grants blog is beast

BACK TO SCHOOL

2009-10-02T11:25:00.000-07:00

Wow....I can't believe it's been so long since I blogged. Had a great summer vacation. Went to visit my Aunt Karie & Uncle Noah in Custer, SD. We drove there & back and it took about 2600 miles of driving. We stopped all over to visit my mom's friends & relatives along the way. Then I went fishing in Alaska with my grandpa Jack. Caught lots of big coho's and kings. I played lots of video games and went to a bunch of movies.
Now, it's back to school. I like Mountlake Terrace High School. All my friends are there. I do think I'll go visit the Fred Hutch School sometime and show them how well I'm doing.
I've been pretty well. No sickness, no cancer. It's nice. I do have to get flabotomys still. That's where they drain off a pint of blood out of me and throw it away. I have high iron, so that's the easiest way for me to get my iron levels down. I have one today, and another one in about 3 weeks, then I might get the Port taken out. I still have the Port in my chest so they can take out the blood. My arms don't like getting stuck any more. It'll be nice to get that out, and back on with my normal life. I had a bunch of testing done last month, and the SCCA has officially let me go. I only have to check in there once a year now. I'm still going to Childrens' Hospital for testing for the Ewings Sarcoma, but that's up to every 18 months now. None of us miss the hospital, that's for sure!
I hope everyone of you has a happy & healthy autumn season. Can't wait until Christmas and then my 16th birthday the day after! I'm going to be taking driver's ed soon.....so watch out! I'll be on the road soon.

SCHOOL IS ALMOST OUT!! YIPPEE!

2009-06-11T11:04:00.001-07:00

Greetings everyone! I am looking forward to getting out of school for the summer. We will be on the road soon for a 2 week road trip. My mom has lots of people lined up to visit along the way. We have one friend, Rob, who is a fishing guide in Idaho & Wyoming, so we will stop there for sure. I'm bringing my fishing gear. Hoping to catch a big one!! If we have time, we will blog along the way!
My dad came home for 2 weeks, from Alaska, but is already back up there. He's catching lots of halibuts.
I have a bunch of tests coming up on June 25th. These are for the 1st cancer, Ewings Sarcoma bone cancer. Hopefully, all is well....but it's always a little scary. I'm still in remission from the 2nd cancer - AML. The bone marrow transplant is working. We wrote a letter to our donor in January, but he/she never responded. I was so hoping they would......but, maybe it's hard on them. I'm sure thankful that they did it.
Have a great summer everyone!

It's been several months since my last post

2009-05-20T13:02:00.000-07:00

I've been so busy playing videos, xbox, computer games, homework & school, that I haven't had much time for this blog. However, since my last post, I got to watch my new friend Fireman Jack run up the Columbia Tower Stairs on March 8th. Running for the cure & the Leukemia & Limphoma Society. (sp??). Anyway, here's a picture to prove it. And if you wanna see more you can go to http://blog.seattlepi.nwsource.com/seattle911/archives/163694.asp and check out the whole article in the Seattle Times & PI online. If you look in the photo section you'll see lots of firemen.

Fireman Jack wanted to meet me, so that his run could be for reason. He has 2 children around my age, and is thankful for their health. He's sure been nice to me. I went to his Firestation one day for dinner.

Maybe I should be a fireman when I'm older?? I got my permit, and am going to take driver's ed soon. Looking forward to a vacation this summer. We are going to drive to South Dakota to visit my Aunt Karie & Uncle Noah, along with my Grandma Ging. We're hoping to come back via Yellowstone. I'm looking forward to those geological wonders!! I've been once before, but I dont' remember it. I was only 4. I hope all is well in your world. My world is actually doing great!

Grant Here

2009-02-13T13:24:00.000-08:00

Hi all,
sorry for not writing sooner, but I've been busy, busy, busy. I'm back at Mountlake Terrace High School, in 9th Grade. I did like the Hutch School, but I'm really glad to be back at my normal school with my friends.
It feels more normal. My brother is giving me a ride back & forth. I'm still in Physical Therapy, and doing ok. My body seems to be back to normal, except my energy level. I still don't have high energy like I used to.
I did have to have a port put in my chest yesterday so that the doctors can get blood out of me. My body doesn't seem to want to give any blood any more. So, since I need to drain off a pint of blood each month, this is how they are going to do it. But, man, was it painful to put in. This is the 3rd device they have put in my chest, and each time hurts worse than the last. I'm doing better today. I'm tired of feeling like a pin cushion though.
My transplant anniversary came & went - Februay 7th. It's been one year.

I'm hoping to stay healthy for a while. I have a bunch of 1 year appt's to go to at the end of this month. Not looking forward to those, but, then I should have several months off.

Hope you all are well, happy & healthy!

WE WISH YOU A MERRY CHRISTMAS & A HAPPY NEW YEAR!!!

2008-12-16T13:28:00.001-08:00

I had a great Thanksgiving at my Grandma Ging & Grandpa Jack's. Lot's of pies! I think it ended up to be about 1/3 pie each!! We played the family game called Oh Hell. You have to bid on tricks, and there is trump, so sometimes it's difficult.
My mom always likes to point out that she has one once, Thanksgiving 1985!! Against her Grandpa Haney too!! He's gone now, but apparently he was the King of the game.
I'm still going to Fred Hutch School. I miss seeing my friends from the neighborhood, but hopefully I'll get to see them at high school soon. I had a bunch of testing done, so I can have special classes when I get there. Missing 2 years of school doesn't really help me get through school.
Of course I'd rather play video games on my xbox or online. I've been doing that alot lately, according to my mom.
We did go make gingerbread houses at my Aunt Teenie's house last Sat. I made a boat tied up to a dock! I have fish, and even some shark fins in mine. My mom made a train and an espresso stand!! My dad tried making a church, which my mom ended up saving!! So now we have a gingerbread town in our living room.
I will try to take pictures of our decorations and post them later. My mom has gone all out this year.
Keep in touch - and oh....Mrs Perry....if you read this could you email me your address??? We have card to send you, but can't seem to locate your address.
Thanks everyone - and PEACE ON EARTH & GOODWILL TOWARDS EVERYONE!

I miss seeing all my cute nurses! But.....I'm happier here at home!

2008-11-13T14:31:00.001-08:00

Hi to all! I miss seeing all the pretty nurses, who became my friends while I was inpatient. But I do like being OUTpatient better! I will come by sometime to say hi! I wish all the patients on the SCCA floor at Children's could get out of there and stay healthy & happy. I figure I'm a miracle, so we know they happen. I hope that all the kids can get their own miracle!

Thanksgiving is coming, and I must say I will be most thankful this year. I won't have to spend it in the hospital, and I can eat all my Grandpa Jack's pies that I want!! I hope they still taste good. My tastebuds don't work like they used to!

