh....it's really true...there's no place like home! Even though Benjamin is so *totally* loved and adored by all the 5th floor nurses (nurse assistants...cleaning ladies...doctors...child life specialists...the list goes on and on and on!!) it's really nice to get back to our normal life...whatever that is. ;)