Archive for February, 2007


On Tuesday, Feb. 13th we went to the clinic for our weekly visit. This time for a finger stick (sticky pricky as Adelaine calls it), to check her blood counts. Again, her counts came back low, her ANC was at 700. The good news was that her blood tests from the week before came back (which was supposed to take a few weeks), it was normal. So apparently the 6MP is not reacting negatively to her body, so to speak. One of the doctors reviewed her chart and said that everything looked normal and there didn’t appear to be a problem. So why her counts are remaining on the low side still remains a mystery. Maybe her body is just tired from these seemingly never ending chemo treatments and from fighting off so many germs, which takes us to our most recent events…

Sandwiched in between two days of clinics and chemo, we were able to celebrate a very special Valentine’s Day, a Klondike Bar kind of day! The boys set off to school with all their Valentines and ready for their parties. Adelaine and I had to pass on attending any parties with them, so we spent the day at home. That morning we all exchanged gifts. In the spirit of loosing weight and being healthy, I banned chocolate from the list of appropriate gifts. In fact, during those moments of insanity I recall saying to Doug something like, “If you give me anything chocolate for Valentine’s Day, I’ll be mad at you”. Then the day before, I said, “Too bad I made that rule about the chocolate, a little chocolate sounds good about now”. Poor guy, he doesn’t stand a chance figuring me out!!! Just to be safe, I did go out and buy a tiny box of chocolates for myself. Honest, it only had four pieces in it!

So, we all exchanged our Valentine’s gifts. The children got their toys. Doug got a watch and I got… chocolate and candy and a Bucks jersey, and…
a baby sitter. Yep, Doug arranged all on his own for Ashley to come over so we could go out on a romantic dinner date. He even called and made reservations ahead of time! The chocolate was a little risky, but he pulled Valentines Day off like a real charmer. Way to go Doug!!! What a nice and much needed break, especially considering what was to follow.

Oh, but before we go there, I have to mention two things about our special V day. One was that a really nice mom and her daughter made us dinner that night. Wow, how nice was that to make dinner for us on Valentines Day. Also, when the children were eating dinner, Mason started complaining of a loose tooth. The first tooth he lost he swallowed while eating Cheeze Its. This time he and Ashley pulled the second one while we were out on our date. So, what does a mom have to do to be in on the tooth action. I was there loving him, cheering him on helping him through the pain while they came in, I would really like to be there when they come out, at least once!

Ok, anyway, back to reality..
Last night Adelaine was up most of the night saying that her ear was hurting. By 2:30 this afternoon she had a high fever (103.8 to be exact) and to put it nicely, food was revisiting us for the second time around! We made a mad dash down to the clinic and about 3 ½ hours later we had a room at All Children’s Hospital. Her ANC is now at 600, which is only 100 points from being just plain terrible. Because of the fever we will be here for a mandatory 72 hours. Hopefully after a night of fluids and high power antibiotics she will feel better tomorrow and we can enjoy playing with all her goodies that stay packed away just for these “special occasions”!

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An amazing Twist!

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Ok, so we get home from our upsetting clinic visit on Tuesday. Literally I had to put down the box of tissue to answer the phone, it was Anissa with BIG NEWS! The Children’s Cancer Center called her with enough luxury box seat tickets for our families to see the Tampa Bay Lightning Hockey Team which included a buffet and a meet and greet after party with the players, all compliments of the Children’s Cancer Center and the Brad Richards’ Foundation! So 3 hours later there we were having dinner and watching the Lightning play the LA Kings! The seats were in Brad Richards’ (#19) box, commonly known as Richy’s Rascals! Brad Richards is such an awesome guy. He does so much to show support to children with life threatening illnesses. Thanks and way to go Brad!

According to Doug, when I gave this review I apparently down played the evening’s events quite a bit. To get the full scoop and the “real” story visit Doug’s new post entitled, “Richies Rascals”. You may be interested in knowing that Doug even took the time to send Brad an email. I asked Doug if he thought Brad was really going to read it. Doug’s reply was, “I don’t know but if he does he’s going to think I’m a really big dork, you should read what all I wrote!” Don’t tell Doug, but if I can get my hands on it I’ll post it, maybe we can all take a poll or something!!!!

