History

Tuesday, May 8, 2012

Damn, how can it be three years since John passed. In some ways, it feels like yesterday but in other ways, it feels like an eternity. I am glad time is going by quickly though. I never wanted to adjust to life without one of my kids but I wasn't given the choice and we did everything we could to defeat cancer. I have comfort in knowing John is wonderful now. It is us on earth who have to deal with the pain of him no longer being with us physically. I feel his spirit often and that brings great comfort. I think of John daily and don't know if that will ever change. There are days I still wait for him to walk through the front door and yell, "Mom, I'm home!". I miss his sense of humor and his compassion for life. I miss John.

Johnathon Walls
10/5/89 - 5/8/09

As for Andrew, he will graduate from high school in June and plans to play football next year at a community college. I am incredibly proud of the young man he is.

Wednesday, October 5, 2011

Happy 22nd Bday John!

Another birthday to celebrate without John. It should such a joyous occasion...to look back and remember what Ned and I were doing 22 years ago and to look forward to the future ahead of John. I would have never missed the opportunity to be John's mom but I sure wish I would have had the opportunity to watch him go through the typical stages of life. He should be a senior at college and looking forward to graduation and a career.

There isn't a day that goes by that I don't think about John. I know his spirit lives on which helps ease the pain.

I posted a new picture. It is John's brother, Andrew, who is a senior this year at high school.

#44 Forever.

Wednesday, May 4, 2011

Hard to believe the two year mark of John's passing is in a few days. In some ways it seems like forever since I spoke or touched him but in other ways, it seems like yesterday he was by my side as we did everything possible to fight for his life. I miss those days. I don't miss the doctor's visits or the hospital stays. I definitely don't miss watching him in pain. I do miss being with him...talking, laughing, hanging out. We had a lot of time to hang out together and it is still hard adjusting to being home without him.

This year the anniversary is on Mother's Day. I was incredibly blessed to be John's mom but to have his anniversary of his passing on the same day to celebrate being a mom is harsh. I look forward to the day being past.

I miss John every day.

Tuesday, October 5, 2010

Happy 21st Birthday Johnathon! This was a day he was really looking forward too.

As a parent, I always felt it was my job to give my kids wings....to be successful adults. I had no idea one of my children would have angel wings.

I miss John every day but I know he is doing great. I will see him again someday.

Have a Coors Light today in memory of John!!

10/5/89 to 5/8/09

Wednesday, July 14, 2010

RIP Colton Holly
4-9-94 to 7-8-10

Colton had the best smile and warmest laugh. He would always stop to chat with Ned and I at sporting events. It is hard to understand why he is not longer part of our physical world.

We will always have the wonderful memories of Colton and his love for life. Colton did live every day to the fullest; it is evident by all his friends stories. An amazing young man.

There will be a Celebration of Life service for Colton on Saturday, July 17, at 10 am at the Wilsonville High School gymnasium. Casual attire...Colton would want it that way. Athletic shorts, t-shirts, flip flops...WWCD (What Would Colton Do?). All are welcome to attend.

Random Kindness is a nonprofit organization accepting donations for the Holly family. 100% of the donations will go to the family. If you would like to donate, please mail a check to PO Box 133, Wilsonville, OR 97070 and note "Holly Family" on the memo line.

Wednesday, May 5, 2010

My goal was to update after tax season and before John's one year passing anniversary. Since the one year anniversary is on Saturday (May 8th) and I am slammed with things to do, I doubt it will get done. It will take a while to update for so many months since my last update. Yea, I suck at updating.

Overall, we are doing well. This week has been hard on me and I am assuming it has been difficult on Ned and Andrew too. I keep thinking of what we were doing with John exactly one year ago. We knew things were bad but we had no idea within a couple days he would pass.

I miss John every day. I miss his smile, his laugh, and his ability to bug me. We spent so much time together and it is still odd to be at home by myself. I am getting accustomed to it but I would rather have the adjustment be from him going to college. I know the adjustment would have came eventually but never could I imagine life without him. I feel his presence regularly.

I got a tattoo in honor of him. He always wanted one (leukemia ribbon with #44 in the middle) and he wanted me to get one with him. I told him it was best to wait until he was better. The time never came. I never knew if I would actually get one with him but soon after he passed, a friend introduced me to an incredible book (Continuation. Honoring and Celebrating the Human Condition) and the continuation symbol. The symbol means "Upon Completion comes fulfillment, With fulfillment come liberation, Liberation allows you to go on, Even death is not a true ending, Life is infinite continuation". I have the symbol with John's signature on the inside of my right wrist. I see it every day.

John Walls, 10/05/89 - 05/08/09
#44 Forever

Monday, January 4, 2010

It's time to shut off John's cell phone. I've kept it active while people were texting and leaving voicemails. It is good to hear his voice saying "John". The activity has slowed way down and it's time to take another step. For those who want to call/text one more time, I will shut it off mid-January. I wish I could save his text messages. He has amazing text messages received during his final days and after he passed. I was glad Carrie figured out how to download his cell phone pictures. They are priceless.

#44 Forever.

Saturday, December 25, 2009

Merry Christmas!

We are all doing fine. We kept the holiday low key and I think it was a good decision since we got through it well. John is missed tremendously.

Wednesday, December 2, 2009

2009 just doesn't stop...

RIP Alita Allen. I will miss our chats. You were one the most friendly and warm people I know. I will never forget our last conversation before your surgery. I wish I could go back and talk some more. It is hard to believe you are gone. I will miss seeing you at the Wilsonville Farmer's Market and you showing me all your flowers and plants with so much excitement. Alita's Garden will be missed.

RIP Great Aunt Kitty. I will always remember your smile.

Can 2009 be done now???

Tuesday, December 1, 2009

Once again, it's been a while since I updated. Time does go by quickly when it comes to updating this journal.

I foresee Decenber will be a difficult month. Christmas for me has been such a focus on the boys. Making sure their gifts were purchased and house was decorated. I have such strong warm feelings during Christmas..of complete happiness. I don't know if I will ever feel that again. There is such a huge part of my life missing. I ache to have John near me. To hear his voice. To feel his hug. It hurts and there is nothing to make it better except time.

Grandma's memorial service was last Wednesday. Ned and I drove up to Olympia and came back the same day. Andrew was already there and stayed until Friday. My mom did a wonderful job with the service. I felt good during the service knowing Grandma was ok. She was 90 and didn't know anyone anymore. She led a full life. I had this strong feeling John was with her watching the service.

On Thanksgiving, Ned's sister Louise called and said she wasn't feeling well. Her symptoms were the same as Andrew's prior illness so I told her to come to our house anyway. When she walked in the house, she looked like she was not feeling well. She got bundled in a blanket and crashed. Ned had to work so I started Thanksgiving dinner. Ned got home in time to make the salad. It was a quiet Thanksgiving.

On Tuesday, I had felt the start of a chest cold. It was mostly pressure in the chest area with a slight cough. It didn't really do anything until Friday and the cough hit hard with rattling noises in the lungs. I called the advice nurse and she said since I didn't have any other symptoms to take it easy and call if it got worse. By that night, I had the chills, fever, headache, and body aches. Louise and I were both down with the flu (with different symptoms). Louise felt better by Sunday. However, I am still down. I am feeling a little better each day. So far no fever today.

Being sick, home alone, and hearing Christmas music was a bad mix for grief. Yesterday was rough. I couldn't stop crying. I haven't had one of those types of days for a very long time. I miss John so much. My heart feels like it is being torn out of my chest. If I could, I would skip Christmas. No decorating. Nothing. I can't do that to Andrew and I'm sure when I feel better, I will not want that either.

High school football is over and Andrew is now wrestling. He wasn't sure if he would participate in a winter sport. I am glad he decided to keep wrestling.

Youth football is over and Ned is handing over the reigns of director to someone else. We still have to finish the equipment inventory. I was planning to do it over Thanksgiving break but didn't count on being sick. Ugh. My garage looks like football equipment storage.

Each day I get closer to seeing John again...

Thursday, November 19, 2009

Sorry for not following up on Andrew's illnesses.

The last illness never came back with a positive mono even though the doctor still believes there was something going on. He felt better 24 hours after taking the antibiotic for walking pneumonia.

For this round of flu, he is feeling better today and getting ready to go back to school (10:30 am...a bit late). This was similar to the last illness except 6 days instead of 18 days. It really takes him down hard. His breathing changed this time too, which made my heart stop. I spent time in his room while he slept just listening to his breathing. LOVE the sound of regular, deep breathing while sleeping.

Tuesday, November 17, 2009

Tuesdaty 9:30 am: Grandma's service will be Wednesday, Nov. 25, 11 am, in Olympia.

Tuesday 8 am: My grandma Morrision passed away this morning. When 2009 started, I had three grandparents and two sons...now I have one grandparent and one son. I know they are all in a better place and I am ok with my grandma's passing. However, I miss my son incredibly everyday and I will always want him back in my life. There are so many people I know that have passed in 2009. I am ready for 2009 to be over.

Andrew is sick again. We had one month of him feeling well. His symptoms are ver similiar to his last flu. I took him to the doctor yesterday and she said you can't have H1N1 twice. I hope Andrew is not down for 2 1/2 weeks like last time.

In the month since Andrew's last doctor's appointment, he grew an 1/2 inch and gained 4 pounds. He is now 6'3 1/2" and 274 pounds. Being sick hasn't affected his weight. :-)

Wednesday, November 4, 2009 6:36 PM CST

A grieving mother wrote this and this poem is right on:

In Memory of My Son

Please, don't ask me if I'm over it yet
I'll never get over it
Please, dont tell me he's in a better place
He's not here with me
Please, don't say at least he isn't suffering
I haven't come to terms with why he had to suffer at all
Please, don't tell me you know how I feel
Unless you have lost a child
Please , don't ask me if I feel better
Bereavment isn't a condition that clears up
Please, don't tell me you had him for so many years
What year would you chose for your child to die?
Please, don't tell me God never gives more than we can bear
Please, just say you are sorry
Please, just say you remember my child
Please, just let me talk about my child
Please mention my child's name
Please, just let me cry.

Wednesday, October 28, 2009

CHILDHOOD CANCER FACTS:

* Each school day, 46 children are diagnosed with cancer.
* One in 330 children will develop cancer by age 20.
* Each year in the U.S. over 12,600 children are diagnosed with cancer.
* Although the 5 year survival rate is steadily increasing, one quarter of children diagnosed with cancer will die 5 years from the time of diagnosis.
* Cancer remains the number one disease killer of America's children - more than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.
* 80% of children have metastatic disease at time of diagnosis as compared to only 20% of adults.
* There are currently more than 270,000 childhood cancer survivors in the U.S.
* Late effects of childhood cancer treatment are common in survivors, and approximate ly one-third are moderate to severe

Monday, October 26, 2009

"Cancer Warrior Shane" passed away this morning. He was a teenager in the hospital during some of John's hospital stays. I don't believe John ever met him. Shane was a fighter. Damn Cancer.

Where is the flippin' cure???? No one should suffer from chemo and/or radiation, and multiple surgeries then experience a painful cancer death. Cancer is a wicked beast.

This quote was from Shane's caringbridge site:

Enjoy the little things in life, for one day you will look back and realize they were the big things.

Wednesday, October 14, 2009

It's been an interesting week. Andrew has not been feeling well for two weeks. On Monday, his throat was still very sore and his ears hurt. I thought he may have some type of infection at this point and made a doctor's appointment. Our doctor wasn't working so we saw someone else. She asked Andrew many questions, listened to his lungs, and felt his abdominal area. She then sat back and stated I want to run a CBC. I immediately asked her if she was looking for leukemia and she said yes. I instantly felt ill and my eyes started to water. The doctor gave me a confused look and I told her I lost a son recently to leukemia. She responded, "even more reason for this test". She also said she was looking for mono. Andrew didn't seem phased by the conversation; I think he checked out at hearing he was getting his blood drawn. We went to the lab to get his blood drawn and every piece of my being wanted to throw my arm on the table and tell them to take my blood instead. Of course, it doesn't make sense but it was my raw emotions. The doctor said she would have lab look at the blood rather than run it through the machine and she would call me later in the day. I was a wreck. Ned kept telling me there is no way and for the most part, I believed that too. However, I saw the signs that reminded me of leukemia. John wasn't that sick when he was first diagnosed. John was diagnosed on a Monday and it was a Monday. I kept wondering how could I do this again. How could I go through the Doernbecher's doors. I wouldn't have a choice, I would do whatever I had to for Andrew.

The doctor called around 1 pm and stated the white bloods cells are not elevated but there are atypical cells. I gasped and went cold. We always heard atypical cells in reference to John's leukemia. The doctor immediated said I can't use those words with you and explained 1/2 of the atypical were bacteria fighting and 1/2 were mono. It appears Andrew may have mono but they are running another test and she will call on Wednesday. I felt exhausted. I will take mono gladly.

Today, she called and the second test came back negative for mono. She wanted Andrew to come back in because he may have walking pneumonia. She listened to Andrew's lungs and said they are clear. She is definitely unsure what is going on except it is taking him a long time to bounce back. She put him on antibiotics just in case it is pneumonia and ordered another blood test for mono. This will confirm whether or not mono was a part of his illness. We won't know until Monday. His spleen does not appear enlarged. He is not contagious and can go to school if he feels strong enough.

I really do dislike doctor's offices.

I read this on someone else's site and wanted to share:

A Letter from Above

Dear Mom,

I know this is a rough time for you. So I will be as gentle as I can be. First of all, thank you for so many tears, particularly those shared with another that you love. They are a gift to me, a precious tribute to your investment in me. As you do your mourning, do it at your pace only. Don't let anybody suggest that you do your grief work on their timetable. Do whatever it takes to face directly the reality of what has happened, even though you may need to pause frequently and yearn for my return. Do this with courage and my blessings.

Know that sometimes inertia is the only movement possible. Give your best to keeping a balance between remembering me and renewing your commitments to life. It's O.K. with me if you go through minutes, hours and even days not thinking about me. I know that you'll never forget. Loosening me and grabbing hold of a new meaning is a delicate art. I'm not sure if one comes before the other or not, maybe it's a combination.

Be with people who accept you as you are. Mention my name out loud, and if they don't make a hasty retreat, they're probably excellent candidates for friendship. If, by a remote possibility, you think that there is anything that you could have done for me and didn't, I forgive you, as my Lord does. Resentment does not abide here, only love.

You know how people sometimes ask you how many children you have? Well, I'm still yours and you are still my parents. Always acknowledge that with tenderness, unless to do so would fall on insensitive ears or would be painful to you. I know how you feel inside. To be included as your child honors me.

Read, even though your tears anoint the page. There is an immense library here and I have a card. In Henri Nowens' "Out of Solitude", he writes, "The friend who can be silent with us in a moment of despair and confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not healing, and face with us the reality of our powerlessness, that is a friend who cares."

Mom and Dad, I don't know where you are spiritually now, but rest assured that our God is not gone. The still small voice you hear in your heart is His voice. The warmth that sometimes enfolds you is Him. The tears that tremble just beneath your heartbeat is Him. He is in you, as I am.

I want you to know that I am O.K. I have sent you messages to ease your pain, they come in the form of flowers that bloom out of season, birds singing, voices and visions and sometimes through your friends and even strangers who volunteer as angels. Stay open but don't expect the overly dramatic. You will get what you need and it may be simply an internal peace. You are not crazy, you have been comforted. Please seek out people bereaved longer than you. They are tellers of truth, and if they have done their work, are an inspiration and a beacon of hope whose pain lessened dramatically.

And one more wisdom before I close. There are still funny happenings in our world. It delights me to no end when I hear your spontaneous, uncontrolled laughter. That, too, will come in due time. Today, I light a candle for you. Joined with your candle, let their light shine above the darkness.

Affectionately,
Your Angel Child

Wednesday, October 7, 2009

I want to believe John is trying to communicate but it is such a hard reality to grasp. I have kept track of some of the occurrences but not all of them. I wish I would have but I don�t always have paper and pencil when they happen and sometimes it is too painful. However, this week there are a few I want to share with you.

On Monday, I decided to warm up leftovers for lunch. There was some chicken in the fridge that needed to be eaten. It was from a dinner many nights ago. As I am warming it up, I realize this is John�s favorite dish, Oriental V Chicken. It is the one he would request every year for his birthday dinner. It was the first time I felt ok to make the dish since John passed�.without even considering his birthday was coming up.

In the afternoon, one of his closest friends stopped by with her mom. When we sat down in the family room, Nickleback�s song �If Today is Your Last Day� immediately came on. This is a song that always reminds me of Johnathon and it typically comes on at the most amazing times. The radio station doesn�t play it continually or I wouldn�t be as surprised.

On his birthday, many of his friends celebrated at Oregon State University. One friend said when she got in her car that evening, her song for John came on. Another had a distinct memory on the drive to the OSU. I received voicemail from his friends that evening and I have no doubt if John could, he was there with them. They sounded like they were having fun. They said they purchased a birthday cake for him.

John�s cousin has been looking for a job since June. She had an interview on Monday. She commented she knew John would be with her at the interview. She got the job.

The only issue..if you want to call it that�with our kitchen is the backsplash. It�s a bit darker than I like but it is what we chose. There were so many decisions to be made and I am not a visual person. I like it more and more but for some reason, I visualized lighter but I chose darker. I know�duh. Anyway, the invoice arrived today and the invoice number is 44074. How amazing is that? #74 was John�s first football number and of course, #44 was his last. I don�t want to put more into it than what it is but in a way, I feel like John�s is giving his approval of the choice.

There was a journal entry I read a while back and it touched me. I thought I saved it and I couldn�t find it. I spent some time looking for it on Sunday because I wanted to share it on this site. The mom�s words were perfect. I gave up, figuring I must not have saved it. For some reason, I decided to check an e-mail we don�t use often and there was an update notice from that site. I don�t recall seeing an update notice before. I had asked John for his guidance on Sunday. I really wasn�t looking for it anymore; it just happened.

Here is the mom�s journal entry. She lost a daughter to cancer:
�Swim with me for a Spell...
Some waves are strong yet calm, even soothing, while keeping us afloat for a gentle ride towards the surf. Others we barely notice for the subtlety of their unremarkable passage without froth or foam. The ones we tend to remember, however, are those that send us tumbling out of control, those that send us hurtling down to the bottom of the sea so that we hit the sand with surprising, jolting force and for a moment aren�t sure which way to swim to reach the surface. Such it is with grief.

Sometimes, the memories, pictures, and videos keep us wonderfully buoyant with love and pride. Seeing someone else�s pictures, hearing their stories, what they remember about her can bring sheer joy. Sometimes, we can speak the name, mention her in context, including her as part of our present-day lives �

�That�s exactly what Arden would do.�
�Oooh, Arden would love this game!�
�That was Arden�s favorite song.�
�Arden wouldn�t have been very pleased about that one.�

� and keep talking without our voices breaking or having to quickly change the subject or excuse ourselves from the table. This is normal. This is status quo.

Breaking the pattern are the unexpected moments of sudden, violent, thrashing grief that send us toppling off of our feet, catching us off guard. They never seem to come when we�re prepared�.�

I thought she did a wonderful job describing grief as I am experiencing it. It can hit with such unexpected force but for the most part, it is calm.

Ned and I plowed through John�s birthday together. He did youth football stuff while I worked until it was time to go to Andrew�s football game. Andrew didn�t play very much. He would play a couple plays and be exhausted. On Tuesday, he came home from school not feeling well. Today he didn�t go to school. We are on day eight of not feeling well . He felt better on Sunday and Monday then went backwards. I did call the doctor yesterday and they said to call on Thursday if he isn�t feeling better. I am TERRIFIED they will want to do blood work. I don�t think he has more than the flu but I didn�t think much when I took John to the doctor either.

I want John back. I want him to walk through the front door with his Chevron 44 oz. soda so I can roll my eyes at him and he can smile back at me. I want to hear him say �Weigel�s can�t sing� when we are singing in the car together. I want to hear him talk about his future plans of attending OSU and hear the excitement in his voice. I want him to come to my office door and start talking then ask �am I bugging you???� with his big grin. I want him to make me smile when I am not in a good mood by being goofy. So many things I miss that are only memories now. Enjoy all your moments.

Sunday, October 4, 2009 3:59 PM CDT

�.sooo I didn't get the journal updated in more detail yesterday. I don�t know how far I will get today; I am really trying to protect my emotions for tomorrow and afraid of triggering emotional breakdown. So far I am able to control it most of the time but I am able to choose my environment when it happens. I do not want to be the grief stricken mother who stops living. I am sad and I know John knows how much I loved him. I also know he did not want anyone to be sad; he wanted his life celebrated. I do not want to live a sad life either and my overriding strength comes from Andrew. He deserves a normal life as much as we can provide it to him.

Andrew has been very sick for the last four days. On Wednesday morning, he woke up with a sore throat. He gets sore throats often so I told him to get up and see how he feels. He came downstairs and laid on the floor in front on my office complaining of bone pain and how weak he was. I really don't think he ever heard John talk about bone pain so I truly don't think it was something he related to John. My heart raced and I had to make myself calm down. The pain was intense and Motrin/Tylenol didn't touch it. He eventually got a headache and by Thursday night, a fever. Friday afternoon he was feeling better and asked to get out of the house so we went to get food via drive through. He asked to go to the varsity football game and Ned & I told him he doesn�t want to expose what he had to his teammates. By that evening, the pain was back. He woke up Saturday morning yelling he was dehydrated. It didn�t make sense since he was drinking at least 5 Gatorades daily. When I went into his room, I heard his fast breathing which freaked me out. I ran to get Ned while I grabbed a Gatorade for Andrew. By the time I got back to his room, his breathing was normal and Ned said he is fine. I wonder now if Andrew had a bad dream. Yesterday Andrew informed me he has had a lot of bloody noses. Ok really. I know two kids in the same family can have leukemia. I am trying not to overreact but then I don�t want to under react by suppressing my fears. One night this week I was getting ready for bed and thinking to myself, �ok if we need to go to the hospital is everything ready�� and it got that far before I caught myself. It will take awhile for the auto pilot to change with illness I�m sure. Andrew is feeling better today.

Nothing is planned for tomorrow. Ned asked last week if we should go do something. Andrew hasn�t mentioned anything about John�s birthday so I am going with he doesn�t realize it. I told Ned I don�t want to go somewhere and breakdown. My game plan is to power through the day like it is any other day. We�ll see how it goes. Andrew has an away football game at 4 pm so that will definitely help. I don�t know how much he will get to play since he missed two practices and the Varsity game last week.

Tualatin Valley Youth Football League put John's favorite quote on their site "Obstacles are what you see when you take your eyes off the goal. John Walls - Wilsonville Wildcat #44�. The website is www. Tvyfl.org

At the first home varsity football game, the announcer asked for silence for the fallen hero John Walls. I didn�t realize they were going to do that. Amazing. Ned was on the field as was Andrew while I was in the stands. We were all fighting back the tears.

A couple weeks ago, a friend pulled me aside with tears in her eyes to let me know people have purchased a bench in honor of John and will be at the WHS stadium. They plan to put it where most home fans will pass by it. I am continually amazed how many people John impacted and how generous people are to keep his memory alive. The bench isn�t done yet.

Andrew did play all four quarters of the first home varsity game. Yahoo Andrew! The person who normally plays the position was out hurt but it was very exciting to see Andrew play so much. You can check out Andrew�s football picture at www. Dsvanywhere.com/wilsonville.com. Got to roster then click on #77. It is a funny picture�not mean looking.

Ned is doing well. He is my rock. He has been busy working, coaching, and being the youth football director. �Tis the football season! It looks like someone is willing to take over being director in a year. YEA! I don�t think Ned is as excited as I am. :-)

Cheyenne tore her ACL�on the good leg. She tore her ACL a couple years ago and had surgery to repair it . She tore the other one right when the remodeling was finishing up. She did the second one outside but the first one was done on hardwood floors. She is terrified of our hardwood floors so we have towels everywhere so she can get from one area to another. We have opted to not have surgery on the second leg. It�s too much for her to handle. She has arthritis and tumors already. Why put her through more. She is on pain medicine and happy.

Remodeling is done and we are very happy. It�s nice to have new start within the same house. I missed my kitchen!!!!

Well, I wrote more than I expected. I know I am missing information. It�s just isn�t the same to update the journal anymore. It used to be a release to write and now I worry it will be a trigger. I miss John more than words can ever express. I will never be over him and I will never be the same. It is what it is. I read something about friendship recently in the Candlelighter�s newsletter. It is written by two friends who friend lost a child to cancer almost five years ago:

"Advice from Friends to Friends
By Laurie and Leann

-Be a good listener, even if nothing is being said.
-Let your friend mourn. Don�t give them advice on how to do it.
-Understand this is life changing and they will be different.
-Have other friends who can support you as you support your friend.
-Make sure that what you are doing for your friend is helpful and not just helping you feel better.
-Be there for them no matter what they need or when they need it.
-Don�t provide answers that they need to discover for themselves.
-Be protective of the friend who is grieving.
-Don�t compare your loss to their loss.
-Love them.
-Pray for them.
-BELIEVE IN THEM."

I look back at the journal entries and read what we were doing a year ago, I am in awe of what John did. He was a warrior and he fought a hard battle for his life. Ultimately, he won the war. He is at peace without pain and cancer did not survive. We are the one who have lost but we will be reunited some day. #44 Forever.

Friday, October 2, 2009

Game plan is to write a lenghy update tomorrow. Ned will gone all day for youth homecoming games and Andrew will be refereeing. Should be a good time to update.

It's been a rough couple weeks. I realized John's birthday was coming up (Oct. 5) and it was a difficult funk to shake off. I am doing better now. Having the remodeling done helps. Living upstairs without a kitchen was harder than I expected. The house looks great and we have set up a "John" area with his urn, pictures, and items that remind me of him (yes, 44 oz. Chevron cup is one of them). I will update pictures tomorrow too.

Wilsonville High School has hung up John's framed, retired jersey! It's in the foyer in front on the basketball court.

Have a great Friday.

Friday, September 4, 2009

It's Friday and I am doing ok. Yahoo!!! Mindset is an amazing thing. Today is a day to celebrate. John is in heaven without pain or fear of cancer.

Andrew brought his helmet home and showed us the #44 sticker on it. Every WHS helmet has it to honor John. Check out the picture. So cool. Thank you Coach Sommer.

Oh....about our remodel...all was going relatively well. I thought I would have my kitchen back this weekend. Yesterday was granite installation. Once the granite is in, we can install the appliances. YEA!..Oh wait, the granite people cut the granite wrong. So much so, they have to cut a new slab. I had many subs ready to be here today and I had to cancel without knowing when to reschedule. I told the granite people I want it installed today. They said they would try. It's 1 pm and I haven't heard from them today. Not a good sign. Of course, it's a three day weekend. Sometimes my luck sucks. Oh well, it's minor stuff.

All of John's roses in our memorial garden are blooming!!!

Thursday, August 27, 2009 7:51 PM CDT

RIP Grandpa...

Notice for Jerome Clarence "Jerry" Weigel

Please visit the Notice for Jerome Clarence "Jerry" Weigel.

http://www.legacy.com/Link.asp?I=LS000131788368X

Friday, August 21, 2009

Update: I have posted pictures of the tattoos.

Earlier: 15 weeks...unbelievable. I knew John could pass away but I never wanted to believe it. I was incredibly blessed to have him as my son....as my friend...I will always miss him. He could always make me smile when he was in trouble. It was a game to him to see how fast I would smile when he was being scolded. It always happened...no matter how hard I bit on my cheek to prevent it. I would try to hide my face and John would bend every which way to see it. Andrew started doing it last night. Amazing what traits are being carried on in Andrew when he didn't do them prior to John's passing and Andrew wasn't necessarily aware of them.

Today has been hard. I never know when but Fridays used to my favorite day and now it tends to be my saddest. I didn't even think of today being Friday and around 11 am, it hit. About the same time, a song came on the radio and the words were "Hey Momma..I love you...Close to you". I can not tell you how many times when I cry, a song will come on that feels like John is talking to me. I honestly don't cry often and I don't hear the particular songs all the time either. Today I had a different radio station on. Yesterday, the sound on the radio keep getting louder without anyone near it. After the fourth time getting up from my desk, I started laughing. Today the sound hasn't changed at all. Again...don't know if it's coincidence or not but it feels more than coincidence. John loved to mess with me.

Yesterday, I was priming the walls getting ready to paint. As I was looking around for areas to be primed, I noticed a faint, shiny "44" under John's senior picture. I forgot in 2002 or 2003 when I painted the entire house, I painted a 44 before painting the entire wall. For some reason, the 44 didn't blend in. I forgot about it and have noticed it since then. How appropriate it is under John's senior picture. When I looked at the wall from my bedroom last night, I could see it. He is with me. Always.

#44 Forever...

Andrew is doing well. He had football camp this week and next week he starts "triples". I think we are in shock that summer is winding down and school will be starting soon. It's been a wonderful summer getting to know him better. Andrew spends quite a bit time working on "John's truck". Many evenings I can hear the bass from the truck as Andrew is listening to music. Andrew also spends time with Ned coaching the eighth grade team and he will be refereeing youth football again this fall.

We are all adjusting to our new normal.

Thursday, August 20, 2009

"So we don't look at the troubles we can see right now; rather we look forward to what we have not yet seen. For the troubles we see will soon be over, but the joys to come last forever". 2 Corinthians 4:18

Wednesday, August 19, 2009

Yes, I have sucked at updating. I will try to update on a more weekly basis.

My grandpa passed away this morning. He had a massive stroke on Saturday and the doctors said it was a matter of hours or days until he passed. He has been sedated since the stroke and his vitals kept improving. I think he held on longer than they thought. I am feeling at peace with his passing. It is the way life is suppose to be. He lived a full life and his current quality of life wasn't great. He was ready to go. However, I am incredibly sad. I know he with John and I am jealous of his ability to do so. I know my time will come when it is suppose too and I don't want it to come soon. On the other hand, I don't fear death. I can't wait to see John again.

I went to Tommy's memorial service with Lucas. We got there a few minutes before the service started and it was packed. The only two seats we saw were in the front row. I could see Tommy's mom clearly and my heart ached for her. She saw me and immediately came over and gave me a hug and thanked me for being there. That alone made going to the service worth it. It was interesting listening to the people describe Tommy's characteristics, some were so similar to John's. At the end of the service, they showed a slide show and there was a picture of Tommy and John. I lost it. It was everything I could do to stay quiet. I haven't felt that pain in a while. I want John back so bad. I don't think I will ever know why he only had 19 years here but because of the journey, I was able to have a bond I don't think most moms and sons have. I can clearly see John and Tommy playing poker and smiling down on us.

I still see the #44 a lot. I am always looking for it and when I see it, there typically something going on. It gives me comfort.

Many of John's friends have gotten tattoos in honor of John. I will post some soon. It is incredible. They have designed them and each one is unique. What a tribute to John. The people that have gotten tattoos so far (that I know of) are Bri Sondenaa, Spencer Wiltz, Collin Lam, Tony Fowler, and AC Hayes. If you have facebook, some are tagged on John's "R.I.P. Edward Johnathon Walls" group page.

Youth football is in full swing. It's had interesting moments already. It's been an eye opener what parents will do to get their way. There is not doubt why bullying exists...it is taught. Ned did find someone to replace him as director. Andrew and I are very excited. We are tired of the politics.

Our remodel is also in full swing. We are currently without a kitchen; it was totally gutted. All our downstairs floors are bare and currently getting hardwood installed. We are living upstairs. My office is in Andrew's old bedroom, which is the music room. So I get to listen to him play the electric guitar while I work. Oh joy. Our bonus room is our living space. We have a dorm room size fridge and a friend just dropped off a microwave. We are all so sick of going out to eat. The toaster just isn't enough to make a meal. I have an electric skillet but I don't want to wash it in the bathtub. It will be all worth it in the end.

Have a great day!

Tuesday, August 11, 2009

Update: Tommy Egger's memorial service is 1 pm, Saturday at the Frog Pond Church.

Morning: Please pray for Tommy Egger's family. He passed away this week. He was a classmate and friend of John's. I posted a graduation picture of him with John.

Friday, July 24, 2009

Today marks 11 weeks since John passed. It doesn't seem possible that it has been 77 days since I was next him. It's really 78 days since I was able to talk with him. Damn that leukemia. I know he is in a better place but dealing with his absence sucks.

We are all doing relatively well. I think we are going through the griefing process as best as can be expected. We are dealing with it and doing everything we can to live life to the best of our abilities.

I still haven't gotten the thank yous out yet for everyone's contributions to John's service. I apologize for being so late. It's been something I've had a hard time getting too. I know it will be hard and it's another piece of finalizing doing something for John. I will get it done. We do appreciate everyone's support. There are many times which are incredibly foggy and there was a friend standing right next to me guiding me along (physically, emotionally, and/or spiritually). The cards were wonderful. We are blessed with a wonderful family, friends, and community.

Have a great weekend!!!

Tuesday, July 21, 2009

Hey Wilsonville!! Wilsonville Youth Football is looking for a director. Ned is ready to step down (I've been ready for him to step down for years). John was in 4th grade when Ned became the director...11 years ago. Now Andrew is a sophomore and out of the program. If you are interested, contact Ned today!!

Thursday, July 16, 2009

Happy Birthday Ned, Louise, and Betsy!!! 39 again??

Please pray for my dad. He found out last night that his biopsy came back positive for cancer. They will see a doctor soon to get more information on treatments. Mom sounded like there are effective treatments available. I'm sure there will be more testing. CANCER SUCKS!!!! TREATMENTS SUCK (I do appreciate we have them...just wish they didn't come with side effects)!! WHERE IS THE CURE????

I am terrible about updating. I intend to keep writing. It is hard on good days to want to write and take the chance of going down, and on bad days, I have no desire to try to write. I have far more good moments than bad moments. I find one of the most difficult tasks is to know when I will go down...the triggers can be so random. I sometimes elect to not go places afraid it could be trigger. I am ok with that for now. I do know there are things I can do to make it easier. Some days I chose to not look at pictures or maybe only touch John's urn once a day. I know he is in my heart and I don't have to relive memories all the time. It would be too hard. It would be easy to give up. I don't want too. I have been given a life and I need to live it to the best of my abilities. I want my life to make a difference and be a positive impact. Some days/moments are harder than others but I will get through it and sometime I hope I will see John again.

Enjoy today. Enjoy what you have.

Friday, June 26, 2009

10:00 am - 7 weeks almost to the hour. In some ways it doesn't seem possible but in other ways it seems like eternity. The pain has been intense since the 4 week mark but I am having more moments of "normality". I know the pain will subside but I don't know if it will ever really go away. I don't want to know the pain may get worse because it's been so bad, I don't know how it could. As time progresses, I miss him more. I want to talk to him. I want to just be with him physically. I try to believe he is here with me spiritually but it is hard to grasp it. However, when I have asked for a sign, one typically appears which I can�t explain. I know he will forever be in my heart and I am glad I had the privilege to be his mom.

Aimee's service is Monday afternoon. I am going to try to go. I think it is important for her mom. I know of five Doernbechers kids that have passed since Johnathon and two are on hospice. Unbelievable. I asked a Doernbecher nurse yesterday about it. This just seemed like a lot and she said it is. The most she has seen since she started working there seven years ago. What the heck (again not what I am thinking but it's the pc version).

I know there is so much more to write. I need to discuss the backyard memorial plans and other things. I am feeling somewhat strong today so I need so keep this short. Fridays are typically tough. At least it is beautiful outside. Andrew has a couple basketball games today which is good. It forces me to socialize.

Andrew and Ned seem to be doing ok. Ned has been my rock lately. I try to be there for Andrew but he doesn't say much and I don't press it..not that I could without crying. I hate crying...I should be dried out by now. :-)

Have a great day.

Tuesday, June 23, 2009

Aimee's mom, Laura, called me this morning and Aimee passed away. Laura said she felt John's presence as Aimee took her last breath and knew John was guiding her. Please pray for Aimee's family as they adjust to a life without Aimee. Life can be so incredibily unfair. I wouldn't want anyone to feel the incredible pain of losing a child. I feel like someone is putting their hand through my chest and ripping out my heart. I wish there is something I can do or say to Laura and there is nothing that will make it hurt less. Damn, damn, damn...that is my very pc version.

Wednesday, June 17, 2009

Please pray for Aimee Couch. John met her last year while staying at Doernbecher's. He would play cards with her and her family at night and had a blast. The day before he passed, Aimee and her mom, Laura, were walking out of the clinic and saw John in the wheelchair in the waiting room. As soon as they recognized him, they came right over to see how he was doing. I will never forget John telling them he wasn't doing so good. It was one of his last conversations.

Aimee relapsed in January and had a bone marrow transplant. She is 20 some days out from transplant and in ICU. Her mom called me last night. Laura said John made an impact on her and wish she could have gotten to know him better. Aimee came to John's memorial with bald head and hickman; I had several people comment that they saw her. Amazing.

Aimee is struggling. Her caringbridge site is
http://www.caringbridge.org/visit/aimeecouch

(if that doesn't work, go to www.caringbridge.org" and enter "aimeecouch")

I wish cancer would go away. No ONE should endure it's wrath.

Sunday, June 14, 2009

Many people have commented about Alex' speech at John's memorial. She was one of John's best friends. John would tell me how he could tell her anything and he would. I asked her if I could post her speech and she agreed. I hope to get everyone's speech and post it on John's new webpage along with pictures of the memorial. A lot of ideas...just need to get moving on it.

Alex's speech:

John. The strongest most determined person that I have ever met. When I started to write this I decided to go sit by the river to clear my mind. As I started to write a strange man with dreads approached me. He introduced himself to me and I later went on to find out he moved here from Africa. He asked me what I was writing and I explained it all to him. He sat there with me for two whole hours talking to me about John and how he believes everything happens for a reason. He kept telling me that it was going to be okay and that John was in a better place. John always told me that everything happens for a reason, he also always made fun of me for attracting strange people. I felt this feeling come through me and I believe that it was a gift from God. It was like John was coming here to tell me and to tell everyone else that he is home in Gods arms and that everything is going to be okay. This last November John came to visit me in Boise. The first night John was here I had accidentally made a prior commitment to attend a Mary Kay party. So I asked John, �Would you like to come?� He said �well it can�t be too bad. There will be girls there right?� I promised there would so off we went to the Mary Kay party. As I was trying the products I look over at John and there he was sitting on the couch sampling all the hand lotions right along with us. He got really into it and started asking the lady way more questions than even all of us girls were. Typical John! The next night we went out with a couple of my friends. Keep in mind John didn�t know anybody. We were there for a little bit and then he just disappeared. I couldn�t find him anywhere. I started to freak out a little. He didn�t know anyone so he couldn�t have gone too far! After a little bit of panicking I turn to see him sitting in between two cute girls. There is John sitting on the couch just flirting away. John gave me the eye meaning let me flirt for a couple more minutes! All I could do was laugh. Of course John made friends already. John made friends wherever he went. Everyone loved John, and John loved everyone. He was so easy to get along with and get to know. I�ve been in many situations where John came knowing nobody and left the life of the party. John put everyone before himself. He constantly asked me how I was and was always so concerned about everyone but himself. Whenever I was sad John would call me and sing this song from one of his old kids� videos. He knew how it always cheered me up. He would drop anything he was doing to be there for you. John was the person I depended on and I knew I could go to for anything. He inspired me to be a better person and had a huge impact on my life. He was the most caring, fun, happy-go-lucky, sarcastic at times, trustworthy, most amazing friend in the whole world. John was a fighter that never gave up. Nothing could get John down. I don�t think John ever understood how big of an impact he had on people. John was one of the greatest people that have ever entered my life and I am so thankful that I was privileged to be so close to him. John, I will never forget our camping trip. We all sat around the campfire singing songs and talking about anything that popped into our minds. You even sang country songs which we all know is not your favorite. The beach trip this spring break was one of my favorites and we had so much fun. I will cherish these and the millions of more memories that we had forever. But out of them all the one thing that me and you loved the most was our long heart to hearts together. They would go on for hours and hours when it felt like just a couple of minutes. Those heart to hearts were the deepest talks I�ve ever had with anyone. They meant the world to me and I will carry the advice you gave me and the words you spoke to me for the rest of my life. I know you�re looking down on me and will always be by my side. I miss you and your huge smile that could light up a room more than anything else in the whole world. You truly did make this world a better place. I love you so much John and I�m so grateful you were a part of my life. You will forever and always have a huge spot in my heart.

Friday, June 12, 2009

John wrote these essays in Spring of 2008 for scholarships. It brings his perspective to his journey.

�How has my experience with cancer impacted my life?�

Cancer isn�t something that everyone has to personally fight but it is something that most people I talk to about cancer has felt it�s impact through someone else having cancer. It seems that cancer is affecting everyone�s lives. Something I had not considered prior to my cancer journey. It�s made me realize I am not alone.

When I was originally diagnosed with leukemia, it was May of my eighth grade year. I loved sports especially football and life was good. I was ecstatic about starting high school. Getting cancer put a whole new perspective into light, illuminating things that weren�t even a thought before I got sick. For example, how much I wanted to sit in the sun, go for a run, go to school and learn in an actual classroom. Things I took for granted and didn�t appreciate before having cancer. Those desires surfaced within three months of treatment and the hardships had just started. Due to suppressed immune system, I missed attending high school for approximately 50% of my high school career. As time went on, those normal things I missed wore away at my sanity, like a rushing river on a bed of rocks, washing some of the small pieces away and sweeping larger rocks. Some of the rocks would become sand, as did my sanity and will. After relapse, bone marrow transplant, and a difficult recovery, I was exhausted. I didn�t want to go on I felt like life had no meaning. My future wasn�t what I had imagined. It was a nightmare. However, my friends and family wouldn�t let me give up and I learned that life, my life, isn�t worth giving away. My life may not be what I chose but I can make it better.

Talking about cancer brings up difficult memories but with every trip back into my memory, I feel I affect myself or another person in a positive way. Someone may act a little differently to someone with cancer, be more understanding to those fighting a life threatening disease, or just appreciate life more. Some of my friends have been able to help family members from the experience they�d gained from talking to me, which makes me feel great. I believe my friends and family have a better appreciation of life from sharing my experience.

I relapsed with leukemia the end of my freshman year and had a bone marrow transplant. I recently had both hips replaced because the medicines I was given to save my life stopped the blood flow to my hips. I�ve had to refocus my interests. I will never run again so there goes my dream of playing college football. I�ve learned to overcome obstacles and change my focus. The experience has given me a life with an appreciation of the small things. I have not given up my dream of attending college. I will graduate with my class this June and start Oregon State University next fall.

Another essay...this is only part of it:

Cancer isn�t something that people take lightly. If you are a survivor, you definitely don�t take it lightly. At times, people who survived it, don�t get the credit they deserve. It�s a devastating disease that many survive but some do not. This has a psychological effect on people�s lives.

For me, the cancer treatment was a hard trek and lasted a long time but I have grown tremendously from it, learning that life is only lived once and when you survive a life threatening disease its best to live it to the fullest, thinking less about the material possessions in my life and concentrate more on family, friends and living in general. Cancer has also taught me to live day to day and make every minute count, not to skip around, trying to make life go as fast as possible, just to get to that birthday or Christmas. Just enjoy what we have, letting life flow like a river, making sure you stay the course and ride it to your end of days, happy, and healthy. I see life as a single precious gift. We only have one so it needs to be cherished and loved as long as we have it.

(skipped paragraphs)

If I were fortunate enough to receive this scholarship, it would help me realize my dreams of finding cures for cancer. Help me fulfill my dreams. I would love this scholarship to help me get through college and fulfill my need to help others. I�ve been in the hospital and seen the kids suffer and I can�t stand it, they deserve better and I�d like to find that cure for them or at least a new treatment to help the stress and pain, maybe make it a little quicker. Please help me get through college so Medical School will be a little bit more attainable.

I am still here today and stronger than ever, and I have been given a second chance I plan on making the most of it! Thank you!

Monday, June 8, 2009

Andrew has joined the WHS Wresling and Football Relay for Life team. If you would like to donate, his webpage is
http://main.acsevents.org/site/TR/RelayForLife/RFLFY09GW?px=11833706&pg=personal&fr_id=14743&fl=en_US&et=eYoy2PfoJycFGa5KIJa9Kg..&s_tafId=262817

Erika Marshall set up a website with video of John's Life and video of John's memorial service. Go to http://web.me.com/bekmarshall/johnathon_walls
She did a great job. I wanted to put them on Utube but you are limited to 10 minutes of video. I will see if we can put additional videos like the retirement of the #44 jersey and high school graduation on the site. Thank you so much Erika!!!

