Turning 9 is mighty Fine!

Sierra is 9, can you believe it? Me neither. Her birthday was on Sunday so I felt a little bad for her. Michael had early morning meetings so she had to wait until 4pm to open presents, and she was sooo excited. She requested a Crab dinner for her birthday and it was fun. We put butcher paper down on the table and threw baked potatoes, corn on the cob and crab legs right on the table, it was great. In all actuality she likes digging out the crab meat more than eating it. I hope she goes back to her usual favorite spaghetti soon--much easier and cheaper! She got "Rebecca" the American girl doll. She was so excited, and I have to admit I could hardly wait for her to get it, I've been excited since I ordered it a month ago! Sierra is so sweet, so easygoing, so loving, so smart and so silly. She really is such a peacemaker and happy girl, our family is better because she is a part of it for sure. Oh--and her flair for fashion keeps us in stitches still!

One half of an hour = 180 minutes

I know what your thinking, that Becky she never was good at math, 1/2 hour = 30 minutes. Not today at Children's Hospital though, perhaps those of you in normal time/space continuum's didn't notice the break down on the time/space thingy in Seattle but we lived it. We had an 11:00 Chemo appointment which should have taken 30 minutes, and we left the hospital at 2pm. Not all their fault (not all but some) they were behind but then the Doc. decided Jackson's eyes looked even more irritated today and apparently that can be a side effect of cytarabine. It has a fairly easy fix, two sets of drops two times a day during Chemo. I think that brings us up to seven meds. a day, better than when he was four though. He hasn't been feeling to well in the tummy today but nothing to bad so far. I'm hoping that it won't get any worse than this. We are pretty excited to get home tomorrow, and see those cute people who keep calling us. Carter said to me today, "so Mom do you want to bring me sumpun tuz you left me at home"? I probably do want to, you just never know with me. We are getting our black and gold M&M's out for snacking while we listen to Royal High Football game tonight. Thanks for those Elaine! I expect many an expression of love from my favorite broadcaster, any bets on whether or not I hear them on the broadcast?

Isolation booth

Jackson and I have been toying with the idea since Tuesday but apparently today we finally decided to have full blown coughs. The people in Hem/Onc don't like you to have coughs, colds, or anything germ wise, of course. So we shamefacedly admitted to coughing which promptly bought us waiting away from the waiting area and a nurse who brought us masks before we were taken back to our "isolation room" for infusion. Basically they just stick you in a regular exam room instead of curtained partitions where the other kiddos are getting their Chemo. I was fine with that, but Jax missed the people watching (must have a little of his Aunt Courtney in him). Before we went to Chemo I drug Jackson to Ross Dress for Less and Target. After Ross Jax was feeling tired and holding his arm all weird and stiff saying his neck and chest hurt. I wouldn't let him stay in the car at Target so I asked them if he could drive a handicapped scooter---he lit up at that! Took out one rack of clothes (he moved it like 3 feet before he stopped) and banged into a couple of end caps and smiled the whole time. I lived in mortal fear of him mowing me down, and a couple of time I jumped away in the nick of time, what we mothers do.....honestly! After our 2 hours commute (I thought the hotel looked closer on the map, and actually it's only 30 or so miles but the traffic here is a joke)and our one hour at the hospital it was late afternoon when we started in on Jackson's Math homework and English homework. We gave that up about 9pm. People keep asking me if I am so bored, I really wish I was. I was hoping for a nap but so far one eludes me. I really thought I was done with homework but that day never seems to come! I am not doing it for him, but redirecting, refocusing, helping look for information and calming him down because he is overwhelmed so easily right now. I am missing home, especially since Sammi and Carter are sick and Sierra is on the fence with it too. Carter told me tonight he wants me to come home and he misses me--sigh. I know I could go home, and someone would take Jax and finish these last two days off, but I can't. Maybe several Chemo's in when I know how it is going to be for him, but not yet. Plus Jax is not 100% and when you are 14 you can only lose it in front of your Mom or Dad, I wouldn't want him to be deprived of losing this week if he wants to!! He deserves that much at the least.

Long day=not so short post, sorry!