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Doug’s take……

Alright, I guess I need to step up and do the Richy’s Rascals posting, espcially sindce I had the best time. Angela does a great job at the other posts and at the end of the game she proclaimed that the game was very exciting, but I think this one needs to be charged up (with a Lightning Bolt perhaps?!?).

Not only did we get to sit in Brad Richards Luxury Box and have dinner provided in the suite, but we had a couple of representatives from the Lightning making certain everything was first class. I guess they probably do some coddling for everyone in all the suites, but even this jeans and t-shirt guy recognizes the above and beyond. We had 2 nice ladies that spent the entire game making certain everyone had everything they wanted. The kids all got Lightning T-Shirts with Richy’s Rascals and the # 19 on the back. There were 4 other families represented in the box, including our good friends the Mayhew’s. There was even a guy dressed in a tuxedo get-up, minus the jacket, that waited on us.

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Ok, maybe these weren’t the official hostess’, but we didn’t get their pictures.

The Suite is beautiful. There is a separate entrance to the Forum for suite owners and their guests across the street from the VIP parking lot, which was also provided to us. When Brad Richards signed his most recent 5 year contract this off season, he also signed on to funding this suite for the next 5 years. I know what Suites cost for other sporting events and I know this can be a great tax write off to offset his much deserved big money contract. I also know that the tax write off is secondary to Brad, and I will get to that later. Brad had a group customize the suite and they did a fantastic job. There is a red light on the ceiling that the kids get to light up when the lightning score (yes we did light it especially long when Brad scored in the shootout). There is a big flat screen on the wall that is hooked up to a Play Station 2 with bean bag chairs for the kids to sit in and play. Instead of regular cabinet pulls, the cherry cabinets have Lightning Game Pucks for the pulls. The bathroom has been painted to look like the locker room with Brad, #26 Martin St. Louis , and #4 Vinny Lecavalier jerseys painted on the wall, as well as a few others. During the game we didn’t have to (or want to) leave the suite for anything. When dealing with a child with a compromised immune system due to chemotherapy, especially during flu and cold season, that is extremely important.

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OK maybe we took this picture when we were in Brad’s suite for the Wiggle’s and that was around Halloween. I think the Puck Pulls are cool!

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Brad scoring in the shootout! Look closely, you can see the puck in the back of the net!

After the game our hostess took us down to meet Brad! We went to this “stinky” elevator (they take all the trash through this area and she said it may smell so the kids called it the “stinky” elevator.) She said “My goodness, there are a lot of people down here tonight.” There were about 20 people waiting, that is not much to me, but whatever. We were moved up to the front with the other family from Brad’s suite that made it through the game, the overtime and the shootout. In fact we were directly across from the locker room! The players from the Kings all walked passed us to leave and we were the first to see any player come out of the Lightning locker room. First our hostess stopped #7 Luke Richardson to sign the kids shirts and get a picture. Then we had #74 Nick Tarnasky and #49 Blair Jones do the same. This was a special night for Blair, he scored his first goal in the NHL! He signed a game puck for us! One of my other hero’s #36 Andre Roy (pronounced Waugh) was greeted by his wife and baby girl. Roy made the game extra special for me by getting in a fight. Roy’s face was kind of puffy and I thought he might knock me out, so I didn’t bother him. Vinny Lecavalier came out and he had a big group for his charity Vinnys ICE PACK waiting on him, so I didn’t bother him either. (Vinny scored in the game and in the shooout. He leads the NHL in goals scored this season.

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Nick Tarnasky with Bowen, Mason and Adelaine. Look at Adelaine, she looks like she is about to kiss him!

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We were the first people to greet Blair Jones out of the locker room after his first NHL goal! (The door behind him is the door to the locker room.)