I'm also thankful for all of you! Thanks for watching my progress, and keeping in touch. All the prayers seem to be working, so keep those going & I will keep going too.

The Blood Clots are almost Gone!!!!

2008-10-13T11:39:00.000-07:00

Yes, it's true. On Friday I had an ultrasound of my legs, and almost all of the bloodclots are gone! There are 2 tiny spots left. So much for them being there the rest of my life!! My mom says Doctors don't know everything! I'm finally off the pain medication, and I'm not having any pain now. Sometimes I get a little head ache, but, I can live with that.
I'm still going to Fred Hutch school in Seattle until January, when I can go back to my regular high school.
My brother turned 17 last weekend, and we went to Game Works, downtown. I still get tired faster than I used to. But, his friends were fun.
I've been playing a lot of video games lately. See ya online.

Still at home & feeling good

2008-09-25T14:09:00.000-07:00

Life is good. I got checked out at re-hab yesterday. All the therapists are pleased with my progress. I dont' have to go back! That's the good news!! I'm tired of doctors, and would prefer never to go to Children's Hospital again. But, of course, I still have appointments there. We have been discharged from SCCA and are now officially a patient of Childrens again. We see Dr. Hawkins tomorrow. He's my Ewings cancer doctor, but he will follow me from now on. I'm still waiting to get that Hickman out. I dont' want any infections so I must get that out.
My hair is finally starting to grow back. It's patchy. I hope it comes back the same.
School is going ok. I picked art as an elective, but we might do cooking.
I'm getting out and about. I feel like I can finally walk normal now. I'm not quite running yet, but I will soon. Shannon (my PT coach) works me hard.
Cole drives me places. We see movies, go out for dinner, see friends. I hope to see my friends more soon.

I started school today

2008-09-08T20:56:00.000-07:00

I finally get to go to school. It's not the one I want to go to, but at least it's school. The Fred Hutch School is downtown next to the Pete Gross House by the SCCA & Fred Hutch Cancer Research. I only have to go 1/2 days, from 9-12:30. Then my mom has me signed up for an Online math class thru edmnds school distirct. It's different. I have to go to a website everyday, and do work.

Today a guy named Grant, from Team in Training, came by my house and brought me a signed Tatupu helmet from the Seahawks. Wow, it's really cool. He wrote an email to the Seahawks telling them what a big fan I am, so they sent this back for me! Nice.......

I did get tickets for the Jets game in Dec. My 300 days will be over by then. Off to bed, I have to get my sleep for school.

My Dad is home from Alaska!

2008-08-26T11:42:00.001-07:00

My dad got home on Friday night. He came through the locks about 9pm. He was suprised to see my standing at the dock, waiting for him. I was barley walking with that walker when he left. I don't even use the walker now. I barely am using the wheelchair they gave me. I'm still having a hard time getting up stairs, but everyday its getting easier.
I'm hoping to go to the Fred Hutch School when it starts. I hope I don't have to have a tutor all alone and can go to their classes instead. I'm tired of being stuck inside all the time. I really want to get outside & run around. Soon, I hope.

2 Weeks Home - Feeling Good

2008-08-20T11:03:00.000-07:00

I have lots of appointments downtown at SCCA that take a long time and are boring. They are doing all the same tests they did at day 80 because of the blood clots. I think everything is going ok so far, and they will release me back to Childrens' Hospital soon. I am going to rehab at Experience Momentum in Lynnwood. I have a therapist name Shannon. Hes' very nice so far. We played a Wii game and I beat the record. I like working on the machines, and I ride a stationary bike at home too.
I wish I could see more of my friends. I seem to have lost touch with a lot of them since I've been so sick. I wont' be able to go back to school at my regular school for a while yet. I wish I could. I have been going to the mall and the movies. Anything is better than the hospital.

Home is much better than the hospital!

2008-08-12T15:16:00.000-07:00

That's the understatement of the year!! We've had a good weekend. Gone to the movies, Games Workshop (at the mall to paint little Lord of the Ring guys), out to dinner at Red Robin, and sleeping in. We did have appt's today, downtown at SCCA. Blood checked....blah, blah, blah! Grant does have a few symptoms of Graft vs Host Disease (gvhd). He's been throwing up. So, he has to get an endoscopy soon. That should be no big deal, he's had 2 already. They put him to sleep and it's done in the clinic at Children's. We're used to getting one more thing! Hopefully, this'll be it. I'm not sure I can take "one" more thing.
I don't think I mentioned before that the ultrasound of his legs a week or so ago, showed some signs of blood flow in the main arteries. The clots are still there, but are diminishing. Do you think they can get absorbed by his body at this late date??? Of course, that would be ideal, and probably not realistic, but.........what do the dr's know anyway? They haven't been right so far, so....I remain hopeful. Grant marches to his own drum, so his body will decide.
So far Grant improves daily. He gets around the house without help. Going up the stairs at bedtime are still difficult, but he hasn't been taking any naps lately, so he gets pretty tired at night. We're still doing the magnesium infusions nightly, but we are hoping to get him to pills soon, so he can get that central line taken out. While that's there we always have to worry about infection.
School is approaching. Yikes! I think I will be contacting the Fred Hutch School again for Grant. He can't go back to public school again until after 300 days, which is in December. He really wants to go to school, and is looking forward to high school. He practically missed all of middle school, so it'll be tough for him.
I'm procrastinating, so I better get back to work. Enjoy.

GRANT IS HOME!

2008-08-08T16:58:00.000-07:00

Yep, it's true. Grant is out of the hospital and home at last! He cruised through re-hab in four days. He could have stayed longer, but we all thought the best therapy would be going home! He will still have P/T as an outpatient, but he's having lots of O/T at home. He had to be able to go upstairs before he could come home, but he was determined, and did everything so quickly. We had appt's today downtown at SCCA, and now we have the whole weekend to enjoy ourselves.
We got out last night & Nick F. came over and watched a movie. Had fun with the dog and even his brother Coleman. We are all so thankful we get more time with Grant. We are truly blessed with a miracle. He continues to get stronger every day. Hopefully I can get him to take over this blog again soon.
Of course we have a long road ahead, but this is a big step forward. Take care & thank you everyone.

Grant is Truly a Miracle! He's recovering nicely!

2008-08-01T10:04:00.001-07:00

Sorry for not posting lately. I've been meaning to daily, but life is so busy lately! Grant is a miracle! Every day has shown progress. Today, he's finally been cleared by the insurance to go back to the Rehab Unit here at Children's. Now we have to wait for a bed.....no idea how long that will take.

We've been getting out of the hospital on 4 hour passes every day for the past week or so. First day we went to see Indiana Jones. The next day we also went out for dinner by Greenlake at Zeeks' Pizza after we went and bought new shoes. We had a little going away party for Matt. He went back fishing last Sat. There are only about 3 trips left, so now that Grant is doing so well, he might as well go make some money while he still can.