Today is one month since John's passing. I miss him so much. I would do anything to get him back.

Thursday, June 4, 2009

Wilsonville High School Football and Wrestling have put together a team for the Relay for Life in Wilsonville. Please join their team or make a donation. This is an incredible event. You can also purchase Luminaries (paper bags) that you can draw on. They will puts candles in the them and they will lite up the Wood Middle School track while people are walking at night. Here's the link:
http://main.acsevents.org/site/TR/RelayForLife/RFLFY09GW?pg=team&fr_id=14743&team_id=508685 or you can go to www.relayforlife.org/wilsonvilleor and look for WHS Football/Wrestling. As you all know John loved football but he also wrestled in 7th grade and like it too. Andrew was involved in both sports. I am making a donation now...anyone willing to donate more??? We paid an incredibly large price to cancer, no one should have too. A cure is needed now and funds are the way to get there.

Sunday, May 31, 2009

Update - Andrew made the high school JV basketball team...and games are starting. It will be a busy month with basketball games. Way to Go Andrew!!!

Sunday - I've been thinking about getting a tattoo to honor John. I have many ideas. A couple years ago I almost got a starfish (Doernbecher's oncology has a starfish symbol) with #44. #44 would represent John as well as Andrew. I've recently thought about "#44 Forever" on my wrist. I like both ideas but I don't want to jump into it. I'm not a tatto person but with the impact of John's journey and his life, a tattoo seems right. I am just waiting for an idea to be the right one. Last night I mentioned I was thinking about a tattoo and Renee brought out a book. She suggested I take a look at it when I wanted and sent it home with me. It's about a 19 year old year, Larisa, who lived in Eugene, Oregon and lost her life to cancer very quickly. I wasn't sure if I was ready to read it and put aside. This morning I felt a strong urge to pick it up and start reading. It is an amazing book. Larisa reminds of John with her spirit to fight and the lives she touched. Her mom's name is Glenda. Larisa got a continuation tattoo as well as her friends. As she touched other people's lives, they also got the same tattoo. The book is about the tattoo and what it means to them to have it. The continuation symbol is from 365 Tao by Den Ming-Dao.

Continuation

Upon completion comes fulfillment.
With fulfillment come liberation.
Liberation allows you to go on.
Even death is not a true ending.
Life in infinite continuation.

Deng Ming-Dao

No matter what your beliefs are, John does live on. It could be our memories, it could be his spirit...without a doubt is John does continue to impact lives and the continuation symbol is a good representation.

If you want to see the symbol and/or read and/or order the book, go to http://www.continuationbook.com. Just from the website, you will take something away from it. Read the "Your Journey" section. It is very good.

Thursday, May 28, 2009

Evening: (new pictures posted)

This evening Andrew was driving me to his basketball try-outs. He had grabbed John's Ipod and had it playing in the truck. A song came on and it caught my attention. The lyrics were amazing and I looked at the clock and it said 4:44. On the way back home, I decided to listen to the song more closely. When I looked at the license plate of the car in front of me, it had 44. I'm not sure how I feel about signs versus coincidence...however, it made me smile. The song definitely reminded me of John.

Here are the song lyrics:
Nickelback - If Today Was Your Last Day Lyrics

My best friend gave me the best advice
He said each day�s a gift and not a given right
Leave no stone unturned, leave your fears behind
And try to take the path less traveled by
That first step you take is the longest stride

If today was your last day
and tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last?
Leave old pictures in the past
Donate every dime you have?
If today was your last day

Against the grain should be a way of life
What�s worth the prize is always worth the fight
Every second counts �cause there�s no second try
So live like you�ll never live it twice
Don�t take the free ride in your own life

If today was your last day
and tomorrow was too late
Could you say goodbye to yesterday?
Would you live each moment like your last?
Leave old pictures in the past
Donate every dime you have?
Would you call old friends you never see?
Reminisce of memories
Would you forgive your enemies?
Would you find that one you�re dreamin� of?
Swear up and down to God above
That you finally fall in love
If today was your last day

If today was your last day
Would you make your mark by mending a broken heart?
You know it�s never too late to shoot for the stars
Regardless of who you are
So do whatever it takes
�Cause you can�t rewind a moment in this life
Let nothin� stand in your way
Cause the hands of time are never on your side

If today was your last day
and tomorrow was too late
Could you say goodbye to yesterday?

Would you live each moment like your last?
Leave old pictures in the past
Donate every dime you have?
Would you call old friends you never see?
Reminisce of memories
Would you forgive your enemies?
Would you find that one you�re dreamin� of?
Swear up and down to God above
That you finally fall in love
If today was your last day

~#44 Forever~

Early Afternoon:

Hard to believe tomorrow it will be three weeks. The time has flown by, which is good. We are keeping busy. I have more information to update but I don't have the time right now. I just wanted to update to let everyone know I will continue to write in this journal as long as it feels right. John may not be with us anymore physically but it is a life we are adjusting too because of John.

I do think we are doing well overall. There is a void in our life but we have freedom we haven't experienced for a longtime. I am trying very hard to enjoy the experiences we have now. John wouldn't want anyone's life to stop. He was very concerned about how people would handle his death. He worried about it. I told him we would be fine and we will be.

Thursday, May 21, 2009

Happy 15th Birthday Andrew!!!!

Before John passed, he made sure we knew what he wanted to get Andrew for his birthday. I look back and wonder how much John instinctly realized (he sure didn't want anyone to tell him). He had to know his body was failing, as we all did, but no one realized how fast the leukemia was taking over. Maybe it was better that way. John would have hated to know he had weeks to live and for people to be saying goodbye. However, I do believe he would have had a massive BBQ/party! He loved BBQs with friends.

If you would like to donate to the John Walls Memorial Scholarship, please make check payable to the Wilsonville Touchdown Club, with the memo (or accompanying note etc.) noted "John Walls Scholarship". You can give the check to Coach Doug Sommer, Matt Wilbur, or mail it to: Wilsonville Touchdown Club, P.O. Box 3736, Wilsonville, OR 97070. What an honor for the Wilsonville Touchdown Club to do this. When Coach Sommer announced the scholarship in John's name at the memorial, there was no way tears could be held back anymore. Ned and I are very touched and I know John is beaming.

Tuesday, May 19, 2009

Saturday's memorial was beautiful. A tribute to a wonderful person. Thank you to everyone. There were a lot of people who helped make the day as perfect as it was. The memorial was taped (is that the correct word?). As soon as I get the DVD, I will attempt to put it online. I have more thoughts to convey about the day but it's hard to write about. I heard the Wilsonville Spokesman has pictures in this week�s edition; I haven�t seen it yet.

The most shocking revelation last week was how much cancer affected John physically. I knew it did; you could see the effects of the GVHD on his skin. However, when I looked at his eighth grade and earlier pictures, it hit me hard. He paid a very large price to fight. He would talk about the physical effects and I would not put much thought into it. It is what we had to do. He would never let it stop him. His body was so scared and he still would go swimming. Young kids would ask him what happened to his body and he would tell them cancer. For him to live life, he had to put aside any teenage vanity. He truly hated the way his body looked. I had promised him when he was cured, we would look into plastic surgery to fix it.

The hardest thing for me right now is to not be able to talk to him. I want to know he is ok and he is happy. My motherly instincts are tearing me up. I am supposed to be there for my children and I cannot for John. It�s unfair. I miss him doing a belly flop on my bed when I am trying to go to sleep because he wants to chat. I miss his giggle when he knows he is bugging me. I miss him. I don�t miss his pain. I don�t miss his multiple doctors� appointments and his sadness for not being able to live a normal life. I know we did everything we could to save him. I wish there was a cure for cancer and it was a cure with no side effects.

Today was our first new normal day. Ned went to work, Andrew went to school, and I worked from home. I think it went relatively well. I don�t like it but we don�t have a choice. We will adjust to the new normal knowing that someday we will be reunited as a family. I will not allow John�s passing to take away our living. We will adjust. We have to for Andrew.

Andrew�s birthday is this Thursday. Ned and I gave him guitar lessons that started this week. He thinks he needs an electric guitar. OMG! Some things we may not adjust too. :-) I think Andrew is doing ok. It�s hard to know what ok looks like though.

Interesting thoughts�Louise and I went through many pictures last week for the picture boards at the memorial. After a couple hours, we decided we must have enough. We had no idea how many we had. I went online to order the pictures to be printed and we chosen 44 pictures. When John�s memorial ended, my aunt Joanne asked her husband and daughter to check their phones for the time, it was 4:44. The new stamp amount changed to 44 cents this month.

We do have additional bracelets if you did not get one at the service. They are dark blue with �Relentless #44 John Walls�. If you want one, let Ned, Andrew, or myself know.

Thank you for your cards. The support of family, friends, and community is unbelievable. We are blessed to be surrounded by so many caring people.

Wednesday, May 13, 2009

The basics of the memorial are set. The service will start at 3 pm this Saturday at Wilsonville High School football stadium. From there, we have a reception at the Wilsonville High School commons area until 6 pm. There will be continuous feed video of John, food, and non-alcholic beverages. Around 6 pm, the party will continue at the Wilsonville Holiday Inn (we will have the continuous feed video continue there). We have a banquet room reserved and there will be no host bars.

Remember to wear what you would wear to a football game. Alex said she and John talked about funerals and they agreed to wear bright colors. Holiday Inn may have a block of rooms reserved; I'm not sure but I would ask if you are planning to get a room. They have been incredibily accomodating.

John's passing has been something I've lived over and over in mind for the last year. When John relapsed last April, it was the first time I worried about John making it. There were many mornings I'd wake in a panic and wonder if John was still alive in his room. We put his body through so much that I didn't know how much more it could take. However, John powered through the chemo and went into remission. What a warrior. He never gave up. Even on Thursday morning, he asked Dr. Lamkin to give him chemo but Dr. Lamkin said his body would not handle it.

I worry about the days ahead. My life has been so filled with caring for John that there will avaiable time I am not accustomed too (which could be bad for Andrew...ha,ha). However, there are things that Johnathon left with me with that I will now focus on. He hated our kitchen and would complain about it constantly. It has issues but it wasn't a priority knowing John's immune sysem could be compromised. In the days ahead when I need something to do, I will start working on changing our kitchen (are you ready Jerry Belmore??). I know in my heart he would want that and I have a pretty good idea on his thoughts. It will allow me to feel him even though he isn't here. I am blessed he was so open; I have activities to keep him near me for a while.

It sucks he is gone. We did everything we could to keep him here. We got an extra five years. The doctors weren't sure he'd make it in 2004 when he was diagnosed. I will miss him dearly every day. He was my buddy.

Tuesday, May 12, 2009

There is so much to write�so many thoughts. I have a feeling this will be a long, emotional one. So grab your soda (44 ounce Diet Coke if you were John) or coffee, get comfy, have tissues�here it goes�.

First of all, I am been getting feedback about teenagers concerns about Andrew�s feelings for Johnathon. There is no doubt that Andrew loved his brother very, very much. I don�t think people understand aspergers and Andrew�s ability to process John�s death. Andrew doesn�t necessary know how to express his emotions. He sees things very black and white. Andrew is in incredible pain and he is dealing with this the best way he can. He idolized John. He wants to be John. Some of John�s last words were his concern for his brother and how much he loved him. Please put aside your expectations of how grieving should look. We all grieve differently and we should all try to understand and embrace that.

People have asked about donations. Random Kindness is accepting donations. It is tax deductible and the money will be used to pay for funeral expenses, setting a memorial garden in our yard (more info later), and other expenses related to Johnathon. Any extra funds will be donated to a charity of our choice. Their information is above.

If you have thoughts you would like to share about John, please feel free to e-mail them, mail them, or bring them to the memorial service.

We are not planning to do any extensive decorating of the high school stadium, we will have a podium on the track with a table in front of it with John�s pictures. It will be simple. If John�s friends would like to make posters, bring balloons, whatever you feel would be appropriate to decorate the stadium, you are welcome to do so.

I understand there is a lot of confusion about John�s death. It all happened so fast. I will try to recreate the events the best I can.

On Sunday April 26th, we went the beach for a week. Ned was able to get a cabin on Cannon Beach so John could enjoy the beach since it was so hard to crutch on sand. He was having trouble crutching. It was like his legs would just give out. John complained about a lot of bone pain; he slept a lot and had frequent nose bleeds. All signs of leukemia progressing but none of us wanted to acknowledge it. John acted a little differently than usual during this week. I didn�t understand it and assumed it was the new pain medicine reacting poorly. In hindsight, I believe it was the start of the leukemia infiltrating his brain. There are events of that week I will regret the rest of my life but Johnathon knew how he was behaving and apologized for it. I just wish I knew. We did notice the tumors starting to grow again mid week and started back on full dose steroids. Steroids can also affect someone�s behavior. The swelling did go down some. John did have a very good time going to the beach with his brother, building fires and eating S�mores. John felt good enough to go to Seaside for one of the afternoons and played tons of video games at Funland with Andrew, Ned and I. We also were able to go to the outlet mall and the candy shops on Broadway. John loved the candy store with all the fudge (he had to try them all) and all the old fashioned candy.

John drove home from the beach on Friday and absolutely loved being able to drive. I was his passenger since I wasn�t sure how well he could drive. He lowered his pain medicine and endured the extra pain to be able to drive. I think it was the one thing he could do which was normal. He was on cloud nine driving. I look back on the drive and wish I would have taken advantage of the one on one time. I read my book and commented on his driving�of course, he never agreed with me. He kept asking why I was on edge and I couldn�t tell him it was because of the signs I saw of leukemia progressing. He wouldn�t want to know and I didn�t want to believe it. He kept asking me to tell him what was wrong and I kept telling him I was �fine�. He got pretty upset with my �fine� answer.

On Saturday, John woke up in tremendous pain. His hip was hurting badly. We had a wonderful day planned at University of Oregon with their football team and had to cancel. We were giving as much pain medicine as we could to John. There was no way he could go anywhere. We figured he did too much on Friday.

I don�t recall very much from Sunday. He woke up feeling better. I went to the Wilsonville Farmer�s Market and he commented when I got back that he wanted to go next Sunday. I recall thinking he will need a wheelchair because he is so weak. Beau Jacobson�s memorial was that day. John wanted to go and I thought he knew when it was. When he heard he missed it, he was very upset. Again I remember thinking there is no way he could go with his energy level and pain but I wish we would have allowed him to make that choice.

On Monday, he had radiation and slept a lot. I wanted him to make appointments with Dr. Lamkin and hospice nurse and he didn�t want too. He wanted more days of no doctors. Radiation was enough.

On Tuesday, radiation again in the morning. His mouth had developed sores during the beach trip and they were very painful. It was from low platelets. PT was early afternoon trying to fit new crutches on John. He wanted the Hope Crutches which were specially ordered but they were the wrong size. The physical therapist recommended a wheel chair and John made sure she knew he was not ready for that but I ordered one anyway for going to the Farmer�s Market. The hospice social worker arrived in the mid afternoon. Typically only she and John would meet. This time John asked me to join them. He wanted to know what was wrong. Obviously he could sense by mood and I couldn�t tell him. All I could say is sometimes I wake up grumpy and you have to be ok with that. The hospice social worker said John was very concerned about Ned and I. John joined in saying he doesn�t want anything to happen to Ned and I after he passes (divorce); he couldn�t take that. The social worker said that is a typical fear for a teenager. I let John know his dad and I will be ok that he should not worry about that. It was all I could to get those words out between the tears. He hated it when I cried and I tried so hard not too.

My parents stopped to visit Tuesday afternoon. John chatted with them for a bit and we decided to go get dinner. Andrew wanted to have Red Robin and John said he wasn�t in the mood to go out. We went without him and he didn�t want food brought back. When we returned, he wanted to go spend time in his room to rest.

He wanted to get up early enough to say goodbye to his grandparents on Wednesday. Mornings were always a bit slow but he did it. We headed out to morning radiation appointment and he slipped on crutches going out the door. John had commented about all his bruising at some time and I was concerned about his blood count. Dr. Raj came out to talk to me in the waiting room about her concerns and we decided we would talk to John together. She told John she saw signs of leukemia progressing and he needed to get blood work. He kept asking if he could do it tomorrow. He was so tired. She said it would be better today and it would be good if he saw Dr. Lamkin. John cried. He wasn�t ready to die.

The lab wasn�t far. It was in the building next to the one we were in. I asked if I could get John a wheelchair and he said no. He crutched over needing multiple stops. He was always thirsty and we had to keep refilling his water container; this had been happening for the last week. He also needed to breaks to catch his breath. We get to the lab, sit down, and he falls asleep. After the blood work, John had to really work to crutch to the car. We took multiple breaks again. Someone came out of their office to ask if we needed help. John said no. All he could say is that I used to be an athlete and now I can�t even crutch a little ways.

Dr. Lamkin called and he was off Thursday and Friday. He thought he should see John that afternoon and I agreed. I asked John and he said he would see someone else tomorrow. He needed to rest. I argued and said we know you need platelets, let�s get in there now and maybe you�ll feel better. After a few minutes of negotiations, John agreed but I had to take him to Plaid Pantry and I had to stay in the car.

There was a long line at Plain Pantry. I waited for a bit and was worried John couldn�t stand that long. I went in and he told me to leave. I said I would wait by the door to help him out. I noticed the lady behind the counter being very upbeat and friendly to customers while I was talking to John. As I was waiting, I watched her interactions with many customers she seemed to know. When John got up there, I saw her face turn white and her jaw drop open. As soon as we got in the car, I asked John what the heck he said to her. He said she asked if he was having a good day and he said no. She responded it can�t be as bad as my day so I told her �I am dying from cancer.� Such a johnism. If you want to know, you�ll get his thoughts. I had to smile. Maybe next time she will think twice before making such a comment.

We arrived to Doernbechers. John was too weak to crutch and we got a wheelchair. Dr. Lamkin agreed that John needed platelets even though the blood work was not back yet. He commented on John�s left eye being droopy. He wanted to talk about the leukemia progressing and John didn�t want to be included so he went off with the nurse. Dr. Lamkin said he thought the leukemia was in John�s central nervous system and progressing pretty fast. He wanted to give John platelets that day but John wanted nothing to do with it. He said we could come back tomorrow. On the way home, I cried. John would caress my face with the back of his hand and say he is sorry and he loved me. He never asked why I was crying.

Aufenthie�s brought over dinner. Sloppy Joes, Macaroni and Cheese, and Cheesecake. I had just found out a few minutes before that John�s blood work was worse than expected from Dr. Lamkin and he thought John had less than a couple weeks to live. I was absolutely devastated but I knew John wouldn�t want to know. I spent a lot of time outside crying. John would call me and let me know Aufenthie�s were visiting and I couldn�t dry up enough to get back in the house. We had no idea that would John�s last meal but he enjoyed it so much. He LOVED cheesecake. Everything he ate, he would say how good it was. What an awesome last meal. Ned and John chatted about his behavior and that night John cleaned up the kitchen and cleaned up his room. All medical personnel who heard this could not believe it with his blood work. They couldn�t believe he had the energy to do that.

On Thursday morning around 6:30 am, I gave John�s his morning medicine and noticed his shallow, fast breathing. This was something I had not heard before and scared me. I woke up John about 9 am to go to Doernbecher�s. He said he didn�t feel good enough. About that time, the hospice nurse called. He said things will happen very fast and we should know John didn�t want to die at home. He also said John could bleed out. I couldn�t take that. I went back into John�s room and said we have to go to Doernbecher�s for platelets. John must have heard the strain in my voice and asked why. I told him he was very sick and we needed to get him some platelets and red blood cells. He asked if he was dying and I said yes. We both started crying which woke up Ned. John said I am not ready to die then said how much he loved his brother and he needed to tell him. I told him he would but we had to get him to Doernbecher�s. I told him how much I loved him and reminded him that Ned and I would be fine. Ned was able to tell him also how much he loved him. We told him we didn�t want him to die either.

Ned guided John down the stairs and John had to rest for a bit. We finally got him in the car and John started asking where his possessions would go. I told him not to worry about it. We get to Doernbechers and it was incredibly hard to get him in the wheelchair. He wasn�t able to help very much. Dr. Lamkin came in on his day off to see John. John commented his hearing was affected and we could all see his eyes were swollen. It was very hard for John to get a sentence out without falling to sleep. Dr. Lamkin had to ask if John wanted to be admitted because if they admitted him, he would not be going home. Dr. Lamkin thought we had days left. John said he didn�t want to die at Doernbechers but was worried about how that would affect Ned, I, and Andrew. I told him we would be fine, do what you want to do. He said he wants to go home. We get a clinic room to infuse platelets and red blood cells. I asked Dr. Lamkin about bleeding out and he told me he would never allow that to happen. He will make sure John�s has platelets.

Due to IV issues, the transfusions would not be done at a good time to go home. Ned had arrived by the afternoon and we both acknowledged how much pain John was in. We decided it was in John�s best interest to be medicated by IV and get the red blood cells as soon as possible. We were hoping this would give him an energy boost and we would be able to talk with him on Friday. He was pretty much out of it.

Several people came to visit Thursday evening. John slept peacefully with his fast, shallow breathing. About 10 minutes after everyone left, he woke up asking where everyone went. We had no idea he knew people where in the room. He asked for a diet coke and sour gummy worms so I headed out to get those for him. He was asleep when I got back and never really woke up again.

As the night progressed, he was in more and more pain. He would scream �mom, mom!� and I would go to him. I don�t know if he could hear or see me. In the early morning, he would relax when I held his face and spoke to him. I told him I loved him over and over again and I got one �iwuvu�. I would look into his eyes several times and plead for him to say something to me and he eyes would only move. The nurses kept increasing his pain medicine to get him comfortable but it never seemed to be enough. It was a very long night.

I called Ned in the morning and told him things were changing fast and he should get there. Andrew wanted to visit and we decided to not bring him in Thursday night since John was sleeping and we thought John would be awake on Friday. Ned left Andrew sleeping at home and came into Doernbechers. John responded some to Ned; let him know he hurts all over. Nurse Linda kept increasing his medicines. She was all over making sure John was comfortable.

The hospice pastor came by. We spoke to him for a bit outside of John�s room and I was mortified to be in my PJs still. He came into John�s room to say a prayer. It was one of passing and John growled at him three times. A completely different sound than what we had heard all morning. When he left, both Ned and I thought he said something that pissed off John.

John�s breathing pattern changed. I didn�t like it at all. I spent some quality quiet time with John. He wasn�t able to talk to me but I was able to cradle his face and look into his eyes. He seemed so peaceful. He had a couple tears. I felt a sense of comfort from him. He wasn�t moaning or screaming in pain. He was taking random deep breaths. Ned said it was probably waves of pain and that he was getting more pain medicine so I should take my shower.

The Doernbecher pastor came in and I proceeded into the bathroom. As I stepped into the shower, I could hear the pastor starting a prayer. When I was drying off, the door rattled frantically and I knew it was bad. I came out and Ned exclaims he is gone. I couldn�t believe it. I wasn�t there. How could that happen? The pastor said he read Psalm 24 and at the end of the prayer he asked God to guide Johnathon and Johnathon took his last breath with Ned holding his hand. I honestly believe John didn�t want me to see his last breath and that is why he reacted to the first pastor. Nurse Linda said in 17 years of nursing she has never seen anyone pass so peacefully. John had a smile on his face. My mom and dad arrived 30 seconds after John�s passing. Helena Lulay was close by. I spent the next four hours with him. I think ultimately John would have liked how it all turned out. The Doernbecher staff was able to say goodbye. I would not let them to take him to the hospital morgue and the hospital was fine with that; they said I could have as much time as I needed. My brother arrived around 1 pm and I asked the funeral van to ready around 2 pm. I went with him to the van to transport him to the funeral home. He was my son and I was staying with him as long as I could. I wanted to protect him and I couldn�t do that anymore. I know I didn�t need to. He was safe and happy but I was supposed to be the one to guide him and I didn�t have that privilege anymore.

Since Andrew was home alone, Ned called Karen Olsen and she had to tell him. There is tremendous guilt of not getting Andrew to the hospital to see John. With the information we had, we made the best decision we could. We wanted John to be able to talk to Andrew and we didn�t want Andrew to have memories of John in so much pain.

None of us expected this to happen so quickly. We will always want that extra hug, extra conversation. We know John knew how much everyone cared for him. He was not afraid to die; he wanted more time to live.

Memorial is Saturday at 3 pm at the Wilsonville High School stadium with a reception to follow. John wanted us to celebrate and celebrate we will.

Wilsonville Spokesman is running an article on John this week.

Sunday, May 10, 2009

Afternoon - I posted Lorie's information above. If you have pictures you treasure of John, please e-mail them to her.

Thank you for everyone's support. You are our wings carrying us right now.

Morning - Today is Mother's Day and I find I have no bitterness towards today. I am a proud mother of two boys. One may be heaven but he will always be with me. He and I shared so much time together going through the five year journey. I had the privilege to really get to know him. On Wednesday, he was concerned about how I was doing and said, "Mom, you are my best friend." I will treasure those words forever. We had a wonderful mother-son relationship. Many times he would be too open with me and I would tell him "TMI!!!" (too much information). He would smile and typically keep telling me the story anyway. I was going to hear what he had to say one way or the other. He was a beautiful son. I will treasure today knowing I had the honor to be his mother. I will take the time I had over not having any time any day. The journey was hard but he was a blessing. I wish he would not endured so much pain during his life but I truly believe he would have chosen that life over none. The journey brought many wonderful people into our lives. He had commented on that several times.

John - Thank you for being who you are. I love you so very, very much (more).

Saturday, May 9, 2009

10:25 am - I miss my buddy. Part of my heart is missing. I keep telling myself he is so much better now. I know deep down he is looking down and shaking his head; he didn't want anyone to cry. He wanted people to celebrate the life he had. He made the best out of every day and he wants others to do the same.

John is at Cromwell Funeral Home in Wilsonville (over by the Post Office). He didn't want people to see him so there won't be a viewing. He will be cremated; we don't know where the ashes will be scattered. He had ideas. We have to figure out when it is the best time for our family. However, I thought if anyone wanted to have an opportunity to be close to where his body is, you have that opportunity to be by the building. I know it is only his body there but I know I needed to be by him for a couple hours yesterday. I felt closer to him even though I knew the body was only a vessel no longer needed.

There is nothing completely set for his memorial. It will be at the Wilsonville High School Stadium next Saturday around 3 pm. John would not want people to wear black. I think he would love it if everyone wore clothes for a football game. Whatever you think you would wear to a football game would be perfect. He said many times he wanted to people to be happy and celebrate. We will do what we can to make that happen.

Lorie Yavorsky is putting a slide show together. If you have special pictures, I will get her e-mail for you to send them to her (I post it on this site later) or you can e-mail nedglenda@aol.com. If you have special memories of John, please send them to PO Box 615, Wilsonville, OR 97070 or you can drop them by our house or e-mail.

John loved many people and I know he is with us all wanting us to get through this in the most painfree way.

Friday, May 8, 2009

John passed away at 10:25 this morning. It was peaceful.

Friday, May 8, 2009

Rough night last night. Joh would wake up at least every 30 minutes yelling for "mom" then moan/scream in pain. I would try to comfort him but he would look me with a blank stare. He was never able to tell me what hurt. I would continually tell him I love him and once I received a response. His breathing is still fast and labored. His heart rate is high and he is running a high fever. It is pretty much impossible to communicate with him. I know he is on a lot of pain medicines and I want to believe we are seeing those affects. However, today his eyes do not focus and they are not tracking together. My gut tells me we are close...my heart says NO WAY. I want to go back in time and have more conversations with him. He's been so afraid of dying and I didn't know how to help him. I am scared too and it wasn't something I knew how to discuss. I just can't believe we are at this point. I love him so much. I love him enough to know that his life isn't quality and he will be better. It will be those who are left behind that will fill the void. John's been a very large part of my life, especially the last five years. I can't imagine not have frequent conversations with him. I will miss his kind but honest personality. I am very proud to be his mom.

Thursday, May 7, 2009

Evening: Today was hell. John woke up in a lot of pain and it took us while to get to Doernbechers for transfusions. He would be exhausted going down the stairs so he would need to rest for an hour before he had the energy to go to the car. I had to get a wheelchair for him at Doernbechers. He was so incredibly weak.

Dr. Lamkin had the day off but came in to see John. John's eyes are swollen and he is having trouble hearing. He isn't tracking well. Dr. Lamkin thinks John probably has days to live. It is all progressing very fast.

The IV therapist had trouble getting a vein. John's blood level is so low. Everyone was surpised how well he was yesterday with the results of his bloodwork. They got a vein and started pain medicines then platelets and IV came loose. It took two more IV therapist to place another IV. John screamed in pain. His body hurts so bad.

John has had two platelet transfusion and is getting his first of two red blood cell transfusions. Due to John's blood counts, there was some concern he may go into cardiac arrest with the red blood cell transfusion. I had to tell Dr. Lamkin today that we will not do CPR or anything to save him. So flipping wrong.

John has been out of it all day. His breathing is fast and labored. Every once in a while he would say something we understood but mostly we could not. Dr. Lamkin said the leukemia is in his brain and we'll get less and less of John.

I know I wrote earlier to call John but he isn't able to use his phone. I don't have any answers to visiting. I don't know how he will be tomorrow and I don't want to overwhelm him with visitors if he is feeling better.

Thank you for your prayers.

Morning: It's been a rough couple weeks and we got bad news yesterday. The leukemia is progressing very fast. Dr. Lamkin thinks it is in John's central nervous system. His blood work came back with 119,000 white blood cell count (normal is 5,000). The leukemia is in his bone marrow. Dr. Lamkin thinks we have less than two weeks. Hospice said things are going to happen very fast...whatever that means. The hospice nurse and social worker will be here this afternoon to go over John's requests for passing away. Ned, I, and Andrew are devestated. We all knew this was a possibility but never wanted to believe it. John is very sick. If you want to visit him, you should call him.

Sunday, April 26, 2009

I guess my hope of updating more often after tax season didn�t really happen. It�s been incredibly busy with Johnathon this past week and once I get so far behind, I know I�ll need extra time to get it all written down. I know I will forget some stuff but you should get most of it.

Tax season ended and John�s medical appointments went out of control. Dr. Raj decided John needs 10 days of radiation on his left leg (one with wound). She said she is done messing around with it and instead of focusing on a small area, the leg is being radiated from the ankle to the thigh. His leg was quite painful and the techs had to set up a special position to be able to radiate his leg. Due to pain and lack of flexibility from the extreme swelling, he could not position it the way they needed it. I guess he is up high in a chair so the machine can position itself correctly. As they were setting him up, I could hear the excitement of the staff as they were taking peaks in the room. Dr. Raj put John back on steroids and he had his first treatment on Friday, April 17. I was hoping something would help his leg quickly so he would enjoy Saturday�s night events.

Saturday night�oh my�what a wonderful evening. The owner of Pacific Office Automation is the one who gave us two tickets on the court level and sent the limo. We do not know him; he found out about Johnathon�s journey and wanted to give him something special. The meal at Morton�s was a gift from Ned�s work along with the extra two Blazer tickets so Andrew and I could join them. It was incredibly exciting to see the limo pull up to our house. We had a blast on the ride to Morton�s . The staff at Morton�s was waiting for us and treated us like royalty. They all knew we were heading the game and were absolutely wonderful (the food was AWESOME). The limo was waiting for us when we finished our meal and off to the game we went. We had to go to will call to pick up four court passes�can you believe it?? We made it to our seats just in time for the Blazers to be announced. The Rose Garden was shaking. You could not help but smile. Andrew and I were on the 200 level, pretty much behind the area where Ned and John were sitting. John was so close to the visitor�s bench, he was able to talk to the players. As the Houston Rockets were going into the locker room at half-time, one player tapped John and asked if he has lost his dog because he looked so sad (Blazers were not winning). At half time, Ned and Andrew switched so Andrew could be on the court. After the game, we were told to wait by the Blazer bench. Chico, Blazer VP, came out and told us to follow him. We went back to the locker area!!! Can you believe it??? Chico gave John a game ball and told him to get signatures. As we were waiting for the Blazers to come out of the locker room, I realize we are with Blazer families. Ned is cooing with Brandon Roy�s baby daughter! OMG!! The Blazers were very gracious and didn�t hesitate to sign the basketball. They also signed Andrew�s cap. Prezbylla signed the back of Andrew�s Blazer jersey. He even chatted with John a bit. He asked if Andrew was his older brother and John said no, he is younger and 14. Joel said �boy, he is big!� How funny when Prezbylla is HUGE! Joel then asked John if he is coming to the Tuesday�s game. John said he wish he could but he doesn�t have tickets. Joel said he will take care of that. Chico came over and said I don�t know what you said to Joel but he is taking care of you for Tuesday�s game. Someone will call on Tuesday. John was beaming!!! We walk out of the Rose Garden and there�s the limo. Oh the life. All the way home, John had a permanent smile. Absolutely priceless.

We picked up our tickets at will call on Tuesday and they say 200 level. We are excited and off we go. We find out the only way to get to our seats is by elevator. Hum�interesting. Maybe Ned had a clue but I was clueless. We get off the elevator and walk by massive food�like a restaurant but you have to go through it to get to your seats. We get to our seats and we are in a row of four and have a great view of the game. We then notice a waiter helping the people in front of us. Waiter?? 200 level?? We were on the club level. All the food we passed on our way to our seats is free to our section and it�s not just game food, its sliced roast beef, sliced smoked turkey, pasta salad, desserts�the boys wanted cotton candy and we had to yell at vendor outside our area to get it. Must be below our section�s palette. Ha, ha! The food was very good and Andrew was very happy. All the food he can eat without having to ask for money to get it. In addition, we had passes after the game with our tickets. We went down to the courts and were able to wait for all the players come out of the locker room. This time we were with other fans so it was not as personal. However, we were able to see the Houston players. They weren�t willing to stop and chat. BLAZERS WON and what an exciting game. I think we were all smiling most of the game. Another wonderful memory!!

As for John�s appointments, we average three a day. Radiation is once a day then Hospice is the remaining appointments. The hospice team consists of nurse, social worker, pastor, doctor, PT, and acupuncturist. John also had a CT scan of his neck one day (new tumor) at the radiation clinic so it made for a longer appointment on Wednesday. On Thursday, he had CT of his knee at 7 pm. The day�s appointments don�t necessarily end at 5 ish. The CT of his knee did not go well. He was in too much pain and they couldn�t get it done. The CT tech asked to reschedule and I told him next time won�t be different. We need to figure a different way to do it. I called the hospice doctor on Friday but haven�t heard back from him. The PT gave John exercises earlier in the week for the right leg and put him into tremendous pain. They need to figure out what is going on with that knee.

We switched John�s main pain medicine on Friday. The hospice nurse thinks this new pain medicine will be more effective. When I am picking it up on Thursday, the pharmacist lets me know it could react to a current medicine John is on and he may have trouble breathing. WHAT? I asked her what do I do if it does�do I call hospice or 911? She said it depends on how much trouble breathing he is having. I immediately called the hospice doctor and he calmed me down.

The new pain medicine takes a while to build up. We have been using break through pain medicines and emergency liquid pain medicine to help control his pain. On Saturday morning at 4:30 am, John woke me up needed break through pain medicine. All the pain medicine is locked up and Ned & I only have access. I gave it to him and went back to sleep. At 9:00 am, the carpet cleaner arrived (Cheyenne got sick earlier in the week on our carpet). I have Sherman outside going nuts on our back door and I am trying to keep the stuff picked up off the floor for the carpet cleaner. I notice doors are open and Cheyenne is gone. I go looking for her outside and luckily she hasn�t gone far. I put her into John�s room and he is in tremendous pain. He is going back and forth with his body, moaning. I realize then I forgot to give him his morning medicine with his regular pain medicine. I guess getting up at 5 am threw me off. I have NEVER forgotten morning medicines. I give it to him and he says that won�t work fast enough. I run back downstairs, over the hoses, to get the break through. He can�t stand the pain and wants the emergency medicine. I ask him to wait a bit to see how the break through works. I start cleaning up stuff from the floor again. I check on John and he is still in massive pain. I get him the liquid pain medicine and within 15 minutes he is asleep. I hear Sherman scratching away at the downstairs door. I run downstairs and there is blood on the door. The poor dog wants in but there is no where I can put him with the doors open for the carpet cleaning hoses. I take him to John�s room to be with Cheyenne and because is so excited to be inside, he is loud and wakes up John. AAGGHH!! Back outside he goes. I am ready to sit down and cry. I call Ned and he will be home soon. He had taken Andrew to referring class and was doing errands I asked him to do.

John wakes up and we ask how he is. He says fine and Ned checks on him. He is running a 102.5 fever. I call hospice as Ned gets John Tylenol and a soda. Hospice is concerned. This is a pattern that worries them. I tell his pain is better and is chatty. She tells me the hospice nurse will visit tomorrow and we are to call if we can�t get the fever until control. The Tylenol works and John comes downstairs. His pupils are dilated and he can hardly speak. He is flippin� so drugged up. I am confused because the liquid pain medicine can be given every hour so wouldn�t it have worn off by now? The break through is every four hours. John cannot stay awake. He falls asleep as he is eating and crutching. Ned and I take turns watching him to make sure he stays down. Ned had to leave again. John doesn�t get what is going on and thinks he can crutch to the kitchen to make pudding (his latest craving). He falls asleep on the counter. It�s all I can do to get him back to the couch. I had to be so mean to get him to listen. I would look at his eyes while I am talking and realize he�s not really there. I decide I have to stay by his side every minute. Ned gets home and John is a bit more talkative but still falling asleep in mid sentence. We get him dinner hoping food will help. He fell asleep while eating but he�s definitely a little more responsive to our voices. By 10 pm, we see some signs he was coming out of it. This morning he is much better. We will see the hospice nurse later today. I have a lot of questions. This was not a good thing.

The good news is the CT scan of the chest area didn�t show anything significantly different. It appears both kidneys are now functioning. YEA! One isn�t functioning great but it is functioning. The wound is healing some. Even the hospice nurse was pleasantly surprised by the progress the wound is making. It sure smells. The nurse says it is the dying skin and the smell is ok. I�ve been told to be concerned of smell due to infection. Every time I smell it, my heart drops then I realize its ok. The bandage fell off while we were waiting for CT scan. People in the waiting were staring at it. It is gross. When John went back for his scan, one guy said �I got to ask what he did�. I told him its cancer then he wanted to know what type. After I told him leukemia, he didn�t say another word.

Thanks for all the meals last week. It was perfect timing!!!

We are taking off for a few days so I won�t be updating. We need some family time without medical personnel. I hope it all goes smoothly. It never seems like it does.

Thursday, April 16, 2009

5:15 pm - Pictures are posted!!!

More wonderful news from the Blazers (and perhaps some secret elves...I don't quite understand who all is involved). We were told yesterday the Blazer organization was sending a limo to pick up John and Ned for the first play-off game and they would have seats in the second row on the court. Today we were told that all four of us will be picked up in a limo on Saturday, have dinner at Morton's Steak House in Portland then go to the game. OMG. People are so incredibly generous.

Today Pam Staub dropped off dinner, ready to be put in the oven. I can smell it now and it smells great. I am so exhausted and very excited to enjoy a home cooked dinner.

My mom came down on Tuesday and left today. She was here to help out. It got a bit crazy yesterday trying to wrap up tax season. She would take the boys where they wanted to go and helped with dinner & laundry. Thanks mom!

I will write more later. I wanted to post the new pictures and let you all know the wonderful news. It hard for me to even type...my body is definitely telling me it's time to rest...maybe the massage today has something to do with that! Trinity is wonderful!!

John has a radiation appointment tomorrow to see what they can do about the new mass behind his knee (on wound leg).

Wednesday, April 15, 2009

Secret....John is on his way to the Blazer game. A lot came together at the last minute and the Blazers offered tickets to Ned and Johnathon. John doesn't it know it yet, but he should be on the court greeting the players. I will explain more later when I get the details correct. As you may guess, my brain is mush. However, if you are watching the game on TV, look for John!!

TAX SEASON 2009 IS OVER, OVER, OVER!!!!!!

Monday, April 13, 2009

HAPPY EASTER!

The great news is tax season is winding down very quickly and I will be better about updating the journal. I am so excited to see this tax season come to end. I never knew what tomorrow would bring and how I would manage my work load. I�ve worked basically every day since beginning of January. Some days were low in hours due to medical appointments or hospital stays with Johnathon but I knew I had to try to work as much as I could. I am very fortunate to be surrounded by amazing CPA friends. My tax partner took on an incredible load to lessen my hours (You rock Karen!!). I don�t how she kept up the pace she did. A couple friends who have practices offered to prepare returns or come to my office to prepare returns. One friend lives in South Carolina and she offered to get on the next plane if I needed her assistance. Thank you so much. I am touched by your generosity and thoughtfulness.

It has come to my attention that I have not mentioned Ned very often in my journal entries. Someone asked about his involvement with this journey and it�s has been incredible. He has a day off during the week and he typically takes John to two or three doctor�s appointments on those days. When John is inpatient, he stops by on his way to work and/or on his way home. He works 10 hour days but he would make sure he would see John and me daily. He would keep the laundry exchange going and bring our many items we always forgot. He does what needs to be done and makes sure he has time for all of his family. He is as involved as any dad can be while juggling a career and family. He rarely goes out of town but when he did a couple weeks ago, the boys were lost and it was only for a night. We are all one.
What do we know from last week�

The hospice nurse came on Thursday. I guess Thursday mornings are our scheduled weekly appointments. He is a nice man and very straightforward. I suppose it is what is needed but he takes my breath away every week�not in a good way. This week he made sure we understood John�s wound would never heal. The leukemia affects the blood flow and the way the body heals itself. Ok, if the wound never heals then our hope of chemo is dashed. We need hope. It�s hard to keep grasping when someone tells you it�s not there. He also said John will get low grade fevers and it�s from the wound and the leukemia. He said our focus with the wound is for it not to get infected. If it gets infected, it would be difficult to fight. Breath�in�out�.AAGGHH!

John�s pain fluctuates. It gets bad for several days then gets a bit better. I didn�t think he would feel good enough to go to OSU by Thursday but on Friday, he felt good enough to leave. He said the pain was pretty intense over the weekend and his leukemia leg is now quite swollen. He sees Dr. Turker tomorrow as well as the surgeon and Dr. Lamkin. It will be full day. I�m not sure anyone knows what is going on with the leukemia leg swelling. Dr.Raj is worried about a blood clot. John is good leg knee is still hurting but it�s not swollen. He puts a heating pad with an ace bandage on it quite a bit.

John�s last radiation appointment was on Tuesday. CarolE :-) took him again. Thank you Carole!!! The radiation clinc staff gave him a certificate for completion of treatment and sang to him.

On Wednesday, Dr. Raj (radiation doctor) had the day off. It was her birthday. She had told John the day before. She called me to let me know about a story in the Oregonian about the Caring Cabin and how she called them to see if John could go even though he is 19. They said he could so she was calling to get my permission to tell them who he is. I told her we already went two years ago and it was absolutely beautiful and we had a wonderful time but I thought it was a onetime only deal. She said she was calling them back to see what she could do. She called again and confirmed it was one time only. How amazing for her to go out of her way like that.

John had his CT scan on Wednesday night. He had to drink two 15 ounces of a mixture before he arrived. John has a sensitive stomach and it wasn�t easy getting these drinks down but he did. We get there and complete a questionnaire. It asks about kidneys and I write that one is not functioning. John went back and when he returned an hour later, he was fuming. The tech gave him a lecture that the mixture they gave him could have shut down his good kidney�.there is nothing in his chart about a bad kidney. There is another mixture they would have given them (it�s more expensive so it�s not the standard mixture but it�s better). I asked the hospice doctor the next day and he confirmed there is nothing in the charts. I�m not sure what happened. Dr. Lamkin told me a kidney shut down but Dr. Raj told John there was tumor against the nerve to the kidney (she did not mention it shut down�remember I wasn�t in that meeting so I didn�t catch the discrepancy). The radiation clinic does not do diagnostic type work so maybe they can�t add diagnostic notes to records? Maybe the scan was read in more detail later and the kidney wasn�t completely shut down? I don�t know. The new scan should tell us though. We are all dreading tomorrow�s visit to find out the results. It�s difficult to handle what we think we know now.

Please pray for Boe Jacobson�s family. Boe graduated from Wilsonville High School several years ago. He past away last weekend from a diving accident. He was only 21.

Monday, April 6, 2009

Last Tuesday, John saw the surgeon. The doctor will not surgerically remove the dead portion of the wound. He said that could stimulate the leukemia. Instead, he pulled off a layer of the dead skin on half of the wound to see what will happen. We will go back to in two weeks to determine if that was a good idea or not.

