The preschool program and the letters in Jake's body

Tonight was Jake's preschool program / graduation. He has loved being in Ms. Stephanie's school and we were really excited to see him and the other kids do their songs. Jake has been practicing the line he'd been asked to deliver, he's been practicing the ASL alphabet and things like that.

But this afternoon another one of his headaches came. It must have been a bad one because at 4 o'clock he just wanted to go to bed. Annie gave him some children's Tylenol and he went down for a nap. I woke him up at 6 o'clock to eat and get ready for his program and you could just tell that he was hurting. As he stared at his dinner he said "Why did I get a headache?" I told him that sometimes he gets headaches if he eats too much candy. Annie said "But you didn't really have hardly any today, did you." I said "Sometimes you can get a headache if you are playing and you bonk your head. Did you bonk your head today?"

     "No" he said.

I looked at Annie and said, "Should we talk about the other thing now?" We've never thought to hide his condition from Jake, I was really just checking our combined courage level. Then I said "There is something that is different about Jake's body. It is different from Dad's body, or Mom's or Alli's or Linny's or Brooke's. You have a thing that is called NF. Have you heard mom and dad talk about NF before?"

     "No."

"NF is just a coupple letters, N – F, that is short for a big word that says what is different about Jake's body."

     "I wish my body didn't have any letters."

"Me too, kid. But I think that the NF does give you headaches sometimes and I wish it didn't."

We talked a little about the preschool program to try to get him excited about going and after some careful prodding, we were off. We got to the program a few minutes late and Jake was still teary-eyed when we got there, but after a few minutes he warmed up and was happy to be there with his friends. He shook the maraccas, and delivered his line and smiled for his pictures. He did great. The kids were all cute and good and funny, just like you want kids to be.

Real quick, can I just say that if you have never had the impulse to clone the people in your neighborhood so that you could fill the world with awesome, caring, friendly, giving people, you should move to my neighborhood. Cause that is what we've got going on over here. Jake loves the kids in his class, and they love him. He gets invited to go over to other kids' houses to play and the moms are always so good to him. These people are amazing and I love them.

After the thing we came home and Jake's head was still hurting. He sat on our bed for a while then he just wanted to go to sleep. He got his jammies on and climbed into his bed. I went in to tuck him in and he said "I wish that my headache did not hurt." I said I wished so too. He held up his hand and made a zero with his thick, beautiful fingers and said "I wish I had this many letters N – F." I managed to keep my poker face but it took a little effort. I sang him his songs and kissed his fuzzy head good-night.

Thanksgiving 2011

Lots to be thankful for, over here. We've got gobs of friends who never seem to mind helping us out with the this-and-that's that come up so often. We've got family galore who are always helping us with kids and errands and borrowing us stuff and feeding us. In particular, Annie's Mom, Sandy. She watches our kids at least once a week. And often, when we come back from wherever, the pile of dishes has disappeared from the sink and the clean laundry has been folded. The kids love her and she is always so nonchalant about saving the world. (All in a day's work, citizen.) And I know she does the same for her other children all the time.

We love our neighborhood, and the good people who we get to be around at church and at school and at Dick's (those are our major hang-outs).

Annie and I love each other, we have fun together and we work well together. Our kids are beautiful and fun and good.

We met with the oncologist on Monday to get the results of Bud's MRI. The news is all good. She said that the tumor we've been watching for the last year-and-a-half hasn't changed and that there were no new tumors. That is exactly what we (and probably you) have been praying for. She told us that she wanted to move Jake from having MRIs every three months to having them every six months. That is a good thing for a lot of reasons; it indicates to us that they're comfortable that the tumor on the optic nerve isn't growing. It will spare us the emotional ramp-up that we do to 'MRI day'. It will save Jake and Annie and I (frankly) of the hassle of MRI day. And it'll save us some coin.

