Archive for July, 2006

Cancer Will Not Take Away Our Joy

Monday, July 31st, 2006

     Boey is getting stronger every day from last weeks chemo. The new meds that I asked the nurses to give her this time around, did an amazing job. She never once threw up, or cried from tummy pain. She slept most of the pain away on Friday. The last few days have been kind of rough with the throat pain and her feet hurting. She eats something and she starts crying because her throat hurts. The pain pills help, but the pain still comes back pretty quickly when she eats. ThankGod she loves SMOOTHIES!! She refuses to walk now because of the pain in her feet, ankles, and legs. These are all side effects from the Vincristine.  She is going to PT during the week and she is very excited to get her leg braces(they are called AFO’s). The side effects of the chemo are definitely taking a toll on her little body. But we also know that the chemo is taking a BIGGER TOLL ON THIS EVIL CANCER.

     Even though she is going through this nightmare, she tries SO HARD to stay positive and enjoy all the things she loves. Our motto as a family is “this cancer will not have any power over our joy in life”. I believe that is a HUGE reason why she is doing so well, because we keep her strong mentally and focused on the postive. Chris Daughtry’s music is a HUGE inspiration to her. From the beginning when she fell in love with his bald head and phenomenal pipes, there was an instant connection. We believe that God knew she would need something to get her through this difficult time, it turned out to be Chris’s band Absent Elements.  The power of their music and Chris’s voice was so therapeutic, she was able to lie still with the mask(pictured here on this site)on during radiation. The doctors said no child her age has EVER been able to go through radiation without sedation. There words “Mom and dad, you have one very amazingly STRONG child”. All of us could not be MORE proud of our lil warrior. THANKYOU TO ABSENT ELEMENTS. The band and the fan’s there are absolutely phenomenal. Your support has helped our family through such a difficult time, we are forever grateful to you. Your CD has helped my daughter more than you will ever realize(radiation without sedation is a pretty big indicator)!!! THANKYOU!!! And Chris D.. we are forever grateful to you and hope you realize how much we appreciate you and what you mean to Boey. Thankyou for giving your time, prayers, and love to lift her spirits through all this grueling treatment. Thankyou Chris for making it possible for our whole family to go the concert(thankyou to the other Idol who gave up their ticket also((((((((hugs to you))))). Stay healthy and take care of yourselves okay? Boey is ready to rock out with you and teach you her Daughtry Dance!! LOL!!You are all amazing. You are such a blessing. Thankyou again for making her biggest dream come true.

Boey is sooooooooooooo excited about the American Idol concert. She is so motivated to fight even harder just knowing she gets to meet you and rock out with you soon!! THANKYOU FOR EVERYTHING!!

Chemo Day

Friday, July 28th, 2006

It’s Friday morning, everyone is still asleep. Wanted to update everyone on the latest. Boey’s fever finally broke on Tuesday. The docs still don’t know what is was from. They have her on antibiotics just to make sure they cover any possible infections that could still be lingering. I realized on Tuesday that Boey had been keeping symptoms from us because she said “I am NOT going back to the hospital, and if I tell you guys, I will go back there”. Our lil warrior is completely worn down, it is so heartbreaking to see her like this. We explained to her why it’s so important to tell us what’s going on with her body. We emphasized what a warrior she is and everytime she does tell us what she is feeling that she is outsmarting the cancer because the cancer doesn’t want us to know(she loves knowing she can outsmart the cancer). She then blurted out everything that she was feeling pain wise, then came the emotional plea to me to stop the chemo.

She looked at me the other night with tears in her eyes and said “mommie, they are giving me to much chemo, my body can’t do it anymore. I felt stronger before, I am trying to fight, but my body is so tired from the chemo. Please mommie, tell them I can’t have any more”. It killed me to hear her say this. I have always been able to protect her. It  kills me to know that this is so out of my control and I can’t make her better. Through our faith, we believe that God is the ultimate healer and she is going to be cancer free. As her mother, watching her suffer is the ultimate heartbreaker. I have had to rely on God’s strength and wisdom to get me through some unbearably difficult times. Her asking me to make them stop the chemo was one of them.