The past several days he's been just coming home. We brought his computer downstairs yesterday, so he's back to playing online.

He has PT, OT & Speech therapies most days, and he's workin' it! He's walking with the help of a walker. He's really working hard to get his life back. I can see the old Grant coming back everyday. It's truly been a miracle......and boy, are we thankful!

Physical Therapy Continues

2008-07-17T11:26:00.001-07:00

Grant has been doing a lot of PT (physical therapy). Yesterday they got him to the parallell bars, and got him to stand up on his own! I wish I had been there, but, alas, I was working! They are trying to get him on a schedule so he doesn't stay up all night long, and is up during the days. He does tend to be a night owl in the hospital.
Every day he shows progress. Talks more, moves more, etc. He likes having visitors. Several freinds have dropped by. He's back to playing Xbox & the hospital brought him a Wii to play as well. My laptop wouldn't contect to the wireless internet at the hospital, but I will get that working asap, so he can check his email & play internet games.
He still has a long way to go, but we want to be homebound as soon as possible!
Take care all!

Looking forward to seeing the Poochie

2008-07-11T18:35:00.000-07:00

We are hoping to bring Max to visit Grant tomorrow. Grant picked out Max as a 6 week old puppy exactly one year ago today. He was so small you could hold him in one hand. He must have looked like a mouse when he was born. He's been missed while Grant has spent so much time in the hospital since October. Everyday Max will go in Grant's room, and drag out a stuffed penguin, looking for Grant. He often brings one to my suitcase, and sits in it, when I am preparing to go spend the night at the hospital. He's sure a funny little dog and he sure knows Grant is missing.

Grant got out of bed today for PT. They got him standing up. He said his legs felt like rocks. Then he sat in a wheelchair for over an hour. What progress he continues to make. Every day there is progress. Those darn blood clots still cause him tremendous pain, but he keeps trying. He's a very determined young man. The doctors said that the more movement he does with his legs, the more new veins are likely to form. We don't know where we go from here, but we're on our way, wherever it is. Grant is looking forward to a visit from his good friend, Nick, tomorrow. He continues improve daily, and that's all we can ask. Thanks everyone for your posts. We like to read all your messages. Grant did use the computer the other day. He'll be checking his email before you know it!

Happy 4th of July!

2008-07-04T23:10:00.000-07:00

It's very loud at our house on the 4th of July. Coleman missed last year's fireworks with a migraine, but Grant had saved him some of the booty they got at Boom City. So Cole lit them off in our driveway, but the rest of the neighborhood is nowhere near done!!
Everyday Grant does a little bit more. He's sure fighter, that one! He's starting to like food again, so we'll be carting down his favorites to tempt him. The hosptial food does not tempt him a bit. We hope everyone had a safe & happy holiday.

Another week............more improvements

2008-07-01T14:19:00.000-07:00

I've been trying to update the blog, but I must admit it is hard. There are just so many tears. I didn't' really know a person could cry so much or so often. I also can't believe how many people love & care about our family! It really is awesome, all the prayers & positive thoughts that have come our way.
Grant continues to improve. His brain is healing. He's talking more, in full sentences. He's starting to eat!! He had some cake from his dad last night. Leave it to Matt to bring down some squirt guns and plan an ambush against his brother! I think Grant enjoyed that. He knows it's been so hot outside......... and he is stuck in a bed. I'm sure he's wishing he was out there with his friends. He does often look sad, and there aren't' very many smiles lately.......but he's still fighting.
The blood clots are still our biggest obstacle right now. They go from both knees up to the filter in the main vein, below the kidneys. The filter is holding, and there aren't any clots in his arms or lungs or anything. His thighs are still huge, and I know they are painful. He's on IV pain meds all the time, and they have been increasing. The further we get away from the head bleed, the better. We have to weigh the risks vs the benefits of blood thinners, before they can be used again. But, the older the clots get, the more permanent they become, and blood thinners wont' get rid of the old clots, it just keeps knew ones from forming. I don't' believe we can use the TPA again, either, which is what broke up the one in his calf before. Too much risk of a head bleed, which could be catastrophic. So.....we wait. We used to call that "Norwegian Stand-By" on the fishing boat. We wait, and wait. And wait some more.
Matt, Me & Jeanine are on 24 hour shifts right now. Thank God Jeanine has been here (my lifelong friend who lives in B.C.) these past few months. Her presense allows Matt & I a night off from the hospital, and allows me to work a bit. Everyday life has been a challenge, as life still goes on, even when your son is sick in the hospital. Coleman is doing ok. He's working at the movie theatre and loves the freedom of having a car! He finished his sophomore year with a 3.5 gpa, so I can't complain!
Take care all, I will report back soon.....................Kim

It's been a long week.....Grant is still fighting

2008-06-20T22:16:00.000-07:00

Tomorrow the Leukemia & Lymphoma Society Team in Training are running their marathon tomorrow in Anchorage. Go Team!! I believe most of the team ran in San Diego a couple weeks ago, but the rest of them are running tomorrow. These people, who we never met before January, have been an inspiration to Grant & our whole family. They have taken us under their wing, made Grant an honorary member, and have been a constant support to us. The team we are on has raised over $200,000 for the fight for a cure. They are really something, so go check them out at http://www.teamintraining.org/ Maybe they will show them on their website tomorrow. I will be praying from 7am to 1pm for them all to make it with no injuries. Maybe next year we could attempt to walk a half marathon.....???? I know I couldn't run one!! I better start training right now!!

Anyway, it's been a long week. Grant is fighting. There hasn't been much change since my last post. He's still breathing good, his kindeys are functioning normally, and he seems to be pretty comfortable. Although, he was having more pain today, so we increased the pain medication. His speech is improving a bit, but our physical therapy is on hold for now. His legs are still enormous, so there is back up of the blood in there. The blood is making it to his feet, just not back up to his heart fast enough. I pray his body can make new veins, and his blood will quit clotting. We've run out of medical options, so it's up to Grant's body now. God willing, he can make it through.

School is out, so we've seen some of Grant's friends lately. Thanks boys for coming down. It's hard to see him this way, I know, but he does hear us & understands everything. He knows we all love him.

We'll keep you posted. Hugs to you all.

Another setback.........more prayers needed

2008-06-16T17:51:00.000-07:00

I'm sorry to report that Grant got more blood clots in his legs over the weekend. Both of them this time, and again, from knee to pelvis. We cannot thin his blood again, because of the head bleed. The only thing we can do is wait & pray that his body will absorb them, and that his body will make new pathways around the veins that are clogged, to get the blood back to his heart. Meanwhile, his thighs have puffed up, and they are under a lot of pressure. He's again in a lot of pain.
Once again I don't know what to say, or even what to think at this point. I'm so discouraged with this news. I don't know how much more he can take. But, he keeps fighting, so I will continue as well.
Keep praying, he loves you all.

