Archive for January, 2008


Adelaine and I hit the ground running, and something else this morning. First we had to drive to Largo to see the ENT about her ears. It seems that every time she is off antibiotics for about a week, her ears start draining again. After day 1 of being on the meds they clear right up. On Friday, we had an appointment with the Oncologist. She got her chemo through her port, began her steroids and started antibiotics for the third time for her ears. So, after our appointment, I took her upstairs to the ENT at All Children’s. Everyone was at lunch except for the Nurse Practitioner who seemed quite concerned over Adelaine’s situation. She insisted that we be seen right away which meant a drive over to Largo first thing this morning to their satellite office. She said things like bone infection in her ear and bla bla bla. All I heard was bone infection that was enough to get me on board!

We had planned on going to Clearwater to see Dr. Young about getting more “Buddy Yum” which is the Budwig Cocktail that we give Adelaine every day and is a powerhouse packet of nutrition. So I map quested our little journey bright and early this morning, we were going from home, to the ENT, to Dr. Young’s office, from there to the Pediatrician’s office. Can I share exactly how I feel about Map Quest? It’s only accurate about half the time. I couldn’t have done any worse if I’d followed the “if in doubt just turn right” theory! In fact that would have been a much better option this morning, but well get back to that in a minute…

After leaving the ENT, I was bombarded with Adelaine facing yet another procedure which will once again require her to be put to sleep. Really, you’d think by now I’d just be used to it. Maybe we should just hire her own private anesthesiologist. I wonder if he’d occasionally mind putting me out as well! Today would have been a great day for just that!

Anyway, Adelaine apparently doesn’t have a bone infection, her ear problem is caused by her coughing, caused by sinus drainage, caused by chemo, caused by Leukemia, caused by, well you get the picture. Only 8 more months to go and no more chemo, but I really don’t want Adelaine to spend the next 8 months needlessly suffering. One of her ears did quit draining, but only because that tube came out. So they want to replace the tube that fell out and replace the existing tube with a bigger one. Her chart also read that she had had her adenoids out last year when they put the tubes in. I honestly do not think they took them out, but maybe I’m wrong. I know Bowen had his out around the same time. It’s pretty sad with all the procedures I can’t keep it straight. If the adenoids are in they want them out! Also they want to snip a piece from her throat to test for reflux. Doug and I agree to veto that one. What really concerns me about the procedure is her inability to clot. Last year her tubes bled for well over a week when she got them. This was abnormal and scary. For the first two months, they’d scrape them to get the dry blood out which was very painful for her. In fact, today they had to dig and she had even more bleeding!

Finally we were on our way to our second appointment. I check out my trusty Map Quest directions, which doesn’t even accurately get me out of the driveway! I was really wishing I could just use a GPS. I was half way there, but thought I’d compare one more time, my thoughts on how to get there to the silly map. When all of the sudden.

BAM!

Oh yes, I slammed into the back of a Mercedes!

Guess who happened to be in front of the Mercedes?

A Sheriff, who heard the Big Boom!

I was stunned!

Then tears started to run down my face.

No one was hurt, just my feelings and likely the gentleman’s whose Mercedes had just been hit.

We pulled onto a cross road where the Sheriff could do his sheriff work.

I walked over to the man’s car and apologized profusely and asked if everyone was ok (which included three other passengers). I began to tell them how my daughter was in treatment for Leukemia and we had just left one doctor’s office and were headed to another. I was kind of lost and glancing down at the map for a second when it happened. They were all very nice about the whole thing. The driver was from England, and his wonderful accent reminded me of my college days spent there. Oh how I wished I was at Hyde Park about right then!

One of the passengers came over as I was getting Adelaine out of the car. he peeked in to see a rosy-cheeked pigtail wearing little beauty! I’m sure she wondered,”Where’s the sick one?”. Oh yes, I forgot to mention Adelaine’s hair is long enough for pig tails now! Can you believe it? This time last year she sported a crew cut! Anyway, I was thinking there is no way any of them are going to believe she is in treatment for Leukemia, so I passed out her card to everyone, just so there wouldn’t be any doubt!!!

They asked if I had figured out where I was going, then offered to give me directions and had me come over and to use their GPS!!!! Lesson here, be careful what you wish for, it might just come true!

