Diane has arrived

We picked Diane up at the airport this afternoon. It was so nice to see her. The boys are in hog heaven!
Ryan had a rough day today. He is having some neuropathy in his feet and the ringing in his ears has gotten worse. Today he was considering stopping his chemo for a few days to see if that would make his "irritations" go away. He did take his dose this evening and we will continue to push through these difficult days. We are looking forward to the next few weeks flying by so we can come home to see you all that we miss so much! If we find out next Thursday that this treatment works, we will have to fly into Chicago every 2 weeks for treatment and Drs appts. We are not looking forward to this, but if works, we would fly to Antarctica!
We are so fortunate to have such a wonderful support system and we love and miss you all so very much!!

I told her

I told Diane that we would be going to the Oprah show and Celine would be there. After we rolled on the floor together, we both cried. Its not only exciting for us to go and experience Celine and Oprah, but it will be emotional for us since Celine already has that effect on us without the current sittuation we are in. Celine and her husband made it through cancer together, so what an inspiration to our family!!!

OPRAH HERE WE COME!!!!

WOW- I cannot even tell you how excited I am. Ryan and I were looking at shows in Chicago and dreaming about going to an Oprah show. This is fairly impossible anymore since she is in such high demand. They had a list of shows being done next week and it said- "Are you a Celine Dion fan" Oprah is looking for special guests to attend her show who are Celine fans and have a story. THAT'S ME!!!! Ooohhh pick me pick me!!
It just happens to be that Ryan and I have always talked about taking his mom to a Celine Dion show in Vegas when she was there, but never had the chance to. Oh- wouldn't be awesome if she was here to see her-OMG! So I opened the link- live show with Celine Dion taking place Feb 3rd- special guests must be able to be present on this day! HOLY S*%$ Ryan's mom will be here that day- she's flying in tomorrow.
So I entered the email that we should win the tickets and be Oprah's special guests! Diane would drop over dead(okay not really but close!)
And then the phone rang . . .
"Is this Ashley Holaday?"
YEEEESSSSS
"This is the producer from the Oprah Winfrey show, I am reading your email and would like to know if you could be here at 11am to be a special audience guest for the Celine Dion special of the Oprah Winfrey Show?"
YES, WE COULD WORK THAT OUT (holding back from rolling on the floor and screaming)
"Okay, be here by 11am for your prep, please do not wear white or beige as it does not look good on camera. Oprah would also like to invite you as a guest to the prescreening of Celine's new documentary on Tuesday night if you both could attend."
YES, WE WILL BE THERE
"Thank you, see you then"
Okay by now I am jumping up and down screaming- Celine-Oprah are you kidding me AHHHHHHHH!
Now I need to go buy an outfit, since jeans are not acceptable-shoot! Magnificent Mile here we come- (just kidding Ryan!!)

University of Chicago Appt

Yesterday was appt day in Chicago. Ryans Dr reviewed labs with us and so far those all looked good. Ryans liver enzymes increased again. Dr said that it could be from the chemo drugs going through his liver so not to worry at this time about spreading disease growth. No increase in chemo dose again since Ryan has had some toxicity symptoms and his body is just not ready for another increase in medication dose. He currently is taking 4 in the am and 4 at night.
Infusion went well. He recieved his final dose of IGF in the first cycle. Next appt we will know if it is working. He will have his CT in the 10th with results given at our appt on the 11th of Feb.
Communication will be much better with them as well. We had a serious conversation about what we needed from them, so I am hopeful that this will improve dramatically.
We are excited for tomorrow! Ryans mom is flying in to see us. The boys can hardly wait and Ryan and I are just as excited. Hopefully we will be able to go to the aquarium or do something fun with her while she is here.
Feb 13th is the official date- WE WILL BE HOME!!!!! YAAAYYYYYYYYYYYY!!!!!!!!
Much Love to you ALL!!!

Tomorrow is Treatment day and Dr Appt Day!

Genetic Test Results

We recieved the results back from Ryan's genetic testing. He has NO P53 Gene mutations. THis means that his cancer is not genetic. WAHOO!!!!!
The flip side is that this is a freak cancer, but isn't all cancer that way~it knows no age, race, or gender.
We are so very thankful that we will not have to have the boys tested as they thought before. The Lord continues to work in mysterious ways in our life, and we are so thankful for the good news.
Love to you all!

Kids Say the Cutest Things

As we were tucking the boys in tonight, I overheard the cutest conversation between Ryan and Brody~
Ryan was changing into his "comfys" when Brody said:

"Daddy, what are you doing?"