Yesterday we were admitted for her big chemo, her counts were good, that was a relief. Her hemoglobin was really high thanks to the transfusion, that was a HUGE relief also. She had to be hydrated for a very long time due to the loss of fluids from being sick the last couple of days. She still won’t walk because her feet hurt so badly from the Vincristine, we have PT coming in today to work with her. Before she received her chemo, she chowed down on everything that sounded good to her. I ran to the store and bought everything that sounded good to her, and it worked!! YEAH!! Not only did she eat alot, she ENJOYED all of it!! We were relieved because she had lost quite a bit of weight in the last week.

She received the chemo late last night and has been sleeping ever since. Last time she got her chemo, she got really sick and was throwing up. Rob and I talked to the nurse and asked her if there was different meds she could have, that last time those didnt’ seem to work very well. This seems to be working great. I am so ecstatic that she hasn’t complained of her tummy hurting. I think we finally figured out what really works for her so she doesnt’ feel so sick. We are hoping that the anti nasea meds help her sleep all day. When she’s awake she feels so badly the day after. I hope she can continue to sleep through all the nasty side effects of the chemo today.

We had a good laugh this morning. Rob, Chris(my son), me and Boey are all scrunched in this little room(it’s a pretty funny sight actually). Joe is with grandpa(the boys alternate coming to the overnighter). The CNA walked in and started doing Chris’s vitals(he is in the main bed). I don’t know how she missed Boey right next to him…she’s the only one with the I.V! OMG..it was so funny. Chris was all fast asleep and woke up briefly..he’s like “huh? what’s going on? what are you doing”? HAHA!! She quickly realized it was the wrong person(Boey was next to him, and covered in a blanket..she was hidden). The nurse and I laughed so hard..it was hilarious. She felt so bad, but it was so funny.
Chris is such a great big brother to get his vitals done for his sister!! GO CHRIS!! HAHA!! I never realized how important a sense of humor is and how it helps get you through!

All of us are scrunched in this tiny room(I am updating on the computer they provide in the rooms), but wouldn’t have it any other way. Our family has grown so much closer over the last few months. Instead of letting the cancer break us apart, it has made us stronger and closer than ever. Just sitting here watching everyone sleep, I am overwhelmed by the love and strength in this room. I know we are going to get through this. We have God and we have eachother.

Not only has this been a journey of faith and drawing closer to God through all this, but we have made some very amazing friends. We have received so many emails expressing how our lil warrior has inspired them to draw close to God and pray for the first time in their lives. We are inspired by these emails, and it makes it easier to see the bigger picture. God is being glorified through our faith and our daughter’s strength and determination to fight. We are celebrating and praising him for the small miracles. Boey’s tumor has shrunk and that is wonderful news. Of course we wanted it to be gone forever, but she is headed down the right path.

She needs your continued prayers for her ongoing battle. Someday soon we can all rejoice together when we hear the words “your daughter is cancer free”. Our family is so grateful for all you have done for our family. Knowing your support, prayers, and encouragement is there gives us strength. THANKYOU.

MRI results and Life

Monday, July 24th, 2006

Wow…what a surreal and exhausting day. Left early in the morning for Boey’s MRI. She was determined to go through an hour of MRI testing without sedation. She told everyone “if I can do it without sedation during radiation, I don’t need that gross stuff for the MRI”..yep..that’s our girl..determined, brave, strong, reslilient, and NEVER willing to back down or refrain from speaking her mind. The nurse got her all comfy on the MRI machine and Boey was beaming with pride that she was doing it without sedation. She had her earplugs and was ready to go. They allowed us to be in the room with her and we were rubbing her legs so she knew we were right there with her. MAN!! That machine is insanely LOUD!! I think the noise alone freaked her out..then she got to warm and after 10 minutes had enough. The tech came in and told us that she was moving just a little and they might have to redo the scans.