Off to the Rehabilitation Unit

2008-06-10T14:24:00.000-07:00

Welll.....it's another day. We got out of ICU the night before last, when a bed was finally available on the SCCA floor. We are back in the room that we had when we got the transplant. But today, we got good news. They have room for Grant on the Rehabilitation Unit, and they plan on moving him tonight. That must mean that medically he is doing ok, now it's just getting his body to work again. Grant's been talking a little, still very weak. He can't pull himself out of bed yet, but he is able to weakly move his arms & legs. It really doesn't take long for your muscles to deteriorate. He's got a lot of weakness, but everyday he seems to get a tiny bit better. It's going to be a long summer for him, and the workout of his life. I know he's strong, and he is very brave, and that's what will get him through this.
God bless you all for caring. Thanks to everyone for the meals, the cards, the visits, the cleaning and your constant prayers. I dont' really know what I would do without you all. Until later....

On my way out of ICU..........Good news for a change!

2008-06-07T12:45:00.000-07:00

Yes, it's true, they are going to let Grant out of ICU today......as long as there is room on the "floor" (That's what everyone here calls the cancer ward or the SCCA on the 3rd floor)
This past week has shown how strong Grant really is. He opened his eyes about 6 days ago. They weren't very clear & very puffy the first day, but now they are very clear & he's obviously in there. He is starting to talk, but still very weakly. It's taking a while to get the words out, but, oh was I happy to hear some words!! His first words were "I'm thirsty".
He started Physical Therapy last week, and every day he improves. Jeanine & I did the physical therapy today ourselves (as they aren't there on the weekends), and Grant actually got his legs over the side of the bed all by himself. He got his arms over his head as well.
It's not going to be a fast recovery, but I do believe he will recover. I must admit that the week before, I wasn't so sure.
We are well past our 100 days after transplant. We, too, thought we would be over the hump by now. Who would have ever expected all of this to happen on top of the cancer stuff? It hardly seems fair sometimes, but the alternative is not an option, and we will all fight to keep Grant alive & well.
To all our Team in Training folks, you are awesome!! Thanks for continuing to help us out & keep Grant in your prayers. All the food, the cleaning, the presents.........everything! I know some of you have already run your marathon last week in San Diego, and I can't say how proud I am of all of you! You all do these marathons, and raising money for the cure, out of the goodness of your hearts & my hat is off to you all!! Good luck to those who are running in 2 weeks! I hope Grant can someday do the same thing you are doing. If my knee wasn't so bad, I would consider it myself! We will be there next year cheering you on!!
So............... here's to another week of recovery. Thank you ALL!

A Message from Mom

2008-05-30T19:48:00.000-07:00

Well...I must admit that I'm the one who has been writing for Grant the past couple of months. Grant really wasn't up to it, but I wanted the blog to keep going. He hasn't been able to answer anyone's messages lately, but he does like getting them!
This past week has been the hardest week so far for Grant. The fluid in his head has caused all sorts of problems. The blood clot is also a big problem. His brain has been pushed towards the right side, and is pushing on his brain stem. We need the fluid to drain, and the clot to absorb into his system, so we can avoid another brain surgery. It will take several weeks for the blood to be absorbed, if it does, so all we can do is wait. If they remove the clot, they will also remove some of his brain cells, which is never good. It's near the temporal lobe which runs speech, language, memory and other things.
Right now Grant is not able to wake up easily. He's mostly just sleeping. It's almost like he's unconcious, but he does respond sometimes. He's fighting for his life right now, so please, everyone, keep praying & sending positive vibes his way. It hardly seems fair that he could beat 2 cancers, go through a bone marrow transplant (which still seems to be working) and end up with fluid & blood on his brain. He's the bravest person I have ever known. He is fighting, I can tell. No matter what, it's going to be a long recovery for him.
I, of course, am a mess. Either Matt or I are at his bedside at all times. My best friend Jeanine, and Grant's buddy, is also here helping us out. We all just love him so much and want him to get better. Thanks everyone for being there. Will post again as soon as I can.

Still here & fighting

2008-05-27T11:21:00.000-07:00

No easy way to say that the bleed in my head was not so easy as predicted. I had a tube drilled into my head to drain the fluid from collecting next to my brain on Sunday. My headaches got worse, in fact, they were talking about taking off part of my skull and taking out the clot. With that comes too many complications, so we opted for the less invasive surgury.
So far, so good. Dont' know really. I've been back in ICU, but possibly getting out of there, back down to the 3rd floor today. That is if they have room. It's sometimes hard to get a room down there. Why is there so much cancer?
My mom and Jeanine have been taking good care of me. My dad is home from Alaska for extra time to help me get better. I miss him when he's gone, but he has to go fishing when it's time. Hopefully I'll get better soon, so he can go without worrying about me all the time.
I'm on day plus 110 from the bone marrow transplant. I thougth I would be better by now, but I guess this stuff that's b een happening is not related to that. My white blood cells are still high and I dont' have too m uch graft vs host desease.
Thanks to my Team in Training for all the support to my family. Some of them are running soon, like this weekend, in San diego. Good luck on a whole or half marathon. Wow, I wish I could run a marathon. Maybe someday.

My hospital stay never ends!

2008-05-22T18:17:00.000-07:00

well.....I'm back in the hospital again. Since my last post, I got out last Sunday, was back in by Monday. I have a terrible, terrible headache and I'm sick all the time. I have a bleed in the head, probably from the blood thinner to disolve the blood clot in my leg. I've been having a lot of headaches, so there is something else going on, but nobody knows what it is. My kidneys are being stupid too. They are only working at about 50% right now, but they are getting better. All the drugs they give me are bad on the kidneys, so they've taken me off those, and are trying different ones. Will this ever end? It seems like I get all the side effects plus more that they didn't even think of.
At least I can finally think, and it doens't feel like my head will explode. It will take weeks for the blood to be absorbed into my body from my head, I hope that doesn't mean the headaches will last weeks too. It's getting discouraging, but I keep going, one day at a time.

It's been a long month

2008-05-11T14:12:00.001-07:00

Well, I've been in & out of the hospital a few times since I last posted to the blog. I've been so so tired all the time. I got an infection twice, had a fever so I had to go back into Children's Hospital. I was there a week, got out for about a week, then back in again for a week. I only made it home for 2 days, before I had to get an ambulance from SCCA downtown to Children's again. I'm in ICU now because they found a big blood clot in my leg. It goes from my knee to my groin area. I had to have filter inserted through my neck, jugular vein, over the main vein, so that if the clot let go, it would not get to my lungs or heart. Now I'm getting medicine called TPA to try to disolve the clot. I'm going to get an ultrasound done later today to see if the clot is smaller. If it is not, then they will go in with a tube and try to put TPA right by the clot, which should dissolve it. I'm just glad they figured out why my leg hurt so much.
It feels like everything happens to me. I'm sick and tired of all this stupid treatment, and cancer in general.

