Saturday, February 27, 2010

Will Update ~ Day 9 ~Feb. 26

Another good day today. First my apologies. I think I got the date wrong on yesterday’s report. It was the 25th, not the 24th.

We got the results from the draw taken yesterday (Thursday). Will’s wbc continues downward and uric acid was in the normal range for the first time today.

The doctor is pleased and says Will can go back to work next week if he feels like it and I should be at ease about leaving him and returning home. Note the word “should”

Right now, we are enjoying having Thomas with us. He will fly back Sunday. The plan is for me to stay and make sure Will has a good day at work on Monday then I will return home on Tuesday or Wednesday.

If things keep going this well, I won’t be updating so often, but keep us in your prayers. The goal is to have hematologic remission (normal blood analysis) in three months or less. Thanks to all of you again for all your prayers. God is good and we are blessed.

Friday, February 26, 2010

Will Update ~ Day 8 ~ February 24 (written a day late)

Good news today. The wbc was down for the first time. We had a chance to talk with the doctor. He is delighted that Will has no virtually no side effects and says he is more concerned with liver and kidney function which is looking good.

Again he extolled the virtues of the Gleevec…..high probability of remission, virtually no side effects after initial introduction, a normal life with no signs or symptoms of leukemia once hematologic remission is reached, history of long term successes, etc

We are so thankful to a great and gracious God who, before we ever knew we would have this need, before we ever knew what we needed to pray for, looked ahead and provided not only this drug and the research behind it, but also provided so many other things that enabled us to cope at this time. Not the least of which is all the friends who have lifted us up in prayer. Thank you from the bottom of our hearts. We love you all.

Tuesday, February 23, 2010

Will Update

"Seems" was the operative word in the yesterday's report. The WBC in yesterday's test was off the charts for the doctor's in-house equipment. It has been all along. That's why we have to wait on LabCorp. We finally got it back and the WBC had risen on Monday. It has risen in today's sample also. It’s gone from 205k on the 11th to 244k on the 22nd and, now, 263.
Dr. Mirtsching does not seem too alarmed. According to his nurse, it sometimes takes a week to start working. Looks like I will be here another week after this. I will stay until the doctor says it is ok to go.
I hope everyone is getting the emails. My outlook does funny things when I send to long lists. I am attaching a read receipt to this one so I will know. I have thought of setting up a Caring Bridge account. It would be easier for me, but Will says to let him think about it. I will honor that.
We have lost count of all the churches who have put Will on their prayer list. Please know we are so thankful for each and every prayer that is lifted up. We most definitely feel them.
Praise God, Will is still not having bad side effects from the meds. If you’re on Facebook, you know his spirits are still up. God is good! We are still trusting him to work this all out in His way and in His time.

Monday, February 22, 2010

Another Update ..........

We had a roller-coaster weekend; nothing medical, just emotional. But today was much better. We got the results from the bone marrow biopsy confirming the diagnosis, but the blood work showed improvement. With CML, the white blood cells are either overproducing or not dying off as they should and are crowding out the red blood cells which results in low RBC. Today, the wbc was still out of range for the in-house equipment at the doctor’s office so it had to be sent to LabCorp. We will hear from it tomorrow to know for sure, but are expecting that the WBC is dropping, because the RBC was up.

The doctor is pleased that the only side effect Will has had from the medication was a little nausea this morning. We are thankful to a great and gracious God and are trusting in Him.

I have thought about setting up a Caring Bridge (see account for Will, but it looks as though the critical stage of this will be behind us soon. If for some reason, we find out the medication is not working and it appears this will be a long, drawn out ordeal, I will do that. So for now, just forward this to anyone you think might be interested and, if they respond to me at the email above, I will add them to the list. I only have one or two email addresses for fellow church members as my lists are at home. I didn’t know I would need them.

