Archive for May, 2006

Happy Birthday Beautiful Girl

Monday, May 29th, 2006

HAPPY BIRTHDAY TO OUR SPUNKY, BRAVE, WONDERFUL, FUNNY, FEISTY, SMART, BEAUTIFUL, AND FIERCEST LITTLE CANCER WARRIOR THERE EVER WAS!!! Boey’s b-day was May 20th and she had an amazing time thanks to JACK BURRIGHT AND HIS ENTIRE STAFF:)!! Jack took Boey under his wings in late January wanting to help and do whatever he could to ensure Boey had a VERY special BDAY. He went out of his way to bring in a bouncy structure, OSU cheerleaders, bought her an OSU cheerleading outfit, huge barbecue, raffle tickets, games, and so much more!! HUGE thanks to Diana R.,Tonya, and staff for all your HARD HARD WORK!! The look on Boey’s face was priceless and worth a thousand words!! Thankyou to everybody who showed up for the run, it was so awesome to see you there!! Thankyou to grandpa Mike for not only runnig that race(we were so impressed gramps!), but working his buns off to help with the party, finding creative ways to help with donations, and just being grandpa!! Thankyou Becky from REMAX..appreciate you SO much, huge thanks for all you’ve done for us!! Boey still talks about her birthday and how much fun she had!! YES!! She finally got to just be herself, hang out with her friends, surrounded by so much LOVE and didnt’ have to worry for one day about being poked, chemo, radiation, etc..you get my point! THANKYOU MR.BURRIGHT, you truly are a man of integrity and you have an awesome heart!! Unfortunately in politics there is always the other side that wants to take you down in some way. Well, his opponent decided that right before my daughter’s fund run was a good time. I thought how cruel can somebody be? BUT JACK AND HIS STAFF PREVAILED…Jack is a man of his word, even through such a difficult time for him and his family, he focused on making my daughter as happy as he could!! Boy did he succeed!! Thankyou so much Jack, family, and staff..you have already won this election in all of our hearts!!! Pics of Boey’s party and her in the OSU cheerleading outfit..coming soon, PROMISE!!!

Boey had so many special people there. Her grampsy wampsy(boey’s cute nickname for him)and grandma Lynnie brought up so many special people:). There was a very special singer there, Lenea Patterson(check out her site under Boey’s links..she has the voice of an angel) who sang with Boey at her party. Boey just sat there in awe, she LOVES LENEA SO MUCH!! They have a very special girlfriend bond..it’s so sweet. Let’s not forget all the hard work(and nasty gas prices)that Sal and his wife donated. They brought up all the sound equipment for Lenea in a HUGE truck all the way from GrandParents Pass..a.k.a Grants Pass(kids renamed the city,haha)and worked all the awesome sound equipment for Boeys’ bday..AWESOME MUSIC!! HUGE THANKYOU TO Lenea’s parents Jay and Bonnie…the coolest people in the world( right next to you wampsy don’t worry)!!! A shout out to Robert, Lenea’s boyfriend…we all had SO much fun(ummm, think lynnie, shae and I had a little to much fun..HAHA) with you guys at Pizza King…you guys wrapped the night up perfectly by coming to karaoke!! Boey wanted to sing karoake with Lenea in the worst way..so THANKYOU GUYS, we knew how tired you were..you ROCK!!!

Thankyou for all the wonderful birthday presents everybody. Thankyou Annie for the beautiful wig. She loves feeling like the beautiful little girl that she is. BALD IS BEAUTIFUL, but she really MISSES her hair, thankyou for such a wonderful gift!! Boey received a very special DVD player for the long trips in the car(3 hours a day)from her very special great grandma and wampsy!!THANKYOU GUYS!! She loves watching her Chris Daughtry concert video, and all her other fav videos!! Thankyou Patty and Steve for your generous hearts and all the people who gave at your estate sales!

Thankyou Jack for not only the special day, but helping us financially with the fundrun. We are so grateful. I try to ignore(not the smartest move, but a human being can only do so much) the finances as much as possible because it’s to overwhelming, I keep the focus everyday on making sure Boey girl wins this fight. So thankyou for the financial help with the fund run. We could rest at ease knowing that a mortgage payment was made and we had much NEEDED gas money for our daily drives to Portland.