Rob and I were comforting Boey making sure she knew how proud of her we were for even trying(even the tech said an adult was in there earlier and didn’t even last two minutes…Bo loved that story)and that she will probably need the sedation after all. SHE HATES THE SEDATION (and saline and heparin)soooooo much because she is hyper sensitive to the taste and it makes her gag, and throw up at times.  She couldn’t wait to hear the results of all her hard work frying this nasty tumor so she reluctantly agreed to the sedation. The doc comes in with the sedation and she immediately sat up and started screaming ” I will not let you touch my port with that stuff..NO..I said NO..I will not let you do it..you can’t do it..I won’t let you”..it was terrible, the doc looked at us and said “you are doing the right thing”..she was crying and kicking at this point and said “mommie..don’t let them do this..I can do it without sedation, I can do it, give me another chance”. She fell asleep instantly after the sedation and I couldn’t stop crying so I left the room.

I couldn’t believe it all went down that way. We knew she needed the sedation or she’d be in that machine all day being retested because she would have moved, etc…but that was absolutely heartwrenching. We were so proud of her for even trying and lasting as long as she did without sedation. Rob and I were cringing just observing her in that narrow, dark, and loud machine. She is so BRAVE. Now it’s a matter of waiting out the results of the MRI.

AS the day goes on(rob and I are dying with anxiety over the results of the MRI)we went back to the clinic to talk to her doctors about the ongoing fever, headpain, and tummy pain. I also noticed ever since Saturday night at the ER she was looking very pale(very suspicious of her hemoglobin..possible anemia)and today confirmed it. Her RBC counts were all very low(WBC counts were surprisingly good) and might be why(along with the fevers)she could be having headaches. Her skin was very very pale..even her lips were almost white. They started a whole unit of blood right away for a transfusion which lasted about four hours. It was such a relief to see the color come back to her cheeks and lips. It also killed me to know that she was that anemic. I never thought I’d see the day that I was actually excited about a blood transfusion(I use to be terrified of someone else’s blood going into my daughter).

WE had a very special visitor today. A friend Marissa(also a die hard Absent Elements fan just like us:) that is a cancer survivor came to visit Boey and offer her support and love. She brought really special gifts and HUGE HUGS. It was the first time all day Boey actually smiled despite feeling horrible. Thankyou Marissa for spending the day with us, it meant alot to us that you were there to show your support. Boey was pretty grumpy so she didn’t really get to talk to Marissa very much, but she said n the car how much she loved everything and couldn’t wait to put on her other Chris t-shirt Marissa gave her and how happy she was that she didn’t let her cancer win just like her. It was so awesome ..thankyou Marissa!! You and Boey are true warriors and such an inspiration…thankyou for sharing your day with us.

Thankyou Annie(Boey’s name for her other grandma) for bringing the wonderful much needed food to the hospital. None of us had time to eat amidst all the chaos so that definitely hit the spot!! Boey woke up briefly after the transfusion and turned into an eating machine!! It was so awesome to have all that great food right there for her..we appreciate it SO MUCH!! Thankyou for making our day that much easier and being there for us, it means alot.

The results of the MRI. The doctor said the tumor is shrinking and definitely showing a response to the radiation and chemo. This was awesome news, but there was a huge part of me that was so disappointed that it wasn’t just GONE…FRIED, INCINERATED, BURNT TO A CRISP, FRIED BEYOND RECOGNITION, SO UNRECOGNIZABLE THAT THERE’S NO POSSIBLE CHANCE IT CAN EVER HURT MY BABY AGAIN. So yes, I have mixed feelings. I’m rejoicing in the fact that it hasn’t grown, it’s responding, and it’s shrinking. It’s incomprehensible to us that there is a chance of just one microscopic cell wandering off and finding a new home in her body while the tumor is still there. This is so unfair. WE told Boey the exciting news and that all her hard work is paying off. She was pretty out of it..so hopefully tomorrow she will realize all her strength and determination is paying off in a HUGE way and she is kickin cancer butt all over the place!!!