Some have asked how this was discovered. Will had been to the doctor for a lump that appeared on his chest. They thought it was just some fatty tissue, but come to back in two weeks. When he went back (on the 11th), it had shrunk a little, but the doctor had blood drawn. With an upper limit of 10,000, Will’s WBC was 205 thousand. His RBC was low. An appointment was made with the oncologist for Thursday, the 18th. Dr. Mirtsching, the oncologist thinks the lump is just a collection of white blood cells.

I want to thank everyone for their prayers and well wishes. So many of you have put Will on the prayer list at your respective churches. Please know that these prayers have been needed and appreciated. Please keep it up. Although today was good, we are not out of the woods yet. Thank you from the bottom of our hearts.

Update on Will

I am thankful today. Results of bone marrow biopsy confirms the CML (Chronic Myelogenous Leukemia) diagnosis for Will, but blood tests seem to indicate meds are working and Will has had virtually no side effects so far. Doctor was pleased. We are not out of the water by any means, but today is a good day. Thanks to all for your prayers.

Texas Adventure ~ Days 3, 4 and 5


We had a good day today. No ill side effects yet. I am wishing that I had brought Victor (m violin) with me. I am thankful that I did bring Romeo (my computer) though.
We bought a wireless router for Will since he didn’t have one and we had some issues with it working. We got it working finally so, Will has his computer back and Mom and I are on ours. Well, then we lost signal so, we called some people and got it fixed. Every time we lost signal. I would get on someone else’s wireless signal.
Will is complaining of being hot. He broke out in sweats one time.


Today was filled with ups and downs but, mostly ups. We had issues to deal with but, God in His infinite mercy and grace worked it out in which I thank the good Lord!!!


For my b-day, we did …… nothing. Well, I say nothing. Last night, Will and I watched a movie called: Paul Bartley: Mall Cop. Twas a good movie but, kinda hairy in places.

Until next time .....

Friday, February 19, 2010

Texas Adventure ~ Day 1 & 2


Mom and I started off for Texas around 5:30am. Mom drove to Troy (which I think is 2 1/2 hours away) and she got sleepy so, we pulled over and she let me drive. I drove from Troy to the Alabama/Mississippi State line. Mom drove through Mississippi but, she let me drive the last 1 hour and 45 minutes so that I could say that I drove across the Mississippi River going (since I drove over it, going to Alabama last year with grandma) to Texas. Mom drove from the Louisiana line all the way to Dallas and to Irving (which is a suburb of Dallas). We got to Dallas at 8:00 Wednesday night.


Will has been diagnosed with something called: CML. CML = Chronic Myelogenous Leukemia. Today was sad day. I could not cry really hard like I wanted to. All I could do was tear up. I'm scared for my brothers safety. I am careful to make sure that he does not lift anything heavy. The doc says that Wil has probably had this CML stuff for a year if not 2.

It looks like that I will be celebrating my 24th b-day here in Texas.

We (Mom and I are helping Will to set up the new wireless router that we bought him since he didn't have one. Mom was using his computer to work on and I was using someone else's internet connection.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

For those of you who did not get the email that Mom wrote, here it is:

I made a hurried trip to Dallas on Wednesday. Will had found out on Monday afternoon that his doctor was sending him to an oncologist. The appointment was today, Thursday.

We found out today that the reason for calling the oncologist was Will’s white blood count was extremely high (20 time the upper range of normal) and his iron was low.

Today, the wbc count was off the charts. The oncologist, Dr. Mirtsching is 99.9% sure it is CML, chronic myelogenous leukemia. We will know for sure in three to five days when the results of the bone marrow come back. But since the wbc was so high, they are starting treatment right away.

Ten years ago, this meant an automatic bone marrow transfusion. Today they have a choice of two or three drugs. The one that has been in use for about 10 years is Gleevec. It has a success rate of 93% and is very safe and the drug of choice for now. It is very expensive (five to six thousand dollars per month) but Will has good insurance. He will only have to pay $100 per month once his deductible is met. He met that today.