Today was just plain long. Jax was able to sleep in till 10:00am which means he went 11 hours without pain meds, I was glad. We drove to the hospital and ate lunch in front of the big fish tank just like when he was a little guy. Then he had labs drawn from his port for the first time, no biggie since he has been accessed since the surgery. Then we went to Audiology for a BAER test. BAER stands for brainstem auditory evoked response test. First they had to do a hearing test because the chemo drugs he had when he was four are, oto-----something or other (long word beginning with oto!), basically meaning they can damage hearing. Say what?! How come I never knew this? The audiologists were surprised he had never had a hearing test there. Once again I am realizing how oblivious I was (am but I'm trying) and that we probably got a little less than stellar care because we were getting Chemo in Yakima, and the Doc. there thought the Doc. in Seattle was on top of it all, and the docs. in Seattle only saw him every 3 months and assumed doc. in Yakima had it under control. His ears were retracted, probably from allergies or congestion the audiologist thought, but they were retracted enough to show hearing loss in the middle and inner ear of a significant level. Thus she had to do a special test to check the cochlea because if it's damaged then the hearing loss is perm. It was fine so they proceeded to do the BAER test. They hooked Jax up to a million wires and tubes and asked him to fall asleep while they pulsed sound through his ears. I was thinking "fat chance" but he did it--basically slept for 3 hours while they jostled and moved him. It was cool to watch the brain waves, she showed me what they would look like when he was truly out, and he was, most of the time. She "stressed" the test to the limits 90 decibels and he slept on, that is like a semi truck driving right past your ear! He has his fathers "sleeping genes". She brought in other audiologists and said they had all been talking a lot about Jax and very curious about the ordering of this test by Dr. McClain in Houston. I think they were very surprised to find that he had a significant "neurological abnormality in the auditory pathway in both ears"(their diagnosis). Our oncologist was quite happy about that though because now she has a Number, level, and graph to chart from. The "team" in Seattle has been very nervous about the chemo roadmap sent over from Houston because they have never seen it before, so if nothing else the docs. here are happier and really trusting Dr. McClain completely. Jax also had his first Chemo. today. Took about 30 min. to administer and he did fine, despite listening to all the scary facts and worries the Chemo nurse was impressing upon me-- in front of him. The soreness from surgery is still what he complains of most. Thanks for all the prayers and calls, and messages. Love you all too.

sleep, pain, sleep, pain, geo search, sleep...

So as you probably gathered from the title we are riding the waves of discomfort tonight. He hurts so we give him a pain pill, he sleeps, he wakes up hurting, another pain pill and in the time it took to kick in he worked on some of his school work (I tried to get him to take it easy but Jax stresses when homework is hanging over his head) then he said some pretty off sentences and admitted he was feeling less pain and less brain!! Loved that statement! So on we go. Sammi is sick at home, no school today with a fever over 100 degrees so pray for her too. Carter had a blast of a day and couldn't speak fast enough to tell me about Caden's mom taught preschool, and what Molli did and her dog and then her brother Bailey came home and at Grandmas they road the golf cart "like forever and stuff". Didn't talk to Sierra , she was always driving said golf cart, and Zoe had a marvelous day, at least 14 stickers in reading class (according to Zoe I haven't verified this amazing information with the authorities yet!) and had a blast on Miyahs' new teeter toter (sp?) which they apparently got from a lady who was actually going to throw it out over a little blood and injuries if you can believe it! Thanks everyone for taking care of our little family. Michael is home now, kids are in their bed and Jax has "be kool" patch on his forhead, makes him look like my little four year old Jax to me. Good night, sleep tight.

We're looking at him!

He is back from surgery laying here moaning in his sleep. He is so cute, he says he is not sleepy, but can't keep his eyes open. Michael asked him if there was anything he wanted to say to his fans, Jax just moaned, so being the smart alec he is Michael said I bet you can't even spell blog right now Jackson, Jax said yes I can hgem5!! Then he added bet your embarrassed now Dad, and went back to sleep. He has had some apple juice, said his chest is a little sore, but the IV in his hand is bugging him more. We will be release from here in a few hours then go back to the hotel which is next to the ferry that takes you to Whidbey Island, Camp Casey memories.... Then tomorrow back here at 1:00 for blood draw and labs, 1:30 for a 3 hour BAER test, 4:45 exam with his oncologists, and 5:30 his first Chemo. We changed the times for chemo on the following days because trying to get down I-5 at 8:00am is ridiculous (I am homesick for my no traffic Royal City Streets). His Chemo on Thursday is at 1:00 and Fri. and Sat. at 11:00. I wish I could post the pictures of him but we can't figure out how to put the card into Jackson's fancy new netbook. So those will have to wait. I will try to post more tonight from the hotel room and let you all know how recovery is going. Thanks for the prayers and keep 'em coming his way. Give my other kiddos a hug if you see them, wish I could do that....but it is O.K. because I know Mom, Courtney and the rest of you are taking them into your hearts while we are gone---thanks everyone, we love you.