Ryan replied back "changing into my comfys buddy."

Brody says " But daddy those are your work pants, you can't wear those!"

"Well then, Im going to work" said Ryan

"But Daddy, your a Doctor and you have a cut on your belly . . . Doctors are not supposed to have cuts on their bellies daddy, why do you have cut on your belly?" Brody said with great concern.

Ryan replies " Well son, sometimes it's just not fair, lifes just not fair. Someday Brody when you get bigger, I want you to become a Doctor so you can find a cure for my cancer. That way no Dr or nurse or any other person will ever have a cut on their belly like this."

Brody quickly said "okay daddy I will be a Dr when I get big, and find out how to kill your bugs!"

Update from Thursday

Thursday was our appt in Chicago and treatment day. The trip in was fun-heehee. We took the train into Chicago and what an experience that was. After getting into Chicago we took a small(ya right) walk to get from the train station to the University of Chicago. It was quite the adventure. We made it safely though.(Apparently though, according to our infusion nurse, we walked through the "wrong" section of Chicago-woops-wont do that again!)
Ryan had bloodwork done and his labs were all good except for his liver functions which are still too high. His Dr decreased his oral chemo since Ryan was having too many side effects, and we will try to increase again in 2 weeks. We then went for his IGF treatment, and he tolerated it very well. Overall, we had a lovely day! Ryan is feeling better, and we are looking forward to Feb 10th, when we find out if the treatment is working.

Boys Singing

Our Family Outing

We went to the Albanese Candy Factory. It was great-the kids had a blast. THis is where they make most of the supply of gummy worms.
We also registered the kids today to attend school at a local Christian Church on the days that we have treatment in Chicago. They tell us everyday how much they miss all of their friends at KK's so hopefully this will help, although it will not come close to filling the gap. They miss you all so much. We recieved a video from them all today, and as the boys cheered in excitement to see them all, Ryan and I cried-we miss home so very much!!
We increased Ryans chemo yesterday, so he is up to 10 pills each day. This afternoon he has definately noticed a difference and is taking a nap. So far he has not been nauseated, just extremely tired and a bit dizzy. (Not to mention his short term memory is terrible-we joke about this daily!!) We are praying each day that he will be able to continue this treatment without major side effects.
Tonight we will be celebrating Kolby's 3rd birthday. Happy birthday big boy, we all love you so very much!! I will post pictures of his mini party tonight.
Love to you all!

Kolby wating pizze at Costco!

The boys choosing the candy they wanted

This is the tallest chocolate fountain in North America.

Pictures

Off our front porch in Indiana

University of Chicago

Maryland Ave wher U of Chicago is at 6am

Singing to Sweet Home Alabama

Kolby got into our bag while driving to get mommys mirror so he could put his lipstick on-too funny

Cheap entertainment at the Drs office- "We are ready to GO!!"

Kolby

Brody

Favorite blankets-Thanks Uncle Zachy and Auntie Jaime

Snoozing away

Kolby watching his favorite movie UP

Brody playing his leapster

HOLY SNOW!!

We had our appt in Chicago today. Of course, we left at 0430 during the biggest snow storm this year, driving a rear wheel drive trail blazer, sliding sideways down the freeway. (completely serious too by the way) and Ryan yelling out-"#*#*@ *^#*&@^ we are going home!!" We made the 35 mile commute in 2 hours, but safely. Did I also mention I despise the toll roads- how can these people sleep at night charging you so much? $3 here $2.50 there .75 everywhere-and then paying for parking at the hospital-we couldn't believe it. (WE LOVE IDAHO HAHAHA!!)

We are officially transfered to University of Chicago. next Thursday we go again for Dr appt, blood draw and his IGF Therapy Infusion. They said that it will take most of the day on his infusion days which will be every other Thursday. He will have a scan on February 10th to determine if the treatment is working, and we are shooting to head home that weekend after the scan.

We are increasing his chemo again tomorrow, since he is tolerating it so well. This will be the second time in a week. So far he is doing better than expected(as he always does :-)

As always, we miss you all so much. The snow is gorgeous here and we are hoping to take the boys sledding tomorrow. I will try to get some pictures posted soon!

Just Waiting

Good Morning.
I know it has been a bit since I have updated. We have an appt tomorrow in Chicago, so until then we have no new info.
We did start the clinical trial last week, so for now his next dose will be next Wednesday. After tomorrow we will know the exact details of our schedule from here on out.
We miss you all, and will update you after our appt tomorrow!