Slip N Slide!

Jada Rose and Troy Danny enjoy a Saturday evening on the Slip n Slide that was purchased by Grandma Dawny and Grandpa Nolan!

Jada's First Swim!

Jada Rose went swimming yesterday! Erney Markisich converted his pool to a Saline Pool with a state of the art filtering system. The pool was left alone for 24 hours with no one swimming in it, and we felt like it was a good time to give it a shot. As you can see Jada had a fantastic time!

Some presents from an anonymous friend!

Jada had to get labs drawn today. She had NO tears whatsoever. In fact when they are done poking her she whimpers out a small "thank you" to whoever it is that is drawing... When Jada and her Mom arrived home there were some boxes waiting on the front porch... Someone sent Jada Rose some pretty fun toys! We know it is from an anonymous individual who wished to remain anonymous. However the color of these two otherwise very comfortable chairs has us very perplexed. Could it be from a TDS board member who is now leaning back in their chair with a satisfied smile knowing they had done something wonderful for some Utes all the while, exacting a portion of their personal agenda at the same time? Or is it a true Ute fan who felt we needed some diversity in our otherwise VERY RED lives?

In either case all gifts are wonderful! Andrea said the chairs are "VERY comfortable" and will work perfectly in our back yard!. So to whoever you are, THANK YOU! THANK YOU! THANK YOU!

Spending some time at Grandma Dawny's house!

Yesterday Jada Rose recieved some get well cards from Swisslegoman's (A fellow Utefans.net person) kids...Just had to post them!They also sent a little princess crown that she wore ALL DAY LONG! Hopefully I will get some pic's up of her wearing that sometime today.

This is just too cool for words!

So I spend an obscene amount of time on Utefans.net. When Jada went into the hospital last week Chris (head honcho of Utefans) came by PCMC to say hi. He said they wanted to bring some flowers and/or a toy for Jada Rose. I told him we can't have flowers around her but a toy would be fine. Well one week later here's the "toy" they came up with!!!



Here is the link to a few messages posted on the subject...

Utefans.net

(by the way I am "Snowbirdute" The name was created back in the winter of 2003-2004 when Rob Christensen and I were spending all of our days off at Snowbird...I think cumulatively we have both been skiing once in the last 3 years??? Sheesh!

Anyways how bout these Utes?!?!?!?! What they have done for Jada Rose...Now that's what I call "living right". ;)

ITS OFFICIAL!!!!!

NO SIGNS OF CANCER AT ALL!!!!!!!

An Update

So basically we ended up going back into the hospital on Saturday because she did not want to drink at all! She was on IV's and in the ICS all Saturday and Sunday. Yesterday they let us come home with an IV in because she simply did not want to drink at all. She would eat but no drinking.

So after home health care came to set up the whole IV thing I decided to give jada rose a half time speech that she wouldn't forget. Jada's mom went out to get some shopping done around 8ish.

Jada LOVES riding rides at Lagoon and to a lesser extent the Zoo. Below is a LOOOOOng youtube of her riding some rides at Lagoon just to give you an idea.



Over the last few months we have been teaching her about this cool place called Disneyland where the rides are even BETTER than Lagoon! Her favorite ride s at Lagoon are the haunted houses....I have no idea why, but she just loves them! Only she calles them "monster rides" she begs to go ride monster rides every day. We told her at Disneyland there is even a "Disney Monster ride". We get on Youtube and watch haunted mansion clips, matterhorn clips, and anything else that seems close to what she has enjoyed at Lagoon.