He will be out of work for at least a week, maybe two, due to the side effects and daily monitoring required b/c of his body throwing off so many white blood cells at once. It will stress his kidneys and what else, I can’t remember right now. The doctor said I need to stay out here until the side effects have passed. Again, at least a week, maybe two. Once he is past this stage, his life will be pretty much normal.

Our first goal of treatment which should occur in 0-3months is hematologic remission. This is when the blood work (wbc & iron) looks “good.” By that I’m assuming the doctor meant “normal.”

The second goal is to have cytogenic remission in six months or less. That is when the bone marrow is normal.

The third goal, hopefully to be met in a year is molecular remission. This is when the stem cells in the bone marrow look normal.

Even if these goals are met, Will will have to be on the medication for the rest of his life. But things could be worse. I trust God that that will not be the case.

I am sorry to be so lengthy. I know this is information overload for some, but I also know several on the list would want these details and I don’t feel like sorting that our right now. I am sure I left some people off, so feel free to forward. I hope I got it all right, but we had a lot to absorb today.

Please pray that the Gleevec works and the remission goals are met. Pray that the side effects will be mild and that Will can return to work in a week or two at the most. He will be miserable not working. Pray that we all adjust to coping with this the rest of our lives. Pray for Thomas while I am away for so long. Pray for Will when I have to leave him.

We’ve had a rough day, but God is good and gracious. Even though we’ve cried, he has also brought us laughter too. He has already provided so well in many ways. Those of you who know Will’s history know that God has brought him through rough waters before and I know He will again.

Thanks so much for your friendship.

Thursday, February 4, 2010

Now to finish writing about my Pennsylvania adventure ....

Lets see, I think I wrote about the prison and how we went in and toured it!! Well, here are some more pictures:

This is one of the iron gates:

This is the wardens office:

The blacksmith shop:

I didnt get the thing that tells about the kitchen in the picture but, I am including it in here anyway:


The Kitchen:

This is the bathroom (as you can see). There as 4 cells side by side and in the 5th *cell* block there was a commode and a sink:

On Friday afternoon, Kim, Kris and I FINALLY arrived in Erie!!! I was so excited. When we got off the plane and walked through the airport to the door, I expected someone to be there and ..... they were not. I got on my phone and I called Mark and asked him if there was someone that could come and pick us up at the airport. He said yes and that they (Mark, Carrie (?) Katie, Chad and Matt) would be there in little while. I thought: WHAT!?!?!?!?! We are finally here and we have to WAIT some more?!?!?!?!?!?! Well, while I was talking to Mark on the phone, here he comes walking through the revolving door. I was even more excited cause, some close friends came and picked us up.

The rest of the week end was a blur and I cant remember what all we did.

Monday was .... sad!! I didn't want to leave, Mark and Carrie and Kayla(who saw us through security). I cried and I was sad. I was expectantly waiting to see if God would bring me that big snowstorm that I kept praying for but, He didn't. Instead, he gave us a pretty day to fly out on and I took pictures from 10,000 (maybe more) feet in the air but, I cant find them anywhere on my phone. They were so pretty. I got pictures of the ice on Lake Erie ... Anyway, back to my epithet. Our plane was a smidgen late in landing in Detroit and I looked at the monitors to see if our plane was on schedule and it was already BOARDING!!!!! So, Kim and Kris went through Mc'd's (McDonalds) and I went to the bathroom and we ran to our plane. While we were there waiting in line, they saw that I had a water bottle and so they tested it for something I dont know what. I guess they thought that a person would kill someone with water ...

Anyway, so we got on the plane to Atlanta. While we were still an hour from landing, a 4 year old boy decided to have a bloody nose and bleed through his mouth. He screamed bloody murder and so the stewardess got on the PA system and asked that if there was anyone on board that had medical experience to please go towards the screaming tot. So, several medical professionals showed up and got him to calm down and the the stewardess said that when the plane lands for everyone to remain seated so that the paramedics can come and get the child and his parents off and everything.