I talked to the doctor forever about removing the dead tissue once we know it’s completely dead. She said the surgery is not possible “because it would kill her”. We were so confused. Noone had explained to us until today(or there explanations weren’t very clear in the past)that this stupid evil nasty tumor has pretty much embedded itself in her sphenoid bones(so much as to have remodeled her bone structure in the orbital area of her face)skull bones in her head, tissue, blood vessels and to remove the tumor would mean ripping out her skull bones, and everything else(she said her brain would fall forward once it was removed). This was so disturbing and so surreal Rob and I just looked at eachother in disbelief.

Nobody had described the tumor this way..I always thought it was just a mass of tissue you could surgically remove(they work on brains why not her tumor), and it would be gone forever. I told the doctor I fully intended on contacting many other doctors for a second opinion. She insisted that they would all say the same thing, and I insisted that we need to hear that for ourselves. We have to at least know we have exhausted all our resources to be okay with the fact that this sickening piece of tissue can’t be removed..ever.

We just need to pray that it never recurs and the chemo does it’s job the next four months in killing ALL THE CANCER CELLS THAT COULD BE HIDING OUT. She said there is a 25% chance of recurrence and if it does recur it’s MUCH HARDER the second time around. I didn’t even know how to respond to all this…Rob and I were so devastated..we truly believed it could be removed, but we will continue to pursue other doctors and battle this monster head on. After all the hell this kid has gone through, we will do EVERYTHING IN OUR POWER to ensure she never has to go through this again. She has so much to offer this world, and Boey is one special little girl.

She did not receive her big chemo today because of the ongoing fever. The doctors are worried about possible viral meningitis, sinusitis, or lung infection. She is going to go back tomorrow for more testing..possible spinal tap, chest x-ray, and CT-scan. They want to monitor her fever and rule out any of these possible infections before she receives any chemo. For now, her next chemo is set for this Thursday depending on these test results. All blood cultures have come back negative. The docs said sometimes we can never figure out why there are fevers, but hers just seems to be going for so long, and that’s why they are being extra cautious.

Your prayers for our brave and beautiful lil warrior are being answered, so please continue to pray your hearts out for a complete healing and recovery. Pray for God’s strength and wisdom for our family. We miss our family being together. I desperately miss my boys. WE LOVE YOU CHRIS AND JOE…BOEY IS THE LUCKIEST AND MOST BLESSED SISTER IN THE WORLD TO HAVE YOU AS HER BIG BROS!! SHE MISSES YOU AND CAN’T WAIT TO BE WITH YOU AND JUST LAUGH AND HAVE FUN!!! Not being together because of constant trips to Portland and overnight stays has been so taxing on our boys and our entire family. Thankyou Gramma and Grampa for your neverending unconditional love and support for our boys. We know how hard they are taking this, and you are always there for them and loving them when we can’t be. You are so special to us, and we love you SO MUCH. Thankyou for lifting our family up during this time with all that you do. WE could not do this without you guys.

Thankyou to Boey’s Bald HERO for lifting her spirits on Saturday. She needed that boost right now more than ever, and she was beaming when she heard his voice on the phone. She is so excited about the American Idol concert. She may not get to go depending on how she is doing. We talked to the docs today and they said if her counts are really high she could probably go but only for a short time(minimizing exposure). She deserves this special time soooooooooo much. She was so excited when her hero told her that he can’t wait to meet her and give her a hug. Thankyou so much for taking the time out of your insane busy schedule to talk to our lil warrior and lift her spirits. WE hope you realize how much we appreciate you and everything you’ve done. BOEY LUVS YOU!!