John had radiation Tuesday thru Friday...typically in the late afternoon. We've spent quite a bit of time on the freeway. Rush hour sucks. On Friday, Carol offered to take John. I was a bit hesitant because I feel I should be doing it and I should take advantage of the time I have with John but John was looking forward to visiting with her and I thought it would nice to have a break. John called from the radiation clinic and he was running a fever. Has he ever run a fever with me there? NO! John wanted to know what to do. I told him I didn't know since he was not immune suppressed and he should talk to Dr. Raj. Carol called me a couple times to keep me in the loop and it was decided he should go see Dr. Turker, orthopedic. John's good leg is having issues. The knee is swollen and creating a lot of pain. It all started very quickly mid-week, about the time steriods stopped. Dr. Raj thought the knee may need to be drained. At 4 pm, John and Carol were in N. Portland trying to get to St. Vincent's. Ugh. Dr. Turker said it wasn't bad enough to be drained and we were to call him during the weekend if the swelling got worse or he got a fever; he would meet us at Doernbecher's. John was planning to go to OSU for the weekend but the pain was so bad, he cancelled. Dr. Raj and John also believe the leukemia is growing around the wound again.

Hospice team members needed to meet with us within five days of signing up (we did not know this). So on Wednesday, we met with the nurse again. On Thursday, we meet the pastor and doctor. On Friday, we met the counselor. All the meetings went well. They all commented what a unique situation this is with Johnathon being 19. Sometimes I wonder if I am not showing enough emotion because the nurse wants to make sure I understand timelines of leukemia at this stage. The doctor asked how I was and I responded "fine". He then asked "no, really?" Ok, John is right beside him. I am not going beyond that. The counselor mentioned we are unique because we have been handling this so long. She also asked a lot of questions about our support and what type of support we receive. I highly doubt she meets too many people who have the wonderful support that we do. She did give me a mini lecture about letting people help out more. It��s easier to allow people to help when John is living at Doernbecher��s but when I am home, I feel like we should do it all. I understand what she is saying. We are all feeling the strain of it all. I'm glad the 15th is close�Kkind of. I worry I��ve buried a lot of emotions while keeping busy.

My brother and nephew came to visit on Wednesday and Thursday. It was great to see them. John wasn't feeling very well and wasn't able to visit as much as he would have liked. I felt bad because we definitely weren't in "visitors" mode. Once he was here, I looked around the house and realized what a mess it was and our kitchen wasn't stocked. I know he didn't care but it was one of those "oh crap" moments. Good thing his son likes saltines!! :-) I did make a grocery run since he was here. I should have done it before they arrived. My mind just isn't tracking like it should.

The weekend was relatively uneventful. John was in tremendous pain so he didn't do very much. He kept his leg elevated by laying down the majority of the time. You know it's bad when he used the wound leg for his support when he crutched. He didn't run a fever. Whew.

Today he saw Dr. Turker again. He was supposed to see Dr. Lamkin (oncologist) but Dr. Turker's appointment took too long. Dr. Turker thinks John may have torn meniscus. It may be an old injury; this knee has given John problems in the past but not to the current level. He will get MRI and perhaps have arthroscopic surgery. Can he not get a break? Dr. Turker did have John stop taking the antibiotics. John had radiation this afternoon but they moved it up so we didn't hit rush hour traffic. YEA!

Tomorrow is his last day of radiation (at 3 pm...bummer). On Wednesday evening, he will have a CAT scan of his chest. We haven't made the MRI appointment of his knee yet.

Ned's work sent a beautiful plant. It is gorgeous. Thank you Chaplain! I have it where I can see it from my office.

Lisa Willette dropped off a box of goodies from her bible study group tonight. It was a lot of fun taking turns looking at what is inside (and eating the goodies too!). She dropped off dinner last week. It was awesome. Thank you Lisa.

Thank to everyone for all your continued support and prayers. We appreciate it all.

Monday, March 30, 2009

Today was better.

John had three appointments...all at different locations. His first was at St. Vincents then to North Portland at Interstate then to Doernbecher's. This is definitely the not so fun part of being an adult. Specialities are located in many different locations. However, we are fortunate we do live close to Portland and these trips aren't truly trips. I remember meeting people from Bend and other out of town locations at Doernbecher's and I don't how we would have managed dealing with this journey for five years not living in the Portland area.

John saw Dr. Turker (orthopedic). He wants John to see the surgeon tomorrow about his leg. There is a lot of black skin. Dr. Turker says it will start to fall off but perhaps the surgeon may be interested in removing it.

Radiation was uneventful as far as new information.

Oncology was good. Dr. Lamkin stressed to John that even though John is in hospice that it doesn't mean he has given up on him. Dr. Lamkin said John qualifies and he might as well get the extra help while we can. John has the right to stop hospice at any time if he wants too. I think it will actually be very beneficial to have someone helping us out with everything. It's like having a personal nurse who has the support to be able to make quick decisions. I like that. It gives me some relief to know I have someone to call who is aware of everything and will be calling us and visiting often to stay on top of all John's medical needs. They get pain medicines and aren't nervous about it. They get side effects of pain medicines and what works and what doesn't. John is unique with all his medical experiences, especially with the bone marrow transplant. What typically works for someone else, isn't necessarily true for John. In addition, John has some major allergies (penicyllin, Vanco, amoxicyllin, Adivan..to name a few) which makes it more difficult to treat him.

Tomorrow John has an appointment with surgeon and radiation.

The steriods have definitely affected John's appetite. He is eating lots and making good choices. His chest hurts when he eats. I'm not sure what to think of that. It could be a side effect of the radiation and creating heartburn. We don't know. John will have a CT scan Wednesday night of his chest area.

Sunday, March 29, 2009

Made it through our hospice visit. I knew it would be hard and it was. The nurse was very kind, comforting, and straight forward. There was no confusion why John is in hospice and he made sure we knew to qualify meant there is no cure. He didn't say anything I didn't know but it doesn't make it any easier to hear. The good news is that they will take care of all of us. They will be in touch with us regularly and closely monitoring John's pain management. They have direct contact to a doctor so there is no waiting for a return call and we'll be able to react sooner to pain. Tne nurse will help handle all our medicines and wound care so I don't have to worry about supplies. All I do is tell him what I need and he makes it happen. They will also send a social worker and a pastor. It's all part of the process. It's a very nice service but it should only be needed those are elderly...not a teenager.

Friday, March 27, 2009

John is feeling fairly well. He acted like he started to feel better yesterday. He went to the beach with a couple friends; it was less than 24 hour trip but I think it helps him to get away.

Dr. Raj is radiating the lymph node in the hip area to help the pain and blood flow. She is not treating all the lymph nodes with leukemia. His bone marrow wouldn't be able to handle it.

Hospice called yesterday and they will be meeting with us in the next couple days. The first appointment takes two hours. I guess that makes sense; they need to get caught up. Hospice primarily will be involved with pain control but they will offer other support when needed.

Dr. Raj was pleased with John's progress today. John's leg is less swollen so she thinks the steroids are working. Steroids work well against AML. John said his appetite hasn't changed so hopefully we won't experience the nasty steroid side effects. Dr. Raj said it will take 3 days before we see the radiation doing anything. John may get sick with these radiation treatments. They are higher doses than the previous leg radiation he had. He is taking anti-nausea medicine in hopes he won�t feel poorly.

John told me he may shave his head for St. Baldrick�s Day. How many times has he experienced a bald head from chemo and radiation treatment�and now he is willing to shave his hair to raise money for cancer research. If he does it, I will post his webpage on this site.

Thank you so much for the outpouring of support. I appreciate the offers of assistance but I don�t know what we need right now. John is feeling better so that makes it much easier to manage. We are so incredibly blessed to have so many people showing their support and offering prayers. I can�t imagine going through this hellish journey without it.

Wednesday, March 25, 2009

Another journal entry where I don't know where to start...

Last night at 8:30 pm, Dr. Lamkin called the house. I knew it couldn't be good if he was calling so late at night. I took a deep breath and waited for it. I thought maybe John's bloodwork came back bad. He said a lot of John's lymph nodes are enlarged. Dr. Raj used the IV contrast in the CT scan yesterday and they have unexpected results. Basically, John's hip and stomach area lit up (meaning leukemia). It's all over his hip and stomach area. Dr. Lamkin expect it is also all over in the chest area too. He wants another CT scan so those areas can be check (Dr. Raj only looked at the hip and stomach area). The enlarged lymph nodes are putting pressure on the venice (?) system, which is creating the swelling in the leg. In addition, John's left kidney is not functioning and that also relates to bloodflow. We only need one good kidney. Dr. Lamkin said we will have to watch John's blood pressure very closely. Dr. Lamkin brought up hospice again. I told him go ahead and refer us. They should contact us today.

I was suppose to meet my parents to exchange Andrew while John was getting his radiation today. I knew that wouldn't work if John was told the news today (I forgot to ask Dr. Lamkin if I should talk to John and decided it would be better to allow Dr. Raj so John can ask questions...besides why tell him late at night.) I called my dad this morning to let him know and we were trying to figure out an alternate plan. After I spoke to him, I called Karen Olsen. She offered to take Andrew to meet my parents. Thank you Karen.

On top of all of this, Ned is out of town. I decided to not call him last night so he can finish his training. He is suppose to be back tonight anyway. He found out this morning and is on his way home.

Dr. Raj came out the waiting area to talk to me. They were having problems getting the radiation done. John is too long for the hip set up they had and he was in too much pain for the leg. I told her I had not told John. She said she was very surprised how extensive the cancer is. She is getting more pain medicines for John and we are to go back at 4 pm. She is also putting him on steriods to help the swelling (yes, the same type of steriods that created the AVN and led to two hip replacements). She asked is she should talk to him alone and I said yes with him knowing I would be there in a second. Sometimes John doesn't want very much information and being alone gave him the ability to stop the information flow. I don't know if that was a good decision or not. Ned or I have always been there but lately, John will ask for no parent time with Dr. Lamkin. Dr. Raj said they will do 10 days of radiation and she does not want to wait until tomorrow to start (the reason why we are going back to North Portland at 4 pm).

On the way home, John told me Dr. Raj had talked to him. He said he cried a lot and Dr. Raj also cried and said she was very glad to have the opportunity to know him.

Holy crap...is this really happening???

Tuesday, March 24, 2009

Back from radiation. They took ultrasound of his leg and hip using dye. They will radiate the areas for the next three days. The wound isn't looking good. It stinks, which could be an infection or from the dying skin around the wound. The wound is also oozing, which could be from lymph nodes not working properly and leg needing to drain somewhere. It was obvious the radiation doctor is concerned. It also appears the leukemia may be growing again in the lower leg. John has a large, firm area in his thigh (left leg..same as wound) and no one really knows what it is. Maybe we'll find out more tomorrow when the scans are read to us.

Dr. Lamkin told Ned and John yesterday we should consider hospice. It's hard to for me to even think of it. When John and I talked about it, he said only those dying qualify for the services and it's hard to handle that. I so wish I could take all this away from him and let him live a normal life.

Monday, March 23, 2009

John arrived home at 2:30 am today! It was a long day of flying but all went relatively well. He was able to sit in first class for the first part of the trip.

Today was spent taking him to see Dr. Lamkin and getting tests done. Dr. Lamkin thought maybe he had a blood clot and he does not (we were hoping he did). The lymph nodes are swollen so Dr. Lamkin thinks the leukemia may be in the lymph nodes, which really "concerns" him. We have an appointment tomorrow with radiation. Dr. Lamkin think radiation is the best choice right now. We really need for John's leg to heal...yesterday...so we can have more choices.

John is in good spirits. He is exhausted. I am getting quite a few stories but I'm sure we'll hear a lot more when he is rested.

Sunday, March 22, 2009

1:20 pm - Louise text and wrote they are landing in Newark. Thank god. At least John is now in the states.

Saturday, March 21, 2009

John called from the ship. My cell rang and this time my heart didn't drop because I thought I would hear by now if there are problems.

John's entire left leg is swollen to his hip. The swelling started after the plane ride. The ship doctor initially thought it was from the traveling and they weren't too worried about it. The swelling has continued and they want to get him on antibiotics asap but they don't know what type. John called me to get the oncologoy emergency number (guess I forgot to give that to him). John sounded good and said he has had a blast. The doctors are worried about the trip home. If the ship doesn't have the right antibiotics then he will need to go to the dominic republic's health clinic. He is sooo close to getting home. Crap, Crap, Crap.

Please pray for John's safe arrival home tomorrow so we can take care him.

Friday, March 20, 2009

No word from John. Everytime my cell phone rings, my heart skips a beat. I sure hope he is having a blast.

Last night was the Wilsonville HS Wrestling Awards night. Andrew did letter (YEA!) and he earned all-league. We are very proud of him. He doesn't feel he deserved it. He didnt' do very well at varsity level but the only way he could get what he did is by following the rules of the sport. He didn't ask for a letter or to be all-league. I hope he can soon enjoy this accomplishment; he stepped in when asked and did his best.

It's been a good week overall. I didn't realize how tightly wound I've been. I can feel myself relax and able to deal with life situations better.

I think I've made some progress with Andrew. He truly has so much to deal with and I haven't been there for him like I should. My next step is to read a book on Aspergers. Maybe it will help me learn to deal with the disability better.

I miss John and look forward to him returning.

Monday, March 16, 2009

Update: Dr. Bill Chang (awesome doctor at Doernbecher's) is shaving his head for St. Baldrick's Day in honor of John. If you would to know more about the event and/or donate, please check out this site http://www.stbaldricks.org/kids/kid_info.php?KidID=1614#

Thank you Dr. Chang.

I updated photos. They are of Andrew at wrestling districts(no more wound pictures to look at!)

Morning: Ya, it�s been a while since updates. As many of you know from reading this journal for so many years, tax season is never a good time for frequent updates. I try to balance it all out�family, doctor�s appointments, job, taking care of John daily, finding time for Andrew (which I don�t do well), and the journal updates�which one gets eliminated when needed? I should be working now but when I saw the date on the journal, I could hear Jerry B. saying �look at the date of your last entry!� Thanks Jerry for allowing me to hear voices in my head. :-) Definitely the major negative to waiting to update is using my memory and my brain is on overload.

John is on the cruise. YAHOO! It was interesting to get there. John did not have a good week last week. He spent the majority of the time on the couch in pain. The doctors increased his pain medicines and he slept all the time and woke up in pain. Luckily I work from home so he would yell when he needed something and I would get it for him. It was too painful to walk. I don�t know how many times I asked him if going on the cruise was a good idea and he kept saying yes. Finally on Thursday, I asked my mom to make sure there were wheelchairs available at the airport and on the cruise. She was able to have wheelchairs ready for him at airports but we would to rent a wheelchair and transport it to the cruise ship. I passed on the shipping of a rented wheelchair and had John take his crutches for the cruise ship.

John was taking a friend with him on the cruise. On Thursday afternoon, we found out she had mono. By Thursday night, it was decided there was no way she would be able to go and canceled her trip. On Friday, we were scrambling to find someone who had a passport and the availability to take the next week off. At 4:30 pm, Louise (Ned�s sister) was able to confirm she could go. YEA!!!! Louise is around John a lot so she gets the whole pain medicine and wound care issues. Louise was hurrying to get ready in less than 24 hours for a 7 day Caribbean cruise!!

Friday morning John had an appointment with the radiation doctor. She measured his leg and is very pleased with how much the size has decreased and how the wound is healing. She commented the leg looks like a calf again. She measured the hip tumors and could not find one of them. We will watch the tumor in his neck; they won�t hit it with radiation until it becomes a problem. John is back on the chemo pills and hopefully that will slow down the growth. The doctor wanted to make sure we understood John will continue to get tumors and we need to consider a more all over procedure to help him (like chemo). We can�t do more powerful chemo until the wound is healed.

Scott and Leslie Reed gave John a LiveStrong cap signed by Lance Armstrong. Very cool. We had a wonderful visit with them. You may have read some of Scott�s journal entries. He writes amazing, inspirational entries. Thank you Scott and Leslie.

Kathy Zimmerman has brought us dinner last week then showed up with bags of groceries when she picked up her dishes. It was so generous and thoughtful. Thank you Kathy and Chris.

The Olsens brought us dinner Saturday. It was wonderful. We played cards and laughed and laughed and laughed. We are very fortunate to have such thoughtful friends. Thank you so much.

We continue to struggle with Andrew. I believe it�s directly related to what we are going through with John but I�m sure there are the typical teenager hormones triggering some of it. This will be my week to focus on him and find the help he needs. What is that saying??�.God doesn�t give you more than you can handle�I have a lot to say about that. I am tapped out.

Thank you to everyone for your support. I don�t think I�ve ever cried as much as I have recently. Thank you for the hugs, the phone calls, the e-mails, facebook messages. It never fails I think I am doing better then boom the tears hit. Everyone has allowed them to flow and provide comfort. Even though I have not responded to everyone, I am very touched by your words.

John returns from his trip Sunday night. We know he made it to the ship (he text Ned). I don�t know how the flying went or how he is doing overall. I was a stressed-out basket case on Saturday morning packing his medicines. I had a hair appointment that afternoon and the hair dresser asked if I would like a glass of wine. Gads, it must have been obvious. I know Louise and my parents will take good care of John.

Whenever you think your life sucks, you find someone else who has it worse. http://www.meandmyzacks.blogspot.com/
Life sure throws wicked stuff to handle.

Tuesday, March 3, 2009

Good news today. Yahoo!!

Dr. Turker (orthopedic) was very pleased with how the leg mass is shrinking. He said the wound looks better now than any other time he has seen it. It does need to heal and he is unsure how successful the healing process will be but we'll just take each day and today is good. We will start doing the wet/dry bandage changes again. A sign we are back to the healing process. The wound still is large but it's not the grand canyon.

Dr. Raj (radiation doctor) was so pleased with the results that she came out to find me in the waiting room. She expected the smaller tumor to shrink, which it has, but she didn't expect to see the larger mass to respond so quickly. She want to analyze the results a week sooner so we will see her on Friday. Today and tomorrow John has radiation on the other smaller masses in his hip area.

With all this, I think John will be able to do what he's been dreaming about...a cruise with my parents. My mom planned this in January and there have been so many significant setbacks that no one was sure if it was going to take place. The original cruise date was Feb. 15 and it was changed to March 14 due to the wound infection. No one expected the leukemia tumor to grow so rapidly. The doctors are all doing what they can to make sure the cruise does happen. Today Dr. Turker told him it was ok to go.

Sunday, March 1, 2009

Things have settled down a bit...I'm almost afraid to even write that. It doesn't take much for everything to go from calm to crazy.

John went to OSU from Friday until today. He felt better and commented today the hip mass has shrunk. YEA! The radiation doctor wanted to meet with John and I after radiation on Friday. I was a bit nervous what she may tell us since they took pictures of hip area..maybe there were more masses than John could feel. She didn't say anything about the CT scan; she wanted to make sure we understand that the radiation is not a cure but a way to keep John comfortable as long as possible. How many times do we get to hear this? She did say with the smaller masses like in the hip area that they typically "melt" in a couple days.

The leg will take longer to show any effect from radiation. She wants to give it two weeks then evaluate. John showed me the area today (he pretty much takes care of it himself now, like changing the dressing). He was concerned about the skin dying but I think it's the leukemia infected skin. Now the hole is widening since the skin is dying off. John wasn't pleased to understand the hole would get wider. It will hopefully get smaller as whole when the swelling decreases. The wound is not meaty red anymore either. I don't know what to think of that. I am concerned about infection. He will see the general surgeon tomorrow.

We are blessed to be supported by so many wonderful people in Wilsonville. Ned and I went out on Friday night and were totally surrounded by friends who created an environment of laughter. Priceless and needed.

Thank you so much to everyone's support. Thank you for prayers, e-mails, and guestbook entries. This journey has been going on for almost five years and we've always felt the support.

Ned has been working on youth football stuff this weekend. Registration has officially started. Didn't it just end? :-)

Andrew is doing fairly well. Since he posted it on his facebook, I feel like I have some leadway to talk about him last week. He was suspended from school for a day then had in-house suspension for a day. It was the icing on cake for my emtional down spiral last week. He did something inappropriate as a joke and paid the price for it. It's over and he gets it.

I am glad last week is the past.

Friday, February 27, 2009

I keep thinking we'll get a break...

On the way to radiation yesterday, Johnathon was in extreme pain. He has a mass in his hip area and it is creating intense pain. It was a bad a while back then got better. Well, it hit harder than ever yesterday morning. We had to go to North Portland and we were in a bit of traffic. Every time I slowed down, John withered in pain. When we got the clinic, he was barely able to walk in. I suggested he ask the doctor if they could zap that one. Initially, they didn't want to since they weren't bothering him and they wanted to see how the leg reacted. While John was getting the lower leg radiated, I spoke to Dr. Lamkin. I think there may be a relationship with the chemo pill and the hip pain. It got better when he started taking it. John had to stop taking it during the radiation. Dr. Lamkin said it wasn't an option to put him back on the chemo pill but we should talk to the radiation doctor to see if they could hit the hip mass. He said a lot changed in 24 hours and she may reconsider her decision not to hit it.

The radiation doctor is very cool (in fact the entire clinic is unbelievable; everyone there is very friendly and helpful). She met with John and me after they radiated the lower leg and agreed to zap the hip. We had to schedule a CT scan then the radiation. She didn't know how fast they could do that and it may be early next week. She worked miracles. John had the CT scan within 30 minutes and was worked in for radiation at noon. I think the radiation techs allowed John to be scheduled during their lunch time.

In the middle of all this, I broke down. I am definitely on the verge of tears all the time; seeing John is so much pain is horrible. Ned immediately came to the clinic to lend support. I've allowed the steel drum around my emotions to crack and I am having a hard time getting it sealed again.

John is doing relatively well. The pain of course sucks and he is tired of being home all the time. We are looking into classes at Clackamas Community College for spring term. It's something positive for him to focus on.

John will meet with a surgeon on Monday. The doctors want everything ready to rock and roll when it's time to do something (whatever it is because right now, we don't know). I've been impressed with all the "adult" Kaiser doctors. We've had limited exposure to them since John has been considered pediatrics. You can tell they are ready to move mountains to help John and they are all talking amongst each other so no one is out of the loop.

As Murphy's Law goes, this morning my dryer broke. Deep breath...

Tuesday, February 24, 2009

Today wasn't any easier and now I have John requesting that I quit updating the site. I don't know what exactly is going on except he wants to enjoy life without cancer and maybe that is hard to do when people know so much of your life.

Here is the quick and the dirty version. We saw a plastic surgeon this morning who immediately brought in a surgeon who specializes in oncology (??). He recommended they do not do surgery because it would only make a bigger mess of the leg. The doctor feels there leukemia cells all over (including the skin)in that area and by removing the mass, it won't stop the problem; the leg will not heal and we'll end up with a bigger hole. We heard the word amputation several times (as we have heard yesterday). This is only a possibility and they will do what they can to save the leg. We were sent to radiation oncology in North Portland (we were in Sunnyside, East Portland) and the doctor there was surpised at how big the mass is with an open hole. The leg impressed everyone today. She said she would like to hit the mass with full radiation but that would affect the healing. She spoke with Dr. Lamkin, Dr. Turker and the plastic surgeon and it was decided to try a lower dose radiation in hopes the mass will shrink so that either it can be hit with full radiation and/or have surgery. It doesn't sound like a definite "it will work" but it does appear to be our only option at this time. It will take two weeks to know the effects of the radiation treatments. He will have a radiation treatment on Thursday morning and Friday morning.

Please pray for Rob Sammartino's family. He passed away this morning after a brave battle with leukemia. He had a wonderful attitude about life.

CANCER IS AN UGLY, UGLY BEAST!

Monday, February 23, 2009

Ned took John to both of his appointments today (he has Monday's off and I am at a client's all day) so my details are a bit sketchy. However, the big picture sucks.

Dr. Lamkin didn't say very much positive. John left the appointment upset. John feels Dr. Lamkin should have paid attention to the infection when John mentioned it in early January. He also feels they should have taken the mass out in November. Dr. Lamkin basically said there isn't much he can do to help John right now while he has the open wound on his leg.

Dr. Turker believes the wound will not heal anymore and he thinks the area around the wound grew since Friday. The skin is dying around the wound due to the mass underneath. Dr. Turker thinks John needs surgery as soon as possible, which means removing most of John's calf muscle. John has to see a plastic surgeon and we already have an appointment for tomorrow morning. When John called me with the appointment time, his voice sounded better than I expected. He seems to be in fairly good spirits tonight.

John had fun at OSU. His leg was hurting so he wasn't able to go out and do all that he wanted. His friends hung out with him and he enjoyed time away from home.

Sunday, February 22, 2009

Thanks Kaitlyn for your guestbook entries and pain medicine suggestion. John is already on the patch.

Andrew did well yesterday. He ended up with 6th place but he did well on both matches. For the last match, he made it through all 3 rounds and only lost by a couple points. Being a freshman wrestling at varsity heavy weight, there is a huge difference in muscle development with some of his opponents. He would wrestle seniors who look like they should be in weight lifting competitions. It's been a good experience and we are extremely proud of him. He may start freestyle wrestling this spring. He hasn't decided if he will participate in track or Lacrosse. He is leaning towards neither and focusing on weight room. We'll see. As long as he keeps involved in some type of physical activity, it's fine.

No word from John this weekend so hopefully all is going well. I pray the chemo pills will do something and his masses will shrink or go away.

John had an appointment at the orthopedic clinic on Friday. Ned took the day off to take him; I needed a break. I feel bad because John doesn't get a break. They needed to change the wound vac dressing and they couldn't get the wound to stop bleeding. Once the bleeding stopped, they decided to not put the wound vac back on since John wanted to go to OSU. John was told not the change the dressing unless he had too. The swelling of the area around the wound isn't allowing the blood vessels to close and stop the bleeding. I don't know what the doctors are thinking. I believe this is unique.

John has an oncology and orthopedic appointment on Monday.

Friday, February 20, 2009

Saturday Update:

John is at OSU visiting. He decided to forego additional pain medicine so he could get out of the house. I worry about his decision physically but mentally he needed it. I hope he is able to have a great time and get the mental boost he needs.

Andrew will place at least 6th in districts! He wrestles today to figure out his exact placement but 6th will be the worst. I asked the coach yesterday what it takes to letter in wrestling and he said Andrew has lettered. It's nice to have good news.

In the meantime, we are taking one day at a time. I am emotionally raw. It doesn't take much for me to breakdown and I try so hard not too. I've been able to keep it together relatively well for five years but the strength has been zapped. The reality is sometimes too much. I don't understand it and I know I am not the first parent to go through something like this. It sucks and I would do anything to change it. It seems like a nightmare; there's no way we are experiencing this. I know I am cocooning and I appreciate all those who have reached out. I don't know what any of us need right now....well, I know what we want but only God can provide that.

Friday:

Where do I start? First, I am sorry for not updating sooner. I haven�t had the energy or the heart to do it. It�s been a rough couple weeks.

John hasn�t been doing very well; he is in a lot of pain. He has more masses. We don�t know what exactly is creating all the havoc but we�ve been seeing the oncologist and orthopedic (for leg wound) every week and increasing pain medicines with each visit. The leg has been very painful but the back pain has passed the leg pain. We don�t know why. His left hip is also very painful (at times at a 8 on a scale 1 to 10 being the highest�while on pain medicines). We don�t know if there are masses we can�t see or if it�s from walking funny with the injured leg or if the fake hip has failed or if the infection is in the hip (found out that lovely news last week). According to Dr. Turker, the fake hips don�t handle walking differently very well. John pretty much lives on the couch and he is definitely losing some of his mental strength. He is very frustrated and scared. We started back on low dose chemo pills. Dr. Turker had a wound vac put on the leg this week. It is suppose to help the wound heal faster. However, one side of the wound is very sensitive and John believes it�s a mass. The area is hard. It just feels its one thing then another and can�t get on top of any of it.

Andrew woke up with a rash two weeks ago. I took him to the doctors and she said it was part of his cold. She tested him for strep and it came back negative. I think the rash is getting worse, not better. He probably needs to go back to the doctor.

The good news is Andrew is wrestling varsity. The varsity player was injured (major bummer for him). Today is districts at Wilsonville High School. I don�t know how many times he needed to wrestle to letter but I hope he did enough. The rash was cleared by the doctor so he can wrestle with it.

I know there is more to write but my mind is blanking out. I wanted to get something out there so you all know what is going on. My lack of writing wasn�t no new is good news this time. This is hell.

Saturday, January 31, 2009

11:30 am - John's been discharged from hospital!!! YEA!!!!

Thursday, January 29, 2009

John is still in hospital. He won't be discharged until the infection is identified. The dressing on the wound has to be changed twice a day and John says it is very painful. Nurse Tina thought we would be doing this for a week or two. I am not looking forward to changing it. It looks nasty. I added a couple pictures. Warning...it's nasty...really.

John is doing fairly well overall. He is bored. Bri and Tony have visited the last two evenings so I went home. John stays up late hanging out with the nurses. I've told him to call me when he wakes up so I can be home with Andrew and work. I was able to put food in the crock pot yesterday so the boys had dinner ready. I am definitely starting to feel the effects of balancing hospital, family, and work. It's ok though. Ultimately John will be fine. We can deal with this. I just wish it wasn't so painful for him. I know he is hating it.

Tuesday, January 27, 2009

4:30 pm - Sorry for the delay. John's surgery went well. We never spoke to the surgeon afterwards so I don't know exactly what they saw. However, John is feeling better. The doctor said once the fluid is removed, the pain would be better. He now has a open wound so it can drain. We will have to change his bandages twice a day. A new experience.

I don't know how much longer he will be at Doernbecher's. They still need to figure out what type of infection this is and what antibiotics are needed. If the antibiotic comes in pill form, the pain is under control, and the wound is draining appropriately, he will be discharged...who knows when that will be.

11:30 am - John was admitted last night. He has an infection in his calf near the leukemia mass. It got bad fast. Going to surgery now to get rid of the puss. He's on two high power antibiotic IVs. The area looks better today. His counts are up; however, the white cell count was higher than expected. Made me stop breathing but I tried to rationalize that the infection could cause this, not leukemia. The ER surgeon wasn't sure we were looking at infection or increased leukemia mass. Not a fun night. Things appear to be settling down. We have to wait to see what is seen during surgery and what grows from cultures to know what we are looking at for hospital stay. The OHSU ER has a new pediatrics wing...very nice. Would rather not know it was new. Even some of the ER nurses and doctors remembered us from previous visit. Nurse Tina took care of John last night. Great to see people we know...would rather do it on our terms though. Oh ya, it's snowing. Ugh. It's also finals week for Andrew so he is getting out of school earlier. Never a boring moment.

Tuesday, January 20, 2009

During Thursday's wrestling match, Andrew was pushed from behind and kicked his foot on something solid. He complained his toe hurt really bad and after having a hard time sleeping, I decided he probably should go to the doctor. I had John meet us there since he needed to get his blood work done...figuring I could take off midway through the appointment. John met up with us at x-ray and before Andrew goes in, he tells me his toe was curled up and purple after he hurt it and when he pulled the toe out, it felt better. I immediately told him that information should have been mentioned much sooner; maybe he did break his toe. He told me he would not wear a boot or anything else. At that point I told John to go home. I needed to be with Andrew when the doctor talked to him. Love the teenager years!

The doctor looked at the x-ray and immediately exclaimed, "You broke your toe well." Andrew questioned her since last time he was told he broke his ankle and found out later it wasn't. She said she was sure; there wasn't any gray on this one and showed Andrew the x-ray with the line on his toe. She buddy wrapped his toes, put a boot on, and told him to use crutches. She brought in crutches for a 5" 10" person (huh?) and I told her we have two pairs at home for his correct height. She then asked why he wasn't using them...I honestly thought he stubbed his toe but was worried with the weekend coming and the pain he already experienced (I didn�t know about the bent, purple toe). She also told him to take 600 mg Motrin three times a day for seven days and he needed to go to the fracture clinic. I kept thinking this is his toe...his toe...really? Andrew got home, took off the boot, ripped off the tape, and hasn't been using his crutches. I don't know what to think. Maybe the fracture clinic will tell us that he doesn't need all that and he can be cleared to wrestle. Andrew hasn�t complained about pain and he isn�t taking the Motrin.

At 5:45 Friday night, Kaiser calls. It's a doctor from the lab. She asks if I am John's mom and tells me his blood work came back abnormal. Ok. His white blood cells are off. Oh crap...heart stops. The white blood count is extremely low. OMG...tell me that right away! I respond he had chemo and we expect that. She asks if I can call the oncologist (um...it's after 5 pm on a FRIDAY!). I ask her what his platelets and hematocrit are. She tells me. They are ok. She then asks again if I can contact the oncologist. I try to explain to her we've been doing this for many years and I get it. Finally I ask her to fax me the information and I will take care of it...after my heart starts beating normally. I faxed to the clinic, in case anyone was still there. Otherwise, if he gets fever, we are calling the oncologist on call and heading to ER.

John started experiencing serious mouth pain yesterday. It's a side effect of chemo that he hasn't experienced very much of. I went to the grocery store last night and purchased yogurt, liquid yogurt, popsicles, and ice cream. I made jello and pudding. I want to keep him eating since I heard the salvia will help heal the mouth the fastest.

Kaiser denied acupuncture coverage. I am not surprised but was hoping they wouldn�t. John thought the acupuncture helped his hip pain. We�ll continue it. It is suppose to help his immune system. It certainly doesn�t hurt anything. John is also reading the book the naturopath recommended. He was very interested in what it had to say and I believe he will now start making better food choices. I don�t expect this to be the answer to curing him but maybe it will help his body fight better.

I don�t know what the mass is doing. I am afraid to ask. Nothing we would different right now anyway. Sometimes denial is needed to catch a breath

Wednesday, January 14, 2009

John had his Doernbecher's appointment today to check his blood levels. After multiple tries, it was determined John was dehydrated and would need to come back another time. We arrived at Doernbecher's at 10 and got out of there at 12:30 pm. Ugh.

John's mass appears to have gotten a little bigger. Not what we wanted to see. Hopefully we'll see it getting smaller soon...come on antibodies!!!!!

Sunday, January 11, 2009

John is doing much better. He felt better the next day. A nurse from Doernbecher's called Wednesday morning to see how John was doing. I told her that he had been sick all night and she asked if I had anti-nausea medicine...duh, I did. We had got it when being discharged from inpatient treatments...I didn't even think about it. Damn. I gave him one and by mid-afternoon, John was asking for food. Yea. He kept it down and he steadily got better. He says his stomach is still sensitive. Dr. Lamkin thought John's immune system would be suppressed sometime this week. John has an appointment with Dr. Lamkin on Wednesday and will have his liver functions tested since that is a side effect of the Myletarg and see where his immune system is.

John will have his first accupuncture treatment tomorrow. I requested Kaiser to pay for it but I am not holding my breath. The naturopath was supposed to research some medicines help John protect his body against the side effects of the Myeltarg. I haven't heard from her so I am assuming she will tell John tomorrow.

Andrew had a wrestling meet yesterday. Last Saturday, Ned and I were at the meet from 11:00 am to 5:00 pm and Andrew only wrestled twice (five byes!!!...I guess that's the hazards of heavy weight...not a lot of other wrestlers). Yesterday I decided I work a bit in the morning then go to the meet. As we are getting ready to walk out the door, we received a call that Andrew was done. Argh. Ned and I felt terrible.

Wednesday, January 7, 2009

Interesting day yesterday. Got there at 9 am and left at 5:15 pm. All went relatively well until we got to Wilsonville then John curled into a ball in so much head pain. We got home, he made it to the stairs and collapsed. I called Doernbechers and they told me to give him some heavy duty pain medicine. I did and he went to bed then a bit later, he starting getting sick. He was sick until 1 am this morning. I totally did not expect this and lost it last night. John doesn't want to be sick anymore. He wants to enjoy life. I kind of pushed for this treatment thinking it will be "easier" than past treatment and it could give him more time. Evidently antibody treatment is a type of chemo. I misjudged inpatient versus outpatient treatment. We haven't done outpatient infusion chemo treatments. I started getting it with all the precautions yesterday with administering it. They had to check his blood pressure every 15 minutes...hum...the IV bag had to be covered because the product was sensitive to light...hum...if the IV became loose we had to tell the nurse immediately because the fluid will eat his tissues...hum...chemo, chemo, chemo...

Monday, January 5, 2009

I know I suck at updating lately.

In summary fashion:

John had a good New Year's. He spent New Year's Eve with friends.

John had his naturopath appointment on Friday. I was expecting more. Basically got out of it that changing his diet could help and she recommended a book called Beating Cancer with Nutrition by Dr. Patrick Quillin. I am reading it now. John will start acupuncture next week. The naturpath will probably put him on a few pills to help support the good white blood cells and protect his kidneys. She first wants to research the antibody treatment to know what it affects and make sure her suggestions won't interfer. I didn't get the feeling we have a plan to fight the cancer. Maybe it's the naturopathic approach and I am used to the medical approach.

John will have his antibody treatment tomorrow morning. It's a couple hour infusion in the clinic.

I will write more in depth at another time.

Sunday, December 28, 2008

I hope everyone had a wonderful Christmas.

The snow is melting quickly. I thought for as much as we had, it would take much longer than it is. Our backyard looks like a lake.

Last night I was checking John's pill box and noticed his missed a dose of chemo. I commented about it to him and he told me it didn't make any difference because the mass is back. He found it a couple days ago but didn't want to ruin the holidays for us and he doesn't want his life to change. He doesn't want to be sick from treatments. He is having a blast hanging out with his friends. I'm not sure why we have a pattern of learning leukemia information on Fridays. I will call Dr. Lamkin on Monday. The mass is causing some pain and restriction. I keep thinking somehow, someway we will get a break...experience a miracle. I pray for the leukemia to go away and sometimes I think the only way my prayers will come true is when I lose Johnathon. I don't understand why we have to experience this and I doubt I ever will. No one should have to experience this. Cancer needs a cure....yesterday.

Wednesday, December 24, 2008

Dr. Rafferty, naturopath, called yesterday morning to reschedule Johnathon's appointment. She said he is a priority and she would get him in as soon as possible..which is Friday, January 2nd. I would like to get in sooner but I understand what a mess it must me to reschedule all the appointments during this storm.

It's snowing again. My mom and dad won't be joining us for Christmas; the roads are too bad to travel on. Louise will be here sometime today. She lives in North Portland, which could mean a long, slow drive. Chains are required for all freeways in Portland. Multnomah County announced a state of emergency yesterday; the city of Gresham has too many roads are impassable and emergency vehicles aren't able to get where they need too. Yesterday I-5 just past Wilsonville was closed for hours due to ice on the road. I heard Wilsonville was a mess with all the people waiting to get back on the freeway. The news stated there is less than 1% chance to have snowing falling on Christmas day and looks like tomorrow we will have it. Thank goodness John is not immune suppressed; I would be a wreck worrying about a fever and wondering how we would get to Doernbecher's in Porland.

John continues to do well. He has commented many times that he is not afraid of cancer and he is not afraid to die. He asked me why I am afraid of him dying and I couldn't answer. It's pretty simple. I don't want to experience life without him. I've had many people ask what I fear because John will be ok no matter what. I know that. I know he'll be fine; it's the impact it will make on everyone else and dealing with that.

John won't be going to OSU for winter term. We hope we can get him there spring term.

Have a Merry Christmas!

Monday, December 22, 2008

Unbelievable snow/ice storm! I've heard it's the worst (or best, depending on how you look at it) since the 1960's. It's good that school is out but bad that Christmas is around the corner and it's affecting so many people traveling.

John put chains on his truck and he's been getting around. I don't like him driving a lot but at least he can get out of the house a bit. Andrew has been snowboarding on hills in our neighborhood. Ned and I have been staying inside...oh, the sign of age! :-) Actually, Ned has beens shoveling snow...over and over and over.

Johnathon's naturopth appointment is tomorrow. I want to go if it's open; Ned disagrees. I don't want to miss it.

I tried to hit ice off of our trees today. Our birch is leaning way over but not enough for me to help it out. We've lost at least one bush, it snapped. It is VERY pretty but it's time for it to gooooooo.

I added new pictures.

Friday, December 19, 2008

Thank you for all your prayers, guestbook entries, e-mails, and phone calls. I am not able to return all phone calls; I haven't cried in a week but I know I am on the edge of losing it. I'm afraid a voice could set it off and with us all home bound with the weather, I am unable to hide the breakdown. John has mentioned it's harder to see Ned and I upset over hearing what Dr. Lamkin had to say. I need to be strong and it is so much harder this time. I am afraid I will have regrets of not doing something or not saying something. I don't want any regrets but I don't know what to do or say except that I love Johnathon and I wish I could take this all away. I am suppose to protect him and I can't.

I did make an appointment for John to see a naturopath. I figure it doesn't hurt and it could help. If we can make his body as strong as possible, maybe his body can take care of the leukemia. We know the leukemia came back different (less aggresive and in mass form) so the donor's marrow is doing something along with the prior radiation and chemo treatments. The naturopath is in a clinc that deals with cancer. We see her on December 24th. I hope the weather allows us to get there. John isn't convinced seeing a naturpath will do anything. We'll see what she has to say and go from there. Kaiser denied coverage because "medical literature has not found naturopathic medicine effective in the treatment of cancer". I hope to prove them wrong.

John is doing well. He is spending time with friends and seems to be enjoying life. He started lifting weights. He feels good, better than he's felt for a very long time. It's hard to realize there is a cancer inside his body somewhere. He looks good.

We have been hit with a winter storm. We've had snow, ice, snow...which is all very pretty but makes an impact on traveling. My car isn't equip for the snow so I pretty much stay home. John has driven me to appointments in town. He likes driving the truck; I would if I had too but since I don't, I'm ok being a passenger. :-)

I did something to my back. It hurt when John first found the mass then the pain took me down when we found out the mass was leukemia. Must be related to stress somehow. I feel for people with chronic back pain. It was horrible for a few days. I couldn't do anything. I'd wrap a couple gifts then go lay down. It's better now but still sore. I use the tens unit a lot and take pain relievers. I am nervous with tax season coming up that if I don't get it under control, I won't be able to handle long hours of sitting. Obviously I need to change something I am doing but I'm not sure what it is (besides dealing with stress).

Merry Christmas! Thank you for the Christmas cards!!! I love hearing how everyone is doing and seeing how much kids have grown!

Tuesday, December 9, 2008

1:45 pm - Life sucks.

Here's our choice...either go for a cure and have significant chance of John not surviving and slight chance of a cure, or go for maintenance and he could be around for a while (a while is totally unknown). We basically have until January to let Dr. Lamkin know. John will be on low dose chemo to hopefully keep the leukemia at bay until then.

Dr. Lamkin suggested we try a drug called Myletarg (spelling unknown). It's an antibiody which fights a certain characterisitic that John's leukemia has. Unfortunately, it will also attack good blood cells and could damage the liver. If we had any reservation of trying for a second bone marrow transplant, they would not use it. John does not want a second transplant. Dr. Lamkin said it could give John a long time yet....but he doesn't know. The drug is administered outpatient as an infusion.

After the appointment, Ned, I and John went to Bamboo Room (??) for a hearty meal of Hawaiian food. We received two phones calls while we were there that Andrew was seen walking on Wilsonville Road (LOVE Wilsonville!). Coach Nics called and said he picked him up and took him home. Thanks Coach Nics. When we got home, Andrew said he couldn't take being at school anymore. All he could think about is that we are starting this cancer journey once again. Damn cancer for affecting him too. I know I haven't been the mom I should have been to him because of being gone so much and focusing on Johnathon.

John definitely handled the news better than Ned and I. I keep thinking I am facing life without John and I don't know how I could handle that. I want so badly to take the cancer out of him and put it in me. Let me fight it. Let me handle it. Let him live.

Monday, December 8, 2008

John's appointment is tomorrow at 9:30 am. We are doing ok. John has been incredibly strong. I am doing better...at least I feel like I can breath. None of us really know what to expect tomorrow except it won't be easy. We know we are fighting a cancer that has survived through the "big guns" chemo, radiation, and bone marrow transplant.