Then, on Tuesday, we met with Dr. Viskochil, the geneticist. He is very warm and nice. He actually reminds me of the Dalai Lama, if the Dalai Lama were a world-class geneticist. (Maybe he is a reincarnated Dalai Lama? Is that how that works?) Anyways. We hadn't told anyone this yet, but about a month ago we spotted some little bumps on Jake's tummy. There are about a dozen of them and they're about the size of the little sprinkles you sometimes get on a cupcake. Not the long sprinkles- if that's what your thinking- but the little spheres. And while you're thinking of it, make it a chocolate cupcake, not a white one. Anyways, Jake's got these little bumps on his tummy and we were worried that they might be first of the neurofibroma bumps. But, the oncologist, her assistant, and Dr. V all said that they're not. They each figured they are some viral thing that kids (having the sanitation habits of wolves) sometimes get. They're not contagious, they're not worth treating. They don't hurt, or itch and they'll just go away sometime. It was a relief to hear that. Not that bumps on the tummy are the end of the world, but this NF thing kind of has phases and we were thinking that we were years away from that phase.

Dr. V also felt all over Jake for bumps beginning below the skin. He told us all about how they first appear, and he said that he didn't feel ANY on Jake. So that was also a very good thing.

This week Alli took a dive and whacked her chin on the wood floor. She's got a nice bruise going there, but its going to be fine. It looks pretty tuff though. None of the kids on the playground are likely to try to start anything with her for the next little while.  She's smart and beautiful and fun.

Jake is always busy making inventions for his “man” out of legos, tupperware, rope and other spare toys. He has had the same little man, about the size of a lego man, which is from a GeoTrax set, for the last 8-9 months. He goes everywhere and it is nothing short of a miracle that he hasn't been permanently lost yet. That day may have come yesterday. While playing in a huge pile of leaves, Jake threw some leaves up into the air and his man went with. I searched and searched as I have through sand, bushes, dirt and rivers to find the same man, but I could not find him. Hopefully he will resurface. Luckliy he has more lego men that will fill the gap.  UPDATE 3/21/12:  Jake's man was found- thanks to the efforts of our neighbor, Velle Anderson.  Velle turned that leaf pile three times, but he found Jake's man.  Then...Jake lost the man again.  At Grandpa Holman's.  For three weeks.  Then he found him again, just last night.  So.

Linny made poop in the potty yesterday. I could go on and on about how that is a very good thing, but all that poop talk would make the internet a less civilized place. Linny is busy and funny and cute.  She is learning new words all the time and often when Annie or I finishes saying something there is the sound of a squeaky little echo rattling off our last few words. last few words.

Brooke has started caterpillaring her way around the front room. She'll be crawling before Christmas. Her red hair is getting longer, but not so long that it's not wispy and fun. She's cute.



Happy Thanksgiving, everybody.

Rocket School

We got the word a while ago that the school district is going to let Jake stay in the preschool for the rest of the year. He has been going to two different preschools because we were not sure if he would get to stay with the school district. We were in there under a trial basis, so that the special-ed teacher (who we so love) and the speech therapist (who is nice) and the physical therapist (who is very good) could do more in-depth evaluations of Jake's abilities and difficulties.  It's a mixed-bag of emotions. It is hard to swallow seeing all of the things that your child is behind in- in black and white. Typed out like they will be there forever.
At the same time, we are grateful for specialists that recognize where he needs help and are genuinely trying to give him the help that he needs. Jake loves going to his “rocket” school, and doesn't mind working with the teachers and therapists to get the extra help. It's dad and mom who are trying to process it all. We struggle everyday to make the balance between not letting Jake off too easy, and pushing him to the point of failure. We will constantly be trying to find the balance there.
We are very grateful that Jake is able to stay at the district preschool. It is an answer to prayers. We feel like he is able to get more specialized help, and we are learning ways to better help Jake at home. Jake will still attend his "Zoo" school as well. He loves them both. The journey continues, but with a little more support! THANKS!

Halloween 2011

We had a great Halloween.  The kids were cute and happy, the weather was gorgeous and our neighbors rock!


Brookie in her eat'n chair

Lin-Lin, who is always ready for a party

Alli, Jake and Lindsey at the carnival at the Elementary School

Brooke, Dad and Jake

Jake, the inventor's latest creation

Trouble

Good sisters

Cute kids

Mom and the kids and some of the cousin ones

Leaps and bounds

Six years old minus two teeth = AWESOME.