Not only did she have the MOST AMAZING Party, but she also HAD HER VERY SPECIAL BALD HERO CHRIS DAUGHTRY FROM AMERICAN IDOL CALL HER TO WISH HER A HAPPY BIRTHDAY!!! She told him that talking to him was THE BEST BDAY present EVER!! To say she was beaming would be an understatement! Thankyou again Chris for lighting up the room with your awesome heart and calling her!! Thankyou for signing her guestbook(pg.87 #432)..she was in Daughtry heaven!! Even if the ex-presidents couldn’t get you back on Idol Chris(thanks to ELLEN for trying..haha), WE KNOW IN OUR HEARTS WHO THE REAL WINNER IS!!!!

We are so blessed to live amongst such amazing people. Boey was already the most secure, loved, and confident little girl in the world. Now she is going to be that much stronger, secure, and live every day with absolutely NO FEAR and conquer ANYTHING her little heart desires!! She is going to win in so MANY beautiful ways because of this whole cancer crisis. I feel sorry for anyone that gets in her way!!! WE LOVE YOU BOEY!!! Keep kickin this loser to the curb and showing it WHO IS BOSS!!!

Daughtry Dance..tons of pics..radiation video, all coming soon!! Please keep checkin in..I promise we are working towards all this amongst our crazy lives!! It will happen!!

“This Tumor Really Did Mess With The Wrong Boey”

Tuesday, May 16th, 2006

Boey’s love for God, determination, strength, courage, feistyness, spunkyness, intelligence, and goofiness are all HUGE reasons why she is going to win this nasty war on cancer.It all began way back one night in January of this year. I was snuggling with my Boey at bedtime, and she started crying saying it felt like glass was poking through her nose. I remember thinking how strange that was, and kept trying to figure out what it could be.She did this for three nights in row, even saying it hurt during school. I remember thinking how am I going to get a doctor to do the tests I want so I can be at ease..the symptoms were so strange. This was Boey’s first real symptom of the sneaky evil tumor(boey now says “the tumor got all comfortable inside my head, and then it made a fatal mistake.” We learned a couple weeks later that the pain she felt was the tumor eroding through her sphenoid bone, which in the end was why it ended up being revealed). This is just one of many examples of why the tumor messed with the wrong Boey.

Well, Boey had it right, the tumor did make a fatal mistake, and two weeks later, she felt a bean in her nose and instinctively sniffed it back and it ended up in her throat. She kept saying all night” I have a bean in my throat mom”. I told her to drink some water(thankGod she didn’t listen to me this time), maybe it would help. Two minutes later, we hear from the bathroom”Guys I have a problem in here”! We ran in the bathroom and found a bigger than bean sized(she was right, it was shaped just like a bean)piece of flesh in the sink. It even looked evil. Boey at that very moment was smart enough to not swallow the piece of tumor(she tells me to this day something just told her to not swallow it)plug up the sink so it wouldn’t go down the drain, and call us in there right away(she was determined to outsmart the cancer, and she did). I grabbed the piece of flesh and instinct told me to put it in a bag and get to the ER NOW. It all started way back then, Boey was showing the cancer WHO WAS BOSS. The doctor’s to this day are still amazed at her story. They told us cancer is not revealed like this, and they had not seen anything like this in 20 years. Leave it to our little warrior.
The morning after her first surgery to remove some of the tumor, Boey floored Rob and I when she started skipping and smiling down the hospital hallway. She was full of energy, smiles, and a love for life that touched us so deeply because of everything she had been through the night before. Rob and I watched in amazement(we were spiraling into major sadness and depression), and decided at that very moment we were going to honor our daughter with the same attitude. We realized once again, Boey was showing the cancer who was in charge, and that NOTHING was going to get in her way of enjoying her life, not even evil old cancer. We decided to follow her lead, and to make the best of every day of our lives, to give our kids extra long hugs, and to not let a day go by without telling them just how much we love them. Let’s not forget the humor, we couldn’t survive without that!!!
To all of you who keep updated on our posts, you realize the heartache my daughter has to endure. Lately, the vincristine has caused peripheal neuropathy in her fingers and ankles. Her fingers are contracted inwards, and she can’t walk very well without falling. A couple days ago, Rob and I were watching her trying to work on her school stuff. We couldn’t believe what we saw. With her little hands contracted inwards, she was working on trying to paperclip some school stuff together. We noticed that she kept trying to paperclip it and never stopped trying(even we were frustrated for her), but she never once complained or got upset. Finally after 10 minutes of using the sides and tops of her hands, she got the paperclip on! Rob and I had tears of joy streaming down our face, smiled at eachother and said “this is why she will win”. With all her determination, strength, courage, perserverance, tenacity, feistyness, life loving spirit, heart of gold, and NOTHING will get in MY WAY attitude, this tumor really did mess with the wrong Boey.
Through this journey with our beautiful warrior, we have lived through many moments similar to the ones I described above. She never ceases to amaze us with her strength and determination to FIGHT!I really wanted to share some of them with you so you could get a sense of how she is dealing with all of her painful and difficult treatments. She is my little cancer butt kickin warrior, my HERO. At bedtime, I hold her close, look her in the eyes, and tell her what a honor it is that God blessed and entrusted me with his precious Boey. I thankGod everyday that I get to be Boey’s special mommy. I LOVE you sweet girl, you are the love of my life.

