Festival with tree, ends up Chemo round 3!

Don't you love it when things rhyme? I apologize for not posting about the last two days of round 3 but the hotel Internet and I did not get along. First two days we were friends then after that not so much. He got a nice distraction on Friday when 4 gorgeous ladies clamored for his attention. Or if you want the bare facts we picked Courtney, Avery, Adalynn, and Aftyn up in North Bend and dropped them off at the airport in Seattle.

Then day four was fast because we had to check out of our Chemo hotel before treatment and then find the new hotel and get unloaded before the "troops" came. Grandpa Kent, Grandma Louise, Michael and the rest of the kids came over Saturday to attend the Seattle Children's Hospital Festival of Trees on Sunday. Except for walking a few unnecessary blocks in high heels (fancy hotels don't display their names like say Motel 6 does) it was a neat evening. This is a fund raising event for Children's Hospital and we were excited Jackson got to be a part of it. Although; it was another moment that made me pause and think(you all know how hard I avoid THAT!). I couldn't help but contemplate that MY KID is sick, my kid is sick enough to be a story for a hospital fundraising event. I cried when I saw his tree and story sign. Then I started reading the stories of the kids whose trees were next to Jackson's, and I had to stop because my vision was too impaired. Kids---hurt kids sick kids, it's too much some days.







For those of you who worried that all the attention would make Jackson think he is a "ladies man" don't worry, Maddie put him in his place!! I wanted a picture of Royal City's very own "red ribbon" (patients had red ribbon jingle bell necklaces, siblings of patients had green necklaces)patients but she was having second thoughts about the boy she would forever be linked to in that photo op! Between Maddie and Jackson we are paying enough to get a Royal City wing of the hospital---I'll invite you all the ribbon cutting ceremony!


Last but not least, because of the holiday tomorrow we had Jackson' blood drawn today. ANC-900 (low) WBC-3.0 (low) HCT-33.2 (low) PLT-269,000 (normal range) Any takers on how many day's of school he will miss in the next 3 weeks? Jackson said, "just quit drawing my blood and you won't have to worry about it Mom"! Well, why didn't I think of that!

Round 3 Day 2

I had to drag Jackson out of bed at 9:30, he was muttering about calling the Commissioner of Seattle to complain about the non stop traffic noises all night. Hope he can find the number. His stomach hurts, and it looks like he has a sore on his tongue--lets' hope it doesn't get worse because right now it doesn't look too bad. I drug him to the mall so I could get some jeans that actually fit him and low and behold he still doesn't like to try on clothes or shop--he never has but I was still hopeful today. We had the "fun" nurses in Chemo today and I was asking them if they choose to work in Chemo and they all said "yes", they love it. I asked them why and they all basically said that kids are so hopeful and tough in Chemo. When you work in other areas of the hospital, like day surgery or short stay, the kids are whiny and grumpy because they obviously don't feel well, and they don't know how to deal with that. But the cancer kids are used to being tough and so positive. I am just so grateful for fun nurses that make the kiddos days better and more worth remembering.

Day 1 Round 3

The best thing about today is we are over the mountain pass! I never look forward to winter driving---and today I clearly remember why, sigh. Oh well, only 3 or 4 months of bad pass weather right?!
Oncology was way backed up today--over an hour wait just for labs. But we made it through the long day for the week. We saw the Endocrinologists, had lab work, bone age scan, saw the oncologist and had Chemo. His ANC was up to 1,143 and his WBC 3.7. Both a little on the low side for starting Chemo but the HCT and PLT were in the normal ranges. He picked to go to "Red Mill Burgers" for dinner tonight. You may remember it from my wedding anniversary in April--you the date when we ate there and then the GT lost it's transmission in the Target parking lot! It was yummy and the GT cooperated this time! Jax is tired, and sleeping, and has a mouth sore, but still eating and drinking fine. Tonight Sammi had a Young Women's' Evening of Excellence Program and she was supposed to play the violin for it but apparently the "e" string snapped, and cut Courtney's thumb and provided Sammi with a way to play the CD of her music instead of a live performance. Zoe cried to me on the phone tonight, broke my heart a little, if you see her tomorrow give her a hug from her Mom please. Thanks for the prayers.

Make a Wish First Visit

The brave women who found Royal City in the dark and then entered the Noftle Zoo at their own free will.

Turns out you can buy my children's love!