Thursday, December 4, 2008

1:15 pm - Dr. Lamkin called. When I saw OHSU on the caller ID, I wanted ignore the phone. John had just left to go to Doernbecher's to get his prescription. Dr. Lamkin asked if he could speak to John and I. Not a good sign. It is leukemia...same type as the other masses. Dr. Lamkin doesn't know if it's a new growth or one that didn't quite go away. He wanted to know if John had more masses anywhere and I don't know. Dr. Lamkin asked if John had his cell phone so he could call him and I asked if he would talk to him when he arrives at Doernbecher's. I don't want John getting this news while driving. It is the news we expected but prayed it wasn't. We have an appointment Tuesday afternoon to figure out the next step. Dr. Lamkin said it will be "a big decision". He doesn't think doing more the same chemo is a good idea when it didn't work and he doesn't think a bone marrow transplant is an option with how hard the first transplant was.

Damn Cancer, Go AWAY! Leave my son alone....

11:00 am - No news. I am wondering now if I should contact Dr. Lamkin. The orthopedic surgeon (Dr. Renwick) who removed the mass wasn't our normal surgeon; Dr. Turker is gone for two weeks. I don't know if the results were sent to him and since he isn't in, they are not being reviewed. However, I would assume Dr. Lamkin would also receive a copy of the results. Dr. Renwick said to contact his office by Monday if we didn't hear anything...well, it's well beyond Monday. In the spring, it took a week and half to get the results of the masses so maybe the results aren't in. Every time the phone rings, my heart stops. John requested a medication refill on Tuesday and Dr. Lamkin completed the paperwork yesterday. I figure if he hasn't thought about John's results then refilling a presciption yesterday may get him curious and he will look. John commented yesterday that his surgery cut is bleeding and the blood is thin. Of course, this panics me because thin blood could be low platelets...low platelets can be caused by leukemia cells in the blood. I keep telling myself to stop thinking and just wait. There's nothing I can do to change it right now.

My mom is out of the hospital and all tests show her healthy. Great news but frustrating to not understand the painful attacks.

Andrew had a doctor's appointment today. He weighed in at 237 pounds. The doctor is concerned about his weight gain and has ordered blood tests. Ugh. She wants to check his cholesterol and sugar level. I had a chat with Andrew about diabetes and what he needs to do now to prevent developing it. Since John went through a period of being a diabetic, Andrew understands enough.

Ned put up our outside lights on Sunday. It's so nice to see them up...brings such a feeling of peace, hope, and excitement.

Thank you for all your prayers and words of support.

Wednesday, December 3, 2008

9:00 am - No news. I'm trying to not read anything into it...like it is leukemia and it's taken a while to determine the type. Hopefully they can't find anything and they are doing additional tests to make sure...

Monday, December 1, 2008

No news. We can breath this evening. I wanted to take the phone "off the hook" this morning(can you do that anymore with cordless phones...ha,ha!).

My mom was admitted to the hospital last night. The doctors are unable to determine why she is having frequent painful attacks. The doctors are concerned about her heart and so far all tests have been normal. Whew. I hope they find out what is going on soon and it's an easy fix.

I made a huge jump into the internet networking world today and joined facebook. Oh my. :-) If you have a facebook page, let me know. I'm not sure how often I will keep up with it but I've heard people really like it.

Until tomorrow morning when the phone can ring again...

Tuesday, November 25, 2008

6:00 pm - We are home. We arrived at Doernbecher's at 11 and John's surgery didn't start until 2:30...a bit later than 1 pm. John was starving; he hadn't eaten or drank anything since midnight.

Dr. Renwick was the surgeon (Dr. Turker's partner). We have met him before and I beleive he may have been a part of past hip surgeries. He told us they were planning to take out the entire mass if they could and John would be under a general, not local.

Since John was a last minute add-in, they didn't have all his historical data. One nurse came in and asked what John's injury was. Boy, do I wish it was an injury.

The nurse wheeled John away to surgery and Ned and I did our typical run to the cafeteria. We were both starving too. The surgery waiting area used to have beepers when you left the surgery area but since so many people took them and they were expensive to replace, they don't use them anymore. She asked for my cell number and I hesitated to go to the cafeteria...what if my cell didn't work there? Of course I know it does with all the experiences we've had so far but just having something change, can put you into a temporary panic mode.

While we were in the waiting room, a family (mom, dad, and grandpa) were crying...the hard, deep down crying. I could feel their pain even though I don't know what their news was. It put tears into my eyes. Another family was having a discussion with an oncologist we know and I could hear "radiation again tomorrow, pic line being placed now, chemo starts on Monday". I can't wait for families to not have to endure pain and journeys like this. It sucks.

John's surgery took just over an hour. Dr. Renwick said it went well. They took the entire mass. He said they took out a football shape and John may have an indention where they cut it out. Dr. Renwich did not offer his opinion of what he saw and we did not ask. He told us we could call him if we haven't heard anything by Monday and both Ned and I said we doubt we'd call. We aren't that anxious to know.

I can't express what it's been like the last few days. The pain has been sharp and difficult to deal with. I wake up in the mornings unable to breath..gasping for air. I want to be strong for John and it's getting so much harder. I keep wondering how much more we can endure but I know we will take on each obstacle the best we can.

Thank you for all your prayers and support. I appreciate the phone calls, e-mails, and guestbook entries. Sorry I haven't responded to everyone. It's just hard right now.

Monday, November 24, 2008

2:40 pm - John's biopsy is scheduled for tomorrow at 1 pm. We have to be at Doernbecher's at 11 am. I feel like we've been there, done this...why doesn't this damn cancer leave him alone? I wish I could take it away. I would much rather fight the beast myself than him. I would do anything to change places.

Morning update: I received a call this morning from Doernbecher's. They wanted to cancel today's appointment because the chemo had not arrived. I told the nurse that John needed to see Dr. Lamkin because he has a mass. She replied, "oh". Man, my gut hurts.

Ned took John; I am at a client's. I have gone back and forth whether I should go or not. I didn't think Dr. Lamkin would have any answers and if we did chemo then I couldn't work out of the office the rest of the week. I hate having to make decisions like this. I am lucky I have flexibilty so I can be with John as much as I do. However, work is nothing compared to John's life. I don't want to look back and regret not doing more for him.

Dr. Lamkin said he doesn't want to assume. Chemo treatments are cancelled and John will have a biopsy sometime this week. I asked Ned why they would cancel chemo since it did do something. Ned said if it's back then that chemo didn't work. I am not ready to concede it didn't work; it did something. The masses went away for a while. I am so scared.

Andrew went to my parents for the week. He said he needed a break. I asked him about being gone for Thanksgiving and he said I get him every other day. True. My mom is going grocery shopping today to stock up on food. :-)

Ned's sister, Louise, will join us for Thanksgiving. It will be quiet. Hopefully we'll have a remission reason to be very thankful.

Saturday, November 22, 2008

Life can throw some fast balls when you aren't expecting it. Last night John found a mass on his calf. It's near where another mass was earlier this year and it looks/feels similar to the other mass. We are devestated...shocked. We knew we were fighting a hard battle but I think we all expected to not see it so soon since he's gotten this far. We haven't decided what we are going to do (call Doernbecher's today or wait until Monday). John is still sleeping; when he wakes up, we'll assess how much it's grown. My mind is spinning...my heart is hurting.

Wednesday, November 19, 2008

3:25 pm: John did not get admitted. The clinic was very busy today so it took a while to see Dr. Lamkin. Dr. Lamkin talked to a lot of doctors and there are good and bad to every decision. However, he doesn�t feel comfortable going forward with the same chemo treatment as John has had but he also doesn�t want to quit yet. He wants to do one or two more revised chemo treatments. The prior chemo treatments have been ARA-C (Cytarabine) and Clofarabine. Clofarabine is the new chemo (it�s been out for approximately one year). Since John had ARA-C prior to relapse and Clofarabine has shown effectiveness by itself, he wants to do just Clofarabine. It won�t take John�s counts down as far and he can do it as outpatient. Sounds like a wonderful compromise to me. We are doing something but not as much. John will have two-hour daily infusions for five days next week (Monday, Tuesday, Wednesday, Thursday (Happy Thanksgiving!), and Friday). John�s counts will go down for approximately four weeks and if he gets a fever, he will be admitted. Dr. Lamkin said it�s not near as harsh of a treatment and should go smoother. However, it�s chemo�it�s toxic�there are always risk. John isn�t quite sure he wants to do it; Ned and I are comfortable with it. John reminds us it�s not our bodies being torn down. I know John is tired of chemo but this is the last one. Let�s kick leukemia�s ass for one last time.

Since one chemo treatment will take five weeks, there won�t be enough time for a second treatment prior to winter term at OSU. Going to college is very important to John. I want to do what we can for permanent remission with the knowledge we are dealing with a lot of unknowns. There isn�t a protocol we are following and his odds aren�t great. I don�t want any regrets. John will be an OSU student this coming January.

John is going to watch Portland State University football game this Saturday with the Beltz family. Jordan Beltz, who graduated with John and played football with John from 4th to 8th grade, is playing for the PSU Vikings!!! Attaway Jordan!!

8:44 am: I couldn't find the appointment time reminder slip for Johnathon's appointment today and typically the clinic calls the day before the appointment so I figured we'd get reminder call. I was at a client's for 10 hours yesterday so I missed the reminder call. When I got home, I found out there wasn't one. I called first thing this morning (Doernbecher oncology clinic opens at 8:30 am) and John's appointment is at 9:30 am. Yes, John is in sonic mode getting ready�he doesn�t get up until afternoon typically. The clinic receptionist also told me the admit (won�t be admitted) has been canceled. I guess Dr. Lamkin already made up his mind. I have mixed feelings. I was definitely thinking we weren't going to do it but it's different when it's reality.

Jim mentioned yesterday that my explanation of John's lung growth was a bit confusing. I don't know the name of the growth...it was a nice long medical term. The growth is considered a contaminant from the lab since only one of two lung samples grew something (and it grew after a week). Hence, it isn't an actual growth inside of John.

Heading out the door�

Monday, November 17, 2008

As you can imagine, lots of emotions lately. We are to the point of making a choice of whether we proceed with one more chemo treatment or call it done. Not an easy decision and one I�ve tried to not think about.

Two weeks ago John had his CT scan of his chest. After the scan, he took off for a long weekend at Boise State to stay with friends. He had a blast. It was good for all of us. He was able to get away and I found we were able to relax a bit too. I think you�re always on alert status even when things should be calm between treatments. John only text once to see if he could buy something so I think he was enjoying time away.

Last week we met with Dr. Lamkin. He asked if we heard the biopsy grew something. We hadn�t. He left the room to get the name of the organism and when he returned, he stated �John you did it again.� Both John and I looked at each other, entirely puzzled by the statement. John�s culture grew something he never heard of, same with the infectious disease doctor. While we were there, the infectious disease doctor called the lab. The growth is considered a contaminant because two samples were tested and only one sample grew something. The CT scan did show a significant decrease in the lung nodules. Dr. Lamkin is confident that the nodules are fungus. After that statement, I figured we were done. It is what we were told prior to this appointment�.however, whenever I think I�m getting it, I find out I don�t. Dr. Lamkin would like to do one more treatment. John is scheduled to start chemo on Wednesday with the right to cancel. We are totally depending on him for this decision. Dr. Lamkin is unsure what the next step should be. If only the biopsy would have had a nodule so we knew what was in John�s lungs. On the way home, John announced he doesn�t want to do anymore treatments. He is scared after the last treatment. I am too. What if we go for one more and John doesn�t survive? But then what if we don�t and that one more was the final remission piece? It�s so hard making decisions knowing your child�s life is in the balance. I can�t imagine life without John and I have to for decision making. It sucks. I asked John to wait until Wednesday to make his final decision. At this time, I think we are leaning towards no more treatments. Let John enjoy life.

We had a wonderful opportunity to go to the beach last weekend. The Miller family offered us their beach house to stay at and it was perfect. The weather was sweatshirt and no rain gear! We got some great pictures of the boys. I will forever have memories of watching Andrew and Johnathon throwing a football on the beach, laughing. Priceless.
Unfortunately, the fun came to a quick end for me. I got the flu Sunday night. Thank goodness it waited until we returned. I am not feeling great this evening but feeling better. I am doing whatever I can to stay away from John. Ugh.

Andrew has started wrestling and meets will start soon. I went to the first Lacrosse meeting (starts in Feb.). Andrew has wanted to play Lacrosse since last season (I didn�t sign him up�lost major mom points on that one!). The school only supplies the helmet and jersey so we need to go get everything else. I spoke to the coach after the meeting to learn the lingo and be somewhat knowledgeable when we go purchase equipment. Positions make a difference and I need to learn them quickly! I am glad Andrew has decided to continue playing sports. It�s been a learning experience so far in high school. The biggest lesson is how many people don�t realize Andrew has a disability or understand it and my inability to protect him.

John has been OFFICIALLY accepted to Oregon State University! YEA!

I got an unexpected call this weekend from a friend who I met when Ned was in the Army. It�s been years since I spoke to her and it was such an awesome surprise!!!

Ned was awarded the Volunteer of the Year from Wilsonville Youth Sports at their annual Gold Medal Awards banquet. Very cool!!

I added pictures from the beach. My two requests for my birthday were to go to the beach and to get pictures of the boys. Andrew hates getting his picture taken and I knew Ned would make sure it got done if it was a gift request. :-)

Even in the hardest times, there are many good times.

Wednesday, October 29, 2008

Dang. Can�t believe it�s been almost two weeks since the last update. I needed a break and one way I get that is too not update. Sometimes the mind needs to believe cancer isn�t really the demon that is looking straight at you in the face.

It�s been relatively quiet�for all of you that know this household, quiet doesn�t really happen. As for the medical arena, it has been quiet which has been absolutely wonderful. John had to go to Doernbecher�s today to get prescription (he sort of spilled pop on his week worth�s of pills�argh!!). It was a good day for him. We (I) had a list of things for him to do�Doernbechers, Kaiser to get the prescription filled, DEQ for his truck then to the nursery to get me plants. Oh, how he loved going to the nursery�NOT! Oh well, our nice weather will be ending on Friday so I wanted to get some yard work done. I think I got most the yard work done today�planted the new plants, bulbs, moved plants, and trimmed bushes. It feels GREAT to work out in the yard..in the sun�in October!! Wow!

Ready for a laugh? A week ago Saturday, Ned forgot to bring water for his football team. John called me on his way home and I got the water ready. I filled up six small water bottles and the 5 gallon Igloo container. John and I both lift the 5 gallon container into the back of my SUV and off he went. He got out of our neighborhood and the container fell over. He calls. There is water coming out of the back of my car and his feet are wet from the water coming up to the driver�s side. I took a deep breath, told him to grab towels, and get out to the game. When he arrives, Ned tells him he didn�t need the 5 gallon container�he hasn�t used it all season. I�m so glad I am the observant wife.

Our driveway has a nice slope to it so on Sunday I moved my car to the steepest part�water dripped out of inside my car onto my tire. OMG. John used the shop vac and vacuumed as much water as he could. The �service engine soon� light came on. Ned, I, and John thought it would be odd to have the water associated with the engine. Ned took my car to Lance�s on Monday and sure enough it was a result of the water. The water had affected my driver�s seat electronics. Lance fixed it.

On Tuesday, I took my car to a professional carpet cleaner and he told me I had too much water in my carpet. If I didn�t pull the carpet, I would have mold and rust. I can�t have mold with John�not that I would ever want mold. I took the car to Lance�s and asked how much it would cost to have them remove all my seats. Lance said I could do it and told me how to disconnect the air bags in my front seats. I had no idea I had air bags in my front seats. I am a bit overwhelmed. Ned is working quite a bit and every free minute is consumed with football. I call Mark Biondi who works on cars and he doesn�t hesitate to come over and help out. My carpet was so wet that when he took it out, it dripped. We even had to take out the center console. My car was stripped to its metal inside. Mark spent over 3 hours stripping my car. For the next couple days, I would absorb puddles inside the car and I would pull out my car carpet from inside the garage to outside in the sun. Thank goodness we had good weather. As of yesterday, my car is back. Mark worked several hours last night putting it all back. Thank you Mark. I don�t know what I would have done.

Dr. Turker called last Friday and Andrew�s ankles are good. He said he was surprised to see they weren�t fused with how inflexible Andrew�s ankles are. I was surprised because I had assumed the CT was more of a formality than a possibility. He wants Andrew to do stretches and if he continues to have pain then he will go to physical therapy. I asked if Andrew growing so fast could be the reason for the ankle pain and Dr. Turker said it could but that�s the last resort answer. I looked at Andrew�s growth chart today and he grew 7 inches in the last two years.

Andrew�s last freshman football game is tomorrow at Wilsonville High School. Hard to believe he is done with freshman football. Ned�s team is also done. Football is winding down. It�s an odd feeling with so much energy/time going towards football. Andrew isn�t sure he will wrestle this year. We�ll get into the holidays then tax season will be here. Ugh. In the meantime, Ned and I are involved with youth wrestling�it will start in a couple weeks. We don�t do a lot during the season, it�s mostly stuff now like registrations.

I wrote letters to Oregon State University to let them know John would like to attend winter term. Someone called and said it�s a simple process since he was accepted for fall term. All I had to was go online. I did and it�s done. John needs to talk to OSU and figure out his class schedule. It�s very exciting to hope he will get to attend OSU. We haven�t decided it living in a dorm will be the best choice for him. He may be coming off another round of chemo and it takes months for his body to completely recover.

John will going to OSU this weekend and fly to Boise State the following weekend. He needs to get out of this house. He is a hermit again. He stays up until 3 or 4 am then sleeps all day. I think it may be easier to deal with not having his friends around if he sleeps during the daytime hours. I am very thankful Bri is in town. She has been a wonderful friend. She even went with him today to do errands.

John gets to vote this year. YAHOO! We�ve been discussing the issues and will vote together this weekend. What an honor to have the right to vote and be able to share this privilege. It will be interesting to see if his views differ from Ned and I once he reads and discusses the issues.

Thursday, October 16, 2008

We had our �discuss the future� appointment today with Dr. Lamkin. I prayed for guidance. I know there aren�t answers as is typical with the cancer journey but this time we aren�t even working with good statistics.

My initial thoughts were to postpone the Bone Marrow Transplant until after John went to college for a quarter or two. He has commented many times that he wants to be at college, having the same experiences as his friends and how hard it is to not be at college. I thought by giving him some college experience it would continue his will to fight. Right now, life is not so much fun without something to strive towards. Since bone marrow transplant was the only way doctors thought he would get to permanent remission, I didn�t want to totally dismiss it. I want to do whatever it takes to keep my child alive. However, I also know he may not survive a bone marrow transplant and I didn�t want him to pass without having the college experience he so desires. I never told any of this to John.

On the way to Doernbecher�s, John said he doesn�t want a Bone Marrow Transplant. I just shook my head in acknowledgement. I don�t want to sway John at this point with his decision.

Dr. Lamkin came in the room, sat down, and took a deep breath (as I held mine). He said he is not totally convinced anymore that transplant is the best choice. He said he feels there is a significant chance John will not survive a transplant and depending on how the lungs look, it may not even be a choice anymore. He also said he has changed his mind on the effectiveness of the chemo treatments. He commented when people have a third relapse, they don�t make it as fair as John as in apparent remission. He believes this chemo is working but he doesn�t know if will be permanent. He originally said this would not cause permanent remission and now he isn�t sure of that statement. He said we could go with one or two more chemo treatments and see what happens. No one knows how many chemo treatments and what the chances of it working permanently. For AML, they use five chemo treatments; John has had three. If he relapses again, the cancer will be stronger and maybe then we look at transplant. Dr. Lamkin is impressed how well John feels and looks at this time. I told him my thoughts about college and Dr. Lamkin said he thought we were on the same page. We have decided to not go forward with a bone marrow transplant. We could change our minds but at this time, we will not. I feel peace with this decision.

John will get a chest CT scan in three weeks. If there are lung nodules, all treatments are done. If there aren�t nodules, we will discuss another round of chemo and then allow John to get strong to start winter term at Oregon State University. I asked Dr. Lamkin why there is concern about the fungal infection when he is on medicine and his immune system is coming back. He said once you have a fungal infection, you never fully get rid of it and it could come back when counts go down. I know from other�s experiences, fungal infections are deadly to immune suppressed kids. You don�t want to mess with it. I heard one parent state that the medicines just can�t get into all the lung tissue and you are unable to conquer.

I asked about the lung biopsy. The latest report is there was no nodule in the sample. The surgeon felt strongly he got it but the pathologists were not able to identify a nodule. Damn it. It would not make a difference of testing it a week later after initial diagnosis (fungal infection); it would make a difference of it growing and identifying the type. We know for sure there wasn�t any fungal disease in the sample they got�but there may not be nodule either. Argh.

John�s next appointment with Dr. Lamkin is in a month. We get a bit of a break. John is excited and scared. He told me he doesn�t want to die. We will do whatever we can to make that not happen. John told Dr. Lamkin they need the cancer cure now. Wouldn�t that be nice? I am glad today�s appointment is over.

Thanks for all the birthday wishes. My birthday was nice. It was sunny outside and I felt happy all day. No hospital, no doctor's appointments, and John felt pretty good. Ned asked what I wanted for my birthday and I told him for the family to get away. It looks like we may be able to do that with today's news. YEA!

This afternoon is Andrew's football game. A great way to spend the afternoon.

Enjoy Today!!!

Friday, October 10, 2008

John is being discharged tonight around 11 pm. Almost exactly three weeks to the hour when he was admitted. We are soooo excited. I can't wait to get him home. He will walk more and eat better.

John has been having problems with his left shoulder...same arm as the infection. His joint is not staying tight in the socket. They think it could be from the muscles atrophying and/or part of an old football injury. I don't recall John hurting his shoulder. PT taped his should yesterday to help it stay in and he's been doing exercises.

It was on and off for going home today. The new lab results came back negative. The radiologist is positive the nodules looked like fungal infection. If you can see the fungal infection then the body's healthy immune system can't take care of it. The doctors said the only way they could confirm a negative is another biopsy. Ned, I, and John all say no. I believe the doctors agree. Since John is on IV antifungal, they want him to continue. It was too late to set up home infusion to bring us IV medicine. It also means John's PIC is not coming out. John was not happy. The doctors must have discussed it some more because they came back saying John is going home after his IV medicines (late discharge but that's ok!), his PIC will come out, and they will prescribe antifungal tablets. I am frustrated about the unknown results of the biopsy but I am thrilled the results we receivied were all negative! John will be on the medicine for a month and then they will scan his lungs again to see if the nodules are gone. I don't think we'll ever really know if they were fungal.

We have a young boy as a neighbor. He can't be older than seven. Every time I walked by his room this week, he is without a parent He is crying now. I believe his mom may be here. I can't imagine leaving your child here alone. I know there are reasons why you may have too. It has to be incredibly hard on the parent but terrifying and lonely for the sick child. It's all I can to not go in there and cuddle him. Thank goodness for the great nurses here and the volunteers. There is so much more they have to do beyond taking care of the physical issues.

Andrew had a good game last night. Ned and I both went since John was doing well. Nice change from last week!! The weather sucked...wind, hail, and cold...but it was great to be there.

Andrew did not have school today. Ned was here from late morning. I was at home getting multiple updates this afternoon as it went from going home...not going home...to going home. Ned left from here to the varsity game and I came back up. Ned pretty much packed everything so the room is bare and feels more like a hospital room. We are ready to take off!!

It will be so nice to sleep tonight with out IV's beeping, constant IV infusion noise, nurses getting vitals, doctors making early rounds...heck, it may be too quiet!!!! :-)

Wednesday, October 8, 2008

AARRGGHH!!!! The doctors came by this morning with discouraging news. Apparently, pathology tested the outside of the lung sample with the puss, not the inside where the nodule should have been. The doctors don't know if there was or was not a nodule in the sample. The surgeon thought he got it. The doctors have requested patholgy to slice the lung sample and start testing it. What does this mean? We may not have the true results back and we may not get it. Can I scream??? There is no way John will do this procedure again. How can pathology not test the right section of the sample??? The doctor said if they are unable to get a result back from a nodule then John will be on antifungal medicine for a couple weeks. I just can't believe the risk we took for the this procedure and there was a mess up.

John's pain continues to be very uncomfortable. He is not willing to start switching from PCA to pill form for pain management. Until he does, he won't get discharged. He will be here for a few days yet. We will hit over three weeks for this hospital stay. I am hoping we will be home by Sunday.

My mom still isn't feeling well so she won't be coming down this week. I think it's ok since John is doing better; I will go home to take care of Andrew when I need too. It's doable.

We still haven't seen Dr. Lamkin so I don't know what all of this means relating to future treatments. I guess we still don't know the true results of the biopsy.

Tuesday, October 7, 2008

One of the drugs John was on is called Ketamine. I found a description of the drug on the internet:

�Ketamine distorts sounds and sensations and makes users feel detached from reality. Users report sensations ranging from a feeling of floating to being separated from their bodies. Some ketamine experiences involve a terrifying feeling of almost complete sensory detachment that is likened to a near-death experience. Ketamine can impair your senses, memory, judgment, and coordination. Users can experience hallucinations and disconnection from everything around them. Certain doses of ketamine can cause dream-like states and hallucinations. In high doses, ketamine can cause delirium, amnesia, impaired motor function, high blood pressure, depression, and potentially fatal respiratory problems.�

I'm glad I didn't read that before John went on it. While on the medicine, John was unable to talk clearly, his eyes would not focus, and he could not finish a thought. He would talk in his sleep and have mini convulsions (not real ones but that is what his body would look like�it would freak me out and I would wake him up). He would not have the coordination to get out of bed to go to the bathroom. I would have to help him up and then assist with his balance, as he would sway while standing. It was rare I would understand what he said the first time he said it and several times he would fall asleep before I figured it out. The ketamine was finished tonight. As it was weaned, we could see John coming back to reality. He says now there were many times he woke up scared from his dreams. Wicked stuff. John also doesn�t not remember very much from the last couple days. That is a good thing. However, if you text, left voicemails, or spoke with him, he may not recall.

John is still on PCA pump for another pain medicine (Fentanyl). His ribs hurt but his back is feeling better. Hopefully tomorrow we can start weaning him from it.

Ned spent the afternoon with John on his birthday. We gave John two new X-Box games but since John couldn�t focus, he wasn�t able to play them until today. He said he enjoyed having Ned here. Ned requested the start of the decrease of the Ketamine and made John get out of bed and sit on a chair. It was a good thing for John. It motivated John to actively participate in the recovery process.

The chest tube came out on Monday. Unfortunately, neither Ned nor I were here. Ned had to take Andrew to the orthopedic doctor and I had to work. Trying to balance family and work while spending weeks in the hospital creates situations that aren�t what you�d prefer. However, it is what it is. John is doing better and we had to find a balance. The procedure went fine. It was painful and it felt funny for John to breathe afterwards. He slept most of the day so Ned or I weren�t missed too badly. We had a nice evening hanging out since he was more aware. YEA!!!

Andrew saw Dr. Turker, the same doctor who performed John�s hip core decompressions and was at each of his hip replacement surgeries. He said Andrew�s swollen ankles are not from flat feet. He noticed the lack of movement and wants a CT scan to see if bones have fused. He said Andrew�s bones have lots of room to grow�huh? Andrew stated tonight that he is ready to be done growing.

Today was a quiet day. I had to be a client�s again and Ned brought lunch to Johnathon. Besides lunch, John slept most of the day. He had a physical therapist visit this afternoon for his arm. It is very weak and the PT said atrophy has started. It happens faster in some muscles than others. John has exercises to do and he�s done them a couple times. He just noticed the arm is a bit swollen so he may need to take it easy. The doctors also told us his arm may get worse when the white blood cells come back, which could be another reason for some swelling.

John�s appetite is slowing coming back. He gets full fast but he is at least eating something for lunch and dinner now. Thanks Betsy for the chex mix!!

His white blood cells keep going up, every soooo slowly (.1 increments�argh!). His cough got better after surgery and now is back. John sounds like he has a cold. Sniffles,cough�

I heard the Grotto service was very nice on Sunday. Thank you to all those who attended and thank you for everyone�s prayers. I look forward to going to the Grotto soon. I heard it�s beautiful and peaceful.

Thank you for the meals this week. Andrew loves having �real� food. I went home early this morning to surprise Ned and Andrew before I went to a client�s and packed some �real� food to bring back here. Stephanie made some pudding parfaits and John inhaled them. Big step for him eating!!!! Can�t wait until we are home and I can really work on getting him to eat.

Sunday, October 5, 2008

Yesterday and today have been good...in relative terms of dealing with a chest tube and living in the hospital. John's pain is under control until he has to move, which is many times a day with all the IV fluids. His pain medicine continues at a high level. I find myself getting frustrated because he asks the same questions and his speach is slurred, which can be difficult to understand. Hopefully this means he will forget most of the post op stuff.

The tube should come out tomorrow. They stopped the suction today.

Nothing has grown from the biopsy. It can take two weeks for some fungal infections to grow though. The infectious disease doctor is very happy with how well John's arm is looking. There's a knot in it but it is not noticeably inflamed.

The oncologists actually said once we get the chest tube out and John's doesn't get fevers, we will start talking about discharge. Love that word DISCHARGE. I don't know how soon this will be but we at least get to hear the word.

First thing this morning I went to Fred Meyers. I bought stuff to decorate John's room and some cupcakes. We don't have anything planned but I want to make his birthday special somehow. John's already commented that his birthday sucks but we can celebrate another day. We are celebrating inside that all his tests are coming back negative. That is a beautiful birthday gift.

Friday, October 3, 2008

3:45 pm:

I guess I didn�t quite explain John�s surgery yesterday. With the help of the internet, I was able to put together a decent explanation. I heard all of this but I couldn�t explain it correctly. John had a thoracotomy yesterday, not a VATS (procedure involves inserting a long, thin tube (videoscope) with a camera attached and small surgical instruments into your chest through small cuts made between your ribs) The doctors were afraid the nodules were to small for a VATS. The thoracotomy is a surgery to remove all or part of a lung, which involves making a cut on one side of your chest (thorax). After the cut is made between the ribs, all or part of the lung is removed depending on the reason for the surgery. As for John, the surgeons used their fingers to find a nodule then stapled and cut the area out. We have heard over and over that the thoracotomy is one of the most painful surgeries. My brother put it in the top three.

Pain
Thoracotomy surgery involves making a cut in the side of your chest between your ribs. Your ribs are spread apart so that your surgeon can see into your chest cavity. A small piece of rib may also be removed to make it easier for the surgeon to take out larger samples. The incisions and your chest area may be painful for several weeks to months after surgery.

Chest tubes
One or more chest tubes are used after surgery to drain your chest cavity of fluid and blood, which are present after lung surgery. The chest tubes also help your lungs refill with air. Chest tubes are placed in your chest cavity and extend out through your chest wall and skin through small cuts between your ribs on the same side as the surgery. The tubes are connected to a machine that creates a gentle suction, which helps your chest fluid to drain. The fluid is collected in a container that measures the amount of fluid draining from your chest. The chest tubes will be removed when the drainage from your chest has stopped and no air is leaking from your chest incision, which is usually after a few days.

1:15 pm: Prayers must be working.

Doctors said the x-ray came back normal! Arm bone looks good!!

So far all preliminary fungal tests on lung sample are negative. It doesn't mean nothing will grow but we know it's weak. The oncology doctors were surprised there was puss in his lungs; this indicates white blood cells. His body is doing something to fight the infection. If the infection is bacteria, the doctors doubt we'll get a positive bacteria result since John has been on antibiotics. The bacteria is probably dead.

Since we had a rough night, I slept in. I don't like to do this since it puts me in my PJs when doctors make their rounds. Ned took the day off so I was more relaxed about not rushing. He'd be here when the doctors came in. It was decided to put a PIC or midline and estimated the IV nurse would be here in the afternoon. She arrived within in an hour; Ned and I had to leave the room. I had the opportunity to spend an hour or so in the playroom in my PJs. It does put a smile on my face. It was outside my comfort zone but I really didn�t care.

A central line was placed. It�s a new line called PowerPic Solo. Sounds cool, huh? It will make John�s and the nurse�s lives a bit easier. It is also purple. We asked if they could put some gold on it (U of W colors for Ned).

John is very drugged. He talks a lot in his sleep and then wakes up asking questions about his conversation he was having in his sleep. Pain is pretty much controlled but he has moments of uncomfortable pain.

I know he asked for visitors but I would not recommend visitors today. He can�t stay awake and when he is, the moments of intense pain is not fun to be around. Please call or text him if you are interested in visiting. If he is feeling well, he answers his phone.

Morning: Rough night. Lung tubes suck. John came out of surgery in alot of pain. It feels different to breath and it freaked him out. During recovery, he kept telling Ned and I that he was glad we were there and I was to keep a hand on his shoulder.

His back is hurting. Ned and I took turns last night massaging it then all of a sudden it hurt for us to touch it. As of this morning, it is back to massaging.

At approximately midnight, the pain medicine was at a level John could tolerate. John has such a high tolerance for pain medicines that it's hard to find the right balance. They were afraid they were going to snow him with the beginning increases and it wasn't enough. He has two pain medicines continually going. The doctor here last night was great. We experienced doctors afraid of increasing his pain medicines due to the level; this doctor was totally staying on top of and giving him increases until the pain was tolerable.

For some reason, a central line was not placed during surgery. We found out right before surgery there was not an order so we asked for a PIC or midline. John came out with two IVs. One of the IVs has already failed and the IV therapist was unable to place another one (veins are all compromised from prior IV lines). We are waiting to see if a PIC line can be placed today. John doesn't want to be awake for it but there isn't enough time to schedule sedation.

To do the biopsy, they had to spread John's ribs. The put a tube into his chest that goes to a "bubbler" machine. It keeps the lung inflated. Everyone has said this is a very painful procedure...definitely more painful than the hip replacements. The doctor said they like to use an epidural but can't with John's low platelets.

The wildcats won last night! Janna was giving me updates regularly by texting. It was awesome to get the great updates while we were in surgery waiting. My mom and dad were at the game. Thank you! It felt odd not being there.

Thursday, October 2, 2008

5:30 pm - Surgery is done! Surgeon said all went well. They got a good piece of lung for testing and the lung has some puss (I don't know what that means exactly). The outside of the lung looked good. The surgeon let us know we have a brave kid. John is in recovery now.

I've been getting updates from moms at the football game (love texting!!). Wildcats are kicking butt!!! Way to go CATS!!! It has helped our spirits tremendously.

Another Update:

Surgery should be around 4 pm.

Go WHS freshman Wildcats!! We will be there in spirit!!!

Clarification: John is getting the platelets he needs. There is not an issue with him not getting platelets. However, Red Cross is typically in need of platelets. It takes 2 hours to donate and they have a five day shelf life. Here's the link for Portland Red Cross to donate . http://www.nwblood.redcross.org/donors

10:30: The morning is not starting well. The infectious disease doctor came by and said the bone infection could be cancer. Apparently an x-ray will help determine that and they just did an x-ray. She is one who lets you know everything and sometimes you just don't want to know everything.

Surgeons came by and they are a bit nervous about this procedure but they feel they have too. They said the results of this procedure could prevent a bone marrow transplant. HUH?? It could be an infection which would make BMT too dangerous. They said typically a person has a chest tube for two days but John will probably have it four days since he doesn't have platelets and white cells. The procedure will be sometime this afternoon. The surgeons said John could say no and I definitely think he considered it.

John is falling apart. He is having information overload. John is asking for visitors. Please call him first to make sure he is feeling ok.

9:00 ish: Waiting, waiting, waiting...that will be today. John has been NPO (nothing by mouth) since midnight. The doctors don't know what time he will have the biopsy; it will be sometime between 8 am and 4 pm. John of course is hungry now that he can't have any food. I told the doctor he should have made John NPO days ago.

John had a rough night. There were tons of interruptions. He received two units of platelets, which caused a fever. The fever meant cultures. The doctors had a phlebotomist draw without realizing they can�t draw for cultures. Unfortunately, the phlebotomist was not friendly and rough with John�s arm. I typically don�t say anything but I�m to the point that if people chose careers in pediatrics then they should know how to deal with sick kids in the early mornings (before 6 am). We�ve had a couple experiences with people drawing his in the early mornings being rude (turning on all the lights and talking loudly). I don�t get it and I�m not ok with it anymore. Since the phlebotomist couldn�t draw for cultures, the doctor had to call PANDA to come draw for cultures. Apparently they each took from each arm so John had four pokes. He was getting quite y with the last draw. I had a chat about his attitude and he lost it. He wants to go home and he is scared about surgery. I asked our nurse if we could post a sign on the door so it limits who comes in the room this morning. No CNA, no housecleaner, no volunteers...so John can rest. He needs some uninterrupted time. There is no known downtime in the hospital and he needs a break.

The surgeon came by this morning. John had to sign paperwork that if anything goes wrong they can make a bigger incision is his chest. He will have chest tube for a couple days at least. They will be placing a central line in John�s throat.

White s cells stayed at .3. I am praying this is a sign of upcoming white cells. Even though John received two units of platelets in the middle of the night, he will need two more units before today�s procedure. His platelets have to be at a particular number for surgery and we didn�t get there with the two units. I know the Red Cross is always looking for platelet donors. Without donors, John wouldn�t be able to have this procedure.

The infectious doctor just came in, she now mentioned leukemia in the arm bone as another reason why the bone lites up on the MRI. John doesn't appreciate her bluntness.

I HOPE...

I hope you never have to hear the words, 'Your child has cancer.'

I hope you never have to hear, 'The prognosis is not good.'

I hope you never have to prepare your child to undergo radiation or chemotherapy, have a port surgically inserted into their chest, be connected to IV poles.

I hope you never have your child look at you with fear in their eyes and say, 'Don't worry Mommy, everything will be okay.'

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the 'cure' you pray for slowly take away their identity, as they

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

'It's going to be okay, Mommy.'

I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor...crying quietly, after just being told, 'There is nothing more we can do.'

I hope you never have to watch a family wander aimlessly, minutes after their child's body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child's head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, 'It's going to be okay Mommy.'

I hope you never have to face the few friends that have stuck beside you and hear them say, 'Thank God that is over with,'...because you know it never will be.

Your life becomes a whirl of doctors, tests and MRI's and you try to get your life back to 'normal'.

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words...

'The cancer has returned' or 'The tumor is growing.'

And your friends become even fewer.

I hope you never have to experience any of these things...Because...only then...

Will you understand...

(author unknown)

Wednesday, October 1, 2008

Late update...

Ned took the day off so he could spend today with John and I could be home. This journey has been the hardest staying at the hospital. We are so tired of this but yet we will do what it takes to keep fighting. Sometimes all you can you do is take one day at a time. The future can feel overwhelming. I feel bad that John can�t also go home to get recharged.

Dr. Lamkin was not able to visit today; he's too busy but he told the doctors to do whatever John wants. I would have preferred a little more guidance. The doctors have given us two options, biopsy or take antibiotics without knowing what it is. They said the third option of a needle would not get a large enough sample, the nodules in John's lungs are too small. John called me at home to get my opinion, while the doctors were in the room. He is scared to have a biopsy and chest tube with no immune system. I am too. However, I don't want to treat the unknown. Ned, I, and John have decided to go forward with the biopsy. It will be tomorrow. Ned and I told John that once he is hungry, we will get him a steak from the Chart House...his favorite restaurant (which is close to Doernbecher's...bonus!). Hopefully that will help in some way deal with this. We don't know what time tomorrow. Andrew has a football game in the afternoon; it looks like this will be the first game I miss this season and maybe Ned too. My parents will be here tomorrow morning and my dad has offered to come to Doernbechers but we won't leave if John is in surgery or recovering. At least my parents will be at Andrew's game. Have I mentioned that CANCER SUCKS!!!!

It was nice to be home for a bit. It�s nice to hang with Andrew, see the dogs, get laundry done, work at my desk, and sleep in my own bed. My car breaks have been squeaking so Lance's took a look. All is fine. Whew. I was able to go grocery shopping and make dinner for Andrew. He was excited to have a real dinner; he is tired of fast food. It was good for me to fix a real meal. I also picked up several items to bring to the hospital to hopefully get John eating. The room�s shelf looks like a mini-mart with the selection of different items. He is eating the Triscuits now so that is something.

Ned did notice a slight increase in John's white count. We are praying this is a sign that his immune system is starting to come back. John had a good day hanging with Ned. They played X-box and watched movies. This evening I have noticed a positive difference in John's attitude.

I've added a site link below, Bryce. This is a site I learned about a while ago and the mom is amazing. This family has endured so much. Whenever I feel sorry for myself, I think about her.

Tuesday, September 30, 2008

Evening Update: Doctors came by and let us know the options they are considering.

1. Take a sample of his lung tissue using a needle. The needle may not get enough sample to identify the infection.

2. Do a biopsy so there is a big enough sample. John will probably have chest tube after the procedure.

3. Treat him with antifungal antibiotics for many weeks, which have the side effects of fever and harsh on kidneys. There are different types of fungal infections so they would chose the antibiotic that covers the most types of fungal infections.

John said no to chest tube. I am not keen on treating him for something we don't know if he has. Dr. Lamkin returns tomorrow (he's been gone since we've been here) and the doctors would like to have his input.

Afternoon Update: ARGH!!!!!!

Infectious disease doctor stopped by. In summary, she believes John does have fungal disease in his lungs. The shape of it indicates it's fungal. Since John is doing relatively well, they don't want to start antibiotics until they have a better idea of what type it is. The urine test may tell them or they may go get a sample from his lungs. She will tell us later today if they want a sample.

The test for Salmonella in his gut came back positive. John has to be careful handling food for the next couple months. The doctor said he can't make food for his family for a while...like that would an issue. :-)

She thinks John could have a bone infection in his arm. There is something in the MRI scan but she isn't sure yet. She said when everything is swollen, it can make the bone look infected too. Now that the arms is improving, she wants to do another MRI later this week to check out the one. The arm continues to be painful. I look forward when he will stop pressing the pain button so often.

If John has fungal disease and/or bone infection, it will be months on antibiotics.

None of the news we wanted to hear. One day at at time...

Morning: Nothing is really known yet. Yesterday the doctors wanted a urine sample to test for fungus but the lab ran the wrong test. It's hard to get a sample from your lungs so they are testing other areas first. The doctors today said they would have some sort of game plan by this afternoon. They are talking to the radiologist to see if they should go into the lungs to get a sample or not. John got another fever last night, which means cultures again. Every time John gets a fever, they have to run cultures and they can't use the peripheral IV to draw blood. John has to get poked for each draw by IV specialist. His hands and arms look like pincushions and they have to get more creative to find a good vein. Last night they used his finger. So far the only culture that grew anything was the Friday night he was admitted. The doctors said today that fungus takes a while to grow, a few days. John has a good cough and it hurts to take deep breaths. John does understand fungal infection in lungs. He asked the nurse today about it and when her answer wasn�t going the way he wanted, he cut her off.

Today I received the following e-mail from Helena Lulay:

This Sunday October 5th at 10am at the Grotto in Portland we would like to invite any family or individuals who would like to join us for a Mass and a prayer walk in The gardens at the Grotto. Our prayers will be offered for John and Rob. Any and all denominations are welcome. There is power in prayer and the Grotto is a perfect setting. I have attached the link for the Grotto. If you prefer to just walk the Via Matris, The upper Gardens we will do so following the church service at 11am. Rob and John need our prayers. Please pass this invitation on to anyone you think might be interested in attending. This is an informal gathering in support of our friends Rob and John. We hope you can join us.

Helena,Jeff,Joe,Jeffrey and Jodie Lulay

The link is http://www.thegrotto.org/

October 5th is John�s 19th birthday. Perfect day for massive prayers. We could sure use it. This has been a rough stay and every time we feel like we are getting ahead, we get knocked down. John is extremely frustrated. It�s hard to offset his frustration because we are feeling it and there are no answers. Sometimes I wish we had a crystal ball but then maybe it�s best we don�t. At least we know his white blood cells should be coming back in a week or so and that should help considerably.

John hasn�t eaten very much since he�s been here and he�s been in bed. He is looks skinny and he commented last night how much his muscles have shrunk. I keep trying to get him to eat but his appetite isn�t there. I even made him german noodles and those didn�t taste good. Lately, he�s been eating pudding and cereal, with chili here and there (yes, chili).

I haven� heard how Rob is doing but he is fighting his third relapse within a year. He has followed a similar path to John�s but in a much shorter time span. He is at OHSU getting ready for his second bone marrow transplant. Cancer SUCKS!!!!!! Rob has an incredible attitude.

Please pray for a fast recovery for Jayden Cooper. He is a team mate of Andrew's who was injured at last week's football game. It was the first time I can recall seeing a Wilsonville player taken away in an ambulance from the field; it was obvious his injuries were bad (compound fracture). He underwent surgery on Saturday at Doernbechers; Jayden has Titanium screws in his ankle and growth plate, and rods in the tibia and the fibula. Jayden was able to go home yesterday from Doernbechers.

