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:)!!!