Boeyism of the week “Boey did you ever think you were this strong”? ” Nooooooooooo mommie, didn’t ya know most kids aren’t ready for a battle like this”? OMG..she blew me away with that one. She just continues amazing us with her Boeyisms….Boeyisms are quirky, spunky, sassy, funny, sweet, innocent, straight from the heart, and cute little words that Boey comes up with out of nowhere. Boeyisms are what makes Boey so unique, and so very special. Right now we have our very favorite Boeyism that we take comfort in, especially after today… “THIS TUMOR MESSED WITH THE WRONG BOEY”. IT SURE DID BOEY GIRL!! KEEP KICKIN IT WHERE IT HURTS SWEETIE!! YOU ARE OVER HALFWAY THERE!! WE LOVE YOU SOOOOOOOOOOO MUCH!!

What a warrior

Sunday, July 23rd, 2006

Thankyou to our local ER for being so incredible. The doctor(you were amazing, Boey loves you), nurses, I.V team, THANKYOU for helping our daughter with her anxiety, her pain level, and fear of having her port accessed We are so grateful to you for reassuring her and doing everything she asked(pushing her own flush, wanting to do everything herself). You made a HUGE impact on her being able to trust other medical staff other than the regular ones she sees. THANKYOU.
We were at the ER until midnight. Her counts were low, not neutropenic low, thankGOD. But low enough to cause concern due to this ongoing fever. They gave her antibiotics again because her lab report showed a shift in her counts(possible bacteria in her system). They did more blood cultures, and a chest x-ray which showed up clear. I should hear back today about the cultures. Right now she is just resting, still has a fever and we are just waiting for results so we know what lies ahead for tomorrow and whether or not she gets her big chemo. Boey asked me lastnight “So mommie, does this mean no chemo on Monday? My body needs a good break, I can’t wait”. Hearbreaking comments like this makes us realize once again just how much she hates getting the chemo(she hasn’t complained until recently). Her last big chemo(3rd of this month) was the first time she refused to go to the hospital and cried in the car because she hates it so much.This is so heartbreaking to us as parents. We want to run from the effects of the chemo on her body, but we know this poison is saving her life, so does she. I wish there was a way she could just get a break from all this, every day she is in battle mode(from all the effects of chemo). She has been kickin this ugly cancer to the curb(with some very unnerving scary moments) but always comes out on top. Somehow she needs to hold up during this treatment through November.
This week Boey finally had her leg braces made. Thankyou to the wonderful staff who were able to come to our house and fit her with her leg braces(minimizing exposure while her counts are down). She was so excited to get her leg braces, because her feet and ankles have been really hurting her lately(this is the effect from the Vincristine causing peripheal neuropathy). Foot drop is also a common side effect with vincristine, and the braces will help minimize this. Boey was so cute when she had the braces fitted(pics coming soon). She really wanted to keep the molds of the casts because they felt SO GOOD on her ankles, so she can’t wait to get the actual braces with the cute designs she picked out. She is now to the point of not even wanting to walk because her feet hurt so bad(mom and dad might need a new back soon from carrying her everywhere).
So not only is she battling the possible bacterial infection, low counts, pain from headaches and a sore body, a fever that won’t quit, now she has to battle the neuropathy from the vincristine. She hates wearing the arm braces, but she doesn’t mind wearing them at night. The doctors constantly remind us that the side effects of the vincristine are temporary, that it might only take her a year after treatment to be fully healed from the nerve damage. A year? OMG..one day is to long for us. Seems like the battle is never going to end.