Last night we got some very welcome visitors--Tara and Lori from the Make A Wish Foundation. They brought a gift for each of the kids, which means they have Zoe's undying love and devotion. We filled out paperwork and they helped Jackson decide on a Wish and an alternate wish. They also got to see our kids pull out all their tricks that they reserve for new blood. Each of them had to choose which of Zoe's snowglobes were their favorite, Sierra displayed her talent of gluing herself to peoples sides and cuddling up, Jax and Carter showed how well they wrestle in the middle of the living room and Sammi pulled out her best one liners, and mentioned how if SHE had a wish the i-phone would be looking good in her hand! After they left Sierra wrote a story about "her life with Jackson" her words not mine and then told me I could print it in my blog!! So here it is spelling errors are hers--I can't take credit for those.
em>So I have a sibling Jackson he was diegnoast with cancer when he was 4. Now he is 14 and he is now having his second time of chemo. He is having a hard time butt I always remind him to go forwerd. He was cosen to have a tree at the hospitles festible of trees and he gets to have one wish. He can be all sorts of souper heros. He can go places like diny world or land and a foot ball game, florida, calafernya and thats not all of it. He can also viset somewon. We try as hard as we can to get him safe.

After Zoe heard me tell Sierra I would publish her letter on the family blog she ran off to Michael to dictate her letter:

So I have a sibling, Jackson. It is hard with four more siblings. There is Sammi, Jackson, Carter, Sierra, and Zoe. I am trying to remind him, don't let your heart fall. Keep it glowing. I am trying to keep this locked in my heart.

Pretty good stuff--I will try to remind Jax to keep it glowing every day too!!

New Scores....

Before she cries plagerism--I admit Brenda's comment on the last blog inspired the title of this one! His ANC is 800, so bye, bye, buddy get back in school. I am wondering if the next 28 days will have counts below 500 that keep him at home. I say that because before he always had worked his ANC back up to the 2000 range when it was time for Chemo again---don't think he'll get that high by Wednesday though. I guess time will tell---it usually does. Thanks for the prayers.

How low can you go?

Jackson can go low--too low. His counts landed him some isolation at home. He had his blood drawn Thurs. as usual and Thurs. night the oncologist called us at home (unusual) to say the lab had called him to let him know Jackson's ANC was in the critically low range of 200 (normal above 1000 -- below 500 out of school and public places -- under 200 possible hospital stay). This seemed strange to us as the boy had gone to school and basketball practice and was acting normal. So Doc. told us to run his labs again tomorrow to see if it was accurate. It was in fact accurate, labs below 500 again(400 to be exact) on Friday a.m. meant we had to pull him out of school on Friday, watch the Knights lose the playoff game from our Van on Saturday, and Jax missed church on Sunday. We will draw blood again tomorrow and I will run the sample into Moses Lake to get immediate results and hopefully the boy will be back in the game tomorrow. Pray for him. By the way Jackson thinks we are weird to keep taking blood from a kid who has low counts anyways!! Chemo this week if the counts go up--can you believe it's been 28 days already?!

A good old fashioned gripe session

Today was a bad day for Jackson, and so I have a grudge against today. First of all I don't know if I have mentioned that Jax is turning out for 8th grade basketball, against my better judgement. But he is and he has been pretty happy to feel a part of things, and not just the 'ball' boy. But things aren't easy for him, he is tired and run down from Chemo and low blood counts. He doesn't have the coordination he had before ND CNS LCH and I knew this, and I thought he did too. Everything is more of a struggle when your brain isn't processing normally, school-hard, sports-hard, emotionally-hard. I never thought he would make the "A" team and he, of course, didn't. He is on the "B" squad, and Michael and I are quite proud of him, how many kids are in Chemo with Neuro degeneration disease playing sports---we think he is great. But he doesn't, he is frustrated, disappointed, and confused. He has been shooting hoops since he was literally old enough to stand at 11 months. He used to have a beautiful shot and he is mad he doesn't anymore, he is sick of not feeling like himself. Then he got home and saw his report card, more tears---it's not that bad he had A's,B's and a C. But this too is not what he thought he should get, in his words he is working harder and longer on school work then he ever has and now he is getting worse grades than he ever has before. I almost started in on my "you are so blessed blah, blah, blah," speech but I looked at his face and just started to cry with him. Yes I know others are worse off, I know other kids get worse grades, don't make the team at all, but today I am just mourning for my sons' loss of self, for his disappointments and his frustrations. I guess it's o.k. as long as tomorrow we count our blessings and get on with it. I hope he can continue to count his blessings, I hope he will rise above, and not sink below, I hope he gets stronger from adversity, and not weaker. I think I better stop, this is a ridiculous pity party on paper.