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

September 27, 2009

Catching up...

The title of this post is self explanatory... consider it your warning.

Day 3
Said Goodbye to his brother and sister

~Mitchell and Annalee~

Was tired and swollen
(and not really in the mood for pictures)




It started off really really bad.
Ryan went to bed Saturday night with a headache. Since his platelets are low, he cannot have Motrin or Advil, so he went to bed thinking he could sleep it off. Two hours later, he woke up with a really bad migraine. He was very uncomfortable and wanted something for it, they gave him some pain meds and that didn't really help, so they contacted the Dr on call and he wrote for something a little stronger, morphine... it did NOTHING. He spent the entire night feeling horrible and restless. They kept giving him more pain meds and finally he was so medicated he was able to catch a little sleep.
Then morning came and Ryan woke up with an even worse migraine. All he said this morning was,"If I could just get rid of this migraine, today will be a good day."
After tossing and turning all morning long, Ryan was completely miserable and I was really upset. I didn't like that they kept offering more pain meds but not treating the actual problem... the MIGRAINE. I spoke up about getting Ryan some meds to treat the migraine... not the pain. They contacted the Dr to get an order for migraine medicine, within a half hour of getting the meds, Ryan was feeling TONS better.
He slept a good majority of the morning and then woke with a small lingering headache. He received more migraine medicine and after his next nap, it was completely gone.
With the migraine gone, it was time to start enjoying this "GOOD DAY." He was feeling well enough to eat breakfast, shower and even go for a lap around the floor.

But why just one lap...what cut the walk short?

Although Ryan has lost most of the water weight...he still has another 10 pounds to go and his poor feet are holding most of that water. Even with his shoes completely loose, his feet are still stuffed into his shoes and it is really painful.

He is starting to get mouth sores, and dealing with some of the other side effects of chemo... but overall, he is managing everything really well. His white blood count is almost completely bottomed out, meaning he has NO immune system. It is at this time that he is very susceptible to risk of infection and illness. He did get a platelet transfusion this afternoon because he was low.
His body is extra tired and weak with no immune system, so after his platelet transfusion, he continued sleeping:

Blanket his sister Jessica made

He ate a decent lunch, slept, had a visit from his sister and also got to see and talk to his two favorite kiddos:
Sometimes visits from the kids can be hard, so we have started doing new things to keep in touch- videos on the camera and visiting via web cam.
Ryan said goodbye to the kids and drifted off...
He had another pretty good day
When will you know if the transplant has worked?

It varies, there is no set day or time frame. A lot depends on his white blood counts, how he is doing and making sure he is showing now signs of Graft VS Host. It is usually about 14-21 days before we will have any "real" idea of how he is responding to the transplant. He will have another bone marrow biopsy on day 28 and those results will tell us a lot.

Mitchell began the day getting his LAST Neupogen shot at the cancer clinic and then headed over to the hospital to come HERE:

He had to have one last consent reading and signing:

Then it was time to change into the cute gown... but first one last pix of Mitch
Love his shirt...
...Love HIM!

Once he was all dressed in UMC's finest.... it was time to start.

Getting his veins ready



and poked

When most people get IV's put in, the needle makes the initial poke and then a small tubing is inserted and the needle comes out. Mitchell had to sit for 5 LONG hours with needles IN his arms. Having your arms outstretched for an extended period is quite awkward and not being able to move makes it even worse. If Mitchell moved just the slightest bit, he risked blowing a vein and having to start all over again. It wasn't just awkward, but painful as well and because Mitchell is not a fan of blood, he was very nauseas most of the time. The combination of not being able to move, be in pain and be nauseas, made this not only difficult to bear, but difficult to watch.

Mitch's stem cells ready for counting and one last separation

Mitch could have finished a half an hour earlier, but he decided to go an extra half hour to make sure they got all the cells they needed. They needed 5.4 and Mitchell produced 9.6
They will freeze the remaining amount for future use, if needed.
Meanwhile, Ryan was up in his room just like any other day.

We did add some things to Ryan's room- more pictures, more encouragement.

the banner says: PEACE, STRENGTH and:

More family love:

It had been a good day.
He ate, slept, showered and walked.

Then 4:15 was time.

The nurses are checking over names and numbers

Nurse Ann holding Ryan's life saving cells

After the bag was hung, we all watched the cells go down the tube and infuse into Ryan.
It was a very emotional moment full of

Thank you Mitchell
We LOVE you


The Kindle Family said...