So, after we landed we did as we were told. We run walked (sorta running sorta walking) from the airplane to the place where we would ride a shuttle from the airport to Columbus Georgia so that Mrs Godin could pick us up. See Kim' Version for details on that. Got to Kim's house around 7 I think or it mighta been 6. I got to my house at 10 and I still didn't in bed until 1:30 cause I was writing the first half of this thing.

Anyway, I hope that this has been interesting reading to you guys!!

Until next time!!

Wednesday, February 3, 2010

14 hours is not enough sleep ~ Kim's Version

is not enough.

Kris and I woke up Wednesday morning around 9am.
Kate arrived around 4pm. Mom and I went to pick her up.
We stayed up til 2am chatting online.
Mike and Gabe drove us to the Atlanta airport and played Owl City a large portion of the time. I'm convinced people only like Owl Soup because it sounds like video game music.
We got to our gate with no problem. The security miss was grouchy.
We laid around not really resting....then went to Burger King "Have it your way". I did not get my way. I wanted a whopper and they said only the yucky breakfast stuffs was being served.
Boarding the plane, we found our seats at the very far complete back. But the plane did not fill up. So we were allowed to move forward. I found us some nice comfortable looking seats together -exit seats.

"Excuse me, are any of you over 16? Because I'm afraid you can't sit here."
"Oh, I'm 18."
"I'm 21"
"I'm 23"
"Oh! Oh I'm sorry. You all look a bit underaged. I was just checking"

We didn't get the speech. hmph. So, Kris and I studied and studied the emergency card to make sure we got it right. "But nothing happened. What a waste of study." - Kris :P

In Detroit we walked as fast as possible to our gate and found it....closed. The flight had been canceled.
So we freaked out and called around and heard we might have to stay at the airport for 24 hours....and I freaked out some more. I HATE airports. And we only brought three packs of playing cards to pass the time. We had a little prayer meeting and begged God to help us out. Kate cried. I shed two tears in the privacy of the bathroom to get the weight off my chest.
The airport personnel put us on standby for two different flights.
We didn't make it onto any of them.
Kate finally got us a flight to Philly and then Erie.
I was happy we didn't have to stay in Detroit.
I tried to steal somebody's seat because Kate said it was fine to do so. The disgruntled lady did not like her seat being taken. So I was stuck sitting next to a Jew who slightly resembled Daga. He was nervously studying for something and completely ignored me. I was fine with that. He smelled. And was on the way to being pudgy. ....He had a very thick Philly accent...

In Philadelphia, we happily waited for our flight.

"'scuse me ladies and gentlemen. The flight to Erie will be a bit late because the plane has been delayed in Roanoke due to mechanical issues"

ok, we're fine with that. We dozed a bit more.

"Ladies and gentlemen, the flight to Erie has been canceled"

We shot upright in horror.

Kate and I stood in a long line at the counter waiting for a solution to appear. The guy behind us was cussing up a storm. If he had a TVG hooked up to him, he mighta been rather funny. :P
The counter was closed before we got to it. So Kate and I ran to the opposite end of the airport to be second in line for help. I left Kate there and ran back for Kris, and we ran back to Kate toting all the luggage.
I called mom for my aunt's phone number and she came to get us. She lived just across the river in New Jersey, so twas all well and good.
While waiting, Kate called several friends. Most offered sympathy. One laughed. Guess who that was. :cough:

When we got to my aunt's house, her dogs were rather excited to see us.
We took off our coats and shoes.
I stepped in something wet on the floor.
I threw away my socks.

