Follow along and read about how Ryan spent his final days surrounded by those he loved the most... his FAMILY.

You can follow my blog at: Our life in Letters to Ryan

December 2, 2009

How far we've come...

Wow... time flies and I have been bad at keeping everyone updated. Busy?!?... Yes, and contemplating about what to do with this blog. Ryan thinks that people get annoyed of hearing the SAME thing day in and day out. True... maybe? But that is what is GREAT about a blog, people can check it as frequently or infrequently as they wish. So, if this is becoming repetitive and annoying, I guess, stop reading now. Otherwise, enjoy and join the FIGHT.
I am always thinking of things to write. See, this has become my way to help document what is going on in our lives... and I will continue to do just that. I know many of you enjoy hearing whats new, so here it goes:

-We are on our "OWN" again.
For 6 months our families have taken shifts, for weeks at a time, to come out and be here to help us. There was ALWAYS someone here- to either be with Ryan, or to be home with the kids so I could be with Ryan. Every single sibling has been able to be here and some have come multiple times. Our parents have sacrificed SO much time and money to be here to help... We are forever grateful. The relationships that have been strengthened in our families is a true blessing of this trial. How sweet the blessings that are given to a family... definitely in ways you would never expect.

-Ryan is down to ONE appointment a week
Isn't that GREAT NEWS from yesterday's appointment!?!
He still comes HERE:

Since our family is gone, I still take Ryan to all his appointments, except I have a tractor loving tot with me. I drop Ryan off, and Max and I hit the town. (Thank you SUPER TARGET for a HUGE toy section and dollar popcorn!)
Ryan's counts are pretty stable. Like I said in a previous post, sometimes a count will drop or another will rise... but everything is looking good. Ryan is progressing VERY well and prayers are being heard and answered. Thank you for the prayers, PLEASE keep them coming- Ryan is winning the battle, but it's NOT over yet!

-Ryan's kidneys are not a fan of his fluid retention meds

About two weeks ago we got a scare.
Ryan called me from his appointment and said he was on his way to the hospital. WHAT?!?!?! He told me that some of his levels that measure kidney stuff were HIGH and they were concerned, so they wanted him to get an ultrasound on his kidneys to see if anything was going on there. He said it could JUST be the medicine that helps with fluid retention, but it could also be something much worse and to rule it out they needed to do an ultrasound. Luckily, his kidneys were fine and they took him OFF the medicine for a little while. After getting his lab results back yesterday, they realized Ryan's kidneys were being affected AGAIN, so he now has to cut back on the water retention meds.

-Ryan is gaining AND losing weight

It may look as if Ryan is gaining weight because he is. Unfortunately, it's not the weight he wishes he could put on, instead it is fluid retention. The fluid retention is now making it's way to his face and he wakes up so swollen that sometimes he can barely see out of his eyes. On Monday, at his appointment, he was down 2.5 pounds (YAY!)

Well, this week has been exceptionally busy. Ryan has had an appointment EVERY day and today we finally get a break!

-Ryan's hair is starting to grow back

It has been 3 months since Ryan last had chemo and should it be the LAST time too! We have all wondered when it was going to start growing back and sure enough, last week it started sprouting up on his chin and the top of his head. Since his hair is scarce and thin and not really growing on the sides of his head, we shave it with a beard trimmer. Hopefully in the next few weeks it will be thick enough to let it keep growing in.

Lets take a bet to see how it will grow in!
The POLL is on the TOP RIGHT SIDE of the blog

Here are the past couple weeks in review:

Ryan's parents stayed here:

and invited us up for lunch one day, so we happily joined and had a fun time checking out the grounds:

Max LOVED the "ho-thee"

I had to snap a picture of the pumpkin because it weighed EXACTLY as much as Ryan


Ryan has spent a lot of time playing with the kids
and going for walks

We took the kids bowling...

...and had some good laughs!

Wow, those balls took FOREVER to roll down!
So glad the kids had a blast.
Do you like the "fancy" bags that Ryan's meds come home in?

We can thank this med:
for the "gift" bags!
I spend a lot of time going through and sorting these:
Ryan is almost my million dollar babe.
We are so thankful for GREAT insurance!
Do you remember me telling you that some WONDERFUL friends came together to form the TEAM RYAN FUNDRAISING COMMITTEE? Well, they spent a LOT of time putting everything together and we all celebrated the end of a successful event.


Ryan (we) enjoyed watching this with Hallie
The Hannah Montana movie.