We Survived This Week…barely

Sunday, May 14th, 2006

WARNING: Long post..only read if you have time:)!
This last week may have been the scariest yet, but she kicked butt and is stronger than ever:)!! Go BOEY!!!!

Our nightmare began last Sunday. Boey had her best friend Helena over, and they were having a blast. I went to check on Boey, and she was lying on the couch, white as a ghost. I immediately took her temp, and it had spiked above the critical point(they say 101.5 is when to take her to the ER, she was 102.5). We tried so hard to stay calm, and strong for Boey. We were out the door within seconds to the ER. As you know from reading my posts, this was our second visit to the ER. It was worse than the first one. We went to a different ER, hoping we’d have a better experience, but it was a true nightmare.

The nurse came in and I looked her right in the eyes and said “have you accessed ports before, and where is your I.V team”? She said “yes, I am the I.V team”. You have to understand our history with the hospitals around here to understand my fear. They said three months ago before her diagnosis that my daughter was fine when she was coughing up tissue and blood for three straight days in a row. I said “NO,she’s NOT, TEST THIS TISSUE NOW”. If I didn’t push back then, she wouldn’t be here now(this is what the docs at Doernbecher’s have told me). Okay, now that you have some history of why I’m so untrusting and massively protective, on with the rest of our story. The nurse continued to push and squeeze on her port, like she didn’t know what she was doing. She then brought in the wrong size port needle. I said”that’s the wrong size, thought you were the I.V team, what are you doing”? She said”what size does she use”? You can already see where this is going. Here I am, Boey has a life threatening fever and I’m up against what looks like incompetence. I don’t have a choice(we are an hour from Portland), but to trust this person, time is critical. The nurse proceeds with accessing her port, all the while Boey is yelling “you’re hurting me, mom she’s pushing on it, this isn’t right,the other nurses in Portland don’t do this mom”! I asked the nurse to please telll me if she wasn’t trained enough, we could find another nurse. She said it was fine. As soon as she put the needle in, Boey screamed bloody murder. It was sick. She missed my baby’s port, and Boey was bleeding. I told her”get out of this room NOW, and don’t come back”. Dad and I were comforting Boey…time was ticking away.
I ran out of the room, frantically calling “the good nurses in Portland(as Boey puts it), and told them the situation, they tried to calm me down, and emphasize how important the antibiotics are, that we needed to get them in NOW. I ran outside and that’s where I found my angel nurse. She was on a break, and instinctively I ran up to her and asked her if she had experience with ports. She said yes, why? I asked her to please come take care of my baby girl. She took wonderful care of our daughter(thankyou, you know who you are, we are so grateful:), and Boey got her anitbiotics. That was the most fear I’ve ever experienced, mainly because I couldn’t get anyone to come into her room and help us. I felt so vulnerable, and so scared for our Boey. Rob has thanked me all week for hunting down that nurse, and being aggressive with the staff for the safety of our daughter. Nothing is more important than our Boey girl.
We finally got to Portland and never more happy to see the staff there. I was hugging the nurses, it felt so good to have Boey safe. They drew her blood, and counts came back at 100(normal is 12,000 - 18,000). We were devastated, this was all so new to us. She has never been this low. The staff explained to us that 7-10 days after her big chemo, that’s when her counts plummet. We were right at her 7th day. Her body was worn down, and couldn’t fight anything off. They did a blood culture test also to see if there was any bacteria in her blood(this is all protocol with a high fever).