Thank you for all your support and prayers. It helps us face each obstacle.

Monday, September 29, 2008

The days have been long but we thought getting better. John's arm looks much better but it's still painful. He continues to use a PCA to manage the pain.

On Friday, John had a CT scan of his nasal passages and a x-ray of his lungs. They were making sure there wasn't any infection they were missing since John continues to have night fevers. They said the curve was getting better though. Both came back as normal.

Unfortunately, John has had fevers of 103 the last couple nights and his cough is getting worse. They took a CT scan of his lungs and we just found out there are a half dozen nodules. They don't know what they are and they are trying to figure out how they will find out. John is bummed. I am scared. There is a possbility it could be fungal, which is dangerous. It could be infection. They don't know if he had them when he arrived and they have gotten smaller with antibiotics. They don't know. When the three doctors walked in the room, you could feel something was coming our way that wasn't good. My heart sank before any words were spoken.

John is upset. He wants out of here. I don't know how much he understands about the lungs being involved but I am certainly not going to ask.

Thursday, September 25, 2008

Hello�.

I went home yesterday for a while to work and my mom came to Doernbecher�s to hang with John. They seemed to have a good day. John slept for quite a bit of the day; he also had times he was awake and playing X-Box and chatting with my mom. A nice change.

Bon Appetit served dinner to the pediatrics oncology ward last night. Steve Samuelson started this a couple years ago and families continue to enjoy a good meal once a month. Thank you Steve.

While I was home, Ned received a phone call from the school nurse. Andrew hurt his leg playing tackle football during lunch. She was planning to watch him and call back if Andrew needed to go to the doctor. My heart dropped. I had visions of Andrew needing surgery, etc. It doesn�t� take much for my mind to take off with fear. I called the nurse and found out it was his knee. He was tackled from behind and came down on the knee sideways. Andrew did go to class with a visible limp. She had checked it out and wrapped it. She told Andrew to see the football trainer since he was having pain into his hip area. When Andrew came home, he said he was �fine��however, he is still limping a bit and I have to walk slowly for him to keep up with me.

John had a MRI last night around 8 pm to see if he has a bone infection. If he does, this means antibiotics for months. The MRI was painful to his arm. He waited for transport for 30 minutes, got mad, and walked himself with IV pole back to his room from OHSU. By the time John returned to his room, he was all worked up. The nurse took his temp and it was 101.6. AGH!!

John�s kidneys are better.

The surgeons came by this morning (re: flesh eating bacteria, etc). They said they are done seeing John. YEA!

The oncologist said John would be here until counts recover and may go home on IV antibiotics. If he does, then John needs a central line. John was devastated. He does not want a central line. I asked about a mid-line and they said that is possible. John still isn�t happy. He wants to go visit a friend in Idaho and a line may prevent that. Counts should recover 21 days after chemo�I think we are on day 11.

Looks like another IV line just clogged. We are waiting for IV therapy.

The infectious disease doctors got the MRI results back and it appears no bone infection. They haven�t looked at the MRI yet, only read the report. However, great news!!!

We think we know where John got salmonella. Two relatives got really sick in Hawaii and it was speculated they had food poisoning. The symptoms they described are the symptoms the infectious disease doctors were looking for. The infectious disease doctors said others were probably infected but only the two relatives got enough to get them sick.

Wednesday, September 24, 2008

Glucose level was normal this morning. No one knows why it was high last night (340).

Gram negative tests came back as Salmonella. The nurse said Typhoid fever is a form of gram negative. The nurse said the sample is off to the state lab for further testing to figure out the type of Salmonella but we could have many visitors asking many questions (to figure out where he got it).

Another doctor arrived to check out John�s arm. There is fear he could have flesh eating bacteria and this was the surgeon who would diagnose and cut out the infectious tissue. Yep, the only way to get rid of it is to remove it. He said the infection is in-between the skin and muscle and hard to get rid of. Luckily, he decided after 30 minutes of looking at it and consulting his boss that John does not appear to have it. He also looked for another type of infection (compartmentalized?) and he didn�t believe it was that type either. However, he will be stopping by every day to keep an eye on it since it could yet develop. (John is freaking by now...too much information...and it's still morning)

John�s arm does look better. It is very red from the upper arm to the wrist area and swollen. It is hot to the touch. It is sore but a lot less painful than Saturday. John is still on the PCA pump for pain. The redness is less angry. There are definite improvements but some things look worse (red area larger and more swollen). John wants the guy who took his blood fired. John said when he arrived to get his blood drawn, the supervisor told the person drawing his blood that John was neutropenic. I am hoping the oncologist doctors follow up. I am waiting to talk to Dr. Lamkin before I made any decisions if I want to do additional follow up.

John had his fourth IV placed today. For some reason with this stay, his IVs keeping having problems. John doesn�t want a central line. Today IV therapy suggested a mid-line for our next extended stay.

The doctor today said John was in septic shock on Friday night. It�s what I thought but I hadn�t heard the words yet. It's part of the reason the recovery is longer.

Infectious disease doctors wanted to know where John could have been exposed to Salmonella. We couldn�t come up with anything. They think he may have been exposed a year or more ago and the bug sits in your gut. When John became neutropenic, the Salmonella got into his bloodstream.. They will do tests to see if it is in John�s gut. It doesn�t sound wonderful if it is. There is no way to get rid of it except through time. Hopefully, it�s not in his gut. The infectious disease doctors were surprised the gram negative test came back Salmonella. They will continue to visit John daily. They also took him off of one IV antibiotic because his kidney is showing strain.

My mom arrived today to help out. YEA!

That�s all for today�.

Monday, September 22, 2008

Some improvement today. John's arm is less painful but the redness is spreading. The infectious disease doctors came by and they want an x-ray. Some bacteria will release gas and they can see that in x-rays. They started him until IV antibiotics today for gram positive (HUH??? I was told they would start that yesterday!). There is no way to know exactly what the infection is unless the gram negative test shows a bacteria which can present itself on the skin. It takes a couple days for the gram negative to grow before they can determine the exact type of bacteria.

John gets a fever whenever the Tylenol wears off. It still goes to 102. He is still getting sick too. He really hasn't eaten since Friday.

Now his blood work is whacked out. The Glucose is high. They took blood twice from his IV so now they will draw directly from John's vein. Sometimes cells can break being drawn though the IV. The nurse said John doesn't exhibit high Glucose levels. It has freaked John out.

Sunday, September 21, 2008

John definitely did better yesterday. The morning was not solid but the afternoon was. Thank god.

Tests came back positive for gram negative. This is a bug we evidently all have but our immune system keeps in place. When you lose your immune system, this is the worry. You will get sick from your own gut and it's dangerous. Dr. Stork said yesterday most people go to ICU with his infection. I know it was close for John many times.

On top of that, John is fighting an infection in his left arm. When he went to the clinic on Thursday, he has to go to the 7th floor (oncology clinic on 10th floor) to get his blood drawn since he does not have a PIC or Hickman line. The people on 7th are phlebotomist...professional blood drawers. We are at Doernbechers, a learning hospital. John's phlebotomist was being trained. He got the needle in and fished around. John now has a gram postive infection and he is in intense pain. The area of the poke is red (four inch diameter) and swollen. In ER, he said it was a 10 pain on a scale 1 to 10. No one can touch it without him screaming in pain. Nurse Heidi made a splint for him yesterday but after a few minutes with the splint, his body starting shaking from the pain. He is now on continual drip pain medicine, which is a problem because pain medicines can decrease your blood pressure. I am soooo not happy. This was a totally preventable occurence. Why is someone practicing on an immune suppressed, lack of platelets individual? I voiced my unhappiness to Dr. Stork and asked if she would like to call them or should I. She said she would take care it. This is unacceptable. The arm is still painful today and still red. I'm not seeing any significant improvement. It scares me. John' white blood cells won't come back for another two weeks.

As for blood pressure and fever, both are better. John did get a 102 fever today but it was during platelets transfusion.

His IV broke this morning. ER did a great job getting it in but didn't secure it correctly. One fell out yesterday and the other one got a kink in it this morning....which meant no pain medicines while we were waiting for IV therapy to put another IV in. John's arm got painful quickly. Bill is our nurse today and he was right there giving John pain medicine in his IV as soon as the IV was placed.

We are all emotionally drained. Thank you for the phone calls and e-mails. I try to return them when I can. When John isn't feeling well, he doesn't like noise so I don't answer the phone.

Saturday, September 20, 2008

Life got real exciting last night...

John started not feeling well on Thursday. He had a sore throat then started to cough. The same symptoms as Andrew's cold/flu earlier this week. On Friday, John was out of energy and kept bundling up. I asked him if he felt he had a fever and I got the "no, it's not a fever". He met Kelsey in Woodburn in the evening to shop for clothes and Ned & I headed out to dinner.

Ned & I arrive home to see John's truck in the driveway. He doesn't park in the driveway. We immediately went in the house looking for John. He was in bed, covered in massive blankets, shivering. He had 103 fever. We asked why he didn't call and he said he couldn't find his phone. We asked Andrew and he said John just said he had his cold and was going to bed. John would not get out of bed; Ned almost called 911.

I called the doctor and he said to get to ER. When we arrive, John's heart rate is at 130, blood pressure low, and fever of 103. The nurse freaked and sent us back to a room immediately. It was pretty scary. They took massive blood, started an IV, and antibiotics. We arrived at ER at 10:30 pm and were transfered to a Doernbecher room around 1:30 am.

Most of the morning it was trying to get John's blood pressure up. They would give him fluids which would bring up his blood pressure for a bit then it would go back down. There was a lot of talk of John going down to ICU. Luckily, his color looked good and he woke up around 8:30 am, talking and taking some of the blankets off. His blood pressure is still a bit low but his fever is down to 99 with Tylenol. They will be watching John's lung closely. They are afraid of pneumonia.

John doesn't remember all the events of last night. I believe his body was starting to shut down. Andrew is having a hard time. He couldn't eat this morning. We are seeing far more emotion from him on this journey than the other two journeys. Ned will bring him to the hospital tonight after he is done refereeing. I think it will help for him to see John.

Damn Cancer.

Friday, September 19, 2008

What a week! A lot of emotions�
Yesterday was John�s Doernbecher appointment. His counts have plummeted. He doesn�t have an immune system and platelets were down to 38. They won�t transfuse until 10 or under. I expect John will need platelets at Monday�s appointment, and maybe red blood cells too.

Dr. Lamkin came into the room, sat down, and said we don�t need to pursue OHSU anymore. I know he only took a breath until the next sentence but it seemed like an eternity. Dr. Nemecek, Doernbecher Bone Marrow Transplant doctor, has changed her mind and they will start the bone marrow transplant process for Johnathon. After a few stutters, I finally got out �what happened?� Dr. Nemecek did not expect John to respond so well to the chemo treatment. Dr. Lamkin gave me the impression they will go forward with a bone marrow transplant, not an infusion of the donor�s bone marrow.

I�m not sure how I feel exactly. I am relieved I don�t need to find someone to help John but it scares the heck out me to be looking a bone marrow transplant. All the doctors feel this is only way John will receive permanent remission�but at what cost? It could be that this chemo will do it but no one knows�.and if it didn�t, John may not have the option of chemo again. The body has a limit to how much chemo it can take. I am torn�I am scared�I want answers and there is no way to get them. All we can do it take each day as it comes and fight, fight, fight. I don�t want to ever look back and wonder if we did enough. However, it sucks knowing each decision affects Johnathon in the short-term and long-term. Will we be looking at AVN after steroids again? What will happen with GVHD? How much pain will John endure?

One of John�s best friend�s left for Oregon State University this week. It�s been hard on John. He is very disappointed to be missing out and it will be different to have all his friends not in Wilsonville. I am trying to think of something for him to do..focus on but it�s hard when he is sick and/or immune suppressed. I suggested he start quilting and he didn�t think I was very funny.

Andrew had his football game last night. He was sick Sunday, Monday, and Tuesday�nice way to come home with an immune suppressed son and one who is sick. I tried to keep Andrew in one room but it didn�t work very well. John is starting to get a cold. It�s hard to prevent. Since Andrew missed some practices, he wasn�t able to play one quarter for the game but for the three quarters he did play, he did well. It�s nice to be experiencing a somewhat normal high school experience. We�ll never have the typical experience since Andrew has aspergers but it is what it is.

I heard the following from Andrew�s coach recently and it really hit me. At the very least, we have the ability to:
�Make it a great day!!!�

Sunday, September 14, 2008

John is home!!!!

Saturday, September 13, 2008

John had a great afternoon yesterday. He got disconnected from the IV bag and we went downstairs to Starbucks and chatted with the Doernbecher IT guy. We were trying to make it so John and I could both be on the internet so I purchased an ethernet router. However, we couldn't get it to work. We asked the IT guy about it and he said someone else did that recently and it took down Doernbecher's internet access. Oops. Thank goodness we asked before continuing. He said there are two internet hookups in every room...HUH?? This is like a second home and I feel like we know every nook in these rooms. How did we not know of a second hookup? I've tried multiple locations but never the one he told me about. Live and Learn!

Unfortunately, John hasn't been able to enjoy being on the internet the same time as I. Around 5 pm he started to feel ill and he hasn't felt good since. He's been throwing up and dealing with a nasty headache. It sucks (which isn't a strong enough word but it's family friendly). I am so tired of this journey but I don't want it to end without successful remission for the rest of John's natural life. John deserves to feel good and enjoy life.

I found a cool website last night for t-shirts. There are quite a few I think I may purchase for Johnathon. Some are perfect http://t-shirts.cafepress.com/cancer

I try to be quiet while John is resting. I've been getting the youth wrestling website ready to go and I think it's mostly there. Wilsonville Youth Sports switched to a new website and it's been interesting trying to figure it out. Not as user friendly as the last site but it's good to be challenged. :-) You can check it out at www.wilsonvilleyouthsports.org.

I am also getting some work done. I have my laptop with a mini printer set up on the mini-desk here. Sometimes the desk light bothers John so I work when he is asleep enough to not be bothered. I have football on the TV right now. I figured the noise of a football game would be good for John. Oregon State University is playing so if he wakes up, it will give him something to focus on. Beavers better win!!!

Wade, Maia, and Aidan are here. Wade is at a class at OHSU. He will come over after the class. I hope John wakes up soon feeling good so he can visit with Wade.

Thursday, September 11, 2008

10:00 am - John did much better last night. I don't think he got sick once. He didn't feel very well for a while but it was much better than the night before. I know he was up until at least 4:30 this morning playing on the computer and watching movies (I kept waking up..it's hard to used to sharing a room with a teenager again!!).

I left at 6 am so I could get Andrew up and out to school. I will work for a bit then watch Andrew's game this afternoon. My mom will go directly to Doernbecher's to hang with John. However, if it's anything like yesterday, John will sleep all day. Not so much fun but better than John being sick.

Thank you Lisa Willett for bringing Andrew home from practice and bringing dinner over. Andrew was happy to have food ready to go. Ned had to work late so he was on his own for a while. He did save some dinner for Ned...I think he could have ate it all. He is not getting full again. Could he go through another growing spurt????

Wednesday, September 10, 2008

7:30 pm � HAPPY BIRTHDAY AIDAN!!!!

John had a rough night last night. His chemo started around 5:45 pm. They pre-medicated him, which put him to sleep for most of the chemo IV time. I left around 6:30 pm since he appeared to be comfortable. My mom isn�t able to get here until Thursday so I wanted to be home this morning to get Andrew to school. My first plan was to spend the night and leave early in the morning but since John was sleeping, I thought maybe it would be ok to leave�wrong. Luckily he had a great nursing staff last night that totally took care of him. Unfortunately John ate 36 hot wings for lunch. I had the phone by me all night waiting for the call to come back and never got it. In fact, John told me I should go home tonight too but I�ll stay and leave early in the morning. My mom will come right to Doernbecher�s tomorrow morning and I will come back after Andrew�s football game.

John did not get a PICC line. Dr. Lamkin said it was ok for this chemo to run through an IV. John was very excited. He will be able to swim once his counts recover.

No word from OHSU. Dr. Lamkin said he would ask the Doenbecher�s transplant team to bug them. We are getting to the point that we need a game plan in place.

I came back to Doernbecher�s late this morning. On my way here, I was thinking about being back in the Doernbecher�s room and how difficult it can be�I then notice the car in front me has a license plate number that begins with 44 and the car next to it in the middle lane does also. It made me smile. A few minutes later I was getting ready to turn onto the hospital road and I look at the clock�the minutes are 44. Once I get to the room and turn on aol, I receive a IM random message from someone with 44 in their IM address.

When I wrote about the #44 and #74, I received a couple informational e-mails from friends. One friend wrote �In Doreen Virtue's book, Healing With The Angels, the 444 means, "The angels are surrounding you now, reassuring you of their love and help. don't worry because the angels' help is nearby."
7777777777777777777777777777777777777777777777's are the highest spiritual number and represents the Divine. Doreen's meaning: The angels applaud you~~~congratulations, you're on a roll! Keep up the good work and know that your wish is coming true. This is an extremely positive sign and means that you should also expect more miracles to occur." Another friend wrote, �I found an article in one of my magazines that said if you have been seeing the #4, it meant that angels are surrounding you.�

I�ll take a miracle and I like knowing the angels are surrounding us�I just don�t want anyone joining them.

John will receive two chemos today. One at 5:45 and the other at 7:45 pm. He�s had a headache all day today. He had one before with the first chemo. It is very uncomfortable and reminds me of a migraine. Sucks.

John did comment today why he should continue putting chemo in his body when he it makes him feel so bad. I think he is considering whether the means is worth the possible end. It is hard to be dealing with the odds and justify the pain. I think it�s worth it but I�m not the person receiving chemo treatments. I think I would be wondering the same thing if I were him.

Tuesday, September 9, 2008

NEW PHOTOS!!!

3:00 pm - We are in room six (right next to playroom). We were in here by noon and Nurse Rachelle suggested we go get lunch as everything was getting ordered. She thought nothing would start until 4 pm. It's 3 now and nothing has arrived. I'm sure she has Doernbecher's system down. John went to Fire on the Mountain and had hot wings. He said it was awesome; I tried one and it was HOT!

9:00 am - John will be admitted at 11 am today. Ugh. At least it's a beautiful day outside.

Monday, September 1, 2008

John called today�while he was waiting at the airport in Hawaii to leave. I guess I get the landed and take off phone calls when he goes on vacation. :-) John was very chatty on the phone. He had a blast but he is exhausted and ready to come home. He spoke of WHEN he turns 21, he want to go to Vegas or Hawaii. He also said WHEN he graduates from college he wants a convertible mustang. It was wonderful to hear the excitement in his voice and even more wonderful to hear him talk about the future. I�m not sure how he will finance his future plans but I�m all for talking positively about the future!

Andrew has his jersey number�he has chosen #74 (remember #44 was retired). This was the jersey number Ned wore when he played college football. It seems funny to see Andrew wearing it; I have flashbacks of Ned. Today I went to Target to pick up school supplies and when I walked by the men�s clothing�what did I see??? But a shirt with 74 on it! It made me smile. There are so many times I see 44; I wish I would have wrote down every time I�ve seen it since John was diagnosed. I don�t know what it means, if it means anything. I came home from Target with the shirt (of course) and showed Ned. I was so excited. He glanced at it, says �cool� then comments it�s a converse thing. Oh well. I am still excited! Andrew�s first game will be Thursday. Go Cats!!!

Thursday, August 28, 2008

Happy Birthday Chris Zimmerman!!!! I hope you are sung to as you have sung Happy Birthday to others!!! :-)

John actually left for Hawaii on Sunday. I messed up on the day. Luckily my mom straightened us out on Saturday night and we scrambled to get John ready to go. He called on Sunday night to let us know he was in Hawaii and we have't heard from him since. I'll take that as a good sign he is having fun.

John will be admitted on Sept. 9th, not the 8th. I think this may be the first time we changed a day to fit our schedule better. It's never a good fit but it will be less stressful on Tuesday. I am so not ready to start the chemo journey again. It's been wonderful to have a month of denial.

Friday, August 22, 2008

FOOTBALL ON!!! Andrew went the fracture clinic today and the doctor said there is NO fracture!!! What the pediatrician saw is unknown. The fracture doctor had someone else look at the x-ray to confirm. The fracture clinic doctor said Andrew has a sprain and will need to wear a brace for three weeks. Andrew is cleared to play football!! YAHOO!!!

John went to Doernbecher's yesterday. Dr. Lamkin has not heard from OHSU. John is scheduled to be admitted on Sept. 8th to start his next round of chemo. It will be the same as the last two times. Six days in the hospital, released with low counts, and return if he gets a fever.

Tuesday, August 19, 2008

For some reason, our life does not like boring...Andrew has been complaining about his ankles. He has flat feet and wears arch supports so I figure it's from that. This time the pain got worse on the right and last night it kept him from sleeping. This morning he asked for pain medication. Andrew never asks for pain medication. I called the doctor and got him today. I thought it was his left ankle hurting because it was swollen. I was wrong. His right ankle is fractured. He did it on Friday. He practiced football last night. Do I lose some mommy points?? Argh. He will go to fracture clinic on Friday to find out exactly what we are looking at. The doctor mentioned screw but I couldn't tell if that was in relation to Andrew's injury or possible fracture issues in general. Andrew is bummed. Are we just not allowed to enjoy high school football????

Good news!! John found his necklace!! YEA! He had left at Global Wholeness when he had a massage.

Ned and I went to see "Who Stole My Dead Husband" on Saturday night with a group of friends. It's an interactive dinner play. OMG! I laughed sooo much. We had an absolute blast. It's in Portland at the Madison Grill. The food was wonderful! Just thinking about the night makes me smile!!

Tomorrow is Doernbecher's. John leaves on Monday for Hawaii!

Tuesday, August 12, 2008

John's appointment went well yesterday. He went by himself so I think it there wasn't a lot of discussion. I asked him about OHSU and he replied, "huh?". Such a teenager.

John did get his PICC line taken out. He didn't want it when he went to Hawaii. Last night he went swimming (he can't do that with a PICC line). I was a bit nervous about him swimming the day he had it taken out but he said he asked the nurse and she said it was ok. I sooooo wanted to call Doernbechers to confirm but I didn't. Trying to step back a bit..but dang it's hard!!

We are really enjoying August. John is trying to keep busy with friends. He has commented several times how he is upset he isn't going to college. It's hard to respond except with a "yep".

He went camping last weekend with his cousin Kelsey and her friends. He had a BLAST! When he came home, he had such a huge grin on his face and so chatty!

John was given a four saints metal on a chain from his great grandparents when he was first diagnosed in 2004. They had engraved the back of the metal and it meant a lot to John. With his treatments, he sometimes could not wear it and would give to me for safe keeping. Somehow while in the hospital it was lost and never found. I asked Aunt Joanne to have another one made a couple years ago. She tried to make it look just like the original and had the metal blessed by a priest. This week John lost it. We think the necklace must have broke. He's been frantically looking for it but who knows where it fell. He called Aunt Joanne yesterday to see about getting another one made. The necklace gives him such comfort. Hard to believe in four years time, we've lost two. He never takes it off unless he has too and it doesn't come off easily. We doubt it came off when he was changing his clothes. You should have seen John when he realized he lost it...there was no way you could break his focus looking for it.

Wednesday, August 6, 2008

Happy Birthday Jim Beltz!!!

Happy Belated Birthday Aunt Joanne...only a few days late...

All continues to go well. It's nice to know we have the month of August to enjoy before the more intensive chemo treatments start again. We haven't heard back from OHSU.

My mom and dad took Andrew and Johnathon to the Gran Prix raceway in Beaverton. They were able to drive minature cars up to 60 miles an hour and had an absolute blast. They are ready to go again...except John is very sore. He thinks it's from being hit and hitting others...hum...I bet that was a prohibited activity! :-)

Sunday, August 3, 2008

All is well. So far the chemo pills don't seem to be affecting John. I have noticed John is losing his eyebrows but that could be from the regular chemo treatments catching up.

My mom and dad are visiting this weekend. They both commented that I have wrote in the is journal that Andrew is 15 years old. Gads. I glanced at entries back to his birthday and I didn't see it but it wouldn't surprise me with the way the brain feels sometimes. Andrew turned 14 last May...he really wants to be 15 so he can start driving. Remember those days of looking forward to an age...now I just want them to slow down!!!

Jordan Beltz moved to Portland State University dorm this week. It was bitter sweet...definitely more sweet. It is SO cool he will be playing football for them and he is close to Wilsonville. I so wish John was also experiencing the same but it's great we can experience it through someone we feel close too.

Nothing really planned for us. John will have a Doernbecher appointment tomorrow to check his counts. He is looking forward to Hawaii. It will be he and my mom going. My cousin is getting married. I considered going but thought it would be too hard on Andrew. Andrew shouldn't go with football practices and school starting. Ned can't go due to football (in fact he took last week off and basically it was all football...I'm glad he enjoys it so much but I wish we would get more of his time). It will be a busy week while John is gone. John will have a blast!

Tuesday, July 29, 2008

John did not get admitted!! YEA! Dr. Lamkin decided if John was to start another round of the chemo he's been doing that John's counts would not recover in time for Hawaii. Dr. Lamkin has put John on chemo pills he can take at home, which will keep the leukemia "at bay". It will allow John's counts to be high enough to go to Hawaii and still be doing something. John will go back to Doernbecher's on Monday to make sure his counts don't go too low. We haven't started the chemo yet; the pharmacy won't have it ready until Wednesday.

I did ask the OHSU doctor why we don't do a couple more rounds of the current protocol and see if they keeps John in remission. There seems to be so many unknowns, like no one knows if the chemo treatment could be permanent and the other options could be fatal. The OHSU doctor said that if John relapsed, we wouldn't know if he could get back into remission and he would have to be in remission for any options. He also said the more times we submit John to chemo, the more toxic the body gets and there is a limit.

John is feeling pretty good. He's been working for Domino's delivering pizzas and hanging out with friends.

Thursday, July 24, 2008

Here� the low down:

John had an appointment on Tuesday with Dr. Lamkin. Dr. Lamkin arrived into our room 90 minutes after our scheduled appointment. The good news is I get to read and John gets to nap. For some reason (assuming because there is a new fellow), Dr. Lamkin told us again how he thinks this chemo will not put John into permanent remission. Argh! We discussed Johnathon�s trip to Hawaii in late August and how to work around John�s chemo treatments. When Ned and John asked awhile back, it was no problem they�ll work around it. This time it was they didn�t know what this would do but we aren�t really following any particular protocol but he doesn�t really want to take a month off. John blurted out that he is going to Hawaii. Dr. Lamkin looks at me and asks what I think. OMG. What do I think? Make my son well�FIRST priority. Dr. Lamkin decided he will schedule for John to be admitted on Monday with the thought he will do a mini-protocol. Something that won�t take his counts down as long. If there was no Hawaii trip planned, then John wouldn�t be able to start until Monday anyway. His counts are taking longer to recover this time, which can happen. This �mini-protocol� could mean in-patient or out-patient treatment. He will decide before we arrive on Monday. It would be nice to know prior. I am not packing until I know. It could be a power pack on Monday night (which of course is youth football equipment issue..doesn�t everything happen at once??).

Today we saw the OHSU bone marrow transplant doctor. We met him at the new OSHU facility off of Macadam. Talk about NICE! It�s an adult oncology location and it was very different to walk into a facility of adults with cancer. I like the doctor. I was afraid he would be abrupt and he isn�t. He wanted to get more information from us. He said John is very complicated case and he specializes in patients ages 15 to 21. His plan was to get a better feel of where we are and discuss possible options. He ultimately wants to take John�s case to the team of adult oncologists and include the pediatric team to the discussion. After we discussed John�s journeys, the doctor said there are three options for people who relapse after unrelated bone marrow transplant. First is chemo, which we are doing and it�s working. He said it could be a permanent fix but no one knows. However, they doubt it. Second is to give some of the donor�s cells to John to create GVHD. The hope would be he would get a little GVHD and it would clean up the leukemia cells. This would mean going to back to John�s original donor and he would have to agree to do it. This has risk in that the GVHD could get out of control and be fatal. Third is another bone marrow transplant. We would use a different donor and John would not get radiated. The doctor said John�s body couldn�t handle the same level of bone marrow transplant prep he had last time. This time they would �fake� his body by taking away his immune system. The process takes a couple months and is relatively new. The third option is the riskiest. The doctor definitely felt John had options available to him. He wants to see how many cells are donors versus John�s. The mix will determine if the second option is even available. John needs to have mostly donor cells for the second option. This doctor definitely gave me some hope....however, he has yet to get all the details of John's case. He will get back to us after the team has met and let us know what options they feel are available.

Sometimes things happen and you figure there must be a reason. Without a doubt, this relapse has been difficult. I am fearful we may lose this war. Yesterday I decided to check up on a family who lost their child last year to see how they are doing. Their most recent entry asked for prayers for a family and gave the link. After reading their story, I was reminded that there is always someone else who has more difficult circumstances than your own. Please include this family in your prayers�
http://www.caringbridge.org/mn/bryceb/index.htm

Wednesday, July 16, 2008

HAPPY BIRTHDAY NED, LOUISE, AND BETSY!!!!!

OHSU bone marrow tranplant scheduler called today. We have an appointment next Thursday, July 24. I don't know what I want besides John in permanent remission without having to suffer and having additional long-term side-effects. He has to deal with so much now. He isn't able to sweat and he overheats easily (from the skin being damaged from the GVHD), he has sore joints (who knows why...maybe from the steriods), and he feels bad almost every morning (bone marrow side effect). There are others that are physical and some that are mental. Radiation and chemo are toxic to the cancer cells and body, as well as the medications to prevent GVHD. Dr. Lamkin told us he knows we know what it means to fight...we aren't naive about the what that means. Sometimes naive is a good thing.

I am glad I don't have crystal ball. I couldn't handle more than today. I am doing ok. Just afraid of the future.

I hope people take away from reading my journal entries how important today is. Celebrate it. Enjoy your kids. Don't sweat the small stuff. It truly doesn't matter. I want so badly to be excited for John to attend college...for him to play football...but it's not going to happen. It's my reality. I have to enjoy what we have. Right now I have two wonderful boys. One is who experiencing high school life with football and the other still fighting for his life.

Enjoy today...no matter what you have.

Tuesday, July 15, 2008

Update: John's framed, retired #44 jersey he received from Wilsonville High School is now displayed at Chevron off of Wilsonville Road. Jim Beltz offered to put it there for a while so people can see it if they would like. Thanks Jim!! John would eventually like it to find a permanent home at Wilsonville High School. It is awesome!!!

Morning: John's counts are on their way back up! Yea!! Dr. Lamkin is on service so John saw a nurse yesterday. We don't know when John will start his next round of chemo.

I tried calling OHSU bone marrow transplant team and there was some confusion with the Kaiser referral. I was able to get more information from Doernbecher's yesterday. I will try again today.

Happy Birthday Wade!!!!

and then tomorrow....

Happy Birthday Ned, Betsy, and Louise!!!!!!!!!
I believe they are turning 39...again.... :-)

Thursday, July 10, 2008

John's appointment went well this morning. His counts are still low but there is slight improvement. Dr. Lamkin said they could give him red blood cells but probably don't need to if his counts are rising (and he thinks there could be trend between Monday and today's counts). I opted to wait it out. If John feels like he needs a red blood cell transfusion this weekend, we'll go to ER.

Monday, July 7, 2008

John's appointment went well...and (relatively) quickly. Ned took John...of course,they'd have the quick appointment. :-)

John didn't need platlets or red blood cells. The blood count showed a slight increase in the white blood cells. This "could" be an indication his counts are coming back. Thursday's appointment will be able to confirm this.

John is feeling good. He actually went to Lincoln City on the 4th with the Huddleston family. Ned and I were nervous about it and told John last week that Dr. Lamkin will be the person to make the final determination if he could go. Ned and I both thought for sure Dr. Lamkin would say no..it was further than 30 minutes from Doernbecher's and John didn't have an immune system. John asked at Thursday's appointment and Dr.Lamkin immediately looked at me and said, "mom, what do you want me to say?". My mouth must have dropped. Not what I expected. Dr. Lamkin basically said he is fine with it as long as the family John is going with are trustworthy and understand the importance of getting John to the local ER if he runs a fever. Dr. Lamkin said John would call the OHSU on call doctor to report a fever and that doctor would call the Lincoln City hospital to inform them John is on his way and what antibiotics they would need to start administering. Dr. Lamkin said if John just showed up, it would freak the ER out. After the antibiotics are started, he would then be transported by ambulance to Doernbecher's. I asked about John staying in a cabin and being around sand; Dr. Lamkin said he was fine with that.

All went well. John said between Ned and I, we were calling him every couple hours...and everytime I heard his voice, he was soooo happy...giggling...having a blast. It was a good decision. Thank you so much Huddleston family!!!!

Ned, I, and Andrew spent the fourth with Jeff and Helena Lulay. We also had a great time. It was nice to relax and have fun with friends..and for all those that know Helena, there were plenty of laughs!!!

Thursday, July 3, 2008

Appointment went well...but very, very long. John had a 9:30 am appointment and we left Doernbechers at 7:20 pm. John needed a unit of platelets and two units of red blood cells. The platelets didn't arrive until 12:30 pm and the blood at 3:15 pm. Each unit of blood typically takes 2 hours with 30 minute wait after he is done to make sure there isn't a reaction (the nurses were able to speed up the process a bit for John). I didn't expect to be gone that long; I'm not sure why. Andrew was home by himself and did fine. He rode his bike to summer school and to weight lifting. I felt uneasy being gone so long though.

Dr. Lamkin said there isn't a way to know John is in remission with these masses. We can guess he is because we don't feel any masses except one and he believes that is scar tissue.

The referral to adult bone marrow transplant was approved. YEA!!! I asked if we see a Kaiser BMT doctor and he said we go to OHSU. I asked about Fred Hutchison and he said we should find out what the OHSU doctor says and then go from there. Dr. Lamkin is willing to refer us to Fred Hutchison for a consult no matter what the OHSU doctor says. Dr. Lamkin is eager to get OHSU feedback since they will be looking at John's information without any emotional attachment like Doernbecher now has.

Dr. Lamkin expects to do at least two more chemo treatments. He said that could change if adult BMT doctor wants to do something else.

Dr. Lamkin is very please with John's progress. He again repeated that this will not be permanent solution (aaaahhh...I got it!!).

John immune system is suppressed still. He doesn't have any white blood cells and probably won't for a while (estimate 21 days after chemo until counts recover). The platelets and red blood cells are low, not low enough to tranfuse today but since it's a three day weekend, Dr. Lamkin thought it would be better. I totally agree.

Happy 4th of July to everyone!!!

Happy Birthday Karen O.! :-)

Tuesday, July 1, 2008

John had his appointment yesterday. All went well. He needed platelets and they have ordered red blood cells for Thursday's appointment. No appointment yet with adult oncology bone marrow doctors. Dr. Lamkin said it is a bit tricky with the pediatric bone marrow team denying John first but it will happen. It will take some time to get it through.

John's been complaining of a stomach ache. It seems to come and go. This experience so different this time around from 2004. John is an "adult" and I try to give him the freedom he needs...which means not nagging about taking his temp. and asking how he is feeling. I do it enough that I get "the look" but honestly, I bite my tongue more times than I don't. I figure I get to ask a couple times a day..that's fair, right??? :-)

We decided this week that John will not attend Oregon State University this fall. There are too many unknowns with his treatment and I don't want to stress about how to make school work within the parameters of medical treatment. He doesn't have to go to school so why create the stress. I also don't want him starting something that is huge for a typical student (moving away from home) without having time to prepare. John is disappointed. He is upset that many of his friends will not be here. I am hoping we will find another activity for him this fall so he keeps his mind busy..besides computer games like WOW. I suggested he get involved with youth or high school football. I don't know if he is ready for that but it's an option.

Thank you for all your support!!!

Saturday, June 28, 2008

Ok, I suck in updating this week. I know busy doesn�t quite cut it for some of you but it�s my reason (and I'm sticking to it...read with smile). When John is feeling good, I am trying to do everything I can and time gets away from me.

Ned�s brother, Jay, came down to visit on Saturday. He spent time with Andrew and Ned. �in fact, had the privilege to bicycle shop with Andrew and Ned. :-) We decided it was time to purchase a better quality bike for Andrew�one that maybe he wouldn�t destroy within a month. Unfortunately, the bicycle market seems to be quite hot right now. I�m assuming the gas prices have made an impact. We found a possible used bike for Andrew and felt we had to be at the bike shop as soon as they opened on Saturday. Andrew did get a nice bicycle (62 inches!!) and he is very happy. We went to Sellwood Cycle Repair in Portland and were very impressed. They sell used as well as new bicycles.

MD Anderson did return my call on Monday. The lady wanted to know about our insurance. I told her it was Kaiser then she asked another question which I didn�t understand. I am not hip on insurance lingo. I basically said we would request Kaiser to refer us to their facility but in the meantime, I needed to know if they could help us. She told me I could have our doctor fax information about John�s medical condition to her. A couple hours later, she called back (I had not faxed any medical information to her). She said she had done some insurance research and Kaiser was not in their �network�. I asked why it would make a difference whether we are in their network or not if Kaiser is willing to refer us and pay for the services. She responded, �I�m sorry. There is nothing we can do for your baby�. I hung up and said some words under my breath I shouldn�t have. What an odd statement to make. I am still confused on the whole insurance issue.

Sharon Olson offered to help me research, which has been wonderful. I would do some research then ask her to double check what I learned. Basically, I wasn�t getting anywhere researching on the internet. I couldn�t find a contact number on Dukes� webpage; I had to call Fred Hutchison. Since I know Kaiser covers Fred Hutchison, I decided to talk to Dr. Lamkin to see if he already contacted them. My dad called and told me about Howard Hughes Research Institute. They are well funded and have successfully researched some types of leukemia. I wasn�t able to find any indication of them actually helping patients directly though. I want to find out more about the acidic/alkaline theory too. There�s a lot of information out there about fighting cancer and it is difficult to know which theory to pursue.

Ned asked about researching facilities for John during Wednesday�s appointment and Dr. Lamkin was surprised we were researching/contacting facilities. He said that is their responsibility and we need to find a doctor first then go through the insurance thing. He also said there are steps that must be done and we haven�t done them yet. He wants John to see an adult oncologist first, which should be next week. We haven�t heard from anyone to schedule an appointment so I'm not sure it will happen next week. Dr. Lamkin said we aren�t to the point yet to find an alternative location. I�m not sure where the communication breakdown occurred but I am more than happy to not have the responsibility of finding an alternative facility to help John. We do need to figure this out since Dr. Lamkin is adamant the chemo protocol John is on will not put John into permanent remission. Dr. Lamkin believes a second transplant is the only possible way for permanent remission and the Doernbecher�s bone marrow transplant team has not agreed to a second bone marrow transplant. They believe the risk is too high.

John has been feeling pretty good. Much better than the last chemo at this time. He sleeps a lot and his mouth is sore. The mouth being sore is earlier than last time but it doesn�t seem to be extremely uncomfortable. I�ve been frustrated with his poor eating choices. I know he doesn�t feel great but I wish he would make healthier choices. He hasn�t embraced diet theories in relationship to cancer.

Andrew is also doing well. He started lifting weights at the high school this week and attending wrestling sessions. We reviewed his summer calendar and he is going to be busy with summer school, football, and wrestling. I remember so looking forward to high school football summer events for John when he was a freshman. It�s nice to get to experience it. We think Andrew may have grown some more�could be 210 pounds and 6�2��he just turned 15�almost out of a size 13 shoe too�maybe he just got his growth spurt early and he�ll slow down. His eating hasn�t slowed down.

Ned is busy with the start of football stuff. Our garage is no longer a place to park my car but to receive boxes and boxes of football equipment.

I heard the Relay for Life event went very well. Still waiting for pictures�hint, hint Helena�

THANK YOU FOR ALL THE WONDERFUL MEALS!!!

Wednesday, June 25, 2008

Please pray for Alexa Aigner's family. Alexa earned her wings this morning. Her link is below. Damn Cancer. My heart is so incredibly heavy. Alexa's grandparents live in Lake Oswego and I found out about her journey several years ago through Marie Samuelson. It just isn't right for kids and their families to endure these journeys.

I will update more later. All is going well for John. John had his Doernbecher appointment today and his counts are good enough to keep us away until next Monday. He may not make it but John knows when he needs red blood cells or platelets. In the meantime, NO INFECTION!!!!!!!!!!!

Sunday, June 22, 2008

JOHN IS HOME!!!

He was hungry when he left the hospital so Ned and John stopped by Costco on the way home to get Tri-tip. I had already gone the grocery store to get potatoes and salad stuff. John was happy, happy, happy! It's so good to see him eat. He needs to build his strength.

John's counts are going down. His next clinic appointment will be Wednesday. We are praying for NO infections while we wait for his counts to recover. It could take 21 days. It makes me extremely nervous now knowing that he is allergic to Vanco. It's the heavy-duty drug. I don't know what the alternative will be and I hope we don't have to find out.

I've called MD Anderson; they will return my call early this week. We will talk to Dr. Lamkin on Wednesday about Fred Hutchison and Duke University. I don't want there to be an opportunity that we missed. Dr. Lamkin may have other ideas too...hopefully. I know he is referring John to adult oncology/bone marrow transplant.

Friday, June 20, 2008 4:23 PM CDT

Relay for Life is tonight in Wilsonville! Please check out the link above.

All is going. John continues to get sick with the first chemo of the day but it's more controlled. He still gets an incredible headache with the chemo so now he's on a PCA pump. Saturday will be his last day of chemo.

John feels better around 11 pm and will play games/cards with the nurses and other teenage patients. He also goes to the cafeteria to get food. It seems to be his recharging time. It's my sleeping time. :-)

Last night around 11:30, the fire alarm went off. It was blaring for quite a while. I don't know if there was a malfuntion, test, or false alarm. I wonder if anyone was able to sleep through it....poor parents of young children. They already look exhausted.

Thursday, June 19, 2008 12:19 AM CDT

John is doing better. He is still sick but it's not as intense as long. The nurses are keeping him well medicated. It's doesn't prevent him from getting sick entirely but it is definitely is helping.

Yes, there is an article in the Wilsonville Spokesman about Johnathon (picture too). The Spokesman did a very nice job. You can read the article online at http://www.wilsonvillenews.com/WVSSports0.shtml

I will be doing some research for other cancer facilities to see if they will take on John's case. I was told to check out Fred Hutchison in Seattle, MD Anderson in Texas, and Duke in N. Carolina. I sure wish I knew what I should be doing...what the cure is.

Kathy Jones is doing well. She visited yesterday and will return to work Friday. I thought for sure she hurt her neck badly. Thank goodness she is ok. She is sore though.

Tuesday, June 17, 2008

5:00 pm

John�s chemo actually started last night. I had assumed it would be the same as last time so he would be hydrated for 12 hours prior to the first chemo�I was wrong. It was only one hour of hydration this time.

John did well with the chemo last night, Ara-C. He is getting the same two chemos as last time. The Clofarabine was started at 2:45 pm today and within 30 minutes he was sick and he hasn�t stopped. We thought we figured out a good anti-nausea medicine from last chemo experience but evidently not. He has Aprepitant medicine ready when he feels he can hold it down. There isn�t a lot of choices left to help his nausea. We hope this works!! He will get his Ara-C at 6:45 pm.

Andrew had a nice eighth grade celebration last Wednesday. I didn�t realize how large his class is! It was an odd feeling to know he is done with middle school. He has had tremendous support there. I know the high school will also provide wonderful support but it will be change and Andrew has difficulty with change.

Andrew started high school football camp last week too. I thought Andrew wouldn�t look small next to the high school guys�I was wrong (gosh is this a pattern!!). The coaches put him with the line and Andrew was dwarfed next to some players. I kept thinking how does their momma�s keep them fed�

Please read about the Relay for Life above. I know Lisa would appreciate any contributions or walkers to her team. You can also order luminaries online in honor, in support, or in memory of anyone affected by cancer. The luminaries will be placed around the track and lit when it gets dark. It is very cool. The Wilsonville Relay for Life is June 20th.

We recently received a wedding invitation from friend Deidre and Mike. With their invitation was a very kind note asking people to donate to Walls Family Fund at Washington Mutual Bank instead of giving them something. They set up the account. We had no idea. Deidre and Mike wrote some very nice things about our family and our cancer journeys. Thank you Diedre and Mike.

Janna gave me a care package for the hospital. Three magazines (like People) and chocolate!! I try to read at the hospital and sometimes only see words. Books aren�t so good when you miss pages of information. I don�t need to track what I am reading with People!