Surgery Is Successful

~I want Becky to smile when she sees this blog post. This mug ought to do it.~

Becky just called and Jax is out of surgery. All went well and they should be able to see him in 10 minutes or so. We are so grateful for all the love and support from everyone, especially since we can't be there. Thank you all so much. On a side note, we love you Noftles!

Posted by: Brenda

In Surgery...

I can't believe we are here again, getting a port again, saying goodbye as he goes off to surgery again. I liked it better when he was four, then we got to stay with him till he was asleep, but today he just walked away from us, him crying (just a little he is still very macho!)and of course me crying. I keep thinking back to when he was in first grade in Mr. Busters' class, same class and grade Zoe is in now. They would earn buzz bucks and get to shop at the class store on Fridays, he would never buy anything until he had earned enough to buy something for Sammi, and Sierra too. Also I remembered when in sixth grade he was recieving these cute "secret admirer" letters---Zoe was enamored with the idea of a secret admirer, and so jealous that Jax had one. One day she comes running up to me so excited because a "secret admirer" had left her a letter in her room telling her how smart and nice and pretty she is. She didn't notice on that letter or the three or four following ones that it was Jackson's handwriting, but I did. Shouldn't be much longer now, they said it would only be about a 45 minute procedure and it's been that now. Can't wait to see him and hug him.

Jackson & Michael's great adventure

If you know Michael you know he is not much of an adventurer, but the word adventure worked well for my title so we will run with it! Please note that I try not to put Michael's name in front of Jackson's, they both HATE it when I am yelling for them "MICHAEL, JACKSON" they don't even own one sequined glove between them. I think I digress.....oh yeah they went to Provo to the BYU vs Florida game. They had great seats (not to brag or anything) courtesy of ME!! Plus Kara Allred arranged for Jax and Michael to get to go down on the field before the game. They got to watch the team warm up and Michael even caught a practice punt. They said it was pretty cool. Michael maintains we should be expecting a phone call from BYU recruiters as his catch was soooooo impressive. Also they said those boys are bigger in real life than they look on T.V. .

Jackson's friends have written him lots of nice notes, and he had a family in our ward give him, and us, a really nice care package today. I was doing something and he said listen I'll read the note she wrote....Jackson, football is his thing....and then he started crying. He hasn't really cried since the day in Houston, so when he calmed down I asked him what made him emotional, was it the football thing, or just all the support and kind things people are doing for him and us. He couldn't decide, both he decided, plus I don't want a port again. Break my heart.

Ready to rumble.....

Our schedule is set, the dye is cast, the time is now, the day is done, you get the idea.
Tues. September 22nd: Surgery to place the port/Cath
Wed. September 23rd: Lab work, BAER test, first Chemo treatment
Thurs. September 24th: 2nd Chemo
Fri. September 25th: 3rd Chemo
Sat. September 26th: 4th Chemo
Now all we have to do is coordinate his schoolwork, my preschool, two soccer games, one volleyball game, 3 volleyball practices, a violin lesson in Moses Lake, a party Zoe has been invited to, a football game and be ready for Sierra's birthday which is Sunday the 27th!! Better stop blogging and get getting, start starting, giddy on up, shake it then bake it, move it or lose it, you get the idea.

Home Makeover

I love walking in my front door to see the beautiful picture of Christ and the "expect a miracle" sign---I've got lots of miracles in my life right now...

My gorgeous muted gold walls and black banister and railing--looks so cool. What color should I do trim and baseboards upstairs? I am doing white downstairs but I wonder if that would look weird against the dark colored walls upstairs and around the black door I now have?? Give me your opinions please.

This cracks me up every time I come in through the garage!! They took my old Americana decorations from the entry way and decorated the stairs that lead from the garage to the house!! I'm leaving it -- it makes me giggle.

All cans in their places with bright shiny faces. The Ladies who did this room have most likely some scary stories to tell, after some intense therapy they should stop moaning and rocking catatonically(sp?). It feels so good to walk through my decorated garage doorway into a clean and organized pantry, like deep sigh good.

From peeling yellow and brown to this!

The house looks happier to me!

Words are not enough....

