"OH WHERE, OH WHERE HAS MY TINY BRAIN GONE?

"OH WHERE, OH WHERE HAS MY TINY BRAIN GONE?

OH WHERE, OH WHERE CAN IT BE?"

19 Days to Go

When kids are first diagnosed with cancer, and we parents are sort of walking around in a fog, it’s understandable that we would be distracted. … burn dinner, forget to cook dinner, forget to BUY food for dinner, etc. We even have a term for it on my ALL-Kids Parents Support List: “Chemo Brain”. I’m not sure, though, what the time limit is for using chemo brain as an excuse for forgetfulness. We have 19 days to go … can I still use it?

Three weeks ago, I put my checkbook in my purse one morning before leaving the house so I could pay for Brayden’s gymnastics lesson that afternoon. I ran errands all day, went home for dinner, then went to the gym, where I discovered the checkbook was gone. Obviously, it hadn’t grown legs and wandered off, so I did what any rational woman would do. I called my husband and ripped him a new one for taking the checkbook out of my purse without asking me. Imagine my embarrassment a few minutes later when Circuit City called to tell me someone had turned in the checkbook they found in the parking lot, with my name in it . Oops.

Two weeks ago, I drove off and left my debit card in an ATM machine. Apparently, if you leave a card in the machine for more than so many minutes, the machine sucks it back in. I was unaware of this, all I knew was that I tore my car and my purse apart looking for that card, to no avail. So, I felt pretty lucky when I called the bank and found out they were holding it for me.

Earlier this week, I lost my sunglasses. Not a big deal, really, except they were the first pair of REAL (ie, over $20) sunglasses I had ever bought, and I really liked them. I called the restaurant where I’m positive that I left them, but no one had turned them in. Darn it. Guess I didn’t get as lucky the third time.

So today, I went to Sunglass Hut to buy another pair ……… only to have the Sunglass Hut clerk call me tonight at home to tell me I left my credit card in her store --- what the heck is wrong with me??? Forget the learning disabilities and growth issues and emotional problems Kendrie might have to deal with for the rest of her life --- a much greater concern is the empty black-hole vacuum where my brain used to be!!!!!!!!!

Here’s another story that might clue you in on how my week went (actually, it went great, but hey, I’ve got to talk about *something* in this journal, right?!?)

As you know, we are planning an off-treatment party for Kendrie next month. I would love nothing more than to invite every single person who follows along on our Caringbridge site, and pay to have you all flown to Georgia for the party. If I was Donald Trump, or Bill Gates, trust me, I would. But anyway, we have been planning this party for some time and reserved a lodge on the Air Force base to hold it at. The lodge sits on a small, pretty lake, and I thought it would be very picturesque to have the lake as the backdrop for the party. And, most importantly, the pinnacle of the party, the highpoint of the entire celebration, was going to be the moment when we all follow Kendrie out onto the dock and clap and cheer as she raises her arms triumphantly overhead and pitches her final chemo pills into the blue depths of the water. (Not that I’ve been anticipating that moment for a long time, or anything.)

So, we drove out to the cabin the other day to pay the balance of the reservation fee …. and rounded the corner to the lodge …. imagining how fun it will be on celebration day …. and how beautiful, with the lake in the background …. Only to discover THEY DRAINED THE FREAKIN’ LAKE!!!! It is nothing but a big dry lake bed now, with a lot of rubber tires and mud out in the middle!!! Excuse me, but what the hell is that about????

Seriously, I was speechless. As I sat in the car, mute, wondering if it could possibly rain enough in the next month to fill it back up, or how many garden hoses it would take, Blaine points to a teeny, tiny puddle under the dock and says, timidly, “Well, would that work? I mean, it’s still sort of symbolic, right?”
Aaaagggghhhh! Thankfully, there is another lake around the corner, we’ll just have to walk a little ways to get there. By golly, she is THROWING that chemo in a lake, no matter what it takes --- plant and animal life be damned!!! I have had my mental image of this moment for the past twenty-six months --- and lake bed or no lake bed, MY DAUGHTER IS THROWING HER CHEMO IN THE LAKE!!! So, I hope all our local friends who are able to attend realize that not only is it a casual affair, but you might want to wear tennis shoes, especially if you want to take part in the “Victory March to the Lake” part of the party. :)

Anyway, on to more serious matters.

My online group, the one I am so thankful for and mention all the time, has gotten lots of bad news lately. In fact, I can’t remember a time in the two years that I’ve been a member that we’ve had so much all at once. Since most of these people are scattered all over the country, and the world, there really isn’t a lot I can do for them but offer up my hopes, prayers, best thoughts and warm wishes …. and encourage the rest of you to do the same.

