Archive for March, 2006

More Pictures

Friday, March 31st, 2006

I added more pictures to the website. “Giving Daddy a Haircut.” and “More Friends.” They are in the Photo Gallery. Wow. I forgot what Jenessa looked like with hair. Makes me a little sad. Not because she looks bad; she actually looks very beautiful bald. It is just a reminder of what we are up against. I don’t let down my defenses much during the day. I can update my girl’s progress to many people that ask all day and do it like reciting the classified ads. It is right now when I am by myself when everyone is asleap and I look at pictures or pray or listen to music that it hits me. Heavy stuff. (Dad.)

Jenessa and Bros get to talk to Hannah Montana cast!!!

Wednesday, March 29th, 2006

 

 

Today Jenessa got to talk to the cast from the Hannah Montana show. It is a fun new show on the Disney Channel that is one of Jenessa’s favorites. It was the neatest thing to see my whole family run to the phone when it rang and to see the smiles on their faces as they got to talk to the kids from the show. Thank you guys you are awesome kids!! You have made my little girl happy and my boys too; You are my favorite stars!!  (Dad)

THANKYOU TO THE ENTIRE CAST OF HANNAH MONTANA!!!!! Jenessa, brothers, and friends are floating on cloud 9! They still feel like they were dreaming, it was so surreal and so so cool!!! You know what they say about a happy immune system? These cancer cells don’t have a chance thanks to you guys in helping us in this difficult time! That one phone call meant the world to her and brothers(yes Miley it’s true…Chris has it bad for you:))…there are not enough thankyou’s in the world for what you guys did! Jenessa has absolutely no doubts about her future after talking to you guys…she’s always wanted to be on T.V, but now she has a new understanding and respect for what you guys do. You work VERY hard, have fun, and take the time to care for others and lift their spirits! She wants to help other kids too once she beats this, you guys gave her that extra boost she needs(especially when it comes to all her meds everyday…thankyou thankyou:) Keep up the great work on your new show…you have lifelong fans now..and the fan base is growing…all of you are really special kids…thanks for such a wonderful fun time in such difficult times..forever grateful!!! Now go rock out MILEY/HANNAH..we are watching you always..      (Mom and Jenessa)

Photos of Blazer game

Sunday, March 26th, 2006

Blazer Game 022.jpg

Thanks to Chad  (Our new friend and bro who is building this site with us.) I figured out the Photo gallery and I posted photos of our Blazer adventure. Check them out in the Photo Gallery. (Dad)

Strangeness

Saturday, March 25th, 2006

Today Boey was in a particularly goofy mood with her Grandpa James. She was laughing and explaining how the medicine she is on kills the cancer with their big ole boots stomping. I laughed because it was so cute. Right now tears are in my eyes because I am thinking about my baby girl having cancer and even in that she makes me laugh. Strange. Life is full of strange things right now. We are enjoying many things like the Blazer game and the love of many people but it is strange to place the reason why. (Dad)

Some Hope In Very Difficult Times

Saturday, March 25th, 2006

These days have been extremely stressful, exhausting, painful, heartbreaking, scary, unpredictable, emotionally draining(the list goes on)….. for our entire family. People warned us about the toll it will take on our marriage and unfortunately they were right. It’s devastating to see a family begin to fall apart at the seams and this is just the beginning. I’m just being honest because this is who I am, and I know the only way we will survive is to be lifted up in prayer. Our family has to do this for another year to 5 years…we don’t know yet and I stay up all night sometimes praying and trying to figure out how we will make it. I didn’t realize how much I miss our life before this stupid nasty tumor. I want it back so bad. Lastnight we went to a Blazer game provided by AFLAC(thankyou AFLAC) and it took forever to even get there because we had to turn around for Boey’s wig and hat(she told us she had it and then she realized it was gone)…I had to put her numbing cream on her leg in the car so she could get her shot before the game….and all this while brothers are freaking out in the background about how they don’t even want to go to the game now because they are going to be late because of their little sister. Boey starts screaming at them…:It’s not my fault I’m bald…did you know I have CANCER!!!”" “MOM…I hate having cancer, this is to hard”!!! So I’m trying to comfort her while they are pulverizing eachother in the backseat…Rob pulls the car over to deal with the boys…Boey’s cream and tegaderm(the plastic like bandaid that covers her cream)gets all messed up….so I have to start the whole process over again and the boys are still upset that we have to drive all the way back to the house for a wig. Yes, I know what all you parents out there are thinking…have a backup wig in the car at all times…I am all over that one:)!! 

We are in Portland and it’s shot time…Boey is saying it’s not numb enough for the shot…we have to wait longer…we finally give her the shot…Dad has to carry her all the way to our seats(her legs are sore and tired) and we have to deal with two brothers who tease eachother like crazy and are freaking out about getting there at halftime(pretty much blaming it on their sister). Let’s not forget the wonderful parking story…couldn’t find a place to park for awhile(this one was just a little time consuming). Tonight was a bad brother night…generally they have been beyond wonderful…but tonight they’re good sides definitely did not shine through. If this is a glimpse into our future for other events I’m terrified. Is this our new life? Our life has always had alot of stress, but nothing compares to this, especially when I know my little girl is fighting for her life every second of every day and on top of that I need to give my boys quality time together with mom and dad. I guess it’s just a balancing act amongst chaos…and eventually we will get it down. 

After everyone got food in their stomach’s, the family actually REALLY enjoyed the game and had a BLAST!!Boey and her big brothers were all into it…they LOVED it!! For some reason dad kept the camcorder on the cheerleaders…hmmm….he doesn’t think I noticed? Lol…okay, anyways…after the game AFLAC set us up with other families to meet Steve Blake, a TrailBlazer player(thankyou Steve) for pictures and autographs….that was so special for our kids…they were in heaven! Boey thought she was going to get to meet the cheerleaders, she was really bummed(so was daddy:)…but when I told her about the OSU cheerleaders for the Burright fun run/her bday party on May 20th…she came alive again and life was good.

My whole point to this story is that I am realizing more and more how much our family is really going through..and small things are huge things because they include so much to remember like extra wigs…meds…straight jackets for the kids..oops that slipped…did I say that? I know even though this is happening to our family and it seems impossible to wake up every morning and face it all…we have God and he is taking care of our family and loves us more than we know. He has a plan for our life and I have to keep reminding myself to trust him and he is in control and to not take all this on myself. I tend to do that alot(ok, all the time). The mommy part of me falls apart inside when I think about the reality of what’s happening to my baby girl…then I have to snap back and be strong and remember who is in control here…sometimes it just doesn’t work and I fall apart.

Here’s the good news. Make A Wish called and the lady and I talked for a long time about what I thought Boey’s biggest wish would be. Boey loves Jessica Simpson, always has…she told me she wants to sing the “Boots are Made for Walkin”song with her(she walks around the house in her boots and sings her song all the time…I think it’s the cutest thing I’ve ever seen). I told the lady this and she said that she doesn’t see why that can’t happen, that’s what they are their for to make sure her wish comes true. They will come talk to Boey the first week of April to make sure that’s what she really wants. Another organization called Fone Friends actually arranged for the whole cast of the Hannah Montana show to call Boey and her brothers next week during spring break and talk to them(we got permission to record the call, we will post it to her website). They will also send all three kids signed autographs on actual scripts from the show. Then Linda(from Fone Friends)said someday when she feels better maybe we could fly down to LA to watch a live taping of the show! I want to emphasize how incredible these programs are…like I told both these ladies…all these happy exciting events kill off lots of cancer cells and they are playing their role in helping Boey win this war! When I told Boey all this, I thought she was going to burst at the seams!:)! She is beyond excited…I hope she doesn’t pass out or anything when it happens. In very difficult times, there is hope. Thankyou to AFLAC for providing us with a wonderful time, Make A Wish and Fone Friends for giving our daughter something to look forward to(now she’s really motivated to drink her glutamine:)! There are so many organizations out there who have extended so much generosity….so many people I want to thank…I hope you know who you are and how much I appreciate your kind hearts and generosity in helping us win this war on cancer. I have no doubt Boey is going to win. There’s never enough words to express how grateful we are to everyone that is involved in helping us through this difficult time. Continue to pray that God wil give us strength, wisdom, healing, and courage to make it through this time. Thank you.