Friday morning, my aunt gave us a quick tour around her town and we went to the haunted prison. Many pictures were taken.
My cousin took us to the airport and gave us his number in case our flight was canceled again. Fortunately it was not. But I did not trust them. While standing in line, I kept waiting to hear the cancellation announcement. When we reached the ticket counter, I waited to hear her tell us the plane was too full. We got inside the plane and I found where I was supposed to sit. ...and there was a very....big person. Taking up both seats.
I was so tired, and I just knew something else had gone wrong. He looked up at me with a pleasant smile, and I asked

"Did you pay for both seats?"
"No. Are you sitting here?"
"Yes..." I stare at the 4 inches of space left...wondering how I'd fit in...
He tried to move over, then paused a moment:
"You have seat D? That's the window." He starts to get up and give me the inside seat.
Now I'm going to be squashed between him and the window? o_O
I replied "No, D is the aisle seat."
"D is the window"
"D is aisle"
"D is window" He looks up at the little seat pictures on the luggage compartments. "Oh! You're right." He sits back down.
Along comes Kris. "Scuse me sir, you have my seat"
He moved across the aisle, and poor Kate had to sit next to him. Fortunately she found someone interesting to converse with.

Arriving in Erie, we happily ran out to see who was waiting for us. Nobody was there. gah! Did they forget? Could no one come? Must we stay longer at these horrible torture houses called airports? Kate calls Mark....and in through the door marches Mark, Chad, and Susan! Hurrahness! Then comes Katie and Matt. Kate went home with the Hughes, while Mark toured Erie and got us lost looking for a Walmart Supercenter. Chad found us.
We got what we needed and went home.
Pizza was for dinner.
More happiness.
Mark taught us how to play San Juan. Fun game.
We stayed up waiting for Carrie and the rest of the Orths to arrive. Storms were giving them annoyance.
They got in around 1:30am.
After talking, we went up to bed, and laughed a lot about....something... >_< and fell asleep.

Saturday there was a contest to see who could peel off the most aluminum off the candy wrappers of Mark's bonbons. Katie started it. Jake put the most effort into it. Mrs. Orth won. :P Everyone else just watched.

Off to the archery club where we met everyone else. Sledding was fun. A snowball war broke out several times. We played "Do You Love Your Neighbour" ^_^. Dancing was fun. Food was good. I had a bad headache all day. During the fourth round of the Virginia Reel, I felt like I was going to pass out.
Back at the house......I forget what we did. :P

Sunday we had church meeting at the archery range. Then we went ice-skating. Everyone was impressed with my marvelous ice-skating and falling skills.
We went back to the archery club and talked, and played, and danced some more. And ate. Eating is good.
Some people played their instruments. Was fun to listen to. One girl had a squeezebox. Vera cool.

Back at the house, we gave Mark his birthday presents. He liked them all.
Chad had to teach us to play Rook because the instructions were all wrong. :P
We played another game of San Juan.
I decided to try coffee for the first time. Kris joined me.
Mark and Carrie watched expectantly.
It was black. It was hot. It tasted like dirt.
I only drank about 1/4 of a cup. I do not like the feeling it gives. Tired, yet awake. There was something else, but I couldn't put my finger on it. It concerned me enough that I don't think I will try coffee again.
I stayed up til around 3:30am. Kinda joined in a debate. Got really mad and said something stupid, so I went to bed.

Bad night of sleep. Kept waking up every half hour. Woke early. Got a shower. Packed.
We played spoons.
Then I found out I had an 45 minutes before we had to leave, so we were happy.
Then some mindgames/jokes told. Kris and I knew them all. :P
Goodbyes came.
Mark, Kayla, and Carrie accompanied us to the airport. Not too much was said.
At the airport it was discovered that Kate had left her license and snow pants back at the house. So we sat around waiting for Matt to run them over. We talked.
Goodbye was said again.
We left.
Our seats on the plane were at the very front. Fun.

In Detroit, we picked up some lunch at McDonald's. They accidentally threw in an extra hamburger. :D
We just barely made it to our gate in time. They were already loading.
On the way, a little chinese boy (about 5yo)started crying and screaming. He had a bloody nose and was coughing up blood. The captain called out for anybody with medical experience to please help out.
Four dentists appeared. :P
There were three doctors that helped out.
When we landed in Atlanta, they rushed the family out first.
We took a bus to Columbus.
The driver scared us at first, telling us we had to get off if we had no tickets. :shakes head:
Two old women, and one man were our only fellow passengers. No military dudes to flirt with. How disappointing.