We are incredibly blessed by all the support of family, friends, and community. I don�t know how we�d have the strength we do without it. Thank you for all your prayers. We are still praying for a miracle.

As I was writing this, I heard a large sound then screams. At first I thought it was a child running into something then yelling. However, the screams didn�t stop. I went out to the hallway and our favorite CNA, Kathy Jones, in on the floor. She is commenting her neck hurts. She has been taken to the ER. Please pray for her.

Monday, June 16, 2008

Quick update.

Dr. Lamkin spoke to Ned and John when John was being admitted. Basically, nothing new. Bone Marrow Team confirmed they will not do a second bone marrow transplant on John. They aren't convinced a bone marrow transplant would keep John in remission and they are afraid the process would kill him. Dr. Lamkin says John's odds are low for remission and he feels the only way is with a another bone marrow transplant. Dr. Lamkin is referring John to the adult bone marrow transplant team and said he wouldn't blame us if we looked in to Fred Hutchison in Seattle.

It is so hard to grasp this. John looks so good.

Sunday, June 15, 2008

Happy Father's Day!

Sorry for the lack of updating. It's been nice to have a week off. I needed some time to remove myself from the reality. Even though I can't do that completely, I could some.

It's been a busy week. Andrew graduated from 8th grade; John's been feeling relatively so he has been hanging with friends and working at Domino's. John had an appointment on Monday but they cancelled Thursday's appointment. It's been a good week of not being around Doernbecher's.

John will be admitted tomorrow to start his next round of chemo tomorrow. It will be the same as last time. Hydration for the first day, six days of two types of chemo, and wait for 21 days for John's counts to recover. I am definitely nervous about the waiting part. If John gets an infection, there aren't very many antibiotics that he isn't allergic too. I will try to keep that fear buried and we won't have to experience it.

Dr. Lamkin told us last week that they will discuss bone marrow transplant options tomorrow. All I know at this point is Dr. Lamkin says a bone marrow transplant is the only way to permanent remission and the bone marrow team believes John won't survive another bone marrow transplant. Ned said the bone marrow transplant team thinks the leukemia was able to come back because of the intense GVHD and the immune suppressant medicines they had to give John to deal with the GVHD.

John is looking good. He gets tired easily.

I will write more about our week while John is inpatient.

Sunday, June 8, 2008

Graduation was beautiful.

Graduation was held outside at the stadium. Wilsonville High School has a beautiful stadium and the school has yet to have rain during graduation�until this year. It definitely wasn�t looking good and the school was considering moving the ceremony into the gym and limiting the number of family members to attend. It was decided Friday morning that it would be too difficult to make that change and the stadium was a go. The school supplied each graduate with a clear poncho.

It never �rained� during the ceremony. It sprinkled twice and it was windy but for the spectators in the stands, it was like attending a fall football game. We were bundled and packed in like sardines.

Stephanie Fisher, Louise (Ned�s sister) and myself were in line at 6 pm for the gates to open at 7 pm and graduation to start at 8:15 pm. We were third in line. I wanted to make sure I had enough seats for friends and family to attend. We had our game plan when the gates opened and off we went at a fast walk�then kids who were in line behind us started running past us. I am thinking, �There�s no way I am losing decent seats to kids�� and yep�off we started running too. Must have been a sight to see!! We got to the seats and I see our first choice is already taken, I hesitate looking for our second choice, and I could see a swarm of people descending upon us snatching up seats everywhere. I yell to Stephanie and Louise �grab these� and we basically threw ourselves on three rows. Again, must have been a sight to see. Ned, Andrew, my parents, and my brother & his family didn�t have to arrive until much later. The school gave us reserved parking. Louise, I and Stephanie �guarded� seats for an hour and during this time, there were no visible empty seats in the stadium besides ours. We received many glares but it was all good. I was watching my son graduate with family and friends and we had good seats. No one tried to sit in our �space��I�m sure my momma bear look had nothing to do with it. Ha, ha!

The graduation was probably the best I have been too. Each speaker did a great job...a lot humor. There were 280 graduates and the graduation lasted less than two hours. Not bad! It was interesting listening to many stories being told by the speakers and realizing how much we�ve missed out on. The kids have had so many experiences and grown up without us being a part of it. In some ways, it felt like we had been sleeping for the last four years to wake up on graduation day.

When John�s name was called to get his diploma, I was ready with camera. I could hear people clapping and it seemed like a long time for the next name to be called. I was told the class stood up as well as people in the stadium. The long pause to the next person was to allow the noise to subside. Amazing. We are so blessed to be a part of this wonderful community.

When the ceremony ended, Ned and I went immediately to the field to find Johnathon�and we couldn�t find him. My brother finally found us to bring us to John. They found him right away. John looked so pasty. He looked like he could use red blood cells but he shouldn�t with his counts going up. John had to be at school at 9 am for senior picture , breakfast, and practice. He didn�t feel well towards the end and came home early. He took a nap but he was still tired prior to graduation. I think it may have been too much especially with the emotions of it all. He wanted to go to the grad night party. We said our good-byes and we went home. It was an odd feeling not having John with us.

John text at 1:30 am and said he wasn�t feeling well. He said it was very hot there, he couldn�t find any water, he was tired, and most of the activities he couldn�t participate in. We asked where he was (it was a secret to the seniors until they arrived) and he was in Vancouver. Argh. I told him to go find someone to help him out with water and get me an address. The next text I received was he was on his way home. The Doty�s were done with their shift and offered to bring him home. Thank you so much Doty�s!! When John got home, he went right to bed. He woke up looking and feeling much better.

I can�t believe graduation is over and John is done with high school. I can�t shake the feeling that we were cheated out of so many experiences. It is what it is but it sucks. I want him to be able to experience college next fall and he won�t be able to do that. There are so many normal experiences I want him to have and what we have is the cancer journey and its huge unknowns. Graduation allowed us a reprieve from the cancer journey into the realm of normal. I don�t want to face reality.

Thursday, June 5, 2008

New photos are loaded!!!

Wednesday, June 4, 2008

Last night's senior awards banquet was very special. Wilsonville High School retired football jersey #44. Coach Sommer made a wonderful speech before presenting the framed jersey to Johnathon. Ned, I, and Jim Beltz knew beforehand and were ready with cameras. The expression on John's face was absolutely priceless. When John went up to the podium to receive the gift, the audience all stood up. It was an indescribable feeling. I am getting teary eyed now just thinking about it. Thank you to everyone.

Thank you Julie for reserving us front row seats so we didn�t have to arrive early. Thank you to Coach Sommer and the staff for presenting the jersey to John early in the evening. John did relatively well and we made it through at least 2/3 of the evening. However, once John started feeling ill, it didn�t take long before we needed to leave �now�.

One of the things the school told me in the last week was John had the choice to keep the jersey or give it back to WHS and they will hang it at the school. I told John this during the banquet and he immediately said he would like the school to hang it. We will have the jersey at the house until the school lets us know they are ready for it.

Since we were prepared for this presentation, we have video and pictures. Unfortunately, I don�t know how to download pictures yet with our camera and I have never downloaded video to U-tube. We�ll get it figured out soon. The #44 white jersey is framed with a football picture of John and an inscription that reads,

John Walls
If you can imagine it, you can achieve it.
If you can dream it, you can become it.
Live strong.
Class of 2008 Wilsonville High School

Monday, June 2, 2008

JOHN'S COUNTS ARE RECOVERING!!!! The appointment wasn't as fast as I hoped but we received great news about his counts.

John woke up not feeling well and before we got to Doernbecher's, he got sick. It seemed like forever to get checked in and get him a room with a bed. John was almost one with the chair upholstery in the waiting area.

Once we went back to the room, John immediately asked for Benadryl. I need to start bringing it with me so we don't need to wait for an order then for the nurse to bring it in. I'm not sure why I haven't quite caught on to bringing our own medicine. Duh.

John's white blood cell count and platelets have increased! Dr. Lamkin said this can be considered a bone marrow recovery. John's ANC is at 300 and platelets are 173. An ANC under 500 is neutropenic. I asked what restrictions John has and Dr. Lamkin said none except for swimming. Seems like an obvious exception but we knew a teenager who had a Hickman and swam in the Willamette river. He got a nasty infection.

Dr. Lamkin said John doesn�t need to come to Thursday's appointment. I squealed with excitement and John replies I want to come back to get my PICC line dressing changed. Ok�at least it will be a short appointment!

Dr. Lamkin said the earliest the next round of chemo will start is next week. John asked for a week where he has full counts to do what he wants. Dr. Lamkin agreed. Dr. Lamkin mentioned he spoke to Dr. Nemecek about John but hasn�t discussed anything in depth.

Dr. Nemecek spoke to me in the hallway (I was getting soda�popcycle�whatever John needs). :-) She asked if it was hard to find a match to John. She wasn�t here when we started our bone marrow journey. I told her I was told several matches were found quickly. She commented it could be difficult to find John�s donor. I told her we were given his information a couple months ago; I tried contacting him but haven�t received a response. She said I can no longer make any more attempts. She will talk to us about more options when John is inpatient. She needs to see what is available to decide what options are possible. She is very pleased to see John responding to the chemo treatment. She said John would have to be in remission to attempt anything and he needs to have a few rounds of the current protocol.

Thank you so much to MCSO for your wonderful gift cards!!! We are getting things done for the boys. Andrew has several bikes that need work. He tries to fix them himself but he rides his bikes hard and they need professional tune up and the parts. A bike shop just opened up in town. Perfect!! John is seeing Dr. LaJoie, a local chiropractor, a couple times a week. Our insurance does not cover chiropractic care so it nice to have some appointments taken care of.

John went to see a movie last night and called Ned on his way to the theater (note..at 11 pm!). His car engine light came on and the engine gage was registering too hot. Ned told him to go watch the movie and we would bring him antifreeze. John got home ok and we are taking his truck to Lance�s Superior Auto Service today. I called this morning and Carrie said to bring it in and they�d take a look. Love that place!!! (and it's next door to the bike shop...convenient!!)

Looks like tomorrow night�s Senior Banquet is a go as long as John is feeling well!!

Sunday, June 1, 2008

All continues to go well.

I notice we are a bit more relaxed lately. At least, I'm not feeling John's forehead a couple times a day. John's color is better and he has more energy. He is doing more and acting more like himself (which includes arguing with his brother...argh! Even though it's annoying, it's nice to have normal.) :-)

Tomorrow John has an appt. at Doernbecher's. We'll see where his counts are. Hopefully, we are lucky like my dad was last Thursday and we'll get to come home relatively quickly!

My cousin Kelsey (Aunt Joanne's daughter) graduated today. Congrats Kelsey! John really wanted to go to her graduation but it was indoors. He was willing to take the chance and Ned & I said no. It was too far from Doernbecher's if John was to have any problems. We were at her graduation in spirit!!

John's class last day of school was Friday. John wanted to go hang with his friends so bad. We told him he could have friends come here but that isn't a fun way for kids to celebrate their last day of school. It was a mixed feeling day. Such excitement to know his class is done but so much disappointment that he isn't able to be a part of it. Cancer does take so much away. John's spirits are good though.

John's class has their senior banquet Tuesday night and we are hoping he will have blood counts so he can attend. The school staff is reserving seats for us so we can go at late as possible to limit exposure. The high school staff has been so wonderful. They have been calling all week to make sure they are doing everything possible so John can attend as many things as possible.

Wilsonville ROCKS!!

Thursday, May 29, 2008

1:30 pm - John is back from Doernbecher's. His appointment went much faster than anticipated...he didn't need red blood cells!! My dad offered to take him and I was a bit freaked when John called and said they were on their way home. Luckily John explained himself relatively quickly so my heart settled down.

Now the fun part...what did Dr. Lamkin exactly say....John says he doesn't know, he didn't really listen...my dad said it was hard to understand what Dr. Lamkin was talking about...ohhhhhh. Heres what I got...my dad said Dr. Lamkin wasn't sure what the increase in the red blood cell count means. It could be the result of receiving platelets on Tuesday or it could be that the marrow is starting to recover. My dad thought Dr. Lamkin was happy with what he saw. I'm good with that. It's what I thought too....not that I am medical expert but it makes sense with what I do understand.

Today my aunt Peggy gets her second chemo treatment. She did relatively well with the first dose. It is such a different journey. It makes me realize what a tough journey John has even in the cancer world. Any cancer is bad but there are some protocols that are far more difficult than others.

Tuesday, May 27, 2008

6:00 pm - We are home. John did need platelets and he could have used red blood cells. Unfortunately, since we had a 1:30 appointment, there was not enough time for a blood transfusion. He will get that at Thursday's appointment. The good news is that they have already tested his blood today(antibiodies can change so they have to test John's blood for every transfusion; the blood will be ready for him on Thursday. No waiting for it. He will need to two bags..hence, it will still be a few hours at the clinic. John actually wanted the red blood cells transfusion today. He's been feeling tired.

Dr. Lamkin said the sore mouth is from the ARA-C. It can hit a couple weeks after receiving the chemo, like it has. Dr. Lamkin is concerned there could be an infection brewing in John's mouth so we are to call if anything "different" happens. We aren't to let things slide if John has symptoms we recognize from other experiences. I didn't really like the sounds of that but he reminded us (several times) that they don't let people go home on this protocol and we need to be very careful. It is very nice to be home...and also scary. I tend to sneak into John's room during the night to feel his forehead. What if a fever started during the night and he slept through it? I irritate John but I guess that is right on target for a mom of a teenager. :-) In the meantime, we'll try to figure out ways to deal with the mouth pain. It's very painful to eat. John literally powers though the pain during meals.

Dr. Lamkin plans to talk to the bone marrow team next Tuesday. He is still unsure what can be done to put John into permanent remission. It's hard to grasp there isn't some protocol out there for this. As Dr. Lamkin put it, it's not what John's has as much as it's the third relapse...relapse is bad. Damn leukemia.

Can you believe the news about Chili's? Chili's is one of John's fav restaurants. ARGH! I heard two will remain open but only one in the Portland area. I didn't see this one coming. Chili's always seemed busy.

Monday, May 26, 2008

All continues to go well.

John's skin is healing. He is not itching all the time anymore; now his skin looks extremely dry. We keep watching for fevers and so far so good. YEA! He is probably ready for platelets and/or red blood cells but John doesn't want to go to ER. I don't think it's absolutely needed yet so we are waiting. John has an appointment at Doernbechers tomorrow afternoon so hopefully we'll make it until then. John's mouth is pretty sore. We don't know what from.

Lisa Willett brought us meat filled crepes for dinner on Friday. Fantastic!! What a treat! I have only had breakfast crepes. Yesterday, Debbe Bowen brought over homemade lasagna. Another treat! Thank you so much!! It truly helps relieve stress. I'm always waiting for the moment John yells fever. Our suitcases are empty but easily accessible. You just never know which moment will be the last to get things done around the house.

A friend who is a hairdresser came over today to cut John's hair. We never had the opportunity to get it done before he got so sick. We thought he'd be fine after the bone marrow aspirate and we could things done that week. Now that his immune system is suppressed, I was nervous about going to a salon. It's nice to have his hair tamed again.

John's been keeping relatively busy. Friends come over to visit periodically. Yesterday he went to a friend's house then to a movie. Ned and I weren't thrilled with it but John needs to enjoy life and he is making decisions knowing what the risks are. Trying to respect an 18 year old wishes but keep them within reasonable boundaries is interesting.

There are so many thoughtful people helping us out. We are blessed with all the support and prayers of so many.

Friday, May 23, 2008

Happy Friday!

All is going well.

We received a call a few days ago about the Wilsonville High School reader board. They put on it "Go Fight Win John Walls 44". We drove by and what an amazing feeling of support. Thank you so much WHS! (the picture should be posted)

Coach Sommer visited last night and he gave to Johnathon a football helmet signed (with notes) by the senior football players. VERY cool. Coach also brought over a football plate filled with homemade cookies. Thank you Bobbi!! Thank you Coach!!

Thursday, May 22, 2008

Good day!

John had an appointment at Doernbecher's this morning and I thought for sure we'd be there all day while John would get blood and platelet transfusions...I was wrong!! Yea! His red blood cell count was good and the platelets were a bit low. Dr. Lamkin said if they gave him platelets today, they'd be gone by Saturday so there's no reason to do it today. John will pay attention to low platelet signs and as soon as he notices any, we'll head up to OHSU ER.

I gave Dr. Lamkin the paperwork we had prepared yesterday at the attorney's office. He immediately looked at me and asked if he requested these documents. I said no. He commented that he's never any one prepare these without him requesting them and how amazing it is we got it done. I think we aren't like the typical family; we have experienced where things can change incredibly fast. They have also scared the heck out us with John's odds.

I asked about John's graduation. Dr. Lamkin said chemo won't start again until John's counts recover and if John's counts recover before graduation, he won't begin the chemo until after graduation. Dr. Lamkin feels it is very important for John to attend, with or without counts. It appears the only way John won't be at graduation is if he has an infection and is stuck in the hospital. Even if he is the hospital, Doernbecher's is willing to set up a live feed from John's room so he can be there. It would be absolutely wonderful if he did have counts and could attend the senior gradution party. We'll see...

John's skin is looking better. The rash is less red and itchy. His skin is peeling like a healing sunburn.

Dr. Lamkin still doesn't know what will happen after a couple rounds of chemo. He is happy the chemo is taking away the masses. He also isn't sure what is going on with John's skin; he is not convinced it's all a Vanco reaction. He said if the skin doesn't get better soon then he will probably biopsy it. I asked if it could be GVHD and he said he is done guessing with John. It shouldn't be but you never know with John.

Andrew had a very nice birthday. Thank you Gaylen Cashman for the birthday lunch and Lisa Willett for the bithday cookie. I took Andrew to Red Robin's for dinner and the staff sang to him. Andrew was a good sport and stood up on the chair while they sang. I definitely got the "look" but it was worth it!

Wednesday, May 21, 2008

Happy 14th Birthday Andrew!!!

All is well. John is getting stronger each day. He is eating more.

We are seeing Mark Holady, attorney, today. We need to get a few documents done with Johnathon and neither Ned or I have been able to do it....just too hard. Since John is 18, there is more to consider. It will be nice to have it done. I've been stressing about it. Ned and I know what John wants and I don't want any road blocks to allow those decisions. I am relieved Mark is able to help us. We've known him for years and consider him a good friend. I know he will make sure we've done everything we should. This sucks. However, everyone with a child 18 or over should do this. I wish we would have done it when things were more "normal".

Thank you to the Carlson family for a wonderful dinner last night!!

Monday, May 19, 2008

10:00 pm - John is on his way home!!!!!!!!!!!!!!!

Sunday, May 18, 2008

Sorry for the late entry. All is well.

Yesterday I came home to work and asked John if he would like me to make his favorite meal, Oriental V Chicken (anyone who has the Oregon Cookbook...try it!! It rocks.) He said yes. I'll do just about anything to temp him with food. Andrew and I took it up to him and John did eat some. Not his normal amount but at least he ate. John said his taste buds are messed up and he can't taste very much.

Andrew and John played X-box for a while. It was nice to be together as a family. It hasn't happened very much lately. Andrew is handling everything ok. He understands so much more this time especially the risk of losing John.

While we were all hanging out, John was having incredibly itchy skin. He just couldn't stop itching. Ned and I would keep reminding him to stop. We are worried with the low immune system that he may create an infection by itching his skin. I asked John what Dr. Chang said and John said he didn't tell him. Hum, if John was this itchy, you wouldn't need to tell him. I wouldn't think Vanco would still be causing this and that is when I looked at his IV pole and saw the empty new antibiotic bag..could it be he is reacting to the new antibiotic? John notices both of his ankles are very swollen.

Ned and Andrew left. John and I watched Juno. I noticed John's itching getting better. Around 11:30 pm, John asked me to go get him ice cream from the cafeteria. I typically don't do midnight runs but right now, no problem. Off I went. I picked him a salad too..just in case. John devoured the salad. The ice cream was the wrong flavor and ignored. Oops.

I didn't notice John itching very much all night and this morning. He was given the antibiotic and BANG. He was an itching maniac. Dr. Chang came in during his rounds and asks how things are going. He notices John's red face, arms, legs, etc. and his non-stop itching. I told him he was doing ok until this antibiotic started. Dr. Chang immediately said there is only bleach available after this medicine and we don't want to give you that. John said he can handle the rash and itching. Dr. Chang suggested giving Benadryl right before the antibiotic to help offset the reaction proactively instead of reactively. He also said if John can stay fever free for 24 hours, he can go home tomorrow. MAJOR YAHOO!!

Andrew's birthday is Wednesday. He will be 14 years old. Amazing. Ned has a football meeting at a restaurant that night so he told Andrew he could get whatever he wants off the menu. Not the perfect birthday dinner but it will have to do. Ned will take the day off which will definitely make Andrew very happy. Andrew would like to have a birthday party but there's no way we can do that with John's suppressed immune system. If all goes well and John is home, we'll figure out something.

Dina Ochs brought over homemade lasagna (which is another meal my family typically gets from Costco..frozen). I am going to save it for tomorrow night so we can all eat it together as a family. Thank you Dina!! It looks fantastic!!! My family may never want Costco frozen lasagna again! Can we just place an order periodically?? :-)

Saturday, May 17, 2008

3:30 pm - Ned called and John's temp is normal! He's on Tylenol but we haven't hit normal yet on. John is now getting platelets. With his blood cell count going down, he will start having platelet and red blood transfusions as needed.

Red Cross calls us a lot about donating platelets. They are typically low. If you want to do something to help John, donating platelets and blood is a wonderful way to help him and others who need transfusions to live.

2:30 pm - John has been moved to Floor 10, South, Room 15!! YEA!! Floor 9 was fine but floor 10 is better for John...and me too...now I won't go to the wrong floor. :-)

Noonish: Fever continues. It's been as high as 103.5 and as low as 99.5. Unfortunately, the higher came after the lower. John is on Tylenol and I'm sure that causes the variance. The nurse told us to lower the temp in John's room to help his fever. As some of you know, John likes the room cold normally. However, this room hasn't been easy to get cold like he likes it.

IV therapy came yesterday and his PICC (peripherally inserted central catheter) blocked lumen is fine. It was the tip malfunctioning. John said the ER nurse changed it and the IV therapy people had to work with the line bit to get it working but all is well. YEA!! For a visual of this line, imagine two tubes coming out of John's upper arm. Each one can be hooked up to an IV. The lines go towards the area of his heart. As I understand it, chemo can damage veins and the PICC, Hickman, or Port protects the veins.

I almost took out a CNA this morning. CNA's come in the room every four hours or so to take vitals, empty pee jugs, etc. Hence, we are kind of used to it. This morning the CNA decided to leave the bathroom door open with the light on while dumping pee jugs and flushing the toilet. The light hits directly where I sleep. She then decides to start asking John questions and leaves the main door open to our room. John doesn't have an immune system and he is not allowed out in the hallway. I think leaving the door open isn't a great idea and it also lights up the room, especially John's bed. Once she left the room, John and I were both awake. Sleep is so precious, it's discouraging when someone doesn't use common courtesy. I mentioned what happened the night nurse and her reply was, "I suggest you get to floor 10 as soon as you can." Why should it make any difference? Whether you are long term or short term patient, any one working in pediatrics should be even more aware of minimizing disruptions. What if John was a young child and couldn't go back to sleep? I may request no CNAs tonight and ask the night nurse to take vitals. The floor is relatively empty. Nurses are being sent home this afternoon so the nurses may have the time to do it. We'll see.

Funny story...yesterday morning, I went to get my coffee. Starbucks is in the lobby of Doernbecher's. I came back to the floor and noticed a nurse I know. She saw me and commented she didn't realize John was back. I told her that he was admitted through ER last night...then I notice other nurses I know. I immediately ask her what floor I am on...she replies 10. OMG. I went to automatic mode and went to the floor I am accustomed too. I told her I was on the wrong floor and immediately walked out. Oh my. I wonder if I would have figured it out before I went into someone else's room. The floors do look very similar but...aaahhhh!!

Ned is hanging out with John today while I get some work done. John requested food this morning and we are trying to get him to eat as much as we can. John really hasn't eaten anything since being admitted. His weight loss is noticeable. Ned arrived with a sack full of different food. When I was leaving, he was also leaving to go get additional food. Hopefully John will start eating more today and keep it down.

As for the fever, Dr. Chang thought the Vanco reaction would only last 12 hours after receiving Vanco. We are well beyond that now. John still has itchy, red skin. I left before doctors made their rounds. I haven't heard that the cultures have grown anything.

One day at a time!

Friday, May 16, 2008

6:45 pm -

John is still running fever; it's been as high as 103.5 this afternoon. Dr. Chang said this still could be a reaction to the Vanco but it's an unknown. They have started a second medicine to replace the Vanco (don't remember the name). Today's events have been somewhat foggy..lots of nappy trying to catch up on sleep.

John's legs still are very red with welts. The back of the legs are starting to peel. It's almost like he got a bad sunburn, started to heal, then got another bad sunburn. The itching is uncomfortable so they are keeping him on Benadryl.

At 1 pm, the pain management team stopped by and asked if John quit taking pain medicine because John's day nurse said he had not given John any. (Ok, imagine head starting to spin) I told her John is on the same dose we went home on and I showed the medicine spreadsheet I created to the night nurse and I documented all medicines, doses, when they were given, and when the next dose was due on the admit sheet when we arrived to floor nine. The pain management team left to go find out what is going on. She returned and said the secretary had the order and didn't transfer it so it wasn't added to John's medicine sheet. Holy crap. This new computer system is not providing confidence. John was four hours late getting his pain medicines. I really don't want to add withdrawals to the existing symptoms and wonder which thing is doing what.

Hopefully the fever will go away soon and stay away.

11:00 am -

What a night.

We arrive at ER and immediately let them know John doesn't have an immune system. They take John's temp and it's normal. HUH?? The nurse tells us to have a seat. Doubt HUH? You look around and there very sick people everywhere. We try to stand in a corner by ourselves to limit John's exposure. He is wearing a mask but we know there is debate to whether those are effective. After waiting for a while, we decided to find a seat furtherest away from people. John gets a room within 30 minutes...I guess that isn't bad for ER but I was nervous with what was going on inside him (possible infection) and the germ exposure.

The ER doctor cames in and informed us we may be spending the night there. Doernbecher's is full. I am on a regular chair, wondering how this is going to work. We have no choice. It is what it is.

The nurse takes cultures and one lumen isn't working. John freaks. They were both working in the morning when the IV nurse changed the dressing. Luckly one lumen is enough but the put in an IV in his hand to be safe.

First antibiotic goes in...no problem. John is sleeping and I sleep here and there sitting up on the chair. The nurse said she would get me a chair that makes out into a bed but there are really busy and she can't find a CNA.

In the meantime, there is a young male in the room next to us. We have a room where the sliding door won't stay shut...bad for noise and bad for germ protection. This kid is extremely drunk and upset. He calls out for his mom many times and thrashes around. They had to restrain him. We could hear the nurses and doctors trying to settle him down. We also experienced several traumas and police escorting some patients. An interesting night.

A CNA did bring in a chair bed and I got some sleep.

Vanco starts and John gets a terrible rash. He is itching all the time and he is miserable.

Around 3:30 am, the nurse informed us a room is ready on floor 9 and she was going to transport John. Two doctors then walked in and said John was not going to be transported. His pressure is low and they need to get another IV fluid bag in him. They came back a few minutes later and said they thought it could be related to the Vanco since his pressure was fine until then.

We get to floor nine and John is now running a temp of 102. His legs are flaming red and he gets sick. It's going to take a while to get Tylenol pills approved so he is offered liquid. Love the new computer system.

I think I went to sleep around 5:30 am. I was so exhausted I couldn't wake up enough when the nurse came in periodically to see where John's temp was. Scary.

Dr. Chang did rounds this morning. He said they are officially stating John is allergic to Vanco. They don't know what else works on Strep Veradance (bug John had in ICU). They will be researching an alternative. He said if John stays fever free for 24 hours and doesn't grow a culture then he MIGHT be able to go home in 3 or 4 days. It's hard to know what is going on right now. I want to believe it's the Vanco. John didn't have any symptoms besides a slight fever last night.

John is sleeping. IV therapy will come by sometime today to see if they can get the one lumen working. I sure hope they can. Lines really stress John out.

Floor nine doesn't have computers. I left the laptop at home because I didn't want it sitting in my car while in ER. It will be more difficult to update.

Friday, May 15, 2008

11:30 pm - John has a fever. We are leaving for OHSU ER so John can be admitted.

Thursday, May 15, 2008

2:00 pm - Longer than expect appointment. John got sick when we arrived so they had to order Zophran for him. He's been doing so good.

It's official..John doesn't have an immune system. As soon as he runs a fever of 100, we are to call Doernbecher and he will be admitted. It is rare where someone doesn't get a fever but it could happen. Wouldn't that be nice?

Dr. Lamkin said John can see a movie...and what did I hear..."I told you so, mom." Made me smile. John can be predictable!

Morning: John is doing better. His eye is feeling better and he hasn't been nauseated. I have quit giving him anti-nausea medication too. Yahoo!
Yesterday Lucas, Tommy, and Shane came over to visit. John wanted to go to a movie and Ned & I were not comfortable with that. We don�t know where his white count is. It was hard to decide whether to allow him to live his life or protect him from germs. Of course, Ned & I prefer to protect him with the thought he will have many more opportunities. The boys were great and they switched gears. They all went out to eat instead and that appear to work for John.

Andrew is good. I�m not sure what he had yesterday but the early morning was the worst of it.

Today is trip to Doernbechers for a blood count. They may change his PIC dressing and flush both lines. With the PIC, I don�t have to do any maintenance like on the Hickman.

Lisa Willett will organize meals. The information is above. Thank you.

Thank you for your prayers!

Wednesday, May 14, 2008

Happy Birthday Mom!

John is home.

I tried to update yesterday morning and after three attempts and the computer system telling me the internet is down, I gave up. It didn�t make sense since I was writing the update while being logged on the internet. The rooms have MACs and I�m still learning how to navigate. Maybe it was something I did.

Dr. Chang told us yesterday that it was up to us when to go home. I told him I wanted to see how John handled the Vanco before he was discharged. They ran the Vanco over three hours and John got sick and Red Mans on his legs. The Red Mans is now painful and makes his legs hot. It happened during the night and nurse Tina gave him ice packs to help with the pain. I�m not overly comfortable going home if he is going to react uncomfortably. Vanco is administered every 12 hours so that means 6 hours of every day he will react and the reaction continues after the Vanco stops.

Dr. Chang said if John reacts again, he will probably stop the Vanco. I felt a bit of relief but also concern because Vanco keeps the bug away that put John into ICU. Dr. Chang explained the negatives outweigh the positives since we don�t know if John will get the same bug or not. Also John will be on a wide spectrum antibiotic. Well, John did react again. The Vanco stopped at 2 pm and we waited until 3 pm to be discharged. John wasn�t feeling well and his legs were on fire but he was ready to go home.

Dr. Chang said John�s immune system will bottom out later this week and it will be 21 days before it will recover. I commented about 21 days being a longtime and he said it was the same amount of the time as before. Boy, did I suppress a lot of first journey experiences.

Dr. Chang said there are relatively few restrictions for John for food. We should make sure we wash all vegetables and fruit. We can either use water or the fruit wash. We have to stay away from construction dirt�it carries a deadly fungus. He said don�t go to salad bars or all you can eat restaurants�I think all restaurants will be out. Why take the chance�

Our nurse came in with two pages of medicine for John to go home on. I explained how now since John is 18, the Doernbecher pharmacy won�t fill his prescriptions. Kaiser will cover it but evidently Doernbecher pharmacy doesn�t have a code for adult Kaiser patient still covered under pediatrics. This wasn�t a big deal while John was feeling well but it�s a big deal now. I asked the nurse to fax the prescriptions to Kaiser Tualatin to make sure they have everything we need. She did and they didn�t have one in stock. They will order it but it will take a few days. Doernbecher�s pharmacy agreed to give me a few days of it to get us by. Kaiser pharmacy closes at 6 pm�we were getting discharged at 4 pm. If John didn�t feel well, I would need to get home then backtrack to Tualatin to get his prescriptions. I would also need to make sure someone is home with Johnathon. Tualatin pharmacy is inside a clinic. I was definitely not thrilled to get exposed to germs unnecessarily. Typically people are at the clinic because they are sick�John is immune suppressed. I can�t get sick.

John did fairly well on the way home but wanted to get home. Traffic was moving�YEA!! Andrew was home from school so he became nurse while I headed out at 5 pm to Tualatin. I get to the pharmacy and the pharmacy assistant tells me they don�t have two prescriptions on hand. I�m sure my head started to spin. I told her they should have told me that while at Doernbechers and my son needed his medicines tonight. She said she would get the pharmacist and she never came back to my window. ..only the pharmacists dealt with me. The pharmacist said the second prescription was on hand, just not at the quantity it was written for. He asked if I needed it today. I immediately said yes�doesn�t the prescription write-up pretty much tell them that. Anyway, they ended up having 18 days worth. It all worked out. The pharmacy assistant should have been provided more information to begin with. John is taking about 10 pills twice a day�I didn�t miss organizing and tracking pills.

When I arrive home, John was complaining his right eye hurt. Of course, we are concerned about his eyes with the ARA-C and past problems we had. Luckily while waiting in line at the Kaiser pharmacy, I saw eye drops and picked up a bottle. John said they eye drops would help for a few minutes then the eye would start to hurt again. ARGH!

John had a few visitors last night. He did fairly well but didn�t have the stamina. He started to fall asleep during the visit. However, during the visit, he didn�t complain about his eye. Later, he said his eye hurt but it was better.

Around 1:45 am this morning, I felt someone shaking me. It was John. The itching was uncomfortable and he needed some Benadryl. I get up and take care of him. I get back to bed and my mind is out of control worrying about John, about his reaction to Vanco and the possible need for it in the future, the unknown future, the likelihood of him not beating this and having to go through all the chemo and its side effects. Night time is wicked. I got back to sleep to wake up at 4:45 am to someone gagging. I jumped out of bed and ran. It was Andrew. He is sick.

Renee� Aufenthie made us dinner for tonight. Homemade macaroni & cheese and Sloppy Joes�more dishes I don�t make. My kids get Kraft macaroni & cheese and canned sloppy joes. I really do enjoying cooking; I just don�t make the dishes that have been provided. What a treat! Thank you Renee�!

I�ve had several people ask about preparing meals. It�s been difficult to accept since I know I can do it. However, after the last few meals, I�ve found it is such a relief to not worry about meal prep. There are so many things to keep track of; it�s nice to not worry about meals. I�ve heard Lisa Willette has agreed to put together a calendar. Once I get more information, I will add it the website so if anyone is interested in preparing a meal, you can contact her.

Thank you for all your prayers, guestbook entries, e-mails, phone calls, etc. You provide us incredible strength.

Monday, May 12, 2008

Evening: John did not come home today. He wasn't overly excited to leave and the nurses informed him tonight that they couldn't have everything ready in time anyway. We are hoping tomorrow!

Jim and Karen Olsen surprised us with dinner tonight. Homemade meatballs...WOW! They also brought over Caesar salad...John's fav. I am making a plate to bring to him. Hopefully this will tempt his tastebuds!! I sure enjoyed it!!! The only meatballs my family gets (from me) are the frozen ones from Costco! Thank you!!

I can hear Janna and Kim sneezing in John's room...confirmation that he doesn't dust! I should have provided dust masks!! :-)

Morning: Somehow the doctors and nurses were wrong yesterday about the chemo. John was done with ARA-C yesterday, not the one that makes him sick. He started receiving his last dose this morning.

Ned arrived yesterday afternoon to stay with John until this evening so I could get work done. It's been nice having time with Andrew and to do normal house chores. Janna Sondenaa and Kim Gahan are coming over this evening to Pine-Sol John's room. I don't want to take any chances with germs/molds etc. I doubt there are in in his room but he's a teenager and cleaning is not his number one priority. John wasn't excited about anyone cleaning his room. I'm sure it's a privacy issue; maybe it won't be so bad if someone other than family is doing it. I don't know. Thank you Janna and Kim.

Ned said this morning that John felt pretty good yesterday early afternoon and then got sick several times during chemo in the late afternoon. He didn't feel better until he received his scheduled dose of anti-nausea medication. Ned isn't sure John received his mid-day dose. Even though John feels ok periodically, he still isn't eating. He says he feels full. Maybe when we get him home, we can start tempting with foods he can't resist. Hard to do that with hospital food. :-)

Dr. Chang is on service this week. We really enjoy him. He was a fellow when John was first diagnosed. Dr. Chang has connected with John and they have a great relationship.

This morning Dr. Chang said John could either go home this afternoon or tomorrow, depending on how John felt. The other, younger, doctor added her opinion that she thought John should not go home since everyone else on this protocol stays in the hospital for a month. Dr. Chang spoke up and said Dr. Stork already authorized it. It does scare me to have him home when I know this chemo is wicked and so much could happen. However, I can watch him closely and I believe John will recover quicker at home, as long as the infections stay away.

That's all I know...

Sunday, May 11, 2008

Happy Mother's Day!

Aunt Joanne and Kelsey visited this morning. They came by after the prayer circle. John wasn't feeling great so his visiting was limited. It was wonderful to see them!

Prayer is very powerful. Thank you for all those who joined Gaylen this morning. For the first time in days, I woke up without a headache. I haven't done anything differently. Amazing.

John will get two chemos today. The first one is already started. Tomorrow he will only receive one chemo, which is planned to start at 2 pm. He can go home afterwards if he feels good enough. The chemo that makes him sick ends today.

The doctors don't think they would see GVHD. They think the red legs are from the chemo and/or Vanco.

Thank you Olsen family for bringing dinner over last night. Ned and Andrew said it was awesome, which is a given. I don't think Karen can make anything taste bad. I will get to have some today. It even got John's attention!

Saturday, May 10, 2008

Gaylen Cashman has organized a prayer circle for Johnathon at 7:44 am on Sunday, May 11, at the Wilsonville High School football field (all faiths welcome) to "pray for complete healing-calling forth a miracle". There will be a lighted candle to remind everyone that "miracles happen every day and to have faith and trust the process". She asks if you can not make it then please join the prayer circle at home or wherever you are at 7:44 am. She even sent the e-mail out tonight at 7:44 pm! THANK YOU GAYLEN!!!!

John is doing better. Ned spent the day with him while I went home to get some work done. John helped Ned with playing X-Box and John even ate a few potato chips. Tonight he took a shower!!! YAHOO!

John's legs are red and the left one is swollen. I don't know what is going on but hopefully it's a sign of dying leukemia cells. John's back still is sore too. We're having difficulties getting ahead on the back pain. I would think if he quit throwing up that his back might feel better.

The doctors told Ned and John that they think the masses are smaller and softer. Go Away Masses!!!!!!!!!

Saturday, May 10, 2008

Sorry for the delay in updating. Please know that if there is not an update, it's ok. I typically update quickly when things happen that aren't good. Writing in this journal is a good release of anxiety. I feel the prayers get bumped up and I feel comfort in that.

John is still sick. Yesterday his nurse got frustated with how much John was throwing up and requested a different anti-nausea medication. She kept asking until the go-ahead was given. It's a drug they used to use quite a bit and don't anymore. It can have some side-effects which are minimized by using Benadryl with it. He got his first dose last night and it seemed to help. John even got hungry! He ate half a Jello cup then requested potato chips. Unfortunately, by the time he got them, he wasn't feeling well again. Ned picked some up on the way in today so we have a supply ready. It's not what I want him to eat but something is better than nothing.

He woke up feeling ok but the chemo started and he got sick again. There is a anti-nausea medicine they can give him prior to chemo which apparently works well on teenagers and adults. It's expensive and only allowed for inpatient. I don't think John got it this morning. I will have to follow up.

It's been a interesting stay this time at Doernbecher's. They switched to a computerized system and we have felt the bumps. His chemo has been two hours late and his hydration fluids over two hours late. The pharmacy is overwhelmed. I don't get it. It's not an option to be late on chemo when he is on a protocol and it's not an option to not have his hydration fluids going at the correct rate 24/7. There is a reason for all this. The nurses have been very proactive. The first few days it was discovered John had two IDs so the pharmacy was using one number and the floor was using another. It took a while to get that one figured out and corrected. No one knew why the two systems were not communicating correctly. I was told today to take note of what works with Johnathon because we will need to tell them the next time he is in...huh? I do keep track but I typically trust what is being done is correct. I may have to increase by watchful eye to an eagle eye.

John was put on Vanco when he got the fever. They took cultures which takes three days to grow. Yesterday he was taken off of Vanco because John has an immune system. Results are not known from the cultures. I'm confused. I'd rather have him off Vanco. Save the heavy stuff for when he needs it...but why did they put him on it to begin with? John thinks some of the Red Mans may be GVHD. Ned and I are watching John's skin carefully. John sleeps most of the time and when he wakes up, the reddness concerns him. The reddness has definitely improved since Vanco was stopped.

John announced yesterday that he thought some of the masses were smaller. YAHOO!

This morning Coach Shishido and Coach Finck visited. John was happy to see them but limited in his ability to visit. He just received Benadryl and chemo so he slept and didn't feel well for the majority of their visit. Coach Shishido said John will graduate and he will be able to participate in the graduation ceremony. It could be doable with John's chemo protocol that he will feel good enough to be there...that would be so incredibly awesome. John is bummed because he missed his eighth graduation due to treatment and he may miss his high school graduation too.

I've been unsure what to do with John's graduation announcements and I plan to mail them out. There won't be another opportunity like this and he needs to feel as normal as possible. This just sucks.

Friday, May 9, 2008

John still isn't feeling well. I was so excited that he ate a little yesterday morning..but that was short lived as it didn't stay down. He is fighting a fever and throwing up. His leg pain has also increased. We are back to balancing many different drugs to keep him healthy and comfortable. He has "red mans" from the Vanco. A possible side effect which makes the skin red and sometimes uncomfortable. I haven't heard him say he is itchy so hopefully his skin isn't uncomfortable.

My brother Wade came to visit yesterday with his son, Aidan. Unfortunately, John was not feeling well and just received Benadryl. Wade and I took Aidan to the playroom to allow John some quiet time. While I was gone, two doctors stopped by. I'm sure they had no idea to check the playroom for me...which is ok. I'm not really in mood to hear what they have to say.

Today is interesting....for those who know me, that is a loaded word. Hilary Clinton is here at Doernbecher's. Doernbechers is on hill with limited parking. Having Hilary here means people everywhere and parking is more restricted. Aunt Joanne and Kelsey were suppose to come visit and I told them not too. Even the nurses were told they may have difficulty finding a place to park.

I woke up this morning to a walkie-talkie. John has window to the hallway which has closed blinds. I could see a silhouette outside the window. When I looked through the blinds, it was an officer who was watching the door to the floor.

I walked out to the main hallway to call my brother and was surrounded by people in suits, FBI, and media. OMG. Kids are here sick. Do they need this additional commotion? I'm having a hard time balancing commotion with what is best for the kids. If this helps Doernbecher's, great. However, there is a price to pay for the families here for her to visit. I heard there is one young patient who is very excited to see Hilary. If that is the case then her visit is worth it. All I know is John is sick and there is more noise from all the people.

The family kitchen has a view of where Hilary will be speaking. I need to go in there regularly to get water, ice, etc. for John. When I go in there, what do I see? Several Doernbecher housekeeping employees sitting, looking through the blinds, waiting to get a view of Hiliary. I want to ask them if they don't have something more important to be doing. Not a big deal. Just an irritation of the impact.

Ok, I'm done. I need to shake this attitude. What is most important are these sick kids...period.

Karen Ringquist is taking me out to lunch today. It will be nice to get away for a little bit. I sure wish I could take a good feeling Johnathon with me. Wade should be here by then so he can sit with John. There isn't much to do except help John when he gets sick and make sure he has all the fluids he wants. Karen is going to allow me to borrow her laptop so I can work some. I had a laptop in 2004 but somehow it's not working properly anymore. It must have got a virus..somehow...(Andrew?).

Bob Lynch fixed John's bedroom wall yesterday. John punched a hole in it when he found out he had cancer. We didn't want to him to be in there with a hole in his wall when he is immune suppressed. Bob also brought over meals that his wife, Anne, prepared. Ned brought me up turkey, dressing, mashed potatoes, green beans and gravy. It was WONDERFUL! Thank you Bob and Anne.

John is getting his chemo now. It looks like water...it's so hard to know what it is, what it's doing to your child's body, and knowing there is no choice.

Hoping for a day where John feels better and wants to eat.