Today took Jackson, Michael and I to Seattle for lab work and a consultation with our oncologists. They said his labs looked good--Lymphocytes a little high, and that they were in uncharted waters here. The "road map" for treatment that Dr. McClain sent for Jackson is a completely new one to them and this makes Pediatric Oncologists very nervous. Dr. Cheung and Dr. Johnson both said that we have no idea how many doctors and radiologists have been pouring over his tests and charts. Many a discussion in tumor board and among themselves has been had about our boy apparently. Michael told me later "that makes me feel horrible and great at the same time---it's never good when your child is the medical mystery maker but it's nice to know they are doing all they can...."! I really do feel like they are trying their hardest and so I am not as upset as I thought I would be when they vetoed my idea of chemo in Moses Lake. Basically they feel like they are already out on a limb by giving him an experimental "un-researched" (anecdotal research is about all you get with ND CNS LCH) treatment plan and they want to watch him closely because of that....it was impossible for me to argue with that. Jax handled it all well and although we could tell that he was upset about having to come to Seattle for several days each month (when they saw Jax's face they backpedaled a little and said they would try to find a Doctor they felt comfortable with on our side of the State) he shook it off quick. I have noticed this happening a few different times since Texas with Jackson. Something will be said, like "oh by the way son you have to get up at 5:45 am this morning, get ready, get a shot, drive to Moses Lake go to the hospital and get your blood drawn all by 7:30 am. (yes this really was his morning today) then you can be dropped off to school where you will be till 11:00am and then we will drive you to Seattle so they can draw more blood and examine you further". Jax told my Mom he felt like a human pin cushion today. When I teased him later about being a pin cushion he said "I'm not mad about it Mom, I know everyone is just trying to help me". He is looking for the good and finding plenty of it.
We got home to blazing car lights at 9pm tonight and guess what we found.....we had a newly PAINTED house---house, and trim and exterior doors. Then we walked inside.... the entry way and hallway were painted, the end tables, and entry table, and coffee table were freshly painted. The stair railing and banister were painted, even the "love is spoken here" sign above the dining room was painted! The pantry was clean and organized and the garage was clean and organized and the laundry room was clean and organized ( I will try to live down my embarrassment over the state of those rooms---I was getting to it, who knows when but, ahhh who am I kidding). Cute decorations and someone with style rehung the pictures on the wall and "styled" the front entry way and living room. I went downstairs to see trim around the playroom door---trim I bought and painted 12 months ago and have been on a to do list ever since. Trim in the kitchen.....shall I go on, because I could. I guess at one point over 30 people were here working. For us, to make our life better and easier and to make us feel loved. We feel so loved and THANK YOU is not enough, words are not enough.....I am now taking suggestions on what I can do to deserve these friends. (Nancy took pictures from me they will be up soon in the Noftle extreme home makeover blog!)

The Last First Day of Preschool

Here it is---the last picture of one of my children on their first day of preschool! Did that confuse you? No worries I will continue to confuse you all this preschool year. It is very bittersweet to start this last year. I have been doing this for 12 years. My first preschool students are now in 11th grade! I have taught all my children and the Cougar man is the caboose. Last friday I took Carter to have his speech evaluated. The lovely speech pathologist (also batteling cancer heaven bless her) said she has never had a four year old score so high and that Carter was capable of making the right sounds we just needed to stop and correct him when he didn't because it was becoming a habit. So Carter tells me about his test on the way home...."Mom dess what--I was the awesomest at dat test Mom. (Wow Carter how come you were the awsomest?) Tuz Mom I tuld my sinker(thinker) and my sinker tuld my mouf dat I do dood talking!" You can clearly see why he doesn't need speech--he is the awesomest after all.

Quick Update

Seattle Children's Hospital called and they want to see Jackson this Wednesday for lab work and a consultation with the oncologists. I think we are probably planning and prepping for the spinal tap and port placement. I hope we get the ball rolling soon on Chemo. Every day that passes means one more days' intrusion into Jackson's life as a freshman in High School next year. Also I am fighting a battle to have the Chemo administered in Moses Lake, a few steps back and forth on this one--but looks like the forward steps might be winning out! Tonight Jackson and Sammi were invited to a friends birthday party so Courtney and I took our six (no wonder it was no fun!) remaining children and ran to Moses Lake to get some errands done. I told her I needed to return Jackson's football cleats to Big 5 and she asked why------that's when I started crying, and crying , and crying. I felt so dumb but I just couldn't go in there and return those darn cleats, so poor Courtney (thanks to me she was crying to, but at least comprehensible) had to do it for me. I just ache for Jackson, I so happily would bear this burden for him if I could. Thanks Courtney for being there once again. I'll try not to let all the crazy out on just you, poor girl.

Houston we have a problem.....

At the airport in Houston.


Feeling snuggly in the hotel room---you have to love a fourteen year old boy who will still cozy up to you.


Jackson showing off my Christmas gift....I have no idea why it is in a museum in Houston, I guess for safekeeping, what with all the recent robberies and all.




Jackson and his buddy the terracotta warrior.