Back out & doing great

2008-04-19T20:52:00.000-07:00

My mom usually helps me type, but she' s been so busy with work that she hasn't had time. Tax day has come & gone, thank goodness. With dad gone to Alaska and mom so busy with taxes and me with all my appointements, it's been pretty busy around here. I got stuck in the hospital for one week. My WBC came back all in one day again, so we "checked-out" that day. I've had a bunch of infusions of antibitics, and antibodies since then. But that's all been done at the SCCA downtown or at home. Not the hosptal.
The doctors say I'm doing great, but I feel pretty tired still. When I got out of the hospital I was sleeping all the time. It's a little better now, but I still feel tired a lot.
Cole drove me to the movies tonight. He got us a free movie at where he works. That's pretty cool. I have to stay away from crouds, but it wasn't a busy movie and we stayed away from all the people. I have to be able to do some stuff. I really want to go to a Mariner game, but it's too crouded there. I got tickets and everything, but I dont' think I get to go. I guess I have to stay out of the sun too. That's going to be hard during the summer months.
Anyway, I'm glad to be free again. I like my comfy new bed much better than the hospital beds.

Here we go again Back to Children's

2008-04-06T20:07:00.000-07:00

Here we go.....I got an infection, so had to go back in to the hospital. I was hoping to be out already, but my white blood cell count is down again, so...............we wait!
Frankly, I'm getting pretty tired of waiting. I finally had a friend over to spend the night on Wed, and got a phone call from the P.A. (physition assistant) at 9pm to tell me something grew, so I have a bacteria infection. Probably in the Hickman line. Back to the nightmare.
I guess we were feeling pretty confident, since everything was going so well. Who knows what this all means, but I sure hope those wbc's will do there thing, and get with it. I just want to get back to normal, have some energy to play outside, and get on with my life. This is getting old.
My mom has been working like a mad woman, trying to get everyone's taxes done. My dad went to Alaska to go fishing and bring us home some money. My cousin Diana has been driving me a round. She's here from Utah. Jeanine's been here from Canada the past couple days, so my mom can work. We'll all just be happy when I get out of here!

Spring is here

2008-03-26T11:15:00.000-07:00

I'm looking forward to Spring and some sunshine! I'm still out of the hospital!! Although I did have to go to Childrens' last night for an IV antibiotic infusion, but I only stayed for 3 hours. I got some virus in my stomach (I dont' feel a thing) so I need antibiotics twice a day by IV. My mom & dad have turned into nurses, so they will do that at home from now on. I still have to go to lots of appointments but at least I get to sleep in my own bed. And its a good bed. My mom & dad bought me a new big bed while I was in the hospital, so it's really comfy.
I've been playing lots of video games on my computer and xbox live. I know I have to start doing schoolwork soon. I got a couple new tutors, which start tomorrow. Its still hard to focus so its hard for me to do school work. But I really just want to go back to school and be normal again. Hopefully I can catch up and be back with my friends soon. And, hey, Austin, I would love help doing my homework!!

HOME SWEET HOME

2008-03-14T08:33:00.001-07:00

Yep, I am officially home! It was my 2nd night in my own bed, and I liked it! I've had 2 days of appt's in downtown Seattle at SCCA, but, I get to go home after! I like it much better. I'm feeling better every day. Thank you to all who helped me, wrote to me, visited me, prayed for me, and everything. I wish I could go back to school, but, not until Dec 5th. That will be my 300 day marker.

The END of my hospital stay is near!!

2008-03-09T10:26:00.000-07:00

Yep, it's true. I believe on Tues they are going to let me outta here for good. I've been getting 4 hour passes for the past several days to leave the hospital during the day. I've just been going home and resting, watching my dvr'd shows, but it's way better than the hospital. I get another 4 hour pass today at 3-7pm. My mom got me a brand new bed the other day. It's really nice. Brand new sheets and everything! I'm going to bring my xbox home today so I can hook it back up to LIVE. LIVE never did work at the hospital. The IT guy never did come, even though we asked like 5 times. Oh well. I can see the light at the end of the tunnel now!

I do have some graft vs host desease (gvhd). My hands were really pealing bad, and they were burning for several days last week. They gave me some kind of steriod, which has stopped it somewhat. I'm pealing other places too, but the hands are the worst. I dont' know what happens after I leave the hospital. I know that the 1st 100 days of the graft are important, and I have to be within 30 minutes of SCCA, that's downtown Seattle. We can make it there in 29 minutes using the carpool lane, so we are ok living at home. I'm really glad we don't have to move. This whole thing would have been so much harder without my friends coming to visit and my family being here for me. Every weekend since Oct 11th my uncle Ted, and my "auntie" Jeanine has come to spend the night with me. They were a nice change from my parents. I can't wait to get out of here, and off the pain medication, so I can get back to feeling normal again. It's still going to be a long time before I can go back to school. They said 300 days, so that would be Dec 5th. The 100 days is May 18th.

Anyway, I do not know the future, but I am looking forward to this afternoon, when I get to go play with my little dog, MAX.

Team in Training - Leukemia & Limphoma Society

2008-02-28T08:58:00.000-08:00

There are a bunch of people who are running a marathon for cancer, and they are called the Team in Training. My mom got me to be an honorary member. It was actually her friend Amy who gave us the trampoline last year who runs and is part of this society that got us to sign up. Anyway, Talin, Mark and Grant came by yesterday to cheer me up and brought me a signed Mariner Baseball. Amy, Kim and Rick came to our house the past 2 weekends and cleaned and made us dinners. That was very helpful for my parents, since they are so preoccupied with me being here in the hopsital. All the *LLS team has been reallynice to us. If you have time, go check them out. They are running in Anchorage or San diego sometime in June. I can't wait to get out of here and go see them train. I iknow they are having a breakfast at gaswrorks park this weekend. They are raising money for cancer research. We n eed a cure.

Today is my grafting birthday

2008-02-28T08:54:00.000-08:00

today my WBC is over 1500. when they are over 500 for two days it means I am engrafting. I think that means the bone marrow is working. I hope it does. *I'm really looking forward to fresh air again. I'm back in isolation because *i had a ru nny noise. If nothing "grows" I will be out of isolation on Sat. I dont' like isolation. I can't walk around, which is the only thing there is to do here.
The boredom is getting to me.

White Blood Cells Have ARRIVED!!!