Thursday, May 8, 2008

John has a fever. :-( It started last night and went up relatively fast to 102.9. ARA-C can cause fevers but so can an infection. They ran cultures last night and put John on IV Vanco and Ceftazidmine. Unfortunately, ARA-C brings a lot of bad memories and the fever scared the heck out of me.

He is doing better this morning. He is awake (he slept all day yesterday) and eating oatmeal. He really hasn't eaten very much in the last two weeks. It's nice to hear him talking and joking with the nurses.

John said his masses hurt today. Typically only the masses in his lower legs hurt. I am taking this as good news...the masses are mad because the chemo is attacking them.

John will receive two chemos today. ARA-C (aka Chemo A) and chemo B. I thought they were every other day but I am wrong. He will receive both chemos every day for the next five days.

Last night, Candlelighter's provided dinner for everyone on the floor. It is such a nice service to all the families living on this floor. They also gave each of the kids a care package. John is enjoying his package today. It has magazines, movies, games, etc. He is reading a magazine with men's clothing and I am hearing how much he likes this and that and each item costs over $200. Keep dreaming John!

Andrew is definitely having difficulty this time around. He is older and able to understand more what is going on. He's missed school most of this week and has asked multiple times to come visit. Since John was sick yesterday, I thought it was best he did not. Hard to know what is best. He is texting me today stating it's hard to be in school.

John had a some visitors yesterday. The Lynch family, Ned's sister Louise, and Dave Carlson. John fell asleep during all their visits.

I am hoping today that John's pain will be manageable, he will eat, and get out of bed....and most of all, the chemo will kill those cancer cells and not damage other parts of his body.

Wednesday, May 7, 2008

Chemo has started. The first one is ARA-C. John didn't realize he was getting ARA-C until this morning. John tends to blocks things out and I've had several discussions with doctors in the hallways so I'm not sure where the chemo information was provided. John immediately got upset. ARA-C put him into ICU and it affected his eyes. We started eye drops this morning. He will continue eye drops four times a day until 24 hours after the last chemo.

John's calf is hurting. I look forward to the chemo putting the leukemia into remission and the masses not creating pain anymore.

We haven't seen doctors yet today and I'm ok with that. I am tired of hearing how the odds are not with us and how bad this is that John has relapsed. I understood that the first time. Let's concentrate on defeating this leukemia once and for all. Who truly knows what the outcome will be. Miracles happen.

Tuesday, May 6, 2008

We are in a room...same room as last week, which is good. It's in a good location with a nice view of trees.

We arrived at 11 am and they had a lot of trouble placing a PIC line. John hates the procedure and they had to do it twice. The left side would not allow the line to be placed centrally (near his heart) but the right side did. Whew! It wasn't completed until 5 pm so it was along afternoon in the clinic.

Dr. Lamkin came in to speak to John and I...he closed the door when he entered and my whole body went to mush. He said basically what we have already heard. John relapsing is not good. He really thought we had got the leukemia. He is shocked that the biopsy results showed leukemia. He beleives we can get John into remission but it will not last. He believes the only chance of beating this is another bone marrow transplant. He is going to talk to Dr. Nemecek to see if this isn't still a possibility. He said the immunizations and hip replacements did not make the leukemia come back. The leukemia would have came back at the sime time any way. He did say this is the same leukemia as before but acting differently. It's not as aggressive as it originally was and it's in the tissues. I asked why this is unusual. He said it's different because it's in the tissues, not a mass next to something. He said if he didn't have the results of the biopsy, he would still think we were looking at hematomas...especially since some of the masses have shrunk...another unusual aspect of this leukemia. It was overall very difficult to listen too and John asked him to stop at one point. Most of the conversation happened in the hallway with just myself and Dr. Lamkin. There are a lot of unknowns which I suppose can give us hope.

Tuesday, May 6, 2008

John decided to wait until today to be admitted. He was feeling better yesterday. He went to the movies with Jordan Beltz, Lucas Huddleston, and Collin Lam. Thanks you so much Jordan, Lucas, and Collin! John was in great spirits last night.

We will head up to Doernbecher's later this morning. My mom will be arriving today to help with Andrew.

Chemo may start today. The doctors spoke about hydrating him first so I'm not sure if that could push chemo until tomorrow. I'd rather get it started. I want to kill those leukemia cells!! Dr. Stork thought we might see a response as soon as 72 hours. Please pray this chemo puts John into remission and there is a permanent, reasonable, desirable solution to forever in remission!

Thank you for all the prayers!!!

Sunday, May 4, 2008

Today is the 4th year anniversary of John�s original diagnosis. Strange, huh?

John is home. YEA! It was an unknown until he walked out the door. He didn�t wake up feeling well but he had to power through getting off the IV pain medicines and get out of bed. He�s only been out of bed once since Wednesday and the only reason he got up Wednesday was to get in the car to go to Doernbecher�s. I honestly thought it wouldn�t happen but Ned stayed with John at the hospital while I went home to pack for six day stay and Ned called stating, �We�re on the curves.� (Translation for those who don�t know Portland�I-5 has a bunch of curves south of Portland called the �curves�)

We had a fun evening. The Olsen family, Beltz family, and Sondenaa family came over with dinner. We laughed and relaxed. John was not feeling wonderful but he stayed on the couch and joined in the conversations. He also ate some which is awesome. We need to build his strength asap.

Friday morning I went down to Starbucks to get a coffee. My mind wasn�t clear and I only grabbed my Starbuck�s card. I get to the register and find out I am 20 cents short of enough money for a coffee. I told them I would go back to the room to get the 20 cents. A lady in front of me said she would pay for it. The Starbucks rep asked if she is paying for the 20 cents or the coffee. The lady said the coffee. I just started crying. There are so many compassionate people in this world.

Ned took Friday off and when he walked in to John�s room, he announced that I didn�t look well. Thanks Ned. :-) I wasn�t sleeping well, not eating very much, and crying a lot. He said I needed to get out of the hospital. I argued with him but he wouldn�t budge. I went home Friday afternoon and it was a good thing. I decided to watch Survivor and that was enough distraction that I ate some. I gathered a few things I needed and headed back up. I felt like a new person. I feel more in control of my emotions and ready to help John fight this cancer beast one more time. It still feels unreal.

John pretty much slept from Wednesday to Saturday. His head and back hurt. On Saturday, the doctors decided he may have a headache from the spinal tap. Ned and I have been telling them that but for some reason, they weren�t convinced. There was confusion of John being on pain medicine prior to Monday and it somehow related to back pain, which is did not; it was the mass in the leg. They performed a blood patch. A headache from a spinal tap is from fluid leaking. The doctors put blood in the area of the leak and the blood clots the hole(s). John felt relief very soon after the procedure. Yahoo! He has made steady progress since then. The back still hurts but at least it�s manageable.

John found another mass last night on the back of his neck. I can�t wait to get rid of all those nasty masses! John is scared but he is ready to fight. The doctors already have him taking medicine to protect his kidneys during chemo. John will get a PIC line placed on Monday; he had a choice of PIC line, hickman, or port.

Dr. Stork and I had another chat. I needed to know more information about the chemo protocol. I hate to ask questions because I�m afraid I will learn more than I can digest. Dr. Stork pulled a notebook and covered the name on top to show me the protocol (i.e. someone else in the ward is receiving the same protocol). It will be 2 hours of chemo A every other day and 1 hour (I think) of chemo B on the other days. I asked if this protocol is currently being used. She said yes. There have been five kids who have relapsed or didn�t get into remission in the last year and this protocol worked on all five. I asked how well John�s new cells will handle the chemo. She said John has strong marrow and should handle it well. I asked about any feedback regarding research protocols. She exclaims, �I didn�t tell you?� Nope. Well, she has been told to contact a hospital in Houston and Baltimore. There may be something John will qualify there. They have to confirm that Ned and I are on board, which is a no brainer for us but not for every family. Dr. Lamkin will be back tomorrow so I�m sure he will be following up.

John has the choice to return tomorrow or Tuesday to start chemo. John will have six days of chemo then come home on massive antifungal/antibiotics (IV Vanco) and we wait until his counts recover. We�ll be back to sanitizing and watching the foods we eat. I need to review with Dr. Lamkin exactly what the restrictions are. I know bone marrow transplant was more restrictive. So much of the past is a blur. Just not memories you want to keep.

Thank you to ROCN, WIN, and FBI for the gift of meals. It was a pleasant surprise to come home to a cooler of food. It will help out a lot as we juggle two locations and coming home when John is immune suppressed.

�You walk through the darkness with us, not because you are ill and have to, but because you choose to. We were drafted, but you enlisted. We recognize and appreciate the difference more than words can every say. YOU are our heroes, our support, and our reasons for fighting.� By Vickie Girard

Friday, May 2, 2008

John felt a little better yesterday afternoon and actually talked and played a bit of XBox with Tommy Walters. Unfortunately, he started to feel ill in the evening and it hasn't improved. He's pretty much drugged so he sleeps all the time. He may wake up to get sick then go back to sleep. There is very little conversing with him. I tell him I love him everytime I see his eyes open. He commented he's never heard me tell him so many times. I just want to stop time; I want to be in control and change what is happening; I want to have his cancer so he can live... and I can't.

Dr. Stork stopped Ned and I in the hallway yesterday. She wanted to know if we had any questions. I asked Ned since he was not in the room when we were told and he said he had enough information. I had questions but now regret asking them.

The first question...why can't you give him donor cells? She said the body has taken the donor cells and modified them. The cells he has now would not recognize the donor cells and he would be dead in six weeks from severe GVHD. His body could not handle a second round.

I told her John was upset they didn't do the biopsy sooner. She asked if John didn't have a good couple months?

I asked if starting chemo on Sunday or Monday was ok. She said, "Yes, the leukemia isn't all over the body yet so we have some time." I asked about the type of chemo and she said it's a combo with ARA-C. ARA-C is the chemo that put John into ICU in 2004. I asked how many times will he get this chemo? She said she wasn't sure. He needs to survive the first round of chemo.

She also said she sent out John's diagnosis to cancer research organization. Basically, there isn't anything they are aware of after chemo for John. She is hoping if John is kept alive for six months, research will discover something. She said she could have never thought that 10 or 20 years ago but research is moving so quickly right now that you don't know. If John does qualify for research, it would not be at Doerbecher's. We would go to where ever the research is being performed. She said John being an adult is advantageous because as an adult there are more research protocols available.

Thank you for the guestbook entries, e-mails, and voicemails. I am sorry for not returning all calls. It's very difficult to talk right now. It's hard enough to not cry 24/7 and impossible when I hear friends voices.

Thursday, May 1, 2008

Dr. Stork gave us the news. She is the doctor we consider to be the "cheerleader"...the positive one.

There are a few leukemia cells in the marrow and .

They don't think there is a good chance John can beat this. It's not a zero chance but it's not good. They believe John had severe GVHD because the marrow was fighting the leukemia.

Dr. Stork suggested a couple rounds of chemo to get John in remission then hopefully the donor cells will take care of the remaining leukemia cells. There isn't much out there beyond that and we may try an experimental treatment. Since John is an , there are more experimental available.

The chemo protocol will be six days at Doernbechers then home to recover. Dr. Stork said they would break their own rule and allow John to go home to recover. He asked if it's because they knew he was going to die and he'd have more time home. They said no. It's because he's been through so much and they know he would be ok at home.

Dr. Stork believes the back pain may be related to the leukemia.

They want to John to think about what they told them. He has to determine if he wants to fight. Dr. Stork wants to start the chemo within a week.

John is very angry no one listened to him in the beginning when he said these masses were different and asked for a biopsy. He is scared...as we all. This is so wrong.

Wednesday, April 30, 2008

John has been admitted.

We had an interesting morning trying to get him to Doernbecher's. Dr. Lamkin is the only Kaiser doctor at Doernbecher's and he is on vacation. I had to message John's peditrician for permission to transport by ambulance. After an hour of waiting, I called and was transferred to her nurse. She said she would call Kaiser transport and get back to me. It was an hour and after multiple conversations with Doernbecher, I was getting more concerned about John. Ned and I made a make-shift bed in the back seat of my car and had John walk to the car. It was not the best option. I drove as careful as I could to Doernbecher's and then we had to get him in a wheelchair. He was in so much pain. Luckily once we got to the clinic, they took us right back to a room and then all hell broke loose.

There were several nurses and a doctor in the room all attending to John. Dr. Wolff said they are very concerned about John and started examining him in a rushed fashion. IV nurse was called in and she had a terrible time getting an IV in. John was dehydrated. During all this time, John is in tremendous pain. Dr. Wolff stepped back, put his hand on chin, and looked at John. Asked a few more questions. My thoughts, "holy crap, what is going on..." It was extremely scary. Everyone was moving so quickly and Ned and I were up against the wall watching everything take place.

Two IV bags were started. Pain medicine and anti-naseua medicine were given to John through the IV. He settled down and later asked for some food. Yahoo. He ate a jello and pudding then the pain medicine started to wear off again and John started to thrash. The pain is coming from his back and it's intense. The doctors don't believe it's from the bone marrow aspirate or spinal tap. I think they were concerned he had a mass in his spine area.

I noticed a message on my phone. Kaiser had called while we were bringing John into the clinic. They were sending an ambulance. By the time I got back to them, the ambulance had already arrived at our house. What happened? I don't have a direct line to call the nurse and I expected a return phone call quickly. She wasn't very happy. I would have much rather had John transported by ambulance.

John was on gurney and thought the bed was not helping his back. They transferred him to a regular bed and started a third IV bag. The transfer was painful and they had to get the pain under control again. The doctor decided they needed to admit him. He also said John's pathology results are in and John has the same leukemia.

The game plan is to keep the pain medicine flowing and hopefully his back will feel better soon. The pain team thinks John may have a pulled/strained muscle somehow created from the bone marrow aspirate.

We are in the new wing of Doernbecher's. It's nice. Hard to be here. Didn't think we'd ever be back.

Dr. Stork said they don't see leukemia come back in the tissue like this. She and Dr. Chang looked at the bone marrow and they thought it looked good. We will know for sure tomorrow when the final results come in. She said it appears the donor cells are taking care of the leukemia cells in the marrow so they need to figure how to get the donor cells to take care of the cells in the tissue. She said there will be chemo but the focus will be to get the donor cells to attack the leukemia cells. I don't know what this means. My first thought is GVHD but how do you create that?

John is resting comfortably now. We are still in shock.

Wednesday, April 30, 2008

John's pain is out of control from the bone marrow aspirate/spinal tap. We thought it would be better by now and it's not. It's been a couple miserable days trying to give him enough pain medicine to keep him comfortable. He is now not keeping down the pain medicines and we are trying to figure out a way to transport him to Doernbecher's. He can't move but an ambulance is only covered if it's an "emergency", which is considered life and death according to Kaiser. I am on hold now with membership services. Another new experience...

Monday, April 28, 2008

5:45 pm - Bone marrow aspirate done. We don't know anything about it.

Dr. Lamkin is on vacation this week. Dr. Stork, the leukemia specialist, is on service. Dr. Tolford was scheduled to perform the bone marrow aspirate.

The nurse came into our room around 2:45 pm and asked if we would like to go at 3 pm instead of 3:30 pm. We said sure and followed her to the surgery room. Dr. Tolford came in and Ned & I left.

After the procedure, Dr. Tolford was gone by the time we were allowed in the room. We waited for John to wake up and Dr. Tolford came back in. I asked how the cells look. He said he didn't look at them. I responded, "I thought you were" and he said no because the cells need to be treated and that takes a couple hours. He thought the marrow looked "spongy", which I think it a positive (Dr. Tolford was smiling). Dr. Tolford said he got a lot of marrow so even if there is only a few bad cells, they will find them. I asked about the chemo. Dr. Tolford responded, "what chemo?� Chemo was not in the order for today. Huh?

Dr. Chang said they don't want to give John chemo until they know what is going on especially since John is a bone marrow recipient. Dr. Chang said all he knows is third hand and Dr. Tolford was doing what was ordered. A bit confusing. John's masses could be lymphoma or a type of AML or something else created as a result of bone marrow transplant (I don't recall the term; we discussed this when John had the mass in his chest and it was later decided he had Epstein Barr virus.) Dr. Chang did bring up the mass in John's chest two years ago. He also said each biopsy had a different texture (they took a biopsy from three different masses).

Dr. Nemecek (bone marrow doctor) said she would not recommend another bone marrow transplant. John had such severe GVHD and they hit him with everything they had. I asked about introducing a small amount of the donor's marrow and she said that only works when there are one or two masses. I commented, "oh like in January." She said she really hadn't been following John and asked what had happened. When I told her two separate MRI results were hematomas, her jaw dropped. Apparently, the masses are different than what anyone has ever seen before. She commented that Dr. Lamkin is very proactive. She said they know John is a fighter and they have other alternatives. They need to figure out what it is and all the doctors will put their heads together.

We left Doernbechers starving. I think the relief of no news allowed our bodies to relax a bit. It was a rough weekend. John was consoling me. I try so hard to be tough and I just couldn�t do it t his weekend. I feel better now�.switching gears to start the fight.

John took the initial news hard and then kept busy with friends and family. He definitely was quiet on the way to Doernbechers and was mad as hell when we arrived. He did not want to be there. We all received lots of hugs from doctors and nurses.

Thank you for all your support. I could never express how much it helps us get through this.

�Friends are angels who lift us to our feet when our wings have trouble remembering how to fly�

Friday, April 25, 2008

Monday: John's bone marrow aspirate is at 3:30 pm. I don't know what we'll find out today. Hopefully, the doctors will not see leukemic cells in his bone marrow. As of April 10, his blood tests looked good. As I understood Dr. Lamkin, it may be a week before we know the type of leukemia.

I want to wake up from this nightmare...

Friday evening: Dr. Lamkin called tonight and the initial biopsy results came back...leukemia. We don't know the type. We won't know until next week. John will have a bone marrow biopsy on Monday and get his first dose of chemo. We are praying the leukemia is not in his bone marrow. The leukemia could be a secondary leukemia or a relapse of the same leukemia. A lot of unknowns except John has cancer once again. John is taking the news hard.

Thursday, April 24, 2008

10:00 am - John had his biopsy yesterday and it wasn�t uneventful. Is that just a given now with our family?

John�s biopsy was scheduled for 3:30 pm; we arrived at 2:30 pm. John decided to not wake up to eat or drink when he could in the morning but I did give him a slimfast around 7:45 am for good measure. By noon, he was already feeling nauseated from not eating and �stole� a triscuit. It made him feel better but it made me nervous he just messed up the surgery.

We checked in, waiting in the full waiting area for a while then went back to a room around 3:30 pm. We then waited, waited, waited. During this time, it was determined John was dehydrated and needed fluids. The first IV bag was hung and they let it go as fast it could. The next IV bag was put on the IV machine and regulated. I kept waiting for John�s bladder to explode and he never had to urinate. Even his lips started to get chapped like at the MRI before the IV fluids. A good sign of dehydration for John. John also had an incredible headache so they gave him Tylenol.

The nurse told us surgery would be in an hour around 5:30 pm. I asked Ned if he wanted to go for a walk. I was feeling horrible from lack of food. We walked to the vending machine, inhaled the healthiest choice available and went back to John�s room. He didn�t know. Whew.

At 6:30 pm (remember surgery at 3:30 pm), Dr. Turker came into John�s room and said it would be a couple more hours before he is done in surgery. We could either wait or he would work us in tomorrow. John said he didn�t want to fast again and we would wait.

The surgery nurses shift ended and we couldn�t stay in the pre-op room anymore. All Doernbecher rooms were full and we went to a room at OHSU. This room was on the opposite end of Doernbecher�s. It was quite the walk and I was certain I would get lost trying to find my way back�and I thought I knew this hospital! This is a new wing built two years ago and the room is wonderful.

At 9:40 pm, transport arrives to take John back to Doernbecher�s surgery (we missed the end of American Idol!). John gets in a wheelchair and off we go. We arrive at the surgery area and the nurse asks,�Where�s John�s bed?� Transport person has to go back to get John�s bed.

We talk to Dr. Turker and he plans to biopsy three masses. He believes the calf mass has decreased in size. Yea. Confirmation to what we thought. We get a mini lecture from the anthesiologist because I gave John slimfast too late but it doesn�t matter now since the surgery was so delayed. She said he should have had a full meal. Ok, whatever. I messed up; we could have done something different. I am tired and not really in the mood for a lecture of what if�s. It all worked out.

John goes back to surgery which should take one hour. Ned and I head to the cafeteria.

The surgery went well. The bleeding was under control. I asked if the biopsy areas look like hematomas. He said they typically don�t biopsy hematomas so he doesn�t know. The results will be back in a week.

We see John around 11:30 and transport is called at midnight. Transport will not arrive for 30 minutes. The poor nurses have been working for 18 hours and Ned has to be at work at 5 am. Everyone is exhausted. Ned takes off; Andrew is at home alone. We wait for transport while watching John inhale popsicles, graham crackers, and saltines.

Transport arrives and it�s an elderly, frail looking man. John�s bed is heavy. It�s a newer bed with the battery so it�s easier to transport�just our luck, the battery was not charged. The transport guy said the bed weighs 500 pounds. He is struggling to push it. We have to take several breaks so he can catch his breath. His forearms are shaking and he is breathing heavy. I am wondering if I remember CPR well enough to perform it. I ask if I can help and he said no. We get � of the way to John�s room and during one of the many �rest breaks�, the transport guy plays with a few buttons on the bed and BAM the bed turns on! The rest of the way was a breeze. In fact, the bed went pretty damn fast. We were hauling. I don�t know when I was so happy to see a hospital room.

John has the option of going home or staying. His pain in his arm and leg is fairly intense and he elects to spend the night. We go down to cafeteria and purchase massive quantities of food. Once I feel his is comfortable back in his room, I leave. It�s 2 am. It was one of the most difficult drives trying to stay awake. I probably should have crashed there and drove back early this morning to take care of Andrew.

I haven�t heard from John yet. I will head up to OHSU shortly. They have signs that say discharge is at 10 am. It�s a rarity in our experiences to be discharged that early. If he does, I guess he gets to wait for me! :-)

Tuesday, April 22, 2008

I think there is small progress being made...I try to get John to acknowledge it but it's not easily forthcoming.

I've noticed John doesn't complain about pain as much, he is doing more, at least not sitting on the couch 24/7 with leg elevated, and the swelling is down. I believe he is afraid of acknowledging any change because the calf still is incredibly painful and there is swelling. He commented last night that he thought his masses were growing in his torso area.

Dr. Turker's assistant called today. I was in a meeting so John took the call. The info I received from John, "I need to be at Doernbecher's tomorrow at 1 pm for a biopsy." I called the assistant and she said, �I wondered how much information he would give you.� :-)

The biopsy is scheduled for 3:30 pm but we have to be there at one in case they can take him sooner. Hum�I wonder how often they get people in earlier than the scheduled time? John can�t eat or drink six hours prior (John�s response, �No problem. I�ll sleep until noon.� Life of a teenager who doesn�t have a morning schedule! It will be an outpatient surgery.

When the assistant was done explaining tomorrow�s procedure, she asked if I would like Dr. Turker to call me. I said no. She continued, �If you have any questions, he will be able to answer them for you�. I told her I didn�t have any questions. She replied, �I have given you a lot of information to process.� I, in my more relaxed after tax season state, merely said, �thank you� and ended the call. She evidently has no idea how much we have had to process in the last four years. I�m not concerned about a biopsy procedure; I am concerned about the results though.

Wednesday, April 16, 2008

Another tax season bites the dust!!! I am doing the Happy Dance today!!

Now, the fun part to try and rebuild the events of last week. Hard with a normal memory but last week it was definitely in the mushy stage.

On Monday, John saw the oncologist. See Journal History. Easy enough start� :-)

On Tuesday, John saw the orthopedic. See Journal History. Hey, memory is doing fairly well so far!! Ok, here�s more�.Dr. Turker ordered a �stat� 48 hour MRI and I was asked to call him Thursday morning with an update. He was leaving on Friday for a week. He reminded me twice to make sure I call him.

Wednesday morning I call Kaiser MRI to see about John�s �stat� appointment. The representative said they couldn�t schedule it yet because the MRI order had not been reviewed by a radiologist. Seemed a bit strange that almost 24 hours had passed on a 48 hour MRI and we still didn�t have an appointment. I know I am tired and figured I am taking this all too critical. I know they are open until 8 pm so there is still time to get him in.

Kaiser MRI calls around 2:30 pm to schedule an appointment. Unfortunately, she doesn�t have any within the time frame we need. I ask about going to OHSU since they did the one in January and would be able to compare the two MRI�s easily. She said they would probably be able to get John in faster and she said she could authorize transfer of Kaiser MRI to OHSU MRI. GREAT! I breathe a little easier. I asked how soon could I call OHSU MRI to schedule an appointment and she said in two hours and gave me the number to call. She was very pleasant and I was feeling confident things were going in the right direction.

I call OHSU MRI at 4:30. They had received the referral but it wasn�t accurate. I asked for more information. She said there was only one piece of paper which basically said John needed an MRI. She explained they needed to know what part of the body needed the MRI. I told her I would call Kaiser MRI.

The person who answered the phone sounded young. First cue things may not go smoothly. Again, remember I am exhausted and don�t have patience. I am frustrated because my son�s leg is swollen from lack of circulation and I am running out of time to get an MRI before the orthopedic leaves for a week. I told her the basics�transfer from Kaiser MRI to OHSU MRI, stat MRI, doctor ordered Tuesday morning, stat MRI, spoke to Kaiser MRI representative this afternoon and not enough information was faxed. She said she couldn�t do anything about that�.oh, don�t use the word �can�t�! I took a breath and explained to her that she would not be able to schedule a MRI for John if they didn�t have information on what needed to be done. She said I should call his doctor. Again, I explain they must have the appropriate information or they couldn�t schedule the appointment to begin with and all she needed to do was fax the complete information to OSHU. I continued that I shouldn�t need to call the doctor because Kaiser MRI transferred us to OSHU MRI. She then asked why I was calling (emphasize �I�). OMG. I explained to her we are dealing with a STAT MRI and so far I am not experiencing anything close to STAT. She wanted the OHSU fax number. I didn�t have it and told her they handled the transfer, she has the information. She hung up on me. I literally started shaking. This was closest I have felt to cracking in a very long time.

I called OHSU MRI and a spoke to the same person I spoke to earlier. I explained to her about my conversation with Kaiser MRI and she said they would call me in the morning or I could call them. She had involved her supervisor at this point. I gave her the number of Kaiser MRI.

I called Thursday morning around 8:30 am. Yes, they did received additional information�.however (yes, can you believe it??) they had use a form stating �do not use for leg� requesting MRI of leg. They cannot use this form, they are trying to get the correct form completed from Kaiser. I am pretty upset at this point and decided I am done with Kaiser MRI. I called Dr. Turker�s assistant and let her know what is going on. She asked for OHSU MRI and said she would handle it. She called back and said call OSHU MRI now. I did and they didn�t have any appointments for that day but agreed to work John in at 4 pm.

We arrived at 3:45 and they took him right back. Around 4:30 pm, the tech came out and said the pain was so bad for John that they had to get pain medication for him and it�s going to take a little longer. Ok. In the meantime, I am sharing the waiting area with people who are unique. I figure God is testing my patience and I am about to fail. I am wound-up tight.

John comes out with head down, walks past me saying I couldn�t do it. I looked at the tech and then looked at John and asked, �What do you mean you couldn�t do it??� John kept walking so I got up to catch up with him. The tech asked if there is anything he could do. I said, �No, I am trying to figure out what happened.� I caught up to John and he is leaning against the wall, in tears. He repeats, �I couldn�t do it.� He explained he needed to stretch out his leg for the MRI and the pain would become intense, his foot would go numb, and then the leg would start shaking. Even with the pain medication, his pain was 8 on a scale of 1 to 10, 10 being the worst. I felt someone looking at us and I look over�it�s the tech. He again asked if there was anything he could do. I said, �I don�t know.� He replies, �Are you sure�? At that point, I blurted out, �fine, page the pediatrics hematologist oncologist on-call, please�. He said we could go to 10S at Doernbechers. Immediately, my mind thinks duh. Come on brain, kick in. He asked if we needed transport, it would take 20 minutes. I asked John and he said no, it�s best to keep the leg moving. When we get in the elevator, I comment to John about how the tech kept asking if we needed anything. John said it was because I look angry when I think. Thanks John. :-)

We walked to Doernbechers inpatient oncology ward and asked to see the oncologist. John is pissy and doesn�t understand why we are there. I tried to explain I am tired of trying to figure these masses out while he is in intense pain and we can�t even get an MRI. Dr. Chang spoke to us for a while and basically said the best option for a sedated MRI would to be admitted. He didn�t know if they could schedule one on Friday though the clinic.

John and I headed to the cafeteria to discuss it. John wasn�t too keen on getting admitted and I wasn�t feeling comfortable going home when he is still in intense pain. At least, in inpatient they could get the pain under control. We agreed to get him admitted.

At 5:30 pm, we arrive at OHSU ER. The person checking us in wanted to know why and I gave her the best, briefest answer I could. She looked up with wide eyes and said I am putting fever. My response, �Great, now the doctor�s will wonder why he has a fever.� She also gave me a mini lecture on John�s allergies and how some of them are similar. Ok, I�ve been doing this for over four years, I blurt out the allergies like a memorized poem. No one has told me differently. Deep breath�.

We wait for a while in the waiting area. I�m looking around wondering how many sick germs John is getting exposed too. I guess the low immune system days will never really leave our memories. We get a room and the nurse asks why we are there. I give her the basic and she writes something on her little pad of paper. The doctor comes in and asks the same question. I asked how much information the nurse gave him; he said I need to start from the top in �Cliff Note fashion�. No problem. Luckily, I had grabbed my timeline I created for Dr. Turker so I was able to give him that as I start spewing out the Cliff Notes fashion events of John�s cancer journey. When I got done, the doctor was quiet. I think he was trying to digest it all. He then looked John�s leg and said I am admitted him for pain. Ok, that�s easy enough�not quite all it but he�s admitted. I did tell them the pediatric oncologist said he should be admitted. Oh well. Let the ball continue rolling. Ned arrived so I could go home and work all night. John finally got to his room around 11 pm. John is in 10S which was the oncology ward. Oncology has a new ward, 10N. 10S is now for intermediate care (going from ICU to a regular room). We didn�t know any of the nurses and there had been some remodeling so it felt comfortably familiar but different.

Thanks goodness Mom and Dad arrived that day and they were taking care of Andrew and doing laundry/packing (you know the important stuff�clothes, X-Box) for John. Janna picked up the packed items around 9 pm and brought it up to the hospital (with powdered donuts�her specialty for John�s hospital stays). I must have passed her somewhere on the freeway. Thank you Mom, Dad, and Janna!

Ned left at midnight and apparently John had a great night. He was up until 5 am hanging out with the nurses. His pain was under control and he was feeling good. An MRI was schedule at 8 am so he couldn�t eat or drink past 2:30 am. He even gave a traveling nurse a tour of OHSU with information what food is good at each cafeteria. A sign we�ve spent WAY too much time there!

Ned left early Friday morning while I met with a couple clients; the Friday before tax deadline was almost impossible to rearrange. The 8 am MRI appointment was changed to 1 pm. They couldn�t get a sedated MRI so they were going to give John more pain medications. Ned went to work and John slept. Hummmm, the night owl didn�t get enough sleep. I arrived at 1 pm, the nurse gave his a shot of delauted in his IV and off we went to MRI. When we arrive at MRI, John is nauseated. They put him on a bed and we wait�and we wait�and we wait. Finally, a nurse from 10S came to give him his next scheduled dose of delauted. I comment about the correlation of nausea to the last shot and the nurse shook her head. John has had delauted before and I don�t recall him having a reaction so I don�t say anything more.

The nurse goes with John and gives him his second dose of delauted right before the MRI. As they are taking him in, I leave to go to the cafeteria. I haven�t eaten since breakfast and I am feeling poorly. When I return to the waiting area, I see I have a message on my phone. I had turned down my phone while waiting with John inside the MRI room and forgot to turn it back up. The message was from John. He got sick from the delauted and couldn�t do the MRI. Damn it. I went back to the MRI room and John asked where I was. John looks bad. He is pasty, sitting on chair with his head in his hand. His lips are cracked and dry. The MRI tech informs me an anthesiologist is on her way; they will do a sedated MRI. Hello, is that not what we wanted to begin with??

The anthesiologist arrives and I recognize her from the esophagus surgery John had looking for GVHD. She said we look familiar (we saw several doctors while waiting for the MRI who recognized us�another sign that we�ve been at OHSU too many times). I explained to her what has happened with the delauted and his lips, she immediately says John is dehydrated. They will give him a bag of fluids while he is in MRI. They get John settled on a gurney and started giving him �milk of amnesia�. Within minutes, he is out. The anthesiologist comments how little drug it took to get him out�then his oxygen stats go down and they have to help him breathe. No matter how many times you�ve seen your child put to sleep, the vision of a breathing bag being used makes you feel every hair on your body.

They wheel John to the MRI and say it will be at least an hour. I head up to John�s room picking up multiple chapsticks for him at the gift store.

I decide this is good time to get a nap in and fall asleep for five minutes before the pain doctor comes in the room. Ah, hospital life�we discuss John�s current pain versus his desire to be off of pain medicine. She said John being in pain is putting stress on his body so we need to adjust his pain medications. John won�t be happy.

I lay back down and in walks two nurses. Since John went down in a wheelchair, they need to take his bed to him. They don�t know how to get there with a bed and ask if I do. Unfortunately, I do like the back of my hand. I lead them to the MRI with a few laughs along the way. It was evident they were not transport as the bed hit several walls and corners. I jokingly asked if they are bringing John back and they giggled, saying �we�ve scared her now!� We get to MRI and I see John peacefully sleeping in the MRI. The tech said they had MRI problems when they got John in there so they started later. It would be another 30 minutes. The anthesiologist said all is going well and she will be on top of his pain when he wakes up. I look at the monitor and see a large mass taking up a good portion of his calf.

I go back up to his room and lay down. In walks Dr. Chang. Dr. Chang is baffled and doesn�t know what to think. They are discussing the idea I brought up of the bone stimulate product (BMP) they put in John�s hips a year ago to save them and subsequently collapsed. Could that product being doing something now? He said they know with transplant patients that the donor cells make it to the marrow somehow, but not all of them. Some of the cells will hang out in different areas. They are wondering if the BMP product is attaching to the foreign cells. Dr. Nemecek is calling a specialist in Seattle who deals with BMP. He said the BMP product is new then to introduce it to a bone marrow patient is an unknown.

John arrives and he is doing fairly well. He wakes up relatively quickly and is starving. Ned arrives with Kraft macaroni & cheese. Ned leaves to get hot water for the macaroni and cheese and nurses tell him how I led them to MRI. Apparently, some of the nurse thought I worked at Doernbechers. I guess I talk the talk and know the territory too well�another sign we�ve been at the hospital way too much!! John eats the macaroni and cheese and his hospital dinner in no time flat. I offer him the chapstick and his lips are fine. He must have been dehydrated.

The doctors want to know if John wants to go home. Pain will be his guide. After the doctor leaves, Ned and I bribe John with a meal from Chili�s. I feel like we can control his pain at home. John agrees and we start packing him up. We realize John�s shoes are still at MRI. Ned and I head to MRI to get his shoes. I put them in a safe place in the MRI room which was bit too safe since no one noticed them when John was done. Oops. We get home at 8:30 pm.

OHSU changed their computer systems on Sunday. Dr. Lamkin called on Monday without results. He said he is thinking about us and is working on it. Even though we don�t hear from him, he is thinking about John. I relay to him that John commented recently he is scared he will get these things in his brain or his heart and that the oncologist last week told him he could lose his leg. I couldn�t confirm that is what the doctor said since I wasn�t there and I doubt he said that but it�s what John perceived. Dr. Lamkin�s response, �..give this kid a break, he�s been through a lot�. Ok, did I miss something here? I am relaying information to him that I can�t counteract. I don�t want John tail spinning into a depression.

On Tuesday, John comments the mass in his neck is getting bigger and it�s difficult to turn his head. I did some serious praying Tuesday night. His neck??? Can't really amputate that�.

Dr. Lamkin called last night with the results. John has swelling and blood in his calf. Dr. Lamkin said the good news is what it didn�t tell us which is these things are NOT tumors. He said he thinks we have to biopsy them and I totally agree. He wants Dr. Turker to do it and he returns next Monday. He doesn�t feel this in an emergency and it�s ok to wait. Fine. I trust Dr. Lamkin.

It�s Wednesday and I don�t think we�ve really made any progress since last week�s journal entry�except I am more rested and ready to tackle whatever needs to be done to get these masses figured out.

In the meantime, John has not attended school in three weeks and we are still working on getting him a tutor. We are nervous he is so far behind that he won�t be able to finish his senior year. John misses his friends, misses getting out of house. I feel like we are going backwards. One day at a time�

Andrew went to the State Greco wrestling tournament this weekend and earned fourth place!! He weighed in a 191 which meant he had to wrestle bigger kids (it would have been better to be at 189). He wrestled kids at 215 pounds, who in Andrew�s words were �rioded� out. He said two kids at the tournament were taken away by ambulance. Dang!

My aunt Peggy is in recovery from her surgery. My mom and Rosie (mom and Peggy�s sister) are with her. The surgeon informed them that there was cancer in Peggy�s lymph nodes and they have removed them. Peggy will see her surgeon on Tuesday to get more information. She will start her chemo in three weeks, which will last for 3 -4 months then she receives radiation five days a week for six weeks. Come On Peggy!! Fight that Cancer Beast!!!!!!!!!!

There have two people I have been compared to in my life, my aunt Peggy and my cousin Jaime. My cousin Jaime was killed in a car accident three months before John was diagnosed with leukemia and now Aunt Peggy is facing breast cancer. There one thing I know about life is it�s all about change and how we deal with it. I am tired of dealing with bad change. Our family needs good change to deal with.

Sunday, April 13, 2008

Please pray for my aunt Peggy (my mom's sister). She found out this week she has breast cancer. She will have surgery on Wednesday to place a port then start her journey of radiation and chemo.

CANCER GO AWAY!!!!!!!!!!

Saturday, April 12, 2008

John arrived home about 8:30 pm yesterday.

In cliff note fashion: John is doing ok. No one knows what is going on. I think we may have the pain under control. He did get a MRI yesterday and we should have the results today.

I will write more later.

Thursday, April 10, 2008

John has been admitted to Doernbecher's.

Tuesday, April 8, 2008

We really don't know anything more than yesteday except that Johnathon is "strange"...interpretation, no one knows what is going on.

The good news is that Dr. Turker feels it's time for a team of doctors to start discussing John's case. Yahoo!

John had an x-ray this morning and the x-ray doesn't show the calf hematoma calcifying. However, the MRI will show it before the x-ray and the MRI showed it was calcifying.

Dr. Turker wanted to know what has been going on. There are so many things happening that are similar that the timeline is not solid in my mind. I quit carrying a notebook and recording in it. Thank goodness for this journal as I created a timeline from it. I was shocked to see how many times John has seen doctors this year so far.

Dr. Turker ordered a stat MRI so we are waiting for them to call.

I feel like Dr. Turker is going to lead this until he can figure out what is going on.

John's knee swelling has decreased. Dr. Turker thinks the blood thinners created bleeding in the knee. He isn't confident John had blood clots to begin with. I asked if the pressure of the hematomas could look like blood clots (remember chest blood clots that were actually Epstein-Barr virus) and he replied maybe. I could see Dr. Turker was thinking but he wasn't sharing...which is ok.

....just want John to be a typical teenager...attending high school...enjoying his senior year...damn cancer.

Tuesday, April 8, 2008

Quick update for those providing not so subtle hints today (Jerry and Dina).

John's leg has gotten worse. His knee started to swell and create extensive pain late last week and we thought we would see if it would improve with the blood thinners. It did not and Ned spent all day with Johnathon at Doernbechers today. John was almost admitted; they are concerned about his blood flow to his lower leg. They took an ultrasound and there is not a visible blood clot in his knee. The oncologist don't know what to do so tomorrow morning we will see Dr. Turker (orthopedic) and he will run a bunch of tests. Since John is on blood thinners, they can't perform a biopsy. John will stop the blood thinners today so in a few days they can do a biopsy. One thought was John has a hematoma under his knee. Pattern...blood thinners then hematoma then hematoma clacifies then blood clot happens near calcifying hemotoma...then blood thinners to fix the blood clots...hematoma...same drill different areas. I think a "Holy Crap" is appropriate here.

Of course, if there is something wrong with John, the dogs can't be excluded. Sherman went outside last night, barked, yipped, and ran back in the house closing his eye. This morning his eye looked like someone had pushed his eyeball into his head and the area was all red. He went to the vet before Ned took John to Doernbechers. The vet could not find anything wrong with the eye. There wasn't any foreign substance and the eye didn't show any scratches. Yahoo! Good news. We have to give him eye drops three times a day. Both Ned and I have to hold him and even then not all the drops made it into his eye. He does not like it. His eye looks much better tonight. Now John needs to follow Sherman's lead...

Monday, March 31, 2008

Spring break was relatively uneventful but it seems when it gets quiet, the storm is preparing to hit.

We had a wonderful Easter at my parent�s house. My brother and his family joined us. It was a fast visit as we drove up to Olympia and back in the same day. I didn�t want to miss more than a day of work. We left Andrew with my parents for spring break and he had a blast. He and my dad went golfing a couple times and my mom took him to food shopping with no restrictions. He was in heaven. It was nice to have a break from keeping him fed!

John had a good vacation. He didn�t do as much as he would have liked. It seemed like a lot of his friends were out of town. He drove to Stayton for an afternoon to visit his cousin Kelsey. He really enjoyed that. He worked a few days for Domino�s. However, by the end of the week he was complaining about his leg. He showed me and his ankle was quite swollen. I thought maybe he was on his feet more than usual getting trained at Domino�s and told to elevate his leg, take Motrin, and Ned said to put heat on it. He did. It seemed a bit better until today.

He came home from school early because his leg and hip hurt so bad. He woke up in severe pain and Ned & I told him to power through it. We weren�t sure if it was partially due to returning to school. When he came home, I told him to call his pediatrician. He gets off the phone and says the earlest phone appointment they had is for next week. ARGH. I told John he needs to call back and explain that his leg is swollen, the same one with the calcifying hematoma and he needs to take to the doctor today. He did and the advice nurse called me for a better explanation. He will learn�in time�I hope! The advice nurse said she would call me right back. She did and said John needs to go to Doernbechers ER because they don�t have the equipment to help him.

Well, I know Doernbechers doesn�t have an ER and I have a feeling with our insurance that going to OHSU ER would create issues. John is now 18 and there is confusion with individuals who are trained that adult Kaiser patients are not seen at OHSU or Doernbechers. I called pediatric oncology and the nurse asked how fast could we get there.

Dr. Lamkin decided John needed an ultrasound and the ultrasound showed that John has blood clots. He has one in the groin/hip area (remember the pain from a couple weeks ago?? We now know why.) and another one in his left calf. Both areas have the largest calcifying hematomas. Dr. Lamkin believes John�s veins are weak from the GVHD, which is creating all the problems he is having recently. John will be taking blood thinners.

So ready for boredom�.

Wednesday, March 19, 2008

7:00 pm � We are home and breathing easier. The CBC is good. John�s white blood cell count is a bit low but not alarming. It took a while to get the CBC count though. We were finished with our appointment, went to pharmacy, waited some more then asked John�s pediatrician to call us. She put a stat on the results but all of the other results were in before CBC. John�s pediatrician called us while we were driving home.

John does have pneumonia. I breathed a sigh of relief when she announced it. I doubt too many people do that but it was a relief to know there is something non-cancerous going on. He will be on antibiotics for the next 10 days and hopefully feeling better soon.

John�s asked about the bump in his abdominal area. John�s doctor decided to measure the ones John mentioned. When it was all said and done, John has 10 bumps. To visualize, they are like tumors ranging from 1 x 1 centimeters to 4 x 4 centimeters. The doctor felt the majority of them were hematomas because they were superficial. Two appeared to concern her some and she will be talking with Dr. Lamkin. The good news is that we know Dr. Lamkin has already looked at those two . These bumps frustrate John and the two larger ones in his calves hurt. Most of the hematomas are calcifying.

We took Cheyenne to the vet today because her knee looked odd. The vet believes the ACL surgery failed. We are trying a medicine to see if her body will fix it.

Morning: All is going....well, I'm not sure. I am trying to stay calm but I am having a more difficult time.