See how hard he works for you Mrs. Eilers!


We are home from Houston and it was good. Dr. McClain confirmed that Jackson has ND CNS LCH (neuro degenerative central nervous system langerhans cell histiocytosis). We knew he did, we wanted to hope he didn't, but we knew. Dr. McClain was able to see it on the MRI's we brought that were done this summer. It amazes me how 3 oncologists, two tumor boards and two neurologists looked at the same MRI and pronounced it "clean". I am not blaming or being critical at all, just emphasizing the point that we have specialists for a reason, a good life saving reason. After reviewing the MRI and giving Jax a brief exam he told us what we were in for... 12 months of chemotherapy which will be done 5 days in a row every month with about 3 weeks between these 5 day treatments. If the MRI isn't significantly changed at the end of 12 months then we will continue on for another 6 months of the same. Try not to focus on the 60 to 90 chemo treatments, but on the fact that there is hope! I was so afraid he would say what all the other oncologists have said, which is basically, there is a problem but we don't know of anything to do about it. The chemo regimen is called ara-c, the drug is cytarabine, and it is a tougher chemo than the one Jackson had at age 4. This one will most likely cause, fatigue, nausea, vomiting, headaches, fevers, and low white and red blood cell counts. Of the 8 patients he has used this therapy on, none have lost their hair and 5 have had improved nuero functioning! Pretty good odds to us. It's interesting to me that how we feel about situations can be so relative. If you had told me 2 years ago that we were going to endure at least 60 chemo treatments with a stronger drug that is able to pass the blood-brain barrier and enter his spinal fluid I would have freaked out. Now I am so happy that we can do this, so glad that Dr. McClain accidentally found ara-c is more effective at treating ND CNS LCH than the other therapies tried before. Jax did great, "relatively" speaking. When the Dr. was explaining the length of treatment and the number of them I glanced at Jax and he looked fine. When Dr. was explaining that he would need 4 or more spinal taps during this time period Jax looked fine. When he talked about the repeat MRI's and the BAER test, he looked fine. Then when he said since this drug severely effects your blood counts it will be too risky to play contact sports, like football during treatment.....Jax BURST into tears, sobbing heart wrenching tears. No football, made it real. No football, makes him sick. No football, means his reality is really a new reality for him. Fourteen years old doesn't see the big picture that we see--but does that matter? No, it doesn't. I ache for him over his grief. I know what's best, I know what a huge blessing this is for his future, but I ache because he does. He will be O.K. --he has done hard things before and he can do hard things again, he is amazing.

So many of you have asked what it is that Jax has, is it brain cancer, is it histiocytosis, is it central nervous system disease? If you could see me right now I am shrugging. It is (from what Michael and I heard from Dr. McClain) too many Lymphocytes which are normally good infection fighting cells. Just like with Histiocytosis the good guy cells got carried away, but this time it wasn't the histiocytes causing the havoc. I don't fully understand the part about the spinal fluid, I will ask with a clearer head when we have our appointments in Seattle. For now just know that he is sick and being treated with cancer drugs for something that is not cancer cells but the good cells play-acting like they are cancer cells. Did I make that hard enough or what?! Michael told Jax he could simply tell people he has a form of cancer, or he could tell people it's ND CNS LCH or he could tell them it KT LEI PPG (insert whatever letters you want)! Regardless it is extremely rare, extremely sneaky, and we are extremely lucky to have found some help.

The support in Royal is taking my breath away. Thank you for the calls, the meals, the cards, the childcare and especially the prayers. Thanks for loving us, and especially for loving and caring about Jackson. Many of you are asking what you can do for us, please keep him in your prayers, and heaven bless you all for blessing our lives so much. I am grateful for you ALL.

First Day of School 2009

Lucky for us Braydon had time to play with Carter on the first day of school, before he ran off to Kindergarten registration. When Mr. Buster dropped Braydon off, I heard Zoe telling Sierra that her teacher came over to tell her good morning because he was excited for her to start school in his class!! Poor Carter keeps asking to have Braydon or Avery or Dayne or Kale or Jace or Jett over to play, and I keep saying "there in Kindergarten buddy, sorry". Sigh just 12 long months till Carter joins his buddies at the "big school".


The annual "First Day of School with Grandma Louise" photograph. Jackson 8th grade, Samantha 7th grade, Sierra 3rd grade, and Zoe 1st grade. Wow, there grades make me feel old, how could I have a kiddo almost in High School?




I know, I know please get me photography lessons and the time to take them for my birthday. Still even in bad lighting these kids manage to look goooood!