2008-02-27T17:01:00.000-08:00

On Monday (3 days ago) I got WBC of 68, Tues was 209 and today it's over 600!! The nurses said it could go up and down, but so far it's only up!! I'm off some of the pain medications finally, and looking forward to feeling none. The sores are getting better. I hope they go away fast I'm tired of pain.
Most patients get some sort of Graft vs. Host Desese. So far I have a bunch of little red spots, but they are giving me steroids for that. I hope thats not the bad kind. I'll have to ask.
I'm really tired, so I sleep a lot. It seems like I've played every game, and watched every dvd. It's very boring here.

Bald is Beautiful

2008-02-22T19:07:00.000-08:00

My hair fell out a few days ago. My mom misses my hair. I've had the worst pain I've ever had the past 2 weeks, but it's finally getting a little bit better. The dr's told my mom today that my white blood cells should be kicking in in about 4-5 days. Hopefully they aren't exagerating because I can hardly wait. Once they kick in the sores in my mouth will go away, and so will the pian. I've been sleeping alot the last few days. It's hard to sleep in the hospital because the nurses always want to do something, like take my blood pressure or my temperature, or the pumps beep at me. It's anoying.
I'm looking forward to seeing Nick tomorrow. He's coming to visit. I haven't really seen too many people lately. I think I'm up to visitors now so feel free to come see me. I'm out of isolation too, so I can walk around the ward.

Waiting, waiting and more waiting. Pain, pain and more pain.

2008-02-12T20:12:00.000-08:00

The transplant went ok. The 4 bags of marrow arrived in a little cooler. It took 9 hours to infuse through the line. It is NOT a surgery. It was a surgery for the donor. They took out the 4 bags of cells from his hip bone. Now they are in me floating around in my blood, eventually the receptors in my bones will call the new cells and grow my own new ones. My blood type will change to be the same as the donor O positive.

I've already got a whole lot of mouth sores, that hurt like hell. I've been in a lot of pain. Sometimes its really bad and I push a button for more pain mediccation. It helps but not that much.

Jeanine came down to see me from Chilliwack, BC. She's kinda like my second mom, but better. She never makes me clean and she can fix my network problems. We have an IT person coming tomorrow to hopefully get my xbox LIVE work.

Gotta go get vitals

Today is the day - Bone Marrow Transplant Day

2008-02-07T08:47:00.000-08:00

It's finally here. The day we've been waiting for. I don't know whether I should be scared, or relieved, or what. I've heard the actual transplant is no big deal. It's like getting a blood trnasfusion. I think it's afertwards that won't be so fun. We don't know what side affects I will get. I hope they aren't too bad. I'm already getting mucisitis, which is sores in the mouth. I got those really bad when I had radiation in June/July 2006. *i hope they aren't as bad as that this time.
Thanks everyone for the cards and coming to visit yesterday. *i do like visitors. My mom is bringing me vanilla cake with rasberry filling today. *I hope I can eat it. I'm not eating much anymore, since I feel sick most of the time. Sleeping a lot too. It gets very boring here, so *i play videos alot.
Have a Happy Day!

I'm back in the Hospital - 1/2 done with radiation

2008-02-02T12:01:00.000-08:00

well....i'm back. I had to check in to the hospital right afer my first radiation on Thurs. I'm trying to get xbox live to work, but I need a DNS Server number, and I dont' what it is. Hopefully Jeanine will be able to help me, or maybe I can get and IT person from Children's to come help me. I need two more sculls for Halo 3. I got it hooked up to the network, but now I need a DNS server, and I wish i knew whatg that was.
I had radiation this morning, at least this time I didn't get sick. I got pretty sick last night. I have to go over to the UW for radiation, so my mom gave me a ride today. I have to go back at 4pm for another round.
Nick Fredette is coming down today to play some games. Lisa Hill is bringing me my favorite pie, strawberry-rubarb. Jeanine is coming from Canada to spend the night tonight. My uncle Ted will be here soon. I like them to stay more than my mom or dad. They get boring sometimes. Too many questions.
Gotta go, my pie is here!!

New Date Set

2008-01-26T16:09:00.000-08:00

Wellllll....January 31st I start total body irradiation. I have radiation 4 days two times a day starting Thurs. Yucky chemo after that. Bone Marrow Transplant date is set for February 7th. I have to check in the hospital right after my first radiation treatment on Thurs at noon. They say I'll be in the hospital 4-6weeks. So that means 6-8 weeks probably.
This is my last weekend home. I ended up back in the hospital again last weekend because I had a fever. I only had to spend 2 nights, but with all the pain I was having, it was where I needed to be. I had a couple procedures last week two days in a row, and I was in a lot of pain afterwards. I'm okay now. I hate to be in pain. It's not fun. I'm still on IV antibiotics, but at least I'm at home. We are going to have a game night tonight. I hope I can beat Coleman, because he always wins, and then he gloats!!
I hope my mom brings my computer & xbox again the first day at Children's then I won't get bored out of my mind!
Wish me luck. I think I'm gonna need it

Still at home & feeling good - Transplant Day Set for February 8th

2008-01-15T16:30:00.000-08:00

I have had a bunch of tests since I got out. I'm now going to Seattle Cancer Care Alliance for most of my test, and then I'll do the hopsital stuff still at Children's Hospital. So far they say the Transplant will be done around February 8th, since the donor needed an extra week. That makes radiation start aroudn Feb. 1st. Not looking forward to that. Dr's said it would be 4 days of total body radiation two times a day. Hopefully I can do that and still stay home. Then its 2 days of chemo and that will be done in the hospital. Then stem cells or bone marrow, they still don't know what one I'm getting. It's all kind of wierd and sounds scary, but I have to do it. I dont' really have any other choice.
I haven't been doing much. It's nice to be home and in my own bed. I got a new tutor today from my school. She's going to help me get some work done.
I mostly dont' wnat to get another infection which will put me back in the hospital before I need to go. I think the next stay will be the longest one yet.

HAPPY HAPPY DAYS!! I'M FREE-----I'M AT HOME!! & the Seahawks won today!

2008-01-05T20:34:00.000-08:00

I woke up this morning & guess what? My ANC was 240. All at once. Yesterday it was zero and today it's over 200, so we packed up & blew this popsicle stand! Got the computer back up and running in my bedroom at home, so I'm good to go.

GO SEAHAWKS!! What a great game today. My mom packed up like a crazy person during the game, but got done in record time. My grandma dama came down too. My dad & Uncle Ted got to go to the game today, and as soon as it was over they were here to h elp take the lsat load to the car.

Mom brought Max down to the hospital and he was very happy to see me. He's a crazy dog. I missed him alot.

I can't say enough about FRESH air. It felt good to get out of the hospital after 46 day s. It just goes to show you that everyday is a new day, and you never know what will happen next. I plan on enjoying this day, and tomorrow too.

Thanks everyone for visiting, and thanks to all my nurses for everything! I know I'll be back soon enough, but I will enjoy the time I have at home alot.