John was pretty sick March 4 - 7. He was running a fever and acting like he had the flu. For the first time that I can recall since we started this cancer journey, I didn't worry. I felt like he had the flu like so many others did. I did wonder if he had it a bit longer because of his immature immune system.

On Tuesday, John complained of stomach and bladder pain. He came home from school in severe pain. I suggested he called the advice nurse but he decided he would wait until Wednesday.

On Wednesday, it was better but barely. He called the advice nurse and they wanted him to be seen that afternoon. My mom was here visited to watch Andrew's district wrestling match so she offered to take him.

All tests came back fine and the doctor said she would call John on Thursday. No one called until Friday and he still didn't feel well. His stomach is sensitive to touch and he feels nauseated most of the time. He has been in contact with his pediatrician every few days.

On Tuesday, I was getting concerned that this is lasting so long. I called Doernbecher�s. The receptionist took my message and spoke to Dr. Lamkin. She called back stating Dr. Lamkin thought this is a pediatrician issue. Ok great. I like that. I breathe a bit easier.

Yesterday John spoke to his pediatrician and she has decided to do a full line work up of tests on him. She said I want to get a blood count. John said he became quiet and she asked if he was ok. OMG. What do you think? Maybe it would be a good idea to leave it at �full workup of tests� and wait to see if John asks what tests. If he doesn�t then let it be. Hence, we are all on pins and needles. Tests will be done tomorrow at 5 pm.

Andrew did relatively well in districts. He is now participating in Freestyle wrestling at the high school. He sure likes wrestling. We have him signed up to start high school football in June. Hard to believe that high school is so close. He had his sports physical on Saturday and weighed in at 187 pounds, 6� ��.

We reserved John�s dorm room today at Oregon State University. I am soooo excited for him!

John has a job! He started working at Domino's this week as a delivery person. Wilsonville Domino's has been incredibly supportive of John throughout his journey.

Besides that, I live at my desk. Less than four weeks to go!

Monday, March 10, 2008

Wednesday Update:

Cody's webpage
www.caringbridge.org
"codywippel"

Monday morning:
Please pray for the Wippel family. Their son, Cody, was recently diagnosed with bone cancer. DAMN CANCER!! Their son goes to high school with Johnathon. We don't know the family personally but I wish I knew what to do to help them out. It's a different cancer than what we experienced but cancer is cancer. Damn, Damn, Damn. Where's the cure????

Tuesday, March 4, 2008

We got a call today from OHSU (always makes my heart drop) but this time they were calling with GREAT news. John's bone marrow donor has agreed to provide us with his information. They will send us his information and we will make the initial contact. OMG! I have chills. What I know so far is the donor's name is Rudy, 50 years old, and he lives in the states (could have been international in 2005 but moved since the transplant). I can't wait to thank him for what he did. Without his bone marrow, John wouldn't have had the chance to fight for his life.

Tuesday, February 26, 2008

3:45 pm - We are back from Doernbecher's. The appointment went very fast...good sign! Dr. Lamkin couldn't feel the new bump in the hip area; it went away since Wednesday. Dr. Lamkin believes John did something while exercising..exactly what we thought but I guess we still can't assume. The mass in John's calf is quite firm and is probably calcifying, which can happen with hematomas. He said there isn't much you can do except surgically remove it and that isn't a good option right now. Dr. Lamkin asked if I had felt it and I said no. John shows me and explains it to me. Dr. Lamkin made me feel it and there is a large area of John's calf that is very firm. It would no doubt hurt when trying to exercise. John says his calf cramps quite a bit. The hematoma may never go completely away.

All in all things are good. It so hard to know which doctor to call and when. I was surprised by Dr. Smith's urgency to see Dr. Lamkin and it freaked me out a little. I thought I was underplaying John's complaining about his calf. Dr. Lamkin's attitude was "I'm not worried about it" then you feel like you may have overreacted being there. I know he doesn't feel that way but it's hard to know the right balance.

Thursday, February 21, 2008

Update:

Dr. Smith said John's hip is good and the bump is not a hernia. He looked at John's calf and said the mass is more firm than an hematoma. He thinks it may be calcifying. He wants John to go to Doernbecher's to be seen. John has an appointment next Tuesday afternoon.

I asked Dr. Smith if he would look at my ankle. He did and told me I need to check in to see him. The receptionist thought it was quite funny to have mom and son being seen at the same time. Basically, I have a grade two sprain...which means I partially tore ligaments. No break though. I am wearing a brace for at least three weeks and I need to ice often. He also wants it elevated above my heart but honestly I don't see that happening during tax season. I laugh just thinking about it...trying to work at my desk with my leg elevated.

Noonish:

So here�s the latest�

John came home yesterday in quite a bit of hip area pain. I kept asking what he did and he kept replying �nothing�. Later he informed me he did some new workout routines in weight training and thought one exercise may have hurt him. John described the pain to Ned and Ned thought it could be a hernia. Gosh, how hard is it to remember to take it easy working out???

Andrew had a wrestling meet last night. It was his first meet with contacts. He did well and his matches were much longer than usual. He thought it was great to actually see his opponent.

On the way to my car after the wrestling meet, the eclipse occurred. Very cool�except it was very dark (note the words �very dark� ). I forgot that I parked on a road that the payment stopped on half of it for a little while. My friend Stephanie remembered and started to remind me as I stepped off the concrete and�down I went. I hurt my left ankle. After a few moments of waiting for the intense pain and throbbing to subside, I was able hobble to my car. What a dumb ***!

This morning John�s hip still hurt so he called the orthopedic advice nurse. They want to see him today. He is to rest until then. They think he may have a hernia.

Andrew woke up in intense back pain. Must have been from last night�s meets. He is resting and taking Motrin.

My ankle is more swollen and it�s difficult to walk. John has offered his extra pair of crutches. I am fine. However, I will ask Dr. Smith to look at it this afternoon�heck, we�re there anyway.

Cheyenne is doing fairly well. Her wound was oozing some liquid on Tuesday so I took her to the vet. He said it�s normal fluid but we need to restrict her walking. He suggested we use leash to walk her upstairs at night and downstairs in the morning. Ned did this Monday night and Sherman FREAKED. He thought it was time to go for a walk. He cried, jumped, whined, etc. for at least 15 minutes while we were all trying to go to bed. The leash is not an option. We just grab Cheyenne�s collar and slow her pace down.

Still no boring moments�

Thursday, February 14, 2008

Happy Valentine's Day!!!

Andrew had a rough morning at school with his sports goggles. He came home at noon stating he does not want to attend school anymore with them. Well, he can't attend without them so this basically meant he wouldn't attend...not a great option. I called the eye doctor to see if Andrew could be put on a cancellation list and they had a cancellation today at 1 pm!! Perfect!!

Andrew's eye prescription has not changed. Not surprising. It's been the same since he was 5 years old. The doctor said since his eyesight has been stable for so long we can wait two years for the next doctor's visit. Yahoo!

Off Andrew went for trying on contacts...he was so nervous (as was I). He tried so hard and it was difficult. Within in the first 15 minutes, I thought we were going home again without them but Andrew kept trying. Ninety minutes later he passed!!! The person we had to help him was absolutely wonderful. She was so patient and she would tell him what a good job he was doing. In the beginning, I asked her to show him what she meant and she did. She then did it more often when she saw he was confused. I left after the first hour (per Andrew's request...I truly wasn't saying anything but somehow I made him nervous) and when Andrew came to find me, he was beaming. The assistant said he did awesome. We also ordered Andrew glasses and it will take 7 to 10 working days to get them in. Good thing Andrew was able to pass the contact test!!

Andrew is on cloud nine! He can't wait to wrestle and be able to see his opponent.

What a great day for Andrew!!

Tuesday, February 12, 2008

Cheyenne had her ACL surgery today and is doing well. She already had arthritis in the knee so the surgeon had to sand off the joint. She thinks she got most of it. They also cleaned Cheyenne's teeth and one tooth fell out. It was rotten. Poor girl. It was a front tooth and it could be a result of her jaw surgery a few years ago. Cheyenne will spend the night at the vet tonight and come home tomorrow. Sherman is going crazy. He keeps whimpering and looking for Cheyenne. Yesterday he cried/howled when people walked by the front window. I watched more than a few people jump�a little entertainment while working!

John continues to do well. He is attending full day of school and is a bit tired when he gets home. However, attending a full day already is very good and being tired is reasonable. He will probably started physical therapy to help him learn how to walk "normal". The muscles are very tight from not using his hips for so long.

John continues to reduce his pain medication. YAHOO!!!

Andrew went swimming last Saturday and when he returned to get his stuff out of his cubby, his glasses were missing. The facility was searched and they didn�t show up. Ned stopped by on Monday and they still had not found them. Andrew is legally blind and without his glasses, he can only see for a limited time before all goes blurry and he gets an incredible headache. Andrew was approved for contacts a while back but couldn�t put them in and take them out three times to be able to go home with them (Kaiser rule, I guess). We tried Costco on Sunday to see if we could get contacts or glasses for him that day and his prescription is too strong for them to have anything in stock. Ned took Andrew to Kaiser on Monday and as Murphy�s Law has it, Andrew is due to see the eye doctor before a prescription can be filled. Damn it! The next available appointment is next Wednesday (a week from tomorrow). Luckily, Andrew has sports goggles he can wear to get by. Not so cool for a middle schooler but it will have to do for a week or more. I�m sure it will take a while to get replacement glasses once we get the updated prescription. Gads, had I any idea he was due for an eye appointment, I would have done it.

Have I not asked for boredom??? :-)

Friday, February 8, 2008

JOHN HAS BEEN ACCEPTED TO OREGON STATE UNIVERSITY!!!!

YAHOO!!!!!!!!!!!!!!!! BRING ON THE ORANGE AND BLACK!!!!

Now we need to figure out where he should live. Ned and I think he should be in the dorms for the first year. Anyone with OSU dorm recommendations, please let us know. Thanks!

John is doing well. He attended a full day of school yesterday and today.

HAPPY DANCE!!! What an accomplishment with all that John has been through. He missed attending 2 years of his high school career due to his journey. Learning from a tutor and studying while not feeling well from chemo/radiation or surgeries is not an easy task. He's been battling leukemia or it's affects since eighth grade. ATTA WAY JOHN!!!!!

Today is a very good day!!

Tuesday, February 5, 2008

Day 904 Post Transplant

John is doing well. His left calf still hurts. I guess it can take a few weeks for a Hematoma to go away. His right hip is sore but improving. John uses crutches more than he doesn't. Best to take it easy. There is a six month window when the femur is more likely to fracture.

John is planning to return to school today for a few classes. He is nervous but I think it will be an overall positive experience to get him back to the school environment.

Friday, January 25, 2008

3:00 pm -

Dr. Lamkin called and without a doubt, it's a hematoma!!!!!!!!!!!!!!!!!

1:00 pm �

John had his ultrasound last night at 7 pm and MRI at 8 pm. Ned took off work to take John so I could get some work done (yes, tax season has started). If I weren�t so stressed out, last night would have been funny. John called twice as they were filling out paperwork for the MRI and one question was what are his allergies. John has quite a few to medicine including penicillin so they are important they are identified but since John called to find out all of them, it made me realize how much we take care of. After John went into the MRI, Ned text me twice. First one was basically he was bored and the second one 30 minutes later was �I love you�. Those three words freaked me out. My friend Janna was at my house having some Sake and I could feel the blood leave my face. I thought maybe Ned was trying to let me know bad news was coming. I immediately called Ned and he was still waiting�still bored. Whew.

John said the ultrasound tech told him there is blood in the center of the mass and a vein. I honestly don�t know what that means but I felt peace. It was strange. Unfortunately, the fear definitely crept back in during the night. I did a lot of praying.

Our appointment was at 9 am and we didn�t see Dr. Lamkin until 9:30 am. My mind was all over the place. I kept wondering why he was late when we are one of his first appointments and I would think it was because he had bad news and discussing the possible treatments with the other oncologists. I had to consciously change my thinking to some other reasons. It�s too bad you can�t turn off the emotions and mind when they are not doing you any good.

Dr. Lamkin came in and didn�t shut the door. I started breathing again. He would never tell us bad news with the door open. LOVE the door!

He said the ultrasound report appears to show a hematoma. Basically it�s a collection of blood from bruising and very common when on cumadin. I told Dr. Lamkin that Dr. Smith took John off of cumadin as of Tuesday. Dr. Lamkin immediately turned his head towards me and said �I didn�t know he was cumadin, now this all makes sense�. John replied that he told him and Dr. Lamkin said he didn�t hear John tell him. Dr. Lamkin is more comfortable that we are dealing with a hematoma in which we do nothing about. The MRI results will confirm it but I have yet to the get the phone call.

We are home. John is asleep. He also didn�t sleep very well last night. I feel extremely happy and numb at the same time. I won�t be completely relaxed until I get the confirmation from Dr. Lamkin.

Wednesday, January 23, 2008

Orthopedic appointment done. Much better day than yesterday.

The hip is healing well. Dr. Smith said pain would be John�s guide to how much weight he can put on it. He wants John to start exercising using a stationary bike, stair master, and swimming. Swimming may be difficult since the only pool we have in Wilsonville is outside. Burr!

Dr. Smith said John could return to school for the start of next term (early Feb.). He said John would determine if he is ready. John is scared that he may fall and I�m not sure how we will get over that. Dr. Smith said the first six months are the most critical when a fall could be very bad.

Dr. Smith�s medical assistant removed the staples. John commented how some of them were hard to see. Dr. Smith said that is why his assistant removes them. She even wasn�t comfortable removing them all and called in the staple remover expert in office.

John gets his blood tested twice a week for coumadin levels. When the nurse called yesterday to let me know the level and any adjustment I needed to make with his medicine, I told her about the masses and said we would be at a Kaiser facility a couple times this week so they wouldn�t have to come here. She immediately asked if we planning to stop coumadin. The question surprised me and I asked Dr. Smith today. He said John cannot have a biopsy with coumadin and it takes five days after you stop taking it for it to be out of your system. He said John is active and he can stop taking the coumadin. John commented how the support sock hurts his mass. Dr. Smith said John doesn�t need to wear the one on the left side for sure and if he quits using the right side to watch for swelling in the ankles.

Tuesday, January 22, 2008

2:00 pm -

Long day at Doernbecher�s without too much information.

Dr. Lamkin is concerned about the mass in the calf. He is not concerned with the other two masses (one in torso and one in hip area). He mentioned there is possibility leukemia could present itself as a mass but this doesn�t have those characteristics. He ordered an x-ray and the x-ray ruled out a fatty tumor or calcium deposit. He ordered an ultrasound but John kept getting pushed back for inpatient appointments. I told them he just had hip surgery last week and this was our first outing. We arrived at Doernbecher�s at 8:30 am and it was 1:30 pm. I was worried the pain was going to hit hard. We were already using a wheelchair to get from clinic to clinic. We had made an appointment earlier for an MRI on Thursday night. Ultrasound said to come one hour early on Thursday night and they would do it then. They were very accommodating. It�s great to be home. John is already asleep on the couch.

It�s been a very emotional day. I thank god for Doernbecher�s but I don�t want to be back there.

Tomorrow is orthopedic appointment. Hopefully all is going well with the hip. John says his knee is feeling better.

Friday, January 18, 2008

All is going relatively well.

John�s hip is healing nicely. He is able to get around in the house well on crutches. He is more independent at this point in post op than he was with the last surgery. I am hoping he will be able to get back to school by early February. He needs to be with friends and out of this house.

John is complaining that his knee hurts, which makes me nervous. I am afraid of AVN but hopefully it's post surgery pain.

We will have a busy week next week with doctors. Tuesday will be Dr. Lamkin (oncologist) to look at the masses, Wednesday with Dr. Smith (orthopedic) and Thursday with a psychiatrist (that may give you a clue to our week and my lack of writing).

We have scheduled Cheyenne�s surgery for Feb. 12th. It�s not the same surgery that we originally thought we would do. We spoke to Ned�s sister, Betsy, who works at a veterinary clinic and they thought a less expensive procedure would work. It will be a long recovery process but she�s too young to not do something. She won�t even walk on our hardwood floors anymore without a rug on them (she tore his acl slipping on the hardwood floor). With just bare hardwood, she will sit on the carpet and bark until someone helps her across the hardwood. Now, I have rugs down so she feels comfortable walking on the floor. Such a funny dog.

We are blessed to have today.

Thursday, January 10, 2008

9:30 am - John is coming home today!!! His hematocrit is low yet. He didn't get a third blood transfusion yesterday. The doctor said they aren't too worried about the low hematocrit since John is young and does not have a heart condition.

Wednesday, January 9, 2008

No �We are Home�. John�s quick recovery took a bit of turn last night.

Around 6 pm John commented he thought he needed a blood transfusion. I looked at him and said, �Your lips are not pale and the doctors would know if you needed one. You are doing so good.� John had taken three walks down the hallways (well..crutching), he was eating well, and looked great. Where the heck did the transfusion comment come from?

Later, Dave Carlson stopped by to visit. John was chatty as ever until 8:30 or so. He started to look pale. Dave left and John commented he thought he might have a fever. I felt his forehead and he didn�t feel real warm. John slept through dinner so I thought he might be hungry. Ned and I went to cafeteria and it was CLOSED. Oh my! It never occurred to me that the cafeteria could be closed. We returned to John�s room and he said he wasn�t very hungry and he pulled the blankets up around him. I suggested he ask the nurse to take his temperature and I headed home since Ned was there. Before I got home, Ned called and John was running a fever of 100.6. Nothing major. The nurses gave him some Tylenol. The fever went down and Ned left the hospital to go get food for John.

I was tired and was asleep by 10 pm. Ned didn�t leave the hospital until after 11 pm. He woke me up at 12:30 am stating John called and his blood pressure was low, his heart rate was high, and he was scared. I told Ned this happened last time and John needs blood. I gathered up my blanket and book and headed to the hospital.

When I got there, John�s blood pressure was 87 over 45 and heart rate at 125. John was very upset. He was worried he was going to die. John told them he needed blood but the doctor thought John was dehydrated and ordered IV solutions. Nothing happened with the IV solution except the blood pressure went to 79 and John was more upset. The doctor finally ordered two units of blood and it seemed like an eternity for it to arrive. John kept asking the nurses where it was. He commented his heart was hurting and he had a headache. The blood transfusion was hooked up by 6:30 am and within 15 minutes, his blood pressure at 97. John then slept most of the morning.

Dr. Smith visited later in the morning and said he wasn�t comfortable sending John home with his low hematocrit count. That was the first I heard John had a low count and I totally agree with John staying in the hospital. Dr. Smith thinks the leukemia or something has made it so John�s body doesn�t replenish the blood like a typical person�s body does and therefore, has needed blood transfusion after each surgery. Makes sense.

John�s hematocrit is still on the low side tonight so he may get another unit of blood. He is feeling better though. My mom has offered to spend the night with John so I can get some rest. I feel like a walking zombie.

Monday, January 7, 2008

Tuesday Update 1:00 pm:

Dr. Smith is very impressed how well John is doing and said he may get to go home tomorrow!!! YAHOO!!!!!!!!!

Monday Entries:

9:30 pm update: Thank you Aunt Joanne for updating today!

All is going well.

We started off a bit off this morning. I set my alarm knowing I needed to be up by 4:30 am so we could leave by 5:30 am. Alarm goes off, I snooze it, then get up and get ready. No problem�HA! Ned wakes up at 5:20 am and exclaims we have 10 minutes to get out the door. I am still in robe with wet hair�.some how I decided during the morning that we needed to leave at 6 am so I slept until 5:00 am. I ran to John�s room and thank goodness he didn�t get messed up and he was already in the shower. Ned and I went in high gear and we left around 5:45 am. Not the start we wanted. Thank goodness the roads were clear and a radar gun didn�t find me. We arrived at the admitting desk at 6:05 am.

Kaiser Sunnyside went much smoother for check in than St. Vincents. Since we were a few minutes late, we missed the rush and we were helped immediately. We asked about a private room and the admitting person suggested we have Dr. Smith write an order. If you recall, I did call the admitting office a few weeks ago to ask about a private room and they said all I need to do was request one. An order is difficult but I would have rather asked Dr. Smith prior to the morning of surgery. The admitting person gave a bright yellow envelope and sent us to the surgery waiting room.

The surgery waiting room isn�t anything like St. Vincent�s. It was a smaller room with chairs and much louder. Not a problem, just different. We completed more paperwork and John was called back to pre-op. Ned and I weren�t allowed to go with him for the first 30 minutes or so. We finally got called back and John was ready for surgery. Within a few minutes, they gave him verstad and John was a happy camper. He gave us many laughs. Unfortunately, John�s surgery time was pushed out to 8:40 am and verstad wore off before they rolled him back. However, John was in better spirits this time and more relaxed overall.

Ned and I headed back to the surgery waiting area, grabbed a table, and waited for my mom and dad to arrive. They stayed at the house to make sure Andrew got to school. Once they arrived, we started playing cards and kept our minds busy until 1:15 pm when Dr. Turker came out to tell us all went well. They did do a hip surface replacement (not a total hip replacement). He said the ball was very soft and it was a good decision to get it taken care of now. We really like Dr. Turker. He is like John�s guardian angel. He wasn�t required to be there but chose to be at both surgeries. He is the pediatric orthopedic who did both core decompressions earlier this year. He doesn�t do hip replacements but he�s been there for us the entire time. Dr. Turker said John was getting stitched up and Dr. Smith should be out within 30 minutes.

Dr. Smith arrived in about 40 minutes and said he is happier with this fit than the left hip (and he was quite happy with the left). He thought the surgery went very well and John would be in recovery for a couple hours.

We were all starving so we gave the surgery room desk our cell phones numbers and off we went to Gustav�s. It was a great lunch but my mind kept going back to the hospital. I wanted to be there when they called us back.

My dad dropped us off at the hospital and he headed back to Olympia. My mom, Ned, and I went back to the full waiting area and waited some more�then waited some more�waited some more. I asked a couple times about Johnathon and finally was told at 4:25 that he was being transferred to his room and to give them 10 minutes.

I gave them exactly that�10 minutes. I went to John�s room and he was frustrated. He wanted something to drink or eat and they wouldn�t give it to him. He said his pain was worse than last time. I was able to settle him down then called my mom and Ned to the room. They arrived and he got upset again. We quickly got him settled down mentally, the nurse gave him some pain medicine, and he went to sleep. I think there was too much time being alone and confused with not being allowed a popsicle or anything. Different hospital, different procedures, extended time in recovery = too much.

John does have a private room. I think some walk in closets are bigger than his room. My mom is staying with him tonight and she will be challenged to get the chair/bed to be able to extend all the way. I am really glad he got a private room but it�s cozy.

I think John is doing better this time than last time. He doesn�t appear to be in as much pain and his color is much better. He was given the ok for a liquid diet while we were there and he was enjoying diet coke and many popsicles. His voice is very hoarse.

Stephanie Fisher was kind enough to take care of Andrew this evening for me. I thought we might be back in Wilsonville around 6 pm. She was Andrew�s taxi and made sure he has something to eat. Thank you Stephanie!

John is in room 211 at Kaiser Sunnyside Hospital. He should be there until Thursday.

1:15 PM: Surgery went well. WAHOO!! John got a hip surface replacment.

8:40 AM: John just went into surgery. He was doing great this morning!

Saturday, January 5, 2008

Day 873 Post Transplant�.YEA!!! It�s been an incredible 873 days too but thank god we�ve been able to experience them.

The orthopedic NP called Thursday afternoon and said Dr. Smith plans to go ahead with the surgery. He will look at the mass on the calf prior to surgery. We are to arrive at Sunnyside Kaiser Hospital at 6 am on Monday. Surgery is schedule for 8 am.

Dr. Lamkin (oncologist) called late Thursday night after I had left two voicemails and e-mailed. I was ready to drive to Doernbecher�s. He said he �isn�t worried� about the masses. I was elated to hear those words and my mind went to mush. I asked if I should be contacting him or the pediatrician and he said I should be contacting him. I asked if there is a better way to get a hold of him because the last few days have been hell. He said I did what I should have and he isn�t sure why the nurses didn�t forward the message from Monday. He said he wasn�t working on Friday and since John�s hip surgery is Monday and he can�t travel for a while that we should make an appointment to see him once John can travel. He said he would look at the masses for John�s and my piece of mind.

Later, my mind started working again and I wish I had asked what does he know about the masses. Did you read the NP�s report? Why isn�t he worried about the masses? Does he an idea what they are? I knew when I was talking with him that I wasn�t asking the right questions but the brain wasn�t cooperating.

Right now, we are focusing on surgery and not worrying about the masses. I would much rather know what they are but I guess that wouldn�t happen for a while.

Andrew is at wrestling qualifier meet today. He still loves wrestling. He also continues to grow, grow, grow�on Dec. 31st, he weighed in at the doctors at 179 and today he weighed in at the meet at 190. I swear he puts on at least 5 pounds a week and we are paying for every single pound dearly. The other morning when I went to wake him up, there were two wrappers on his bedroom floor. Both were full of 1 pound each of sliced ham and salami the night before. It�s good he is choosing meat over chips, etc. but I may have to take a loan out to go grocery shopping. Ha, ha!

We have not decided what we are going to do with Cheyenne. The ACL surgery is quite expensive and with everything else going on, it�s been hard to handle it all. The vet said we had a couple months before we had to make a decision. We�ll keep her on pain medicine/muscle relaxers until we get through John�s surgery.

I somehow hurt my back during Christmas. My two small fingers on both hands are going numb periodically. It�s getting better but it�s been very uncomfortable. I walk around with a heating pad on my neck and John thinks I look like the hunchback. Sleeping is one of the worst times. I may not stay overnight with John this time due to my back. I�ve been having a hard time with it but he is 18 and it�s not like the stays at Doernbecher. I�m just not sure how he will handle it especially the first night.

Monday, December 31, 2007

We had John�s pre-op appointment today with a nurse practitioner. She is the same one we saw for the last pre-op appointment. She thought it would a slam-dunk appointment since the information should be current from last surgery but since we are at a different hospital, she had to enter the information again and ask the questions again. While she was asking questions, John started to play with his calf muscle. He looked at me with wide eyes and blurted out, �I have a bump.� The NP said she would look at when she is done asking questions but John was too focused on the bump and was no longer able to concentrate on what she was asking.

The NP looked at the bump and measured it. John mentioned he has a couple bumps in different locations for a while and they haven�t changed in size. John kept commenting he scared; I�m sure desiring some kind of comment from the NP not to worry. John was definitely starting to lose it. The NP left the room to get a printout and I told John to pull it together. He started crying, stating he doesn�t want cancer again.

The NP was back within seconds and John did settle down a bit. The NP commented this could prevent surgery on Monday but Dr. Smith wasn�t in until Thursday. She said they would probably want a biopsy of it. I called Doernbechers as we were leaving the orthopedic office but I think everyone is gone for the holiday. I doubt this is much they can do but I thought it wouldn�t hurt to see if someone could look at it so we could have some ideas what it could be.

John is in a bit of daze. He is scared. I�m not sure how to help him. He asked if I was scared and I told him we don�t know what it is so why let it grab a hold of him�a lesson learned through our experiences.

Have I mentioned I�m done with bumps, obstacles, etc???

Wednesday, December 26, 2007

I hope you all had a very Merry Christmas! We had a very nice Christmas. We stayed home and my parents came down to join us.

Santa brought marshmallow guns for all the boys (my dad, Ned, John, and Andrew). We had marshmallows flying, lots of laugh, and John maneuvering to get out of the line of fire (he also returned fire). It was fun to watch and participate a bit. Ned woke up to marshmallows hitting his head�guess that is what happens when you try to sleep in on Christmas! I was surprised how well the marshmallow guns worked. Sherman also enjoyed the ammo�as soon as he heard a gun, he�d run to find the mini marshmallows on the floor. We had to stop shooting....afraid he may get sick. I am finding marshmallows today on windowsills and behind furniture. :-)

Cheyenne hurt her leg a month ago and got better. Last week she hurt it again and it never got better. She didn�t whine and we could touch her right hip but she would not put weight on it. We took her to the vet today and after x-rays, found out she tore her ACL. I never knew a dog could tear an ACL! Well, looks like she is going to have surgery. If you recall, when John had his bone marrow transplant, she was diagnosed with a cancerous tumor in her jaw and had to have part of her jaw removed. Now John is having hip surgeries and Cheyenne is going to need knee surgery. She needs to stop this.

Maybe this is the grand finale of 2007 so 2008 is just cleaning up with 2007 stuff and we�ll have clear sailing from now on�

It�s all-good. We are dealing with manageable stuff. However, Cheyenne will be down for eight weeks and John will be down for a few weeks. I really don�t need more gray hair!!

If anyone knows of a good dog surgeon, let me know!

Sunday, December 9, 2007

John had his first doctor�s appointment since surgery on Friday. We went early to get x-rays. I was a bit nervous since Dr. Smith said the surface hip replacement could fail within six months. Dr. Smith came in the room and I unconsciously held my breath. When he started to talk, I could not sense stress in his voice and I relaxed.

Dr. Smith first started to discuss the next surgery. John told him that his mom wanted the surgery, not him. My mind started to race of how I should react. I don�t want to come unglued and look like an overbearing mom as John�s statement indicated. I thought about asking if I should walk out of the room. I didn�t know what to do. I would never schedule a surgery if John didn�t want it.

Dr. Smith immediately crossed his arms and sat down. I think the temperature in the room got extremely warm very fast. Dr. Smith asked a few questions and it became apparent John was afraid to have the second surgery and he wanted some time to not be house bound. However, after a few things were discussed, John said he does want this surgery. After the appointment, John said he didn�t mean it as it sounded and he realized it after he said it. Aaggghhh!!!

Dr. Smith said John�s left hip looks good. He put up the x-ray and we could see the metal replacement. John commented how his hips now look even and they do. Before the last surgery, John�s left hip was higher than the right hip.

I asked if the right hip looked worse than before since the pain has been getting worse rapidly. Dr. Smith put up the old x-rays and it does not appear to look any different. Yea! Dr. Smith feels he should be able to perform a surface replacement on the right hip but we are to understand he could end up changing his mind during surgery.

Dr. Smith told John it�s time to start putting weight on the left hip. Since the right hip is hurting, he may need to use a crutch or cane to help support that side. John doesn�t not have restrictions, pain will determine what he can or cannot do. Dr. Smith did tell John he will never be able to run again. John is having a hard time accepting that.

When we got home, John put the crutches aside and walked. It made my eyes water. For the first time in many, many months, I saw John walk without crutches and in more months walk without throwing his hip. His walk now looks somewhat normal and he stands normal. It is a beautiful site.

Wednesday, December 4, 2007

I hope everyone is enjoying the holiday season!

Life has been busy as usual. Andrew�s activities of wrestling and basketball keep us busy transporting or hanging out at tournaments. He�s been in three tournaments now and basically he leaves at 6:45 am and returns at 4:00 pm. Our friend Chris Zimmerman has been taking Andrew so Ned and I don�t have to get there until the matches start at 9 or 10 am and that is nice. It�s a long day to watch your child wrestle in three matches. I am going to start packing an activity bag for myself! Andrew is now weighing in at 171 lbs. Oh my. My baby� :-)

John has a tutor on M-W-F mornings and Tu-Th afternoons. I have to be home while the tutor is here (school policy). Sometimes it gets interesting trying to get Andrew where he needs to be and to be home by the time the tutor arrives.

Ned and I took the boys to the Transiberian Orchestra on Sunday. Ned and I went in 2003 and loved it. We wanted to take the boys and we finally thought this was the year. Of course, I purchased the tickets before we knew John was having surgery. I decided to keep the tickets�just in case. This was John�s first outing and I was ready with breakthrough pain medication. Because John had hip problems when I purchased the tickets, we were given seating for disabled individuals. John didn�t have to negotiate any stairs. We had wonderful seats and it was almost as exciting to watch the boys, as it was to watch the concert. Andrew�s mouth dropped open more than once. It will be a treasured memory. John was feeling ok after the concert and we went out to Spaghetti Factory for dinner. I felt like a nag asking how he was doing frequently but I was afraid the pain could get out of control. It never did. He did great.

My Uncle Lee�s funeral was Monday. Funerals are so difficult. It was good for my grandma and grandpa but it broke my heart to watch them. Family members are taking turns staying with them. Andrew and John didn�t go. Andrew ran a fever Sunday night and I didn�t know how John would do physically or emotionally.

Today is John�s last day of blood thinners!! Yea!! No more weekly blood draws to check levels. No more adjusting the number of pills on certain days to maintain the right level. No more having to take them at 6 pm everyday. Since he had to take those at 6 pm, he took all his evening medicines at 6 pm, which meant he had to take his morning medicines at 6 am. I am ready for later morning time so I can sleep in a bit on Sunday�but it will be a temporary reprieve.

John�s right hip is hurting. We started to decrease his pain medicine and were only able to decrease it by 15%. We didn�t decrease the nighttime dose and the pain was bad enough that it is waking him up. I e-mailed Dr. Smith on Friday and his assistant called today. Surgery is scheduled for January 7th at Kaiser Sunnyside. John has mixed feelings. He hasn�t had the opportunity to not use crutches yet. He wants to go to school and hang with friends in the worst way. This surgery will not allow him to return to school until February. However, the good thing is once this is done, hopefully we will be done with surgeries and bumps in the road. I pray he will be able to experience his final semester in high school as a typical student. What a blessing that would be!!

Sunday, November 25, 2007

Monday: My Uncle Lee passed away. I know he's not in pain and probably happier than he's been in years. This will be very hard on my grandparents. Uncle Lee was the third born out of seven kids. My dad is the oldest and Aunt Joanne is the youngest. Lee had four of his siblings with him.

Sunday: Happy Belated Thanksgiving.

We had a wonderful Thanksgiving with Ned�s sisters, Louise and Betsy (and Betsy�s family). We actually prepared two turkeys this year. Ned and Louise wanted to try deep-frying while John and I wanted to try baking a brined turkey. Both turned out great!

John continues to do well. We started decreasing his pain medicine (YEA!). It will be a slow process. Unfortunately, John�s right hip hurts and he complains it is catching like the left one. I am guessing the right surgery will be soon. We see Dr. Smith on Friday, Dec. 7th.

John is definitely going stir crazy. He wants out of this house in the worst way. We aren�t comfortable letting him go anywhere yet...except to Chevron for a soda, which is only a couple blocks away. We want the doctor�s approval first.

Andrew has attended two wrestling meets since the last update. The first wrestling meet he pinned all three opponent within 20 seconds. We think he was on the mat less than one minute the entire day. The last meet he attended was a more competitive meet (open versus league). He ended up with second place but he lost two matches. He was frustrated but it�s a good experience for him. The second meet was near Stayton so we visited my grandparents on the way home. It�s been a while since we have seen them and they were so surprised how much Andrew has grown. Grandpa kept laughing when he looked him and would ask, �what grade are you in?� Very cute.

Andrew's doctor called and his EKG was PERFECT!!!!

Please pray for my Uncle Lee and family. He was admitted to ICU yesterday with a failed kidney and liver. He is on kidney dialysis and using a breathing tube. The doctors haven�t given the family very much hope in Uncle Lee recovering. Uncle Lee didn�t leave an advance directive. The family will probably make some hard decisions this week.

Thursday, November 15, 2007

Ok, Big Green Fan. I got the hint...after I received a phone call from Jim Beltz letting me know I haven�t updated in a while.

John is doing well. His pain is manageable. He receives pain medication every 12 hours and by the 11th hour he is starting to complain about pain. I have seen a decrease in break through pain medication so we are making progress. He is also moving around more. John seems happier overall. Yea!

Someone from PT visited on Monday and she thought John is doing well getting around. She will visit every week. A nurse from Kaiser comes to the house twice a week to draw blood for Cumatin levels. John will be on Cumatin for four weeks and the level needs to be checked regularly and adjusted if necessary. They are worried about blood clots after hip surgery.

Johnathon has three tutors! He has one tutor who covers English and History. She comes to the house three times a week. Because John is in Calculus and Spanish, his teachers are tutoring him. The Spanish teacher will tutor two times a week and the calculus teacher will also tutor two times a week. Hopefully, he will be caught up from missing so much school when he returns in January.

Andrew had another EKG done on Monday. Kaiser called Monday morning and said that Andrew needed to go to Doernbechers for further testing but they wanted to do another EKG first. Ned took Andrew and the person administering the EKG thought it looked good. We are still waiting for the doctor to call and confirm.

Andrew has been extremely busy. He joined the Wood Middle School basketball team along with the Wilsonville Mat Club (Wilsonville community-based youth wrestling). He also goes to the high school wrestling practices. Our day on Tuesday went like this� basketball practice before school, game after school, go home and inhale a snack then off to wrestling practice, get home around 8:30 pm, inhale dinner and attempt homework. Yesterday he did the same routine but went to high school wrestling practice instead of a basketball game. This will be interesting. At least the wrestling tournaments will be on Saturdays. I�m trying to stay with John as much as I can but Ned works in the evenings and I needed to be at the youth wrestling practices this week. Unfortunately, the wrestling room does not have cell reception and I don�t like being out of contact with John. What was I thinking to help start a new youth program???? :-)

In the midst of all that, we are wrapping up youth football. Gathering gear, taking inventory, and preparing orders for next year. My living room looks like a football locker room. Never a dull moment. Gads, tax season will be here before I know it. Ugh.

It�s all good.

Friday, November 9, 2007

2:00 pm

We are home.

Thursday, November 8, 2007

7:45 pm:

John's drain tube from his incision was taken out and his IV was also taken out. Yahoo!! John has two incisions. One is about 10 inches long and the other is an inch or two.

John is doing much better. Pain is relatively low, he is getting up more often, and sleeping less often. I think it is a good possibility we will be home tomorrow.

There's no place like home!!

1:30 pm:

Andrew is ok. We think the pain was created from heart burn. However, the EKG showed an long QT, which the doctor explained is dangerous for athletes. It's the reason why athletes can have cardiac arrest during activities. Andrew's long QT is weak but we have to get further tests within the next week. In the meantime, he is ok to continue playing basketball and wrestle. Andrew was excited to have a hospital wristband like John's. Andrew asked for a second one stating the first one was too loose. When we came to visit John, he gave John the other wristband and told John to LiveStrong.

My brother is home. The hospital thinks he passed a stone before tests were done. His tests results indicated there was probably a stone. Wade does not want my mom going to Seattle so she is staying here to take care of Andrew.

My Uncle Lee is going to the hospital. The doctors say there something severely wrong with his pancreas or liver.

I forgot to mention my grandfather fainted and hit his head on Tuesday. He is fine but it was another thing to add to this week's activities. So far it's all my dad's family...damn. Those planets need to get aligned NOW.

While I was in ER with Andrew (nice commute...fourth floor to lower level), Dr. Smith came to see John. There is a possibility John can go home tomorrow. We'll see. It will take decreasing pain medicine. John did crutch down the hall today. It was nice to see him dressed and out of his room.

9:30 am:

Life can suck. I have heard the saying over and over again that God will not give you more than you can handle and I think God and I need to have serious chat.

John is doing ok. Pain is more than we expected but he did do a little walking this morning. I doubt we will go home tomorrow.

Yesterday my Uncle Dan had heart surgery and he is doing ok.

My Uncle Lee has yellow skin and eyes. Aunt Joanne and Aunt Lyn took him to the doctor yesterday and after many tests, they are still trying to find out what is going on. Without a doubt, it's his liver.

Last night my brother was taken by ambulance to ER. He is in a lot of pain. The doctors haven't figured out what is going yet. They have ruled out gall stones and kidney stones. Ned and I are figuring out what to do with Andrew so my mom can take off to Seattle. While we are doing this, we get a call from my mom and Andrew's school called. He is having severe chest pains. Ned left John's room to pick up Andrew and they are on their way to St. Vincent's ER.

OMG!

Wednesday, November 7, 2007

3:30 pm:

John had an ok night. He slept for the most part but would wake up from pain or needing to urinate. They were giving him massive fluids and we were happy all was working properly but it was very painful for a while and he also had to sit on the side of the bed. The additional movement would create hip pain.

John did eat some but didn't hold anything down. He is doing better now. He is loving Chicken Noodle soup!

John's stats are stable. His oxygen satuaration is good so they took off the finger monitor. Thank goodness. The alarm went off everytime John moved last night and the alarms aren't soothing.

John is getting two units of red bloods cells. He is getting his second unit now and looks MUCH better. John says he feels much better too.

We had three doctors stop by this morning. I think many are interested how he is doing. Ned, I, & John saw an x-ray of his hip surface replacement. The entire surface replacement and socket is cobalt metal.

John has walked a bit today. He had incredible pain around noon, his hip was cramping. They got the pain under control and he was ready to start making progress. Good to be young.

The staff here has been interested in:
1. Why were are here, not at Doernbechers
2. How do they compare
Everytime someone new walks in, they comment how they have reviewed John's chart. I wonder how large it is and must state where he's been. The nurse today told us their pediatric rooms are more like the Doernbecher rooms, which would make sense. You'd want accommodations for the parents and things in the room to keep the patient occupied.

I think overall John is doing well. The pain medication has been increased, instead of decreased like I hoped. However, he did just have surgery yesterday. All medicine is by pill; a PCA pump was never needed. YEA!

Tuesday, November 6, 2007

6:00 pm:

I have not missed the hospital life.

All is better. John's heart rate is 130. The machine was misreading it, which makes sense. I didn't notice his chest making fast movements.

The whole commotion scared John. He kept asking what is wrong with me? What is wrong with my heart? When we had a moment to ourselves, I suggested it may be the all the pain medicines. When the nurse came back, John informed him that he knew what was going on...it was his pain medicines. :-)

The nurse called Dr. Smith. They took a sample of John's blood to see if he needs a unit of red blood cells. They also openned up his IV fluids. Dr. Smith thinks John may be dehydrated.

John is pretty much asleep unless you wake him to ask a question. The pain has been under control. He has sat up on the side of his bed (and would rest...i.e. fall asleep). They will have him walking tomorrow.

5:15 pm:

I'm in John's room!! He is in Room 419.

He is doing ok. They are worried about his heart rate right now (machine says 250 and keeps setting off an alarm) so he is gettig an EKG and his blood pressure is low.

3:00 pm:

Still in waiting room...still haven't seen Johnathon.

Dr. Smith was happy with the surgery. He said it was a technically difficult surgery but all went well. He thought we would be called back shortly to see John but we waited and then ran to get quick lunch...we could have actually tasted our food instead of inhaling it. Oh well. St. Vincent's gives us a beeper so we know we didn't miss anyone.

Dr. Smith said John's pain was under control and he had spoke to him. John had some blood loss and they are recycling some of it.

Sounds like recovery will be easier from a surface replacement but Dr. Smith doesn't want all weight on the left side for six weeks. He thinks we may have given John a few years before hip replacement. Who knows what technology will have available by then.

12:30 pm:

Surgery is almost done! Dr. Turker came out and said all went well. They did do a hip surface replacement and it's a good fit. We told him thank you and he said Dr. Smith did all the work; he was the retractor boy. Apparently it was a lot of work. Dr. Smith is stitching John up now and will come talk to us soon. John has to be in recovery for at least one hour (law) and then we can see John when he goes to his room.

I am very happy but I feel like someone hit my chest. The waiting sucked. I didn't correct Joanne's original update; we were told 2 to 3 hours for surgery so we were beyond that. We know that can happen but your emotions don't listen to reason. Anyone observing my mom, dad, Ned, or I for the last hour would have seen a few streseed out individuals. Dang, this must be more gray hair....

I want to see John.

11:00 am:

No news yet. Argh. I hate this.

I forgot to mention in the last update that John will have three orthopedic surgeons and two anthesiologists in the surgery room. Apparently he is in a closed room, which means once surgery starts no one comes in and no one goes out.

I'm ready for Dr. Smith to come out and let us know all went well.

Please pray for my Uncle Dan Dunn and his family. He had chest pains on Sunday, went to the hospital, and will have heart surgery tomorrow. There are many blockages. He and my aunt Cherryl have three children, the youngest is the same age as John.

9:00 am:

Thanks Aunt Joanne elf for updating for me this morning. St. Vicent's has wireless network so I can get online. YEA!

We were up and ready to leave with 20 minutes to spare. I started to look through our surgery notebook and saw the note that said to take a shower the night before and the morning of surgery with a special soap. The soap is to help cleanse the skin. We couldn't make up for last night's missed shower but there was enough time in the morning...but we doubt John has quick shower in his vocabulary. He took a relatively fast shower and we were out the door only five minutes later than we wanted to be.

I thought traffic would be light, light, light at 5 am. I was wrong. Poor people who do this 5 am thing daily. Ugh.

We arrived at 5:30 