My anxiety level is through the roof with the upcoming MRI tomorrow. This is HUGE. I keep hearing Boey say “This Tumor Messed With The Wrong Boey”, and I know the results are going to reflect my daughter’s words. Once we have the results we will be able to obtain many second opinions from specialists all over the world on removing this tumor forever. The doctors here have been telling us that it’s not possible because of it’s location. But I refuse to accept that knowing if even the tissue is dead, that there is a chance of recurrence if it’s left in there. Why take that chance? WE WILL explore all options, I have to believe and hope that there is someone out there that can help our daughter and remove this tumor for good.
From the very moment Boey was diagnosed, Rob and I made a pact that we will do whatever it takes to ensure that the cancer doesn’t have any power over our daughter’s life. What this means to us is that our daughter is able to live a quality life and enjoy the things she loves even though she going through such a terrible ordeal. I have quit my job to make sure she gets the best care from both worlds..naturopathic and conventional. She misses her acting classes and her friends, so she makes videos when she feels good enough and visits her friends or has them over when her counts are high. She LOVES art, and is constantly trying to make cards and letters when her fingers are strong enough. She is currently working on the coolest and cutest scrapbook for Chris Daughtry. The pictures are straight from her heart on what his music means to her and how it’s helped her get through this difficult time. She can’t wait to give it to him at the concert. We try to bring her as much normalcy and joy as we can, and I know this makes a HUGE difference in her care. The chemo may have taken my daughter’s hair, but I refuse to let it take her spirit and joy for life. The natural supplements are very expensive but worth every penny. I have to give them to her throughout the day, she doesn’t always want to do it, but she knows it plays a HUGE role in her overall health. The doctors have been floored by how well she looks and how awesome she is doing overall despite what she is facing. WE love hearing this so much. It’s such an awesome reflection on the care she is receiving from us, and a total testament to what a true warrior she is.
Everyday we live by that motto “don’t let the cancer have any power”. It’s obvious to us how much our attitude strengthens her spirit and mind. Thankyou to all those that have noticed and commented on how incredible she looks and how well she is doing despite what she is facing. What a compliment to our family’s sacrifices, time, love, energy, perservance, and cancer butt kickin attitude we have towards our daughter’s health and well being.THankyou so much.
Rob and I are trying to spread the word to other parents with pediatric cancer patients on the naturopathic aspect of her care and how incredible it’s been. She has not had to suffer with more than maybe 2 mouth sores throughout this entire treatment because she takes Glutamine(and tons of other pills) Parents need to be aware of this, no child should have to suffer from painful mouthsores(which in the end cause weight loss from not eating, and the chid will eventually need a feeding tube). Boey is a perfect example of combining naturopathy with conventional. She is such a fighter. She hates taking all the pills and vitamins, the Glutamine, but she knows without all these natural supplements she wouldn’t be doing as well as she is. What a warrior!
It’s hard to believe we will be battling this monster for life(possible secondary cancers from treatment, possibility of recurrence of the tumor). NO child should ever have to go through this hell. She has missed out on so much of her childhood, but she has also been blessed by so many awesome people that truly love and care about her. She is so blessed by just the amount of love she feels everyday. The LOVE is what strengthens her and that’s why she is winning. Our famiy can’t thank you enough for your love, prayers, encouragement, advice, EVERYTHING you have done for our family. Please continue to pray and I will try to update as soon as possible on the MRI results.

Still Battling This Fever

Saturday, July 22nd, 2006

I was hoping we’d be in the clear today and Boey’s fever would break. She’s been fighting this since early Sun morning last week. She’s already had two rounds of antibiotics Monday and Tuesday, with all blood cultures showing up negative. Her fever has gone up and down since then, but never really breaking. Today it was high again, and now we are off to the ER to get Chest X-rays, blood cultures, urine test, and counts..AGAIN. She hates getting her port accessed so much because of the nasty saline and heparin flush, and she really doesn’t feel to good, mostly sleeping on and off today. The doctor told me on the phone she will get her BIG CHEMO this monday even with a fever, as long as there is no bacterial infection in her blood. I wish she could have a long break from all this treatment. This is so hard to watch her miss out on being the vibrant life loving girl that she is and wants to be, but lately seems to really being getting hit hard. The doctor told us to be at the ER in an hour and they will be ready for us and have everything set up. Please pray for her and a speedy recovery. She is such a fighter, so strong, please continue to lift her up in prayer. We couldnt’ do this without your support, prayers, and love..THANKYOU. Pray that God would comfort her right now, she is very anxious going to our local ER to be accessed. She is straight out refusing to go because of her last experience. I will give an update on her counts, what the doc said when we get back and everyone is in bed:)!! Thankyou again to all the prayer warriors out there. We are blessed to have you in our lives praying for our BOEY!!