So last night she is eating some Mac and Cheese simply refusing to drink anything. I start preaching on and on about some "cool new disneyland rides that are on the computer, and if she will drink some juice we will watch them all night! She knows the old Mickey Mouse Club theme song by heart so I even went in to the office and turned it up so she could hear. At first she was pissed that I wouldn't take her in there to watch "disney monster rides" I held my ground and at the same time held a juice cup full of Gatoraid in front of her. Finally she couldn't stand it any longer. She took a sip of gator aid and sprinted into the office. It was then that my masterful plan sprung into action. I let the first few minutes of Mickey Mouse Club play on youtube, and then paused it. "uh ohhh...must be broken, if you take another sip of juice it might work?" She promptly took another sip. It was then that I knew I had her! Using Pavlov's theory, I paused the youtube selection of her choice until she took a drink. After 2 hours of strait mickey mouse club, haunted mansion footage, pirates of the carribean ride, we drank 2 glasses of Gatoraid! Needless to say it was a bittersweet moment for her mother who had spent the ENTIRE day bribing her with every thing possible to drink, not realizing that a simple click of the mouse M O U S EEEEE would fix the problem! Last night Jada pulled out her IV. So its a good thing we have Youtube! Today she is doing much better!

Going home today...

We have received permission to go home! However we do need to keep the IV in. The plan is to give her IV fluids at night time when she is sleeping. Hoping that she will get over the knowledge that she will be "rescued" when she doesn't drink enough fluids. We will try and boost her hydration during the day time. If she pulls the IV, or it clots we will need to go back into the ER and have it re-placed.

Still going......

Well Jada Rose is STILL in the ICS unit at PCMC. Little munch kin just wont take to drinking! We need someone who can teach this girl how to drink! "Paging Dr. Chad Nestman..." ;-)

Last night we were bribing her to drink some juice. Her favorite thing to do is go for a wagon ride. Or has her Oregonian mother puts it "Weigh-gon". However those rides are now few and far between because in order for her to go for a ride in her "weigh-gon" she must drink some juice! Last night she enjoyed a bath, and several movies starting with Chip-n-Dale (oldies), Mickey Mouse(oldies), Disney's Haunted Mansion "Disney Monster Ride", Bugs Life...and I lost track at that point. She had eaten a Popsicle half a bananna, and some blueberry muffins that her Grandma Dawny brought up.

Happy Birthday yesterday to three important people in Jada's life...

1. Gramma Rose
2. Uncle Roger
3. Bampa Nolan

Hopefully today she will come home. It is possible that they will send her home on an IV. We are also decreasing her Lortab considerably. Will update again later today.

NOPE!

Were staying the night...:(

Jada didn't show enough improvement with two rounds of IV fluids, so they want to keep her hooked up over the night and see how she is in the morning..."wonder if she is saying to herself? "dang daddy wasn't kidding when he said I would come back to the hospital if I didn't drink my juice."

Hopefully just a quick trip to the ER...

Jada still isn't eating or drinking as we would like. Today she has continued to be more lethargic than we anticipated and she started to shake a little bit. We are hoping she is just dehydrated, and needs to have some IV fluids put into her... Will update as information becomes available.

Were home!

Jada has already had some Mac and Cheese, Ice Cream, an Otter Pop and a few sips of Apple Juice. How nice it is to have my little princess home again! We had a message on our phone from the hospital when we arrived home stating again that the preliminary results of the pathology show no reactivity to any lymphoma...but to remember this is just preliminary... yah it sounded better comming from her Doctor at the hospital but were taking this news and clinging on to it! Dr. Book really was very happy with this "preliminary result". We will keep ourselves grounded and know that nothing is official, but we sure do feel 90% better about things.

When I got out of the shower someone was snoozing in my bed!

GOOD NEWS!!!!!!

Initial results are back from pathology... NO SIGN OF CANCER!!!!!!!!!!!!!!!!!

We want to get the full spectrum back in a week, but the doctors are VERY HAPPY with the initial results.

WE ARE SOOOOOOOOO HAPPY! Lets keep praying for the in depth analysis to show the exact same results. THIS IS GOOOD!!!!

Jada is eating Popsicles right now. Fever is starting to go down... Things are looking good guys! :D

UteFans brought Jada Rose some gifts!

