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 30, 2009

That classic infomercial phrase...

Day 7

After a rough day yesterday, things got a little worse, before they got a little better.

The mucositis is causing all the membranes to slough off and become VERY sore. That makes for a painful mouth and a painful bum. Just when we thought THAT was it, that classic infomercial phrase comes to mind,

"But wait, there's MORE!"

So just when we get the pain somewhat under control, SOMETHING else decides to manifest itself.

Ryan was on morphine to help with the pain. Unfortunately, it wasn't just helping with the pain, it was also making him unable to urinate. Because Ryan could not go to the bathroom most of yesterday, they decided to use a one-time use catheter last night. The reason why they are against putting in a permanent catheter, is that it poses a much greater risk of infection and it can cause a dependency. (I think that is the LAST thing Ryan wants to come home with when he leaves the hospital!)

Luckily it helped, but it HURT like...

So this morning, things really hadn't changed. The mucositis was getting worse on BOTH ends, and each trip to the bathroom was unsuccessful. Ryan did NOT want to eat or drink because he didn't want to deal with the discomfort of a full bladder that couldn't be emptied. So when the Dr came in, she wasn't too thrilled with his nutrition and told Ryan this:

"Look, if you don't eat, we are going to have to feed you via IV and it is not fun- it will give you horrible diarrhea and you will be worse off. So even though it is really hard to eat right now, and the bathroom situation is not helping, you NEED

She was VERY bold with Ryan, and that is a GOOD THING!

That is one thing you can guarantee here, the nurses and doctors do NOT beat around the bush. We knew this was coming, we have been told before that when Ryan's counts were low, around day 10, the side effects were going to get BAD. Of course, it doesn't really affect you, until you are in the moment.

By noon today, Ryan STILL had a full bladder. So, it was time to cath him again. He was dreading it, and again, it was VERY painful.

[At one point, when Ryan was very swollen from water retention and was on meds that made him go every 10 minutes he said, "Man, this is so annoying, I don't want to pee AGAIN." Sadly, it came true. You would never think that you could get so excited for "liquid GOLD"]

The combination of burning from the catheter and the mucositis was making things unbearable.

They decided it was time to start the PCA:

The PCA has helped TONS with pain management and everything got a little better as the night progressed.

However, Ryan did NOT want to walk today. I hate being so pesty about it, but the Dr did say this as well:

"The patients who walk EVERYDAY are the ones who get out early. If you walk, you want to eat. The ones who don't walk are the ones that stay here for a LONG TIME. So WALK and do your mouth care!"

So after being unsucessful at getting him to eat and drink more, I kept up the pestiness


at 10 o'clock tonight, he did this:



I will start making the Q/A part of every blog post

Q: What is a PCA

A: Patient Controlled Anesthesia

It's a pump that continuously administers pain meds and allows Ryan to have control over how often he receives the medicine. Currently, he can press the button (see pix below) on the PCA every ten minutes. If he presses it before then, it won't administer any medicine, but it keeps track of EVERY time he presses it. That way, the Dr's can assess how often he is using it and give him more or less pain meds as needed.

Q: *How long will the mucositis last? **Is there anything else he can do to help it out?

A: *Usually about 1-2 weeks, sometimes longer. **He uses a series of mouth rinses to help in cleaning/protecting the mouth sores and other rinses that have medicine to numb the mouth. His mouth hurts so bad that drinking liquids is hard. It was a struggle for him to eat some Jello for dinner.

Q: Why don't they just keep giving him platelets to be safe? **How can we donate platelets?

A: They do! Yesterday Ryan's platelet count was low, but it wasn't low enough need a transfusion. As a precautionary measure, to help with bleeding, they decided to go ahead and give him the platelet transfusion. **Patients undergoing bone marrow transplants, surgery or chemotherapy rely on platelet donations to help them recover. If you want to give back to your community or help a family member who needs platelets, donating is a relatively simple process known as apheresis. Check here: American Red Cross and they should be able to assist you with donating.

Petechia- the joys of a low platelet count:

Thank you for asking questions... PLEASE do.

I am appologizing if this post was TMI, but this is CANCER for you.


Thank you all for the constant LOVE and SUPPORT


September 29, 2009

If I could just...

I think we have all said that:
"If I could just..."
For Ryan, just when he passes one hurdle, here comes ANOTHER.
It's never ending.

We often think:
If he could just get rid of the night sweats, he could sleep.
If he could just get rid of the fevers, he would feel good.
If he could just get rid of being nauseas, it would be a good day.
But one thing is for sure, Ryan never complains.
He takes it, deals with it and fights like MAD to get through it.

Now that the night sweats and fevers are gone, and the nauseasness is under control... here comes mucositis.

What is mucositis?
It is, best summed up by Wikipedia, as painful inflammation of the mucous membranes lining the digestive tract, usually as an advers effect of chemotherapy. Mucositis can occur anywhere along the gastrointestinal tract, but oral mucositis refers to the particular inflammation in the MOUTH. Oral mucosits is common and often debilitating complication of cancer treatment.

Ryan expected this to happen, it was JUST a matter of time.
His mouth was starting to hurt a little yesterday.
He woke up this morning and had NO lining on the roof of his mouth... it was ALL sloughed off.
It has also effected his GI tract, so he is in pain everywhere.
To help ease the pain, they have him on a constant Morphine regimen. The sad thing is, this doesn't take away the pain completely, it just takes the edge off of it.