Ok, so after a long visit with the Sheriff and the nice people that had the misfortune of getting in front of me, I made it to Dr. Young’s office. By the way, the Mercedes had some slight scratches on the bumper, but no dents. Pearl is ok too, and she’s proven that she has good taste!

Guess what? The GPS directions worked! We walked in and had a seat in the secretary’s office. She said, “I don’t know if we still have any Budwig Coctail left, I’ll have to check”. (This morning I called Dr. Young’s cell phone just to make sure he had the Budwig Coctail in stock). She came back and explained that there wasn’t any left, but they’d have more in on Wednesday. I felt the tears welling up. I told myself, don’t cry, don’t cry, but the tears came anyway. I explained that I wasn’t really crying because they we out of Budwig Coctail, but I was just having a really bad day. Some days the tears just come and I can’t control them. It’s so much pressure to know that cancer is lurking, lurking, lurking, waiting, hoping to attack your baby. Sometimes anything added to that is just too much to deal with, so for me the tears sometimes start to fall.

I wanted a cocktail of another sort, for myself! Seriously, I know better than to try to run from all this. The one thing about escaping your problems is that they are always there waiting for you when you return, and then they somehow seem worse than when you left. It is kind of nice to take off the cancer mom hat occasionally though. I just try to be really careful how I do it.

After the second doctor’s office, we headed to the third, no wrecks on the way to that one, thankfully! By the way, they did have the Budwig Coctail at Dr. Young’s office. It was just a test to see what I am made of, so far, no nervous breakdowns just an occasional major meltdown, but hey, we still have 8 more months to go, so we’ll see!!! Anyway I got the Cocktail, so I guess at least the wreck wasn’t all for nothing!

After all that it was time to pick up the boys from school. Today we had arranged for Max and Miles to come over for a play date, so an afternoon spent melted under a blanket simply wasn’t an option! Instead I took all the children to Subway. I had chocolate milk, sadly that was my little cocktail to make me feel all better! Honestly, I haven’t had anything sweet in almost two weeks now, and their chocolate milk is REALLY good, so I guess it will do until our Cancer Mom’s Night Out with all the gang! (When all the cancer moms get together and take thier cancer hats off at once, it gets pretty intense! I still haven’t fully recovered from Nichole’s bachelorette party, and I seriously doubt I ever will)! Let’s just say Adealine will be allowed to attend a bachlorette party when she’s say…. ahh… well…. NEVER!

At 6pm I dropped all the boys off at soccer practice and Adelaine, Daisy and I did a little shopping. All day I’ve thought about taking up boxing! I guess I’ve been inspired by the Wii. Wouldn’t it be fun to whip Tonya Harding! What a great sport to take up to relieve some pressure. I guess it would be fun until she through her first punch!!!!!!

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Well, I tried to update om Monday, but the server wasn’t working. Thank you Peter for fixing it, your awesome! Now that I’m not working (I finished a few days after Christmas), I plan to post more ofter. Anyway here’s my post…

Happy 2008! This year is going to be a great one for us all I pray! First things first, I told Doug I really needed to start screening his blogs!!!!!

Anyway, after a brisk 3 mile bike ride to and from school this morning, the boys have returned to school. The tree finally made it down, Adelaine is watching her usual morning “Noggin” network on TV, so I guess things are getting back to normal (whatever that is)! December went out with a bang! Fond memories will forever swirl in our heads as we reflect on the all the wonders Christmas had to offer!

As for Adelaine, her big treatment was delayed a week so it wouldn’t hit right during Christmas. It was time for her 3 month spinal injection of Methotrexate, Vinchristine push through her port, and five days of steroids. However, she was sick during the time her spinal injection was scheduled so her treatments were split a week apart. They gave her the Vinchristine and steroids although she had a massive double ear infection. Her ears were draining like a runny nose. Gross! Apparently with tubes, they did what they were meant to by letting them drain out. I kept having this bizarre thought about how nice it would be if she could just blow her ears!!! Oddly, she wasn’t even in any pain. I guess with all she’s gone through her she’s developed an extremely high pain tolerance. She started antibiotics and ear drops and was fine within a week.

“On clinical days when I get my treatments, we always bring Mommy’s makeup. It’s my very special way to pass the time. I really was having a great time until the nurses came in and ruined all the fun”!
jan-09-2009-1-adelaine-spinal-tap
“Besides the tears, don’t I look beautiful”?