I have never been a big Garth Brooks fan. He had some songs that I liked and I could understand why a lot of people liked him, but I'd always been ambivalent about him. That changed tonight. We had a friend riding home in the van with us, so I climbed into the back between Jake and Alli. Alli asked if we could listen to her favorite Garth Brooks song, "The River". Mom fired it up and Alli started singing. I joined in and we sang through that song twice before we got home. It was pure joy. Alli knew all the words, her voice is sweet and it's a great song. I really was in heaven.

Then we came home and got jammies on and gathered onto the couch to read some books for nite-nites. Alli read "Green Eggs and Ham" to us. She had to work on some of the words to get them right, but she didn't have to work on any of them for too long. She has been coming along in her reading for quite a while now, but I don't think she could have done two weeks ago what she did tonight. It was fun to hear her reading by herself.

Decorated it herself

She is growing so much. It seems like each week there's something new that she can do. Origami, climbing trees, running the computer. She can touch the back of her head with the bottom of her feet. She puts her tummy on the floor and just arches her back and brings her feet up and does it.

She is a wonderful big sister and Andrea calls on her many times each day to help out with whatever is going on. She's cute, and polite and likes to keep the rules. She's smart and fun and very, very good.

She started Kindergarten back in August, she turned six back in September and she's lost three teeth this summer. She's a rocket ship and she's pointed straight up.   

Alli and mom seeing the sights, summer of  '06

NF walk Salt Lake, 2011 !

The NF walk in Salt Lake was awesome. It was great to meet lots of families who are living with NF. We had a good turn-out, probably around 250 people. Face painting for the kids, a DJ who played some great songs (Neil Diamond!), the Princesses were there, and the SLC FD brought two trucks and let the kids climb around on them. There was good food and great prizes up for grabbs in the raffle. The weather was perfect and best of all, about $10,000 dollars was raised to support research for a cure for NF.

A GREAT BIG THANK-YOU to all the friends and family who donated or came out to the walk. You guys rock!



Awesome NF moms Kelly, Andrea and Kelsey

Aunt Ren and one of the helpers who came to help and help

Annie and her Dad

The NF walk gets two big thumbs up

Heather, Jason and Brookie who rock

The jolly reaper

Princesses in the park

Mike Adams and the crew

 
Steph and Siena, who rock. 

The Nilsson posse. Love these people.

More people we love- the Flamms.

Some of the Davis' who we love (and are growing up all too fast)

Good turn out!

Jim, Jake and Maurice Simpson- an NF Hero

 
Alli, Heather and EmmaLee

T, Kelly, Jake and Jim

Our favorite aunt Heidi

Thanks firemen!

Heidi and her Arlee

Partied out

Let's take a walk

People that we love,
   The first anniversary of Jake’s Neurofibromatosis (NF) diagnosis was back in June.  A year in, the kid is doing great.  Thankfully, his day-to-day symptoms are minimal.  He does have some speech delay and some coordination / muscle tone problems, but really, he’s having a very normal childhood.  I’m so grateful to be able to write this: he is having a very normal, very fun summer.   It could be sooooo different.  
  Recently, we were able to see a bunch of other kids with NF.  Some were in wheelchairs, some were blind in one eye or deaf.   Some had big, lumpy tumors on their faces.  Others showed almost no physical symptoms, but they were clearly dealing with mental and social challenges.  I don’t know what would be more difficult.  That’s part of the mystery of NF- it can manifest itself in so many ways.
   We are working with the Children’s Tumor Foundation (CTF) to organize a walk at Liberty Park in Salt Lake City, on Saturday, October 1st to help fund the work they are doing on behalf of kids with NF.  We would love to have you join us for the walk.  Registration is $20 for an individual, $40 for a family of four, $50 for five.  Click here to learn more.  Click here to register for Team Jakers.  
  CTF is the largest non-governmental source of funding for NF research.  They consistently receive Charity Navigator’s highest rating.  They use just nine cents out of every dollar that they bring in for fund raising.  82% of their budget goes to their research programs.  
  CTF builds awareness.  They connect families with NF to doctors, information and support sources.  But more importantly, CTF is the main driver of research for treatments and the search for a cure.  I have no doubt that when a cure is found, it will be thanks in large part to the work that CTF has done.
    Asking people to help out on something like this feels a little  weird.  So you should know that your relationship with us does not depend on you registering or not.  If you’re able to donate, we would appreciate it.  If you can’t or just don’t, we will sing just as loud at your birthday party.