Mom picked us up. We went and got some milk and pizza, and went home.
Kate's mom and grandma came and got her.
I narrated the flight tales to the family.
Kris and I demonstrated in-line dancing. :P
And then we went to bed.

Tuesday, February 2, 2010

It started out awful but, it turned out awesome!!!!!

Wednesday afternoon/evening: I woke up around lunch time and played the piano and the violin and the took a shower. Aunt Judy had come down for the day and was going to go back up but, mom suggested that I ride to Crawford, Alabama (which is a dead town and is the half way point between Kim's house and Auburn) and so, I drove Aunt Judy's car up there and Met Kim and her mom at a gas station there. Anyway, Kim, Kris and I managed to stay up and keep going all night

Thursday: We got dressed (which included snow pants and jackets and silks) for the days travels and I said good bye to Romeo and Victor!! We left around 2am to drive to Atlanta to catch a plane. We got to the airport at 4ish something and so, we were 2 hours early and from the pictures Kim and Kris looked tired:

I was the only bright one:

We got on the plane and it was getting to be sunrise so, I took some pictures! Here they are:

Its beautiful isn't it???

Thursday was also full of 1 bumped flight, 2 standby flights and 2 canceled flights. We were so bored. We had nothing to do but play Rummy (I think I have finally got the hang of it ... )The one time that I was stuck in a airport, I didnt have my computer so, we had no contact with the outside world but, I remembered that the travel phone that I had had AOL instant messenger on it so, I was able to communicate with Mrs. Hughes via the cell phone. I kept her abreast (sp) of the latest developments and so every time that a flight was delayed I would tell her. We spent all day long in the airport (well, 10 or 11 hours. We were looking at having to spend the night at the airport and I didnt want to do that and I imagine that Kim and Kris didnt want to either. There was a hotel in the airport and the Godins said that they would pay for a room and that we could stay there but, I didnt want to spend their money so, I started praying like I have been doing many times before while on this trip.

Then, the Lord provided for us a flight to Philadelphia, Pa so, we took it. I mean, it was further away from Erie but, at least it was in Pennsylvania. We got to the airport in Philly and we were there maybe 2 or 3 hours and we found out that they had canceled the flight to Erie due to a plane malfunction. I was so mad but I kept it all inside. Unlike this guy who stood behind me in the line seeing about getting more tickets. He was cussing like a sailor and saying God's name in vain. I started praying ... I was waiting in line when they came on the PA system and said that they were trying their best to accommodate people at that desk and for further service, go to another gate. So, while Kim went back to Kris (and to get our luggage) I went to the other gate. While all this was going on, I was praying that we could find somewhere to spend the night cause our flight would not be leaving until Friday afternoon. Kim thought of her Aunt Pat that lives across the river in New Jersey so, Kim called Mrs. Godin who called Aunt Pat (her sister) and Aunt Pat called us and sid that we could stay with her at house. I was sooooo grateful. We got to her house around 11:00 or 12:00 and we got to sleep at 1:00am (friday morning)


We woke up about 7:30 and we went to a CVS to get some batteries for Kim's camera .... along with a few groceries. We saw some old homes from the 1700's and up and I wish that I had gotten a few pictures ..... Anyway, then we went by an old prison (built in 1811) and her Aunt was telling us about it and she saw that it was open and she asked us if we would want to go in and we said yes!!! Here are some pictures that I took while there:

This is the original door:

This is the original key that fit the door:

This is the plaster *people* that Kim was afraid of:

Kris cracking the code to get in the safe:

Here is Kris behind bars ......

and the rest of this i gonna have to wait until I get a goods nights sleep. I am so tired that I cant think straight!!!!!