She's feeling better

She is back from the chest x-rays (will update when the results are available). She is actually sucking on a sucker right now! We think taking her down on the pain meds helped. Hopefully she will want something to drink in the near future, and perhaps we will be home tonight!

1st set of visitors today were Aunt Loni, and Aunt Teya. They brought Andrea some lunch and provided some much needed visiting time with Jada Rose. Thanks Ladies! Andrea dropped the ball because she was supposed to be getting pictures of her visitors. Were not as aware of our surroundings as Rob and Angel. So sorry ladies for not getting some much deserved lens time!

2nd set of visitors is going to be from Utefans. Chris (webmonkey) and Kim (CrimsonKim) are planning on stopping bye Jada's room this afternoon sometime. Wish I could be there, but hey my better half is there (Andrea), as well as any and all genetic superiority (Jada Rose) so its all the same right? Still wish I could have been there! Hopefully Andrea will come through on these photo's?

Chest X-ray

Were a little bit worried about Jada Rose, because she still isn't eating or drinking, and holding a temp of 102. They want to run a chest X-ray to rule out any sign of pneumonia, or mono. We are keeping our fingers crossed that some results from the pathology will be available today. HOPEFULLY Jada will be able to go home this evening if the X-rays are negative, and she drinks a little bit. On a brighter note Jada did sleep quite well last night. So perhaps the extra sleep will give her a boost of energy and push her past this.

The plan for tonight...

Jada Rose still will have nothing to do with food or water :( Initially they increased her pain meds hoping it would sooth her throat making her want food. NOPE all we ended up with was an extremely slow, cranky, sleepy girl (disturbing to anyone who knows Jada Rose's personality). She also has a temp that is hovering around 102. SO they are reducing her pain meds, and slowing down her IV fluids for the next 6 hours to hopefully increase her desire to drink. She has a WICKED rash that seems to be flared by heat...so when she is running a temp of 102 you can imagine the boils she is developing all over her body. They show up and disappear every hour or so. They sure look uncomfortable. We really hope it has to do with the EBV and they will stop soon.

As far as the pathology results for her lymp... We are trying to keep calm and wait it out. Some may identify with a sports analogy: Think of that feeling you get when the television goes to a commercial break just as the Utes are about to start their second overtime against byu...Well thats basically how we feel 24/7 right now.

I have to work early in the morning and came home to get some sleep as well as feed our dogs. For the second night in a row they were less then thrilled to see just me. I was so bummed out, and apologized to them like 3 times while I was feeding them and giving them their nightly treat. So I sat at our desk and watched this video several times praying that my dogs would get their best friend back soon. And keep her back for a LOOOOONG TIME!

Another night at PCMC...

Jada Rose is being very stubborn about not wanting to eat or drink. She is also running a temp of 101.5. So it is pretty much a guarantee that we will be staying at least another night.

Still no preliminary results on the pathology of her lymph. Dr. Book is pretty busy but should be stopping by this evening some time.

On the lighter side of this situation I must bring up "the Breath". SHEEEEESH! The surgeon warned us that she would have bad breath from the healing wounds in her throat but wooooaaaa nelly! Dang good thing this little girl is so cute, because her atmospheric aroma is slightly less desirable.

Lets talk about the Utes for a moment

Many are aware of my almost sickening addiction to Utah Athletics, namely Utah Football. A brief look into Jada's website would lend a fair amount of insight as to why at this point I look to sports, and football for some extra guidance, support, and motivation. Yesterday there was an article in Deseret News about Brian Johnson (Utes Starting QB). He said some things regarding his trials that touched me. He has had several injuries that have put a major strain on his college career thus far, and this was a quote from him yesterday

"We've had challenges and we've dealt with them. It's just a matter of coming out, going to work everyday and trying to get better — realizing that you're not the only one who has challenges to deal with," Johnson said. "Things could have been a lot worse. You've got to play with the hand that was dealt and make the most of it."