Awesome! Congratulations Ryan ! We will continue praying for you!

Tornado Alley said...

It is really neat to see pictures of that important day! It is so great that Mitchell could do that for his brother. We'll pray that the count for those white blood cells can start getting higher! We hope Ryan can rest and recover and that you all can be in good health.
You're in our prayers!
The Varela family

Seth and Julie said...

Okay, first of all...I hope I didn't sound rude asking when you would find out how the transplant is working. I kicked my butt about that for days. I am just so anxious to see Ryan well again!!!

I love the picture of Ryan's mom with Mitchell. I can't imagine what she is going through watching her boys go through this but you can see so much love in her face. Big hugs to her today!

Lots of love to all of you!

Sorry about all the yucky moments but it is awesome that Ryan is looking for good days. Keep your hope are on your way now.

Jaynee said...

Thanks for keeping this up Margie. We wish we could do more than just read and pray but hopefully that helps a little bit.

JJ said...

Hey, man--hope you're having a good day. It's been inspiring seeing you fight...

Katelin said...

Hey guys, I think this is such an amazing way for you to share with us all, and it makes me think of the phrase of bearing one another's burden. All of those who are reading your updates and praying for you are wishing there was more they could do to ease your burden, but I hope it helps you in some way to at least know you have so much support and love coming your way! I'm not doing a great job of expressing this, but just THANKS so much for being willing to let us all in and taking the time to express your thoughts and update us through all of this.

Thinking of you constantly! Love you all.

Anonymous said...

Margie, you are doing such an awesome job of keeping everyone abreast of what's happening. I'm sure it's a good thing for you to pass the many hours of sitting in a hospital room. Hope things continue to go well and hope you are doing well also. Love you guys. We're all rootin' for you.

Lynn said...

Okay, so I'm holding a baby and accidentally hit the wrong button. It was me (Tanya's Mom0 that wrote the annonymous note) Sorry about that.

Gary said...

Love those special sons of mine, crying many tears right now as I read this.
Mom Hess

The Thomasons said...

It's great to see all the family unity. What an your brother life...and what an amazing wife to decorate his room like that. That is the coolest hospital room I've ever seen. What an inspiration for him to keep fighting. Go team Ryan! We are praying for you.

Heather said...

Wonderful brother! What a great blessing for you all.

Hoenes Family said...

I know you don't know us (the Hoenes family) we live in Rancho also and are friends of the Burns. Anyway, I just wanted to say that we wish you well and we are praying for everything to go well. We fasted for you yesterday. Thanks for writing this blog, it is very inspiring.

Emily said...

I really appreciate you keeping us updated via the blog. We think about ya'll often and pray for you every day. We are so proud of how you are handling everything and it truly is inspiring to watch you fight this as a family.
I love the room decorations and the great blanket.
We will keep praying and you keep fighting!!

Lila said...

Ryan and Margie
We've prayed for both of you many times and still do. I'm grateful you keep the blog and keep us updated. Even though I don't know you personally very well, we love your sister/in-law Jennifer and know how much she loves you. That makes it even more personal for us that you continue to do all you can to get healthy. I'm so glad to see your family rallying around you. They are wonderful and I believe this only makes them more dedicated to you, to one another and to our Heavenly Father. God Bless, have fun and love each other while you are hopefully blessed with greater health than you have been recently enjoying.
Sincerely, Your Tennessee Family:
Mike and Lila Stuteville (bennett's favorite sister, he he)

Tanya said...

I'm so happy for you guys, what a neat spiritual time in the progress of the transplant. I'm so happy to see miracles happening. I need to remember to grab the tissue box before I read your updates. I know how you must be feeling at this time of waiting. It wasn't too long ago that we were in your shoes.It's an exhausting time in the process both physically, and emotionally for everyone. Remember the tender mercies of our Father in Heaven. Thanks so much for the updates! We love you guys! Keep up the FAITH!

Jen Day said...

Ryan and Margie-
Hello guys! It is Jen from Northwest. We miss you and your beautiful family! I am glad to see that you got your transplant and that your having good days! I would love to come and see you is that ok? Margie, is there anything that we can do to help you or your family with anything? I hope to hear from you guys.. my email is let me know if you guys need anything! Im praying for you buddy!

jill said...

Thank you for the updates. And for making me cry. There is a spirit about your posts about this time in your lives - a spirit of optimism in spite of all the trials. Thank you! Sending more prayers your way.