It's a NEW YEAR

2008-01-04T10:28:00.000-08:00

Happy new year. My new years reslution is to get this bone marrow business over with. Still no white blood cells yet. I have to get another biopsy to see if my bone marrow is working tomorrow. Obviously its not working, or I'd have wbc's already. I hope this one doesn't hurt as much as last weeks. I have an appointment at the Fred Hutch place on the 8th, but I dont' think they are going to let me go out. My parents will have to go without me. I like it better when I get to hear what these doctors say, so I know what's going on. The waiting is hard. But I do have my computer and xbox so that helps me pass the days here. I do like the nurses, they are all really nice to me. I have a teacher named Lisa who has been helping me too, and she's real nice too.

I have a new Cousin - his name is Cameron

2007-12-30T17:33:00.000-08:00

On December 28th at about 8am, my cousin Cameron entered the world at 8 pounds 8 ounzes. His lucky number will be 8 I guess. My mom went to see him at the hospital, here is a picture. Congradulations to my Uncle Erik and Aunt Becky. I can't wait to meet him.

Still Waiting for White Blood Cells

2007-12-29T09:29:00.000-08:00

The wait seems forever. I had my 14th Birthday here on Dec 26th. My mom suprized me with a birthday party. She had to keep it fairly small, but I was suprized. I had vanilla cake with rasberry filing, whic h was good, then we had pizza. I got lots of presents. Again! It' s really not bad having a birthday right after Christmas, because I have 2 days of presents! My mom gave me 14 pennies, nickles, dimes, quarters, fifty cents, dollor coins, dollor bills, 5 dollor bills and 10 dollor bills. As you can see I was quite happy about that present! We're gonna load that money on a visa card so I can go shopping from my computer here at the hospital.

I had a bone marrow biopsy on the 27th, so now my bottom hurts. They extract bone marrow out of the bone, and they took a little piece of my bone to look at. Nothing new, not a lot of activity in there. The doctors did say that was fairly normal since I had two back to back chemo's. I've had no white cells since 11/30. I hope this doesn't stop my transplant. I know I have to have a certain amount of cells before they can do it. I guess we wait and see.

If you feel like it, come for a visit.

Merry Christmas Everyone!

2007-12-25T23:38:00.000-08:00

Well, al in al I had a good day. Santa visited me and gave me presents! My nurses were all super nice today and my mom and dad gave me lots of stuff. Cole came down to open presents together. We have to open some presents at the same time because we often get the same things. I saw the Adams famly yesterday and played Apples to Apples. Cousin Alicia won! My uncles & grandma dama came to see me tonight. Mom brought down dinner, but I really liked the scaloped potatoes from my grandma dama. I did get a whole strawberry rubarb pie from granpa Jack the other day. Food is starting to taste better.
I still don't have any white blood cells yet. What's up with that? I hope everything is going to still work out for me and I can get out of here sometime soon. I'm not really looking forward to spending my birthday here tomorrow, but I guess I got to.

No White Blood Cells Yet

2007-12-22T21:30:00.000-08:00

Three days to go until Christmas, then my birthday, and I don't think I'm gonna get out of here. It seems like I should have some sign of white blood cells by now, but, noooooooooooo, not yet. I've been getting some visitors, which is nice. I do like visitors. My friends came down today. And my mom made a Christmas tree on my wall. Here's a picture. I hope Santa remembers where I'm at! I'm sure "she" will!!

My Uncle Ted spent the night last night, and Jeanine is here tonight. I've been making some Christmas presents. Hope everyone has a happy holiday. Thanks to all!

10 Days until Christmas

2007-12-15T14:48:00.000-08:00

I heard one of the nurses call my confinement ANC Jail. That's what it feels like. I'm in Jail. I still have zero white blood cells. Any day now they should start coming back, then I'll get out of jail.
Some of my neighborhood friends came to visit me yesterday. They cheered me up some. It's hard to stay cheery when there is no end in sight yet. We had pizza and played some games. Watched some funny videos on UTube.
My mom & dad are trying to decorate the house for Christmas this weekend. Hopefully I'll be home to see it soon. I do love the Christmas lights. It's my dad's turn to pick out the tree, so he's doing that today. My mom's friends are coming over tomorrow to help decorate. I hope Max stays out of the stuff and doesn't chew up everything! I can't wait to see the puppy dog when I get home.

Completely BORED out of my mind!!!!!!

2007-12-02T17:15:00.000-08:00

Hi All.
The chemo part is over.....now we wait. I did end up in ICU for about 24hours last weekend, because my blood pressure dropped so low. I hate ICU. They don't even let you get up to pee! I was never so happy to see my room on the 3rd floor. Then, we had to move rooms, which was a pain. We are back in the room we were in last time. It's kinda cramped, but I still have my computer & xbox, so I'm good. I'm feeling ok, but I don't seem to have much energy. I've been sleeping a lot lately.
I made some christmas presents with Jeanine today, and now I'm off to help the nurses paint decorations on the windows.
Thanks Austin, for the candy tree. My nurses like it too!!

November 22, 2007 - Happy Thanksgiving Everyone!

2007-11-23T00:00:00.000-08:00

It's Thanksgiving here at Children's Hospital and I'm roaming the halls talking to the nurses. I like talking to the nurses. They like to listen to my stories and even help me with homework! I got Thanksgiving dinner from Uncle Ted, via my dad. I got pie from Grandpa Jack via my mom. I also got a pie from the kids at Chef school, one of my classes at school. Wish I could have been there, but thanks for making it for me! I loved it. I got to eat it all by myself! My mom spent the night last night, so my dad's spending the night tonight. I will definitely be up later than him. I'm feeling okay so far. I even had the nasty chemo today, centeribine, or something like that. I guess my body is just getting used to chemo, or maybe the drugs they give me for nausea are working. I dont' know, but I'm glad.
Thanks to everyone for all the cards, gifts, emails, blog comments, etc. I do appreciate all your good thoughts.

November 21, 2007 - Back to the Hospital

2007-11-22T23:59:00.000-08:00

It's that time again.....back to chemo, and another month in the hospital. The day before Thanksgiving! I'm hoping I get out before Christmas this way. It took 32 days last time, so that would put me at about Dec. 22nd or 23rd. I really want to be out of here by Christmas. I want to see Christmas Lights and Christmas Trees. I love presents, of course, but mostly I just want to be in my own house. I like seeing my friends too.
I was out for 9 days, but it sure flew by. We went out for dinner to Buca de Bepos, and had Thanksgiving dinner on Sunday with my Grandma Dama, Uncles & Aunts. Molly was there too. I went to 3 movies with my brother & my dad. Nick & Tristen came over and played video games with me. Cole got Rock Band, and I got Assasin's Creed Xbox games, so we had fun playing those. I brought mine with me to the hospital and played most of the first day. Then I got bored and went to harrass the nurses!! They don't seem to mind talking to me. I do like roaming!