"Things don't always happen perfectly," Johnson said. "But you find a way to make do with what you have and make the most of each moment."

I find a certain amount of strength in this, and pray that over the next few days I can commit or rather re-commit to have the same attitude with any challenges that may or may not befall my sweet family.

I spend a considerable amount of time on a website called Utefans.net Many many people there have followed Jada Rose and offered their time, prayers, and thoughts to her of which I am forever grateful. I clued them into the seriousness of yesterdays surgery or rather the pending results of the surgery, and received an unbelievable outpouring of concern and support from them! It is so cool to see people who for the most part are assembled as a group to support an otherwise trivial passion in comparison to life's true treasures, bond together and offer up their time, thoughts, and prayers for my little girl. Yesterday while we were being delayed for surgery the owner of Utefans (Chris) showed up in the hallway of PCMC just to check on us. He listened to me ramble on about Jada's condition, and my hopes, and fears. Then said he would like to send some flowers or something up to Jada. I told him we could not have flowers because of her immune system and said if he wanted to bring something to Jada Rose I would be fine with that. But assured him it was not necessary as his thoughts and prayers were enough. Well he assembled this group of people on Utefans and raised an unbelievable amount of cash to buy Jada Rose a REALLY COOL GIFT!!! I am completely taken aback, flattered, humbled, and so appreciative not only the contributions for their monetary value, although Jada I'm sure will quake with excitement with whatever gift she receives from these wonderful people, but also the representation of support, well wishing, prayers, and good vibes that each of those acts of kindness shows us.

We as fans gather in our prospective stadiums, family rooms, and tailgates to support a team that operates on their own talents and skills, yet somehow we believe that our presence and support makes a difference. We believe that we are a part of the team that is playing on the field. To those of you who are supporting us, Utefans, family, friends, I want you to know as fans of Jada Rose that you have, and are making a difference! Thank you so much! Go Utes, Go Jada Rose!

Feeling Yucky!

Last night did not go well for Jada Rose, she was agitated all night. Periodically taking a 30 min to 45 minute nap. She does not want to eat or drink anything right now cuz its "ouuiee". We know this will get better though. Having been through my share of cranial facial surgeries I know at the time it sucks, but soon it subsides as the healing progresses. We are just trying to comfort her right now.

No results from pathology as of yet (we didn't expect any this soon). But because the pending results are our main concern, it is at the forefront of our thoughts. We are going to attempt a few tricks at getting her fluid input up to par. She has received several doses of Morphine throughout the night and this morning. I am sure those will taper off very soon. We are still hopeful that we can go home sometime this afternoon or evening. However if her fluid input does not increase, we will likely be here another night....ahhh PCMC, The Place You Hate to Love!

Surgery is done....

Here is what we know.

Jada came through the surgery ok.

Both tonsils are out.

Both adenoids are out.

One lymph node is out.

Adenoids were HUGE!!

Tonsils were HUGE!!

We have no clue what the results are of the pathology.

Unfortunately with the holiday weekend we may not have any news until Monday :(

Jada will be staying in the ICS unit overnight.

It's so difficult to read doctors. You look for any sign in their communication knowing that they usually will not tell you a lot of information until it is factual. When the doc got up from telling us how the surgery went he said "Hopefully this will turn out to be a kid with an infection who has really big adenoids, and tonsils"...Then he paused and as he walked away he said "But, they were HUGE". That last comment scares us! Thank you for your thoughts and prayers, we will keep updating.

Jada has been in for 1 hr. We have been in the waiting room. No news yet.

Delayed...

The surgery has been delayed until 5 pm. Jada Rose is playing in the waiting room SHE IS "VERY HUNGRY". Will update after she goes in.

1:30 PM

Today Jada Rose goes in for surgery at 1:30 pm. She is currently on liquids only, and at 10:00 am will be NPO. We found out that Jada Rose will likely go strait from the OR to the ICS for recovery.