Then came Brad. He was dressed in a blue Under Armor t-shirt and shorts. He came right to the kids and said hi. He greeted the other family a man and his daughter who looked to be about 12. They lost a daughter/sister in July to a brain tumor and are regulars in the suite. The girl has autographs from Brad on all kinds of things all over her room. That night she had Brad sign her iPod. He knew her by first name and talked to her for a while. Then he came and signed all the kids shirts and a couple of hockey pucks. He asked Adelaine how she was doing and she stated her usual “fine”. He was focused on her and made her the center of attention. Doesn’t he know that he is one of the best players in the NHL? Isn’t he, as a highly compensated super star professional athlete, supposed to either ignore the kids or just sign as he looks away. No, after getting knocked around in an NHL game, he squatted down for several minutes talking to the kids on their eye level! He looked them in there eyes and listened to everything they said. He then took several pictures with them and made certain the hostess had a camera for his Richy’s Rascals collection of pictures. We then had a family picture with Brad. Right now he has short normal hair and is clean shaven. When they make it to the playoffs all that will change. It is tradition to not shave during the playoffs, in fact it is bad luck to shave while you are still in the playoffs. According to one of the hostess’, no one in the entire organization is supposed to shave during the playoffs. He is a really good lookin guy clean shaven. I’m sorry Brad, but Angela says you look much better clean shaven, but its worth it for another Cup win. I shook Brad’s hand and thank him expressing that he has no idea what this means to us. All the while he sincerely looked me in the eye and just smiled. He probably said something, but I was oblivious. Just look at the family picture, the last time I had a picture taken with that goofy smile was at our wedding!

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Brad Richards and the Powell Family. I didn’t know my dimples were that big!

Brad then walked over to a group of Jr. hockey players and started joking with them and signing autographs. Our hostess asked if there was anyone else we wanted to meet and I just stood there in awe. She walked away with the other family and I snapped back to reality. “Yeah, could we meet Marty?” She tapped Brad on the shoulder and he went into another side room. She came over and told us Brad was getting him. Sure enough, there was Martin St. Louis (fourth in goals scored in the NHL at this point in the season)walking up squatting down and signing the kids shirts and talking to them. He took a few pictures with the kids and then suggested a family photo. Well if you insist! I guess we can take a picture with the plyer that scored the 3rd goal in the shootout to lock up the win that night. He put his arm around me and I thought where do I put my arm? On his shoulder around his waist do I hug him and kiss him on the check? Then the hostess started taking pictures. I was so confused about where to put my arm, that I didn’t have a chance to make my teeth pop out of my head. I shook his hand and thanked him. He looked me right in the eye and said something and I just nodded. Yes, I was awe struck by the whole experience and all I heard was Charlie Brown’s teacher talking to me. Waugh, waugh waugh waugh. For all I know, he wanted to donate a large portion of his earnings to the newest Ultimate Lightning Fan!

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This is Marty St Louis signing Adelaines shirt. She thought that they were all writing HER name on the shirt.

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Martin St. Louis and the Powell Family.

These guys were all real. No bad attitudes, genuine sincerity. Along with Richys Rascals , Brad volunteers time for local kids and hosts a Golf Tourney in his hometown to benefit the children in the Prince Edward Island local area. Brad won the MVP trophy for the Stanley Cup in 2004 when the Lightning won the Stanley Cup Championship. That year Brad also won the Lady Byng Memorial Trophy . To some this is the ironic trophy to win in the NHL. The trophy is awarded to the most sportsmanlike player in the league. Most people look at hockey and first think of the fighting and penalty box. In 2004 Brad played in 82 games and was assessed only 12 penalty minutes. The shortest amount of time spent in the penalty box is 2 minutes. At most, Brad had 6 penalties called against him in 2004! After, meeting Brad and researching him, I would say this is the manliest award. He plays an extremely rough game, is voted as the MVP and the most sportsmanlike in the same year and spends a huge chunk of his earnings on kids and their families that he has never met before. Thanks again Brad! If you ever need a personal “Goon” and Andre Roy or Nick Tarnasky are not around, send me an email.

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Alright, I guess I need to step up and do the Richy’s Rascals posting, espcially sindce I had the best time. Angela does a great job at the other posts and at the end of the game she proclaimed that the game was very exciting, but I think this one needs to be charged up (with a Lightning Bolt perhaps?!?).