Ryan enjoying his lunch:
a mango/peach/banana SMOOTHIE

With Ryan's WBC (white blood count) being so low (having no immune system), he runs a huge risk of infection/sickness. With his platelets still low, he bleeds very easily (platelets help the blood clot). So this morning the Dr told Ryan that he was NOT allowed to blow his nose at ALL. (If he blows and it bleeds... it poses a HUGE risk of infection, and especially where it is SO close to the brain-not good). Every time Ryan just barely wiped his nose today... it bled.
They decided to give Ryan some of these today:

Well, on to happier things:
his weight this morning (in Kilos)

Look at his weight: what it WAS and then what it is TODAY
You can also see his WBC bottomed out at .1
an average healthy person has a WBC of about 10

Well here is Ryans weight:
That is a 38 pound weight loss.
38 pounds in just a few days!

His feet still have a little bit more to go, but he is feeling TONS better!

These guys are helping to soothe and relax him in the meantime:

No matter what though, he keeps on fighting.
There's a lot of these to be fulfilled:


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

September 25, 2009

Day 1, Day 2

The actual transplant day went really smoothly (pictures and details coming soon)

Then Day 1 came... NOT GOOD

Day 2 came and Ryan woke up and one of the first things he said was,
"I can already tell... today is going to be a GOOD DAY."

He ate, walked, showered, ate some more, walked some more, slept well,
and between the past two days has lost about 15 pounds of water weight.

It really was a good day.

Sorry for the picture-less and short posts.
Days have been busy and posting hasn't been the first thing on my mind. I will try to be better and hopefully on another good day... we will hear from Ryan.


September 23, 2009


from one brother... another


Thank you for all the support today


more pix/info to come


Day -2

Ryan finished the last dose of chemo Monday afternoon and then had two units of blood. His fevers, night sweats and nausea are under control which make for better days. But of course I could never end it with just that...

They had been pumping Ryan with fluids in order to flush out all the chemo from this past week. He is also on steroids that make him retain water. The combination of the steroids and fluids make for one VERY swollen Ry.

In the past 4 days, he has gained almost 30 lbs of water weight.
His belly is bloated, his legs and ankles have now become cankles and his feet look like they were inflated with air.

It hurts to stand, hurts to walk and even when laying down his legs and toes tingle from all the pressure.

They started giving Ryan some medicine to help with the water retention...

it didn't help much.


Day -1

Tuesday was Ryan's "Day OFF."
It would be the day to rest his body in preparation for the transplant.

He did just that.
He is still VERY swollen, but he managed to get in a walk with some very special visitors:

Jennifer and Annalee

Ryan's older sisters

Enjoyed this little one trying so hard to put his mask on

and enjoyed seeing his sweet little niece Ella


Because he is still very swollen, the doctors decided to double the dose of medicine that helps with the water retention.

It took a while to finally KICK in, but when it did finally "rain"... it POURED!

So hopefully in a few days he will be down these 30 plus pounds of water weight and much more comfortable.


So... today is a really exciting and big day. I know a lot of you are wondering what will happen, so let me fill you in:

Mitchell will get his last NEUPOGEN shot(helps release stem cells into the blood) and will then head over to the hospital's Red Cross clinic.

He will then get IV's put into EACH arm and sit for the next 4 hours. The blood will travel from one arm into a blood cell separator that removes only the stem cells, and the rest of the blood is returned back to Mitchell, in the other arm.

The stem cells will be counted, packaged and then brought up and hung on the IV pole, where they will be infused into Ryan like any other blood product.

Except this isn't just any other blood product. It will potentially be the life saving cells from one brother to another.

It's a BIG day.

Thank you to ALL those who are praying, fasting and thinking of Ryan and Mitchell today.

We LOVE you


September 20, 2009

What is a good day?

Lately, I have had a lot of people ask me what CHEMO is like, and to be truthful, it is different for everyone and very hard to describe. So I would like to share this e mail with you that describes how bad CHEMO can be and what the difference is between a good and a bad day.


After my first chemo, I waited and waited for the good days that everybody promised me. I finally realized that I would have to change the definition of a good day. So one day I wrote a new definition in my journal. When I changed the definition, I started having good days. I wanted to share it with you.

Tracy's new definition of a good day:

It's a good day when:

-You can sit in the recliner and watch the robins play in the tree.
-The sun shines through the window and you have the energy to get out of the chair to lay in the sun.
-You're awake when your kids get home and you get to hear about their day.
-You can sit in the recliner and be near your family.
-Someone calls to see how you're doing and you actually have the energy to to talk.
-Your husband walks through the door and smiles and your heart flutters.
-You can stay awake through a movie and you forget for a moment that you have cancer.
-You can focus enough to read something uplifting.
-You can laugh.
-You can do your daughter's hair.
-You can do your own hair. (I wrote this before I lost my hair)
-You can make your bed.
-You can make yourself something to eat.
-You can pray on your knees instead of on your back.
-Basically, a good day is every day that's not really horrible.

I look at this definition with a grateful heart. I am so grateful that I have finally been able to learn how to enjoy the simple things in life. I've learned that it's okay to eat oreos in the living room. There are worse things than mud on the carpet. If your visitors see dead flies under your window, they'll still be your friend. Most of the things I worried about really don't matter now.
One of the things that will get me through tomorrow is knowing that good days are coming. I love my good days. I cherish my good days. I hope you are cherishing yours.

Love, Tracy

I want to thank Tracy for this e-mail that's helped me to understand what a good day is, and also to be able to share with others what CHEMO is like. Each good day is such a wonderful blessing and gives me the hope and faith to fight this cancer. It reminds me of what I am fighting for. Thanks for your love and support.



Here's a "good day" in pictures:

Being able to show off your anti-nausea patch

Feeling well enough to watch your kids play

Reading e-mails from your daughter

Being able to laugh when your son knocks over a fan and gets embarrassed

Reading about:

Being able to sit up and shave


...and holding it down

Being strong enough for a walk

...and even getting in a half mile!


Such a blessing for good days