She had a high fever all the way until Thursday morning, and it finally went down. She was on full antibiotics every 8 hours from Sunday on. During the week she endured numerous blood draws, flushing(she HATES the saline flush with a PASSION, even begs the nurses not to use so much of it..poor boey), she received her very first blood transfusion on Wednesday(it was very successful, thankGod. She went from 7.0 to 10.9), shots every night to increase her white blood cell count,and radiation everyday on top of feeling terrible. After her blood transfusion, she perked up and pronounced to the room”okay, I feel hyper, this is fun”. We knew at that point things were looking up. Her counts took forever to come up, but by Thursday they were 6,600. GO BOEY GIRL!! Nothing will keep our Boey down, she is kickin cancer bootie all over the place!
Thankyou to my dad, Lynnie and there friends(hi bonnie and Jay), Lenea, you have a heart of GOLD. Thankyou guys for putting together the fundraiser in June. Lenea, you and your voice are SO beautiful, can’t wait to hear you sing Saturday for Boey! She is SO excited!!! She wants to get up on that stage with YOU!!! It’ll be fun:)!
Thankyou to both of Boey’s grandma’s for helping and giving of yourselves during this last week. This has been rough on everyone, and we appreciate all that you have done. Boey is blessed to have such wonderful relatives and friends that love her like crazy.
We had a blast watching American Idol Tuesday night. Boey came alive when Chris came on. She wanted to do the Daughtry Dance in the worst way, but her body was to weak. She was beaming from the hospital bed as she watched her bald hero perform:)!! She said”Chris makes Elvis look sooo cool guys, and I think Chris sings better than him too”. Everyone in the room was laughing so hard. Boey had her fav nurses there watching with her(pics of one of her fav nurses coming soon). Then came Wednesday night. I’m SO glad I checked the AI boards to see who was voted off before Boey watched it. I was absolutely devastated, it was her bald hero. It took a long time for me to believe it, thought I was being punkd by someone. Unfortunately it was all to true. I tried to warm her up. I kept saying things like “boey, wouldn’t it be cool if Chris was voted off so he could make a CD even SOONER”? Nothing gets past her, duh. She’s like”mom, my idol is being voted off huh”? So I explained what happened, and all it meant was he could be free to make more music for her to listen to that much sooner. She took it hard, but she had her Daughtry pillowcase to kiss(she wants to make sure I tell you guys that it was his bald head she kissed when I caught her)…I have pics of that one..snuck them in..haha, so cute. Chris Daughtry is an awesome human being, not only for his musical gift,voice, and wonderful hair style, but he has a heart of pure GOLD. Boey got a chance to talk to her hero on the phone,and she has been floating on the Daughtry cloud ever since.
Everything Chris is going through right now and he takes the time to call our baby girl because he cares, and is praying for her too. He is a true American Idol. He lifted her spirits, she felt supported and cared about by her fav bald idol, she is all smiles..she’s beaming. I hope her happiness over talking to him fried billions of evil cancer cells:). This cancer doesn’t stand a chance.
