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.
 |
| From Misc. |
|
| From Misc. |
I thought I'd take a few minutes to mention a couple of very special people. People who inspire me with their courage and hope and love...they are my heroes. They are...the Super Sibs...
That's right, my two heroes are my girls Genevieve and Autumn. It is true that Benjamin is an amazing trooper and has been through a lot of things during his LCH journey. However, since he's 2, in a lot of ways this is all he has known, so he considers it normal. You run a fever...well of course you go to the ER and have your port accessed. Then you get to stay in this cool hospital room and flirt with all your favorite nurses and play in the cool playroom. Isn't that the way it works with everyone?!
On the other hand, his sisters are *very* aware that things are out of the ordinary. And honestly, I feel like they are the ones who have suffered the most through this whole ordeal. It must be very frightening to find out there your little brother has a very serious disease. I remember that for about 2 weeks after Benjamin's diagnosis the girls would literally follow me around trying to listen in of every phone conversation that I had because they were so afraid that I was going to leave them again! Things have settled down quite a bit since then, but it is still very stressful on them, particularly when Benjamin gets sick and has to stay in the hospital. Even though we are **blessed** to have wonderful neighbors who can watch after them when we need to head off to the hospital, it still really throws off the girls routines. No matter what kind of activities are provided, it's just not fun to have your Mom and Dad gone, especially when you're already worried about your brother being sick!
It made me cry to read Genevieve's list to Santa this past year...the first few things were the typical kid stuff....a pack of Pokemon cards...a particular Littlest Pet Shop set...the clincher was her last item. "Benjamin to get better". That night, after prayer time, Genevieve turned to me and said "Mom, it's ok if Santa doesn't bring me any of the other stuff on my list...I just want the last one." I don't care how hard nosed you are...hearing those words out of your 8 year old daughter's mouth will bring tears to your eyes!
Autumn is a little less vocal about things, but her words are just as poignant. Last week when Benjamin was in the hospital I came home to pick up a few extra supplies. I dropped in to see the girls and Autumn gave me a HUGE hug. She looked up at me with those big blue eyes and said. "I miss my little Cutie Face...when is he coming home?" Sniffle, sniffle!!
As if that wasn't enough to heap on their young little hearts, there is the inequity of it all. When we are out and about the topic of conversation almost always (understandably!) focuses on Benjamin leaving the girls feeling left out. It's also very difficult when people give Benjamin gifts because Genevieve and Autumn feel like they are missing out. It's very difficult to explain to a 6 year old why they really don't want to go to the hospital so that they can get a bunch of stuffed animals and toys. I do the best I can to make them feel special, but it's still hard for them.
My little Super Sibs have been through so much this year, and yet, despite the fear, pain, jealousy and unfairness of it all they still remain loving, kind, sweet little girls. They are my heroes pure and simple and an amazing source of inspiration and true blessings from God!
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. ;)
That's right...you guessed it...yesterday (last Friday) the grand city of Augusta had a late visit from Jack Frost! Somewhere around 3pm the white stuff started drifting down and bringing with it screams of excitement from our girls! It was fun to watch the growing excitement as eventually the first flurries turned into a pretty steady mini blizzard. And then...the moment that they were all waiting for...around 5 pm the snow started to stick! Being the uber cool (and really, really lazy) Mom that I am, I fired up the oven and cooked up the Digiorno (Remember folks, "It's not delivery, it's Digiorno!"!!) while the kiddos ran around like little maniacs...catching snowflakes on their tongues...making snow angels...and of course, trying to build a snowman! Then, when they got good and cold, I invited them in for hot pizza (of course, Autumn just had to have corndogs because all we had was supreme pizza and she couldn't possibly just pick off the stuff she didn't like! ;) and some fresh snow cream for dessert!
The snow continued on through the night treating us to an unbelievable winter wonderland in the morning! After staying up until the wee hours in the night with their "sleepover" with a neighbor friend, the girls were still raring to go play in the snow bright and early in the morning. It was positively breathtaking to walk outside and see the dazzling white wonderland! Even Benjamin really got into the spirit as he discovered that (once you've got something covering your hands!) snowball fights are *awesome*!! With about 5 inches of snow (the largest snowfall for the area in a decade!) to play with, everyone had plenty of the white stuff to go around. Benjamin really enjoyed (perhaps because he was steroid enhanced!) having a snowball fight with the big boys, while the girls tended toward the more passive sport of building a snowman. Thankfully the snow didn't really start melting until around 11, which was right around the time that the kids were getting cold and cranky. Huddled up snug in their blankets around the glowing television, the kiddos enjoyed the rest of the morning while our poor snowman met a slow and horrible demise.