We celebrated a wonderful Thanksgiving with our friends, The Burns'



Then there was some football watching going on:

and Ry rested his swollen little legs
Ryan showing off his new BLACK compression socks

The kids were entertained
watching THIS:

and then some of us adults played this fun game:

and Ryan enjoyed his run as "President"
Thanks Burns' for a WONDERFUL and memorable Thanksgiving
Then for Family Home Evening this week, we had a special lesson on the birth of Christ and let the kids hang ornaments
(Thank You Grandparents for the Dec. 1st presents!)

Then they slipped into their new Christmas jammies:
How funny, this picture makes them both look more like CONVICTS!
Partners in crime
Lastly, I will end with something Ryan enjoys doing every day
Our master gardener.
I can't garden- that was one skill/talent I wasn't born with. If it grows in dirt, I can kill it. Don't believe me?
I killed our baby cactus!
Believe me now?

Ryan really enjoys and takes pride in his gardening.
I was looking back at photos from the past few months and I still can't believe some of the things Ryan went through... Ryan was reminding me how at a certain point, he was so weak he couldn't even open his own Gatorade bottle...Wow... Look at how far he's come!




Heather n Ryan said...

Margie-Dont stop isnt repetetive at all! We are always thinking about you guys and how things are doing, so its good to get updates...even if there hasnt been much change. As long as he is doing good, thats all we need to hear! And plus, I always love seeing the cute pictures you take of your adorable kids!

Heather said...

Great to hear!!

Erin S said...

So glad you guys are doing good! Yay for Ryan's hair growing back in!

Seth and Julie said...

Ryan, we are not sick of hearing about you. I start to shake and suffer withdrawals when you don't post. You can post every day and I will never get sick of it. I love seeing that my friend Ryan is still here, still fighting, and not going anywhere. We are watching a beautiful miracle unfold. We are growing closer to God through you. I promise I will never get tired of that.

It is so good to see you out and about, and away from doctors. And home playing with the kiddos, and out bowling....holy cow, have you come a long way!

I loved the Thanksgiving pics and I must say it made me reminisce about the awesome Thanksgiving that we once shared. Fun times. We must get together and create more memories soon.

I also love the candy cane/criminal jammies on the kiddos.

And all I have to say about the million dollar man there, is that he is WORTH IT...and then some.

Love you guys! Please keep blogging!

Hoenes Family said...

I don't think anyone gets sick of your posts. They are not repetitive, they are inspiring.

Katelin said...

Yes, I vote for keeping up the blog, and I LOVE it. So glad that stopping the blog is even a consideration, because that means things must be normalizing in some ways, right? Even when there isn't medical news to report anymore (which will hopefully be soon!!), you will always be blog worthy!!

Great update--glad you've been able to enjoy things, and I wish I could send a million dollars or more, and I wish I could be nearby to help out now that family isn't there 24/7. It looks like you have quite an awesome support system there, though, and I know you are super capable, Margie!!

Thanks for sharing your miracle with us! Love you all!

Kim said...

You'd better keep up this blog! We all love it! It's great to hear how your family is doing and we love seeing the photos (love the "convict" jammies). You're always in our prayers!

Mira said...

hiya!even though im knew to ur blog, i think u should keep doing it! if nothing else its therapeutic. also, ur posts are interesting :) if u were boring i would tell u:) thx for following me, ill try to make some kid friendly recipes soon so u can make em with ure kids. Glad to hear ryans doing better. stay positive, do happy things and believe! hugs

Mira said...

lol..i just noticed i spelled "new" as "knew"..thats a sign i should prolly go to bed

Tanya said...

Love the updates! Ryan I feel your pain with the compression stalkings. I "HATE" them!!!! I had to wear them for about TWO years straight with Case, and Junior! They were so hard for me to put on, talk about a work out. Are yours full leg or just knee highs? Mine were the full thing. Ouch!! I know they're great, and do a good job but they are a pain.
Keep up the blog. We love to hear how your sweet family is doing. thinking of you! Love you guys

Jared & Courtney Jackson said...

I love hearing the updates. I don't ever feel like they are boring. :) I am so happy Ryan that you are feeling better. Keep on fighting!

Gary said...

Loved the pictures, Margie. We sure miss you guys and we send lots of love your way. My favorite picture was the one with the kids hanging ornaments, you did a beautiful job. Nice to see you enjoying lots of things Ryan!