Please visit one, some, or all of the following sites and leave a message in their guestbook. You might not think a note from a total stranger could make a person feel so buoyed, but I speak from personal experience when I tell you that it can.

New to our list, Bradley is a new diagnosis who is technically in remission but struggling a bit with his protocol, with suspicious cells still showing up. Since his family is new to Caringbridge, let’s take this opportunity to show them what a supportive community we can be.

Only a few short weeks from finishing her treatment, Hunter received the bad news that her last spinal (the same “Final Spinal” that we celebrated with Kendrie only a few weeks ago) showed some suspicious cells on the slide. They are waiting for a follow-up spinal to see if this is a fluke, or a relapse. Obviously, we are all praying for fluke, but this is a very stressful time for Hunter’s family. Please visit them so they know they are not alone during the wait.

In the same situation is Keegan, who is still awaiting word on whether his relapse is official or not. I can only assume the waiting is unbearable. Making it more difficult is the fact Keegan was hospitalized for pneumonia this past Thanksgiving weekend. I know his family still needs our support.

And yet another child also waiting to hear if he has indeed relapsed (I didn’t even know relapse could be a “maybe” situation until this past week …. And now we have several???) is Gabriel. Please visit Gabriel’s site and wish his family well during this difficult time.

A child who has already started her relapse protocol is Libby. I remember the grueling, exhausting days of induction, at the beginning of Kendrie’s treatment, and I know the relapse protocols are even more punishing and taxing on these poor kids’ little bodies. Please drop Libby and her family a note of encouragement.

I’ve written before about our online friend Cam. Cam has relapsed twice and received transplants from his brother both times. Frustratingly, his bone marrow is acting up again, and they have begun a new, experimental treatment. Cam is tolerating it well so far, but he and his family need prayers that this will be the final step on his road to a TOTAL recovery … enough is enough for this poor kid.

Recently relapsed is Alexia, who lives in South America. It is imperative that they get Alexia back in remission so she and her family can travel to the United States for a transplant. Unfortunately, she is currently suffering from typhilitis (sp?) and is in ICU on a ventilator, which means chemo is halted, which means she’s not getting closer to the remission she needs. I know Alexia could use all the good thoughts you could send her way.

Saddest of all is the news we received that Isabel passed away last week. I didn’t know Isabel’s family well through our list, but my heart breaks for them just the same, and I offer them my most sincere condolences.

The news that hit closest to home for us this week was the news that Catie’s scans came back with something questionable on them. Yes, this is the same Catie with whom we just celebrated finishing her treatment less than two weeks ago. This is her first set of scans post-treatment, and it’s about the most unfair news they could have received. Couldn’t they be given one stinking holiday season of normalcy before being hurled back into the pediatric cancer world? I’m really bitter about this one, and can’t let loose and say what I want to say here ……. But Jenny, Tre’ and Catie, you know we love you guys and are praying hourly for good news on the next set of scans.

And because I think it’s important to end this journal entry on an upbeat note, let me re-introduce you to Kevin. Kevin holds a special place in my heart, although I’m sure he has no idea (and let’s be honest, he’s a teenager, so he probably could care less, ha!) because the day I joined All-Kids was the day Kevin relapsed ….. three years after he finished his original treatment for leukemia. I had no idea what was going on, or what it meant. All I knew was the parents on my new support list were so upset! I admired this family even more when I discovered Kevin’s older brother Brian also won his battle against leukemia when he was young. I’m telling you, some of you might look at any of these Caringbridge families and think, “I just don’t know how you do it”. Well, I look at this family and think the same thing --- I don’t know them personally, but am awed by them just the same. Not because they got through it; hell, cancer parents everywhere will tell you that OF COURSE you get through it, what choice do you have? But Kevin’s mom Lisa has been a wonderful example of courage and spirit the entire two years that I have followed their journey. Believe me, they have had some serious scares throughout Kevin’s treatment, which makes this news even better: Kevin is now finished with his treatment! All my best wishes for a long, healthy life for both boys --- and HUGE congratulations!

I hope you all had a wonderful weekend and that none of you overdosed on turkey and dressing, like I practically did. While I’d like nothing more than to blame my obsessive need for naps this weekend on the L-tryptophan, I suspect the eight plates of food I had each day had more to do with it.

Take care!
Kristie
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QUOTE OF THE DAY: Said by Brayden, to me, in a parking lot today, “Hey, Mom, look at that old-timey car!” I turned around, fully expecting to see a Model-T, or an Edsel, or something. What did I actually see? A 1980 Volkswagen Bug. Yep, that was *her* idea of “old-timey”. Ouch, that hurt.