It’s been a little depressing with the ending of AI and Chris. It was our family time together, the one show that Boey danced to(the daughtry dance)when Chris came on, and was a wonderful distraction from the reality we have to face everyday. Chris made Boey so happy. We are very blessed. Chris fans have been wonderful. All our friends on the AI boards, you guys were incredible in your support of Boey on Sunday and beginning a prayer chain on the boards, wow. So awesome. The fans have made her a CD of all his songs on AI..it’s like seeing him in concert(thanks Jenn)! All the Daughtry items sent by Daughtry Gang and Jennsen(you guys are amazing). The AE and Daughtry Gang site are awesome, thankyou guys for all your support! I honestly couldn’t imagine going through this time without you.
PLEASE keep the prayers coming strong, God is answering. She is full of Boeytude, (we love seeing this right now), spunkiness, zest for life, and determination to keep on fighting. We have to take it one day at a time. At this very moment, she is in good health. Her little body has to endure 4 more weeks of radiation(everyday except weekends), and every three weeks of the BIG chemo..ughhh. THen she will have survived another phase of her treatment,and we are that much closer. She has to endure 5 more months of chemo once radiation is over. FRY LOSER TUMOR,FRY!!! So far it’s shrunk and she’s getting better, but the treatments are SO hard on her body. She has lost functioning in her fingers(toxic effect of the chemo), and she falls when she walks(ankles hurt from the chem, and they are stiff). The side effects of the radiaton are already kickin in…she says her whole head just feels sore. She also said she can smell a burning smell while she’s undergoing radiation(we checked with the docs, they said it’s normal, some people are more sensitive to the radiation). That was a trip. I told her she’s smelling the tumor FRY…YEAHHHHH!!
Huge thankyou to all who have taken time to sign her guestbook and taken the time to read these posts(my mini novels..haha)and visit her site. It is such an honor to be Boey’s mommy, and I love sharing her with you, she is such a gift. I rarely have time to post, and there’s SO much I want to share, hmmm..wonder what gave that away?
I don’t look forward to another insane week…driving every day to Portland, back to back appts with radiation, PT, OT, more blood draws, and the ongoing scare of her temp spiking again. It’s been such a nice break to come home and relax.
We saw a naturopathic doctor on Friday. She is so awesome, and has a great treatment plan to help Boey during radiation and the next 5 months. Boey will probably start hiding from me once she realizes there are even more capsules to take!!! She takes so many as it is, she’s going to turn into one soon! She’s a smart girl, she hates it, but she does it like a real warrior, she knows it’s helping her body stay strong and fight. We will be adding a new beauty regimen soon, the clay mask! The doc told us to put it on her immediately after radiation(it helps heal the skin, and any toxic effects). She is so excited, we’ve done many beauty masks in the past, and now we’ll be adding this one too!! I’ll call it “our pampering time”. She’ll love it.
Boey had a blast with the physical therapist on Friday. They had her ride a specially designed bike around, she was soooo funny!! She was driving it all over the hospital, the skybridge, elevators, outside, she was exhausted afterwards, but well worth it!! The bike is going to help strengthen her ankles and the foot drop(both of these are from the toxic effects of the chemo..peripheal neuropathy).We want to buy one soon so she can have it here to ride whenever she wants, the more she uses it, the stronger she’ll be. Whatever it takes to make sure she wins.
Happy Mother’s Day. I almost forgot it was Mother’s Day until I got a card in the mail. Time flies when you’re whole life is turned upside down! I think I’m going to pamper myself today, and get a nap in somehow. Would kill for a massage after a week of hospital beds….omgosh..we are dying! Your prayers are being answered, Boey is winning!! This “tumor really did mess with the wrong Boey”, our favorite Boeyism ever(and there’s sooo many great ones).