Love,
 Jim, Andrea, Alli, Jake, Lindsey and Brooke Davis

Happy News, Less Stress

 

What a great week. We met with Jake's oncologist on Monday and the appointment was great. We have been worried about an area of enhancement they found with his last MRI, but they were not worried at all this time. So all green lights. We go back again in three months for another MRI.(his usual schedule) We are so grateful for the wonderful medical professionals at Primary Children's. We feel like Jake is in the best hands. All the doctors really care about Jake and are trying to do their best for him.

A BIG THANK YOU to our sweet friend Karren. We didn't realize that baby Brooke couldn't come into the oncology area until we got to the hospital with her. I called my sweet friend Karren who took her on moments notice so we could both be with Jake at the appointment. Jim and I had braced ourselves for the worst news(chemo) and needed each other at the appointment if it went that way. We are so grateful it didn't go that way. We say prayers of thanks everyday, but we said a really BIG thank you that night. Thank you to all who have been praying for Jake. We know God answers prayers.

August MRI

Jake, sleeping one off

 

 

 

 

It's 10:30 am, August 19^th, 2011. Jake is in for another MRI. We rode in to town on the train, then took a bus up to the hospital. Jake loves trains and buses, but he doesn't get to ride them often. On the way in he kept saying “Are there too many (trees, houses, cars, stop signs) to count, Dad?” Turns out there were too many.

The nurses are always very nice to Jake while they're getting him prepped for the MRI. They hook him up with an I.V. And he has never cried once when they've poked him. It's a whole different situation when he's coming out from under the sedation. He pulls at the I.V. Tube and the cords to the various monitors. Nobody likes the feeling of being restrained.

Jake is beautiful in his sleep.

They'll have him in the MRI for about a half an hour. Then they'll bring him out to the recovery area and he'll sleep the drugs off for a few hours. To be able to go home, he has to be able to drink some juice and eat something. We'll see how dopey he is when we get him home. Sometimes it has taken all day for him to sober up. Other times he's been kinda normal for the drive home. Go figure.

Monday we'll meet with Dr. B- the oncologist. She'll let us see the images of Jake's brain. Hopefully the spot we saw last time will be absent and we'll be able to say that was just an anomaly. Jake and I dropped a dollar's-worth of coins into the fountain as we came into the hospital today. There are lots of people who have been praying for the kid, and we're optimistic. (But it never hurts to throw a coin in the fountain too.)

Alli starts kindergarten on Monday. She's pretty excited and so are we. She's a very good, very smart girl and it will be fun to hear about the things she does at school and the new friends she'll meet there. Alli has lost two teeth this summer. Newer, bigger, better teeth are spring up to fill the void. She's cute.

Jake starts preschool on September 6th through the county. Again, we're hopeful that the time he gets with the speech therapist and the physical therapist will help us get a bead on his needs. We'd love to know what else we can do at home to help him along.

Lin-Lin is probably going to feel like she's been ditched when school starts. I don't know, maybe she'll feel like she's been promoted to biggest sister and runner-of-the-show. She's a funny little girl who is in perpetual motion.

Brookie is just as sweet and happy a kid as you could hope for. She's chubby and all-over kind of peach-colored. When she smiles she sends out a little shock-wave of joy that goes rippling through the universe. She can roll over and look around and she is still cute, cute, cute. 

Thank-you to all you guys, our friends and family who do so much for us.  We love you.  I hope your sprinklers break so I can come fix them for you.  (I don't really hope that, but I do hope to be able to return favors if they're ever needed.)  

It's about 11:30.   Bud is here, in the recovery room now.  He will be waking up in a half hour or so. 

Locks of Love

This is my Alli before





and after.

She looked two years older instantly. I told Alli it was kind of freaking me out and she said, "Don't freak out, Dad". Right then I knew, those words would echo through the walls of our house for a long, long time. Thanks to Aunt Heather for being the family's stylist, you rock.