Not only did we get to sit in Brad Richards Luxury Box and have dinner provided in the suite, but we had a couple of representatives from the Lightning making certain everything was first class. I guess they probably do some coddling for everyone in all the suites, but even this jeans and t-shirt guy recognizes the above and beyond. We had 2 nice ladies that spent the entire game making certain everyone had everything they wanted. The kids all got Lightning T-Shirts with Richy’s Rascals and the # 19 on the back. There were 4 other families represented in the box, including our good friends the Mayhew’s. There was even a guy dressed in a tuxedo get-up, minus the jacket, that waited on us.

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Ok, maybe these weren’t the official hostess’, but we didn’t get their pictures.

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Adelaine at the beginnng of her blood infusion!


Adelaine at the end of her blood infusion!

Ok, so it was our third visit in a row that didn’t go very smoothly, here’s how it went…

We started out about 10, ok 15 minutes late! Parking is a bear and I refuse to park a half a mile away, so we drive around until we score up close, finally we did! We rushed right up to the door and were about to go in when this little heavenly voice told me, “You forgot to pray”! It was Adelaine’s little voice and those prayers are what give her the courage to go through the door. So we stopped and held hands and prayed for her, the doctors to have wisdom about her treatments, for her to never have cancer again, and what ever else came to mind, then we entered.

Her port was accessed, blood was drawn, a little more than usual, because they are going to run tests to determine if the 6MP is to strong for her little body. They couldn’t use the blood they took on Tuesday, so the count down for the results didn’t start until Thursday. Unfortunately the test takes a few weeks to get any results so we must press on with all scheduled meds for now. So, to recap, she takes the 6MP Monday – Saturday, Methotrexate on Tuesdays, (which is why she goes to the clinic every Tuesday, to make sure her blood levels can handle this additional chemo), Septra (antibodics) on the weekends.

On Tuesday we added our monthly dose of Dex (steroid, which she takes for the next five days), so now she’s not sleeping at night again and has a terrible case of “Hot Mouth”! We have determined that the Dex is the culprit for “Hot mouth” and emergency thirst, which can only be cured by juice. In two weeks all three children have dentist appointments. I’m really hoping that Adelaine’s teeth aren’t full of cavities from drinking juice all these nights during treatment!

Now back to our visit…
Last time they said they would probable need to give her a blood infusion. Although her ANC levels were up, her red blood cell count were down. So, after drawing blood they came in with this… “We can go either way. She is still at 8.0. We tested it again and it came back at 8.1. It’s entirely up to you. It could go back up on its own or she may get worse and would have to come in over the weekend and get blood at All Children’s.”

This was entirely upsetting because, first of all, putting someone else’s blood into my child is a little unsettling, secondly, Adelaine needing blood in the first place signifies that she is not doing well, and lastly, making the call has been left entirely up to me! How can I possible know what the right thing to do would be?

Next I got on my cell and called Doug and our good friend Barb. We prayed over Adelaine and peace over this decision. Our prayers were that God would amazingly lift her counts and stun all the doctors and nurses. We prayed so hard that God would completely restore her blood. When the nurse came back in, I asked her if she could pull her blood one last time and test it. If her levels were at 8.0 we would do the infusion, if higher we would pass!

I wish I could say that God answered our prayers per our request. An amazing thing did happen while we were praying, though. I got peace about Adelaine getting more blood. The nurse came back and said, “Well this will make it easy for you, her levels were at 7.7 this time, I’ve already ordered the blood.” In a way God did answer our prayers. He gave me peace and showed us that without a doubt Adelaine did need more blood!

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I’ m really missing the days when as we leave the clinic, and they tell us that everything looks great and seems to be right on track. These last two visits at the clinic have not gone quite as such…

Last week Adelaine’s counts had not gone back up as they should have. The nurse questioned me pretty heavily as to rather of not we had been giving Adelaine her chemo. So, not only was I extremely concerned over Adelaine’s health, but had the extra stress of defending myself over her medication. By the way we would never not give Adelaine her medicine, we take fighting the cancer monster VERY SERIOUSLY.