Here’s a shout out to the BEST BROTHERS in the world!!! Boey misses you guys, and LOVES YOU so much. Sorry it’s been a hard week, we are with you always. Thanks for your understanding, love, and kindness towards your little sister. She’s so lucky to have you guys. Love you chris, Love you Joe:)!!!

Proud of our little girl.

Thursday, May 4th, 2006

Woke up at 5am to go to Portland for radiation this morning. Boey was very tired.

After expressing how much she hates to have her port flushed,(She gags and sometimes pukes) we spoke to the doctor and he said that she could try to undergo the treatments without being sedated if she wanted to. This requires her to have her head immobilized and attached to the table with a specially fitting mask. She said that she wanted to try it so we did. She told me that she wanted me to post the pictures on the internet of her, so here they are;

.

Look at her smile!!!!! 

 I did not expect this. I, for one, would hate this. I am so proud of my little girl!!! She said, “Grammie will be so happy that I smiled in this one.”

This is where she said, “take a picture of me so I can post it on the internet to show them how happy I am that I don’t need sedation!”  Did I mention that I am proud of my little girl?

Dad

ThankGod our Boey girl inherited the survival and stubborn genes(you know who you are..haha)!!! Boey’s great grandpa was on the Indianapolis and survived 7 days in shark infested waters…soooo this cancer doesn’t stand a chance! I’m so PROUD of my daughter, and what an honor it is to be Boey’s special mommy:). MOM

Radiation Time:(

Wednesday, May 3rd, 2006

We just got back yesterday from a long two days at the hospital for her big chemo. We talked to the doctors for a long time about the side effects on her fingers and ankles. The vincristine has caused peripheal neuropathy in her fingers, she can’t grasp a cup, make cards, write, ect. All her strength in her fingers is gone, and it’s heartbreaking. She will be walking and just fall down sometimes. Her ankles are hurting all the time, and she will need leg braces to prevent her from falling. Today we were in the car and she blurts out” I hate CANCER SO much, I can’t even do my doll’s hair because of my fingers”! It’s heartwrenching to see her suffer. I just keep emphasizing to her that she is winning this battle because she is so brave, resilient, and incredibly strong. She truly is our hero. Tomorrow is the big start to radiation…yuck. None of us are looking forward to this. She will need a blood transfusion, and be sedated for her radiation. We will do this for the next 28 days in a row. Although we got incredibly fantastic news about her tumor this last week, we are still up against so much. Somehow her body has to withstand terrible side effects of chemo, radiation, possible infections(experienced that once), not wanting to go anywhere because she’s afraid her wig will fall off, feeling isolated from all her friends, not wanting to eat because that’s one of the side effects of chemo which could mean a possible feeding tube, blood transfusions(who knows what’s really in someone else’s blood…I hate this idea), and finally just surving everyday living under a major amount of stress.

She did okay with this last chemo(all over body pain, a new med they gave her really made her GRUMPY), but they didn’t give her the vincristine because of her fingers and ankles. She wont’ get the Vincristine for another 2 weeks, and at that time, it will be a reduced dose until these side effects subside. So, while she’s still reeling from the nasty side effects of the last chemo, her little body will get hit again with radiation, which will be harder on her than the chemo has been. We are so beyond exhausted. I know all this hard work is paying off, and she is winning, but our entire family has never experienced this amount of fatigue, stress, and chaos ever, I really hate it. Not only is it hard to see your baby girl go through this and know she’s missing out on a part of her childhood, but everything else seems to fall apart too. I can’t wait to get our old life back. The day she is declared cancer free, the whole world is going to hear us celebrating! I know this experience is going to make her stronger and wiser, but sometimes I wish she could just be Boey and enjoy life like she used to.

Lots of prayers for our little warrior. God is answering prayers, and it’s awesome. I’m gearing up for the next 28 days in a row of radiation, and I pray that God gives Boey the strength to endure and keep on fighting. Lately, she’s been begging us to not go to chemo because she hates it with a passion. Can’t blame her at all, I’d be hiding too if that was me. Yesterday the nurse came in with her chemo armor on, full mask, apron, gloves, hat, glasses…it looked like something out of a movie. Usually the nurses do not put that much protection on to administer the chemo. The nurse said ” Just goes to show how toxic this is, if I was to drop the chemo on our skin, it would burn our skin off. It’s nasty stuff, but at the same time it’s saving her life.” It was another dose of reality for us. She’s only 6 years old, and has to somehow endure toxins being pumped into her arteries. It’s very weird to be so grateful for such a nasty poison. Keep the prayers coming our way, we have a long and scary road ahead.