Authors note... This post was obviously written quite a while ago, but it needed more editing, so it didn't get posted right away.
http://www.facebook.com/album.php?aid=2039406&id=1630818693&l=cba9baae4e
This is another one of those posts that I’ve been thinking about for a long time. You see, I haven’t exactly been honest with you, my readers. There have been times during our journey with Benjamin that things have not always been as cheery as I have let on. As a matter of fact, there have been times that I have felt angry or scared or frustrated. And you know what…that’s is perfectly normal! Even David, a man after God’s own heart, had times where he grumbled and complained to God.
Now, I really don’t like to complain. I believe that there is a reason why God allowed Benjamin to have this terrible disease. I believe one of those reasons is to put the word out there about what life is like with a sick child. So, in order to be more truthful, I thought I would share some of the things I was going through in those early diagnosis months.
"I had quite possibly the worst day of this whole thing today. I can't really point to one thing and say "Aha!! That's what makes me feel so depressed!" It's more like a ton of little things that are suffocating me. Sometimes it does feel like I'm suffocating."
"Saw Benjamin's divot in his skull tonight and I just wanted to cry. I know it's supposed to be reassuring to know that the tumor's going away, but it didn't feel that way. Instead it reminds me of how beautiful he was and how ugly this disease has made him. Not to mention it reminds me of the **other** hole in his skull...the one that's eaten through to his brain. The one I can't see...the one that scares me to death."
"It's been a couple of weeks now since I've seen the original MRI of Benjamin's head. It's a scary picture! I don't know why, but it hit me really hard tonight. I'm scared. Really, really scared. That right tumor is so close to his pituitary gland that things could go south in a heart beat. To top it off, I feel like nobody understands me. Strangers look at Benjamin and think that I'm some kind of paranoid psycho that's making everything up. People I love and trust have no idea what I'm going through/how to talk to me. I'm so alone, and I'm scared and no one has the answers."
And since I'm getting it out there and being real, I would be amiss if I didn't point out that while all of these feelings were so intense and real at the time, I don't feel that way any longer. Life has moved on and dragged me (sometimes kicking and screaming!) along with it. We have been through a lot these past few months and God has been there every step of the way. So if you're going through the storm, please, please don't give up! Hang in there and trust in God. He will see you through even your darkest storm!
I'm grinning from ear to ear right now!
As you know, Benjamin had his MRI and bone scan on Monday. The procedures went very well, though Mr. Sleepyface took an hour to wake up...guess those warm blankets in the PACU were a little too warm! ;)
Anyway, we received the results yesterday, and they were amazing!!! Basically ALL of the lesions on both sides of his skull are GONE!! There seems to be some residual lesion hanging out in the sphenoid bone marrow, but it's a minimal amount. His bone scan shows some abnormal dye uptake in the bones and his spine (L4) which could either indicate residual LCH cells or maybe bone regrowth. Either way, it is absolutely fantastic news!! I'm bowled over! This is more than we had hoped for. It is truly a stunning answer to prayers!
We're going to need to finish out our remaining 6 months of chemo so we still cherish your prayers for Benjamin, but for now the Clan is celebrating in a huge way!!
Before
 |
| From MRI |
 |
| From MRI |
Thanks to the wonderful Pediatric Oncology group at MCG and Walmart, our Clan had a chance to take a break from the craziness of Chemo life and join some of our clinic family at the Care and Share weekend at Camp Twin Lakes. The girls have been looking forward to this event for about a month now, and I can honestly say they were not disappointed!
Even though the forecast was dreary (it was cold and rainy the entire weekend!), the accommodations made our camp experience unforgettable! Not only were the bunks nice and comfy, but there was a shower and bathroom located at the back of the cabin. And did I mention that they were heated?!! However, we had so many fabulous activities to attend that we hardly had any time to enjoy the cabins!
Kym (the Child Life Specialist) planned out so many fantastic activities for everyone that we are still talking about them! There were so many indoor and outdoor activities (like archery, pottery, and game time) to choose from that all of the kids were more than ready for bed at the end of each day! Meanwhile, Mom and Dad got to spend some time visiting with the other Oncology Mom and Dads as well as getting some special down time of our own. I did feel mildly guilty that the ladies activity was a movie and massage night while the fellas hung out at the ropes course, but somehow I managed to get over it! ;) During our together time as families we enjoyed a hilarious magic show from Magic Mike (make sure you check out the video of Autumn below!), and dancing to our new favorite songs "Ice Cream and Cake" and "Peanut Butter and Jelly". Then, to close out the outing, there was a spectacular party with dancing and hula hoops and glow sticks! The girls are *still* talking about how much fun they had at the party!!
I would like to extend a huge shout out to Kym from Child Life and all her amazing helpers! These ladies have such loving hearts and went above and beyond the call of duty to make the weekend an amazing time!! I'd also like to give a gigantic THANK YOU to Walmart who provided funding for the entire event. Not only that, but they also provided gas money to all the families!
Once more we'd like to say Thanks to MCG and Walmart for helping our family have the chance to "Walk on the Wild Side"!!! It certainly was a weekend to remember!!