“Do you want to know how I really feel about being put to sleep? Lets just say a picture is worth a thousand words!”…

jan-09-2009-2-adelaine-spinal-tap
“Ok, everybody count”
“ONE”


jan-09-2009-3-adelaine-spinal-tap
“TWO”


jan-09-2009-4-adelaine-spinal-tap
“THREE”


jan-09-2009-5-adelaine-spinal-tap
“OUT”!

There is something very unsettling about seeing my baby girl lying unconscious on an operating table. We’ve done it so many times now that I’ve lost count, but it never gets any easier. My two biggest fears are that they paralize her while putting the needle into her spine, or worse, she just never wakes up. The best feeling in the world is when they bring her back to me alive and kicking! Only three more of these procedures and she’ll be done! Praise God!

On a lighter side, an Adelaine story…
One of the most amazing events that occured over the break was at the Tampa Bay Lightning’s Christmas party, of course! Adelaine loved it, we all did! What an amazing hockey team we have here. How lucky were we to get Brad Richards! He does so much for the Children’s Cancer Center here, that we’d already spent a lot of time with him, so we already felt like we knew him. In fact, our children think of him as a big buddy more than they do a famous hockey player. When we say Brad last week after the game, I will never forget how Adelaine related to him…

At that time she was on about day five of steroids. What does that really mean? For children on cancer treatments they can have huge personality changes during a course of steroids. For Adelaine, one week a month she has PMS, not your usual PMS, but PMS on steroids. (What makes things even more interesting around here is when Adelaine and mom are both PMSing at the same time)! Normally Adelaine’s a loving, sweet, compassionate, compliant, little angel, but when steroids take over she begins to say things so filled with anger, its like little daggers coming out of her mouth. The boys have learned to tip toe around her during her time of the month, which I guess is a good lesson for when they grow up and get married!!!! She says things like, “You – Guys – Are – Making – Me –Miserable” and, “This – Is – The – Worst – Day – Of – My – Life”. She growls and grunts while she speaks and seems very passionate about the anger she feels. Sometimes I look through that blond hair to see if she’s sprouted any horns yet.

During the game last week her time of the month was at its worst. She fell asleep, which was great for us, but when she woke up it was time to leave. Did I mention that steroids can make you very hungry? One of the great things about staying in Brad’s suite is that he and Casey always have plenty of catered foods brought in. With chicken fingers, pizza, tacos, popcorn, cookies, drinks, the only way you could possibly leave hungry is if you somehow slept through it, which was the case for Adelaine. By the time we made it downstairs she started in about the chicken fingers. She had other things to eat but oh no, only the chicken fingers would do. For a long time she forgot about them but just before Brad came in she remembered again.

You’ve never really seen a child throw a fit until you see a child on steroids throw one. When we’re out people will say, “Hi” and Adelaine will just growl at them. It’s pretty embarrassing for me, so I just say, “You’ll have to excuse her, she’s on steroids”. Now that I think about it I’m sure people don’t have any idea what that really means, or why she’d be on steroids. Maybe I should get her a big button to wear on her shirt that reads, “I’m having major PMS, don’t talk to me or I may bite your head off!” That, I think we all could understand!

Luckily that day Adelaine wasn’t mustering up one of her biggest fits, but she was being pretty nasty and demanding just as Brad was coming in. She saw him and the evil eye she was giving us turned into eyes of delight. Her big buddy had arrived and she seemed glad to see him. After a short little reunion we all were having our picture taken together. She leaned over to Brad with her puppy dog eyes and said, “Brad, I really want some chicken fingers please”. For those kind words to exit her mouth was paramount. You have to remember meanness has been welling up in her for 5 days and she had been jonesing for chicken fingers for several hours by that time. For her to volunteer the word please with out being told just doesn’t happen on day five of steroids, it just doesn’t happen. She could have just as easily grabbed him by the shirt and shaken him back and forth and said things like, “Look at me, look at me, I’m having withdrawals man, if I don’t get chicken fingers now somebody’s going to get hurt”! Thankfully that didn’t happen. Doug and I patted ourselves on the back like, “Wow we really are doing a great job parenting”! And Adelaine did finally get her chicken fingers.

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