This week her ANC counts did go back up, but her red blood cell counts are too low. Adelaine left the office with a blood bracelet with the anticipation of getting an infusion on Thursday 2/8, after they check her again. There are different reasons this may be happening and they are doing some blood work to further investigate. One may be that her genetics are causing her to react more sensitively than most to the 6MP (chemo), which she is now taking daily. Another is that she may have Parvo which sounds pretty freaky to me. I thought that was something only canines get! They also mentioned a few other reasons and of course they threw out the term relapse, but said it wasn’t very likely.

Somehow I managed to pull it together and continued the conversation. I expressed how odd I thought it was that she did so well through all the other phases and now that we are in maintenance she is having such a difficult time. The only blood infusion she had since her original diagnosis was when she got the “Red Devil” and almost everyone needs blood with that one. So why now when we should be cruising along are we having such issues? No one has any real answers yet. My suggestion was to just take her in and aspirate more bone marrow and look for leukemia. It seems to me that if you want the answer, you should just ask the question, and if we pull the bone marrow we could rule out the biggest fear, right? They didn’t feel that it was necessary to take that measure, so they are going to run tests and watch her for now. The risks of the procedure and putting her to sleep don’t outweigh the cause for concern. They will, however, pull more bone marrow in March when they do another spinal injection.

For now I’m going to just focus on that picture of Jesus holding Adelaine, and on July 2nd when we and the elders of our church laid hands and prayed for her while she was in my lap. I felt God’s presents and I know He touched her, I know He did! (That day happened to be mine and Doug’s 7th wedding anniversary). It was truly an unforgettable anniversary; not just for obvious reasons, but because of how powerful God’s presence was in that hospital room that evening. Adelaine just sat there in my lap and with such contentment as we prayed and prayed for her. It was like she was absorbing God’s healing touch into her body. As I held her I could feel the power. It’s so difficult to explain. I remember taking deep breaths. It was like with every breath I took I was breathing in God’s healing, God’s peace, and God’s love, all that was good. It seemed to have radiated through Adelaine and onto me. It was a very intimate encounter with God. If I had to pick a single moment of my life that I could relive over and over, it would be those moments in prayers that evening. In spite of the circumstances that were surrounding us, God’s absolute presence made those threats completely void! This is a letter from one of the elder’s wives who was present that day in the hospital when we all prayed.
July 30th, 2007
Angela-

I’d like to share something special with you. At first I wasn’t sure rather it was meant to be shared or not. I’m still learning about how to react to the things God shows me, but I think this is something for you to know.

Nearly a month ago Adelaine was diagnosed. The Sunday that the elders came to visit/ pray with you, I felt like God wanted to work, but I had no clue how. Part of me was afraid to ask for a complete, immediate healing because I didn’t want to be turned down. I believe God could heal that way; I just wasn’t convinced it would happen. Also, my brother was visiting that weekend, and he shared many doubtful and skeptical thoughts about miracles. (I share this to let you know where I was coming from when we prayed that night in the hospital room.)

Something definitely occurred as we prayed, though. The Holy Spirit filled the room in such a special way. As we prayed about the upcoming spinal tap test, I saw something in my mind’s eye. It’s hard to explain, but it was like I saw Adelaine’s spinal cord and it lit up from top to bottom. It was as if some brightly glowing Drain-O sort of thing shot both down and outward and flowed through her spinal cord and out toward her extremities. I wondered if I had seen God cleanse her little body and heal her. It was beautiful.

At the time, I had no idea what to do with what I saw. I kept quiet because I didn’t want to get anyone’s hopes up that she was healed only to find out later that I was wrong. I apologize if I was supposed to share this vision immediately. I hope that my silence did not keep you from a message of hope that perhaps the Lord wanted delivered to you at that specific time.

Love,
Kelli

* As a footnote: Six days later, on July 8th, the doctors pulled more bone marrow. There was no cancer found and she was in complete remission.

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