November 12, 2007 - HOMEWARD BOUND!

2007-11-13T14:55:00.001-08:00

Haliluya! I got to leave the hospital today & sleep in my own bed tonight. It is definitely much better at home. I finally got 288 white blood cells. It went up almost 100 since the day before. It seems like it took forever.

We still have appointments. On Tues we have to have a blood test done, Wed we go to the clinic at Children's Hospital to see if I need palatelet transfusion. Friday I get another bone marrow biopsy, then they will figure out what we do after that.

I don't like living with this cancer. I wish I didn't have it, and I was back at school. Even school is better than this.

I got to meet some Seahawks at the hospital and a Sea Gal. Here's a picture

A donor is found!

2007-11-09T07:43:00.000-08:00

Well, there looks like there are several matches for bone marrow for me. That's good, I guess. Now I just need to get my white blood cells jiving again. I need a count of 200 or greater to leave the hospital for a few days. It was 70 yesterday. Normally your white blood cells are over 5,000, so I'm not asking for a lot here............just 200.
I really need to get out of here and smell fresh air. I will only get a few days at home, then I have to come back and do this all over again. One more month long chemo, then my bone marrow transplant probably in January. It takes 10 days conditioning to get ready for a bone marrow transplant. They will use chemo that will kill the bone marrow completely, and possibly some radiation, brefore I even get the transplant. Does not sound like much fun to me!
I guess I can't go to school for a year after a transplant. Holy smokes! That's a long time. I hope I can still pass the 8th grade, so I can make it to high school someday. Maybe 1/2 way thru 9th grade.

Today is Halloween at SCCA

2007-10-31T21:55:00.000-07:00

Last night I stayed up until almost 4am. I liked talking to all the night time nurses. There are a lot of ones from last year at night. Keflam, Todd, Jake and Andrew are all really nice. They talk to me when I'm bored. I got to hand out alot of Halloween candy. I even had a piece of pizza.

There was a Halloween party here today. I had fun. The nurses dressed up as butterflys and the residents and fellows dressed up as Dr. Mathews. It was pretty funny. I'm going to try to post some of the pictures if I can figure out how to do it. I got my face painted. They painted my eyelids with eyeballs so it looked like my eyes were open when they were actually shut. I'm going to play tricks on the nighttime nurses tonight. See if they notice.

Waiting for a Bone Marrow Match - October 29, 2007

2007-10-31T21:29:00.000-07:00

Today I find that my mom, dad or brother are not a match for my bone marrow. Now I wait for a match from the bone marrow bank. I'm still in the hospital from my first chemo. They said I'd be able to go home for a few days after about a month. It's only been 18 days so far, but it feels like a lot longer. It will take 1-3 months for a bone marrow transplant, I dont' really know for sure. Everyone says a different thing. I just have to go with the flow because I dont' get a say in anything.

While I'm waiting, I have to do these one month chemos. It's no fun that is for sure. The actual chemo takes about a week and it makes me sick. I take lots of medicine to help with the sick feeling, but it makes me very tired. Once that's over I feel ok. I'm feeling pretty good right now but they tell me I have "no counts." This means I have no ANC (Absolute Nutrafil Count) or white blood cells in my blood. As soon as my counts go over 200 I can go home for a few days. I hope that means more than 2 days, but I bet it doesn't mean a week. I want to see all my friends while I'm at home.

I guess I can't go to school for a long time. I don't really want to miss that much school. I was just starting to feel like I was caught up from the last time and now I am behind again. My mom says we will try to get some work, but I'm not really sure that is going to work.

Leave a note if you read this. I'm just getting use to this blog

Secondary Leukemia Diagnosed

2007-10-22T22:55:00.000-07:00

Oct 5th, I went in for my 9 month scans. The scans turned out ok, but the blood didn't. The next day I had a bone marrow biopsy to confirm that I have Secondary AML (Acute Myelogenous Leukemia). This means I got leukemia cancer from my original bone cancer treatement. This is pretty rare, but not rare enough for me.
I got that weekend off, which was good because it was Coleman's birthday party. Then, by the next thursday I was in surgery getting a hickman line inserted in my chest. By friday I was getting chemo again. Totally different kinds than the last ones that gave me cancer, but with more side effects. With this chemo I must stay in the hospital until my white blood cell count comes back up. This could take up to a month or more. What I really need is a bone marrow transplant. The chemo rotted my bone marrow and the best way to fix that is to give me new bone marrow.
My brother got his blood tested, and it takes 3 weeks to find out if he's a match. He would make the best 'natural' match, but the chances are only 25%. If he isn't a match, then other family will get tested, but we will probably have to go to a International Bank of Bone Marrow Donors. It could take months to get a transplant, and several more chemos before it's available.
In the meantime, I'm done with the first chemo, and I'm bored in the hospital. I really do not like staying here day after day. It's really boring. I can't even leave the floor.
Today, my friends Nick & Daniel came to see me. Thanks for the donuts guys. Really enjoy those!

August 2007 to Alaska on the Cape Decision

2007-10-22T22:21:00.000-07:00

Once again, I got to travel through the SE islands of Alaska with my Grandpa Jack on the Cape Decision. We caught lots of salmon and crab. Evan and his dad were on the trip too. Nice to have them aboard.

Grant does Disneyland & California Adventure

2007-10-22T21:17:00.000-07:00

On June 2nd, Mom flew me & my brother down to Anaheim, where she was at a convention. We got to stay in the Disneyland Hotel for 3 nights with our favorite Utah relatives, Diana, Savanah, Brittany, Aubrey and Jeanine from Canada. We stayed in a suite near the top floor. It felt like we were high in the sky. We hardly had any sleep. We went on all the rides at the California Adventure. We went on the River Ride 9 times in a row!! We all were absolutely soaking wet. I finally went on a roller coaster upside down. It went really fast and was so fun we went 3 more times. It was pretty warm out compared to the Seattle rain.

Grant "Makes a Wish"

2007-10-22T21:10:00.000-07:00

In February 2007 I got to "Make a Wish". I wished to fish in the Florida Keys. What a blast me and my family had. 4 fishing boat charters, lots of fish, nice hotel, shopping at the Worldwide Sportsman, drinking pina coladas at the Tiki Hut, and fun in the sun. And the gators. What can I say about the aligators? I find them facinating. We went to an aligator farm, where they raise them to use their skins.

Grant Diagnosed with Ewings Sarcoma

2007-10-22T21:04:00.000-07:00

January 25, 2006 I was diagnosed with Ewings Sarcoma Bone Cancer in my left jaw. I went through 42 weeks of chemotherapy and 6 weeks of radiation. I finished treatment in December 2006 right before my 13th birthday. I got pretty sick and didn't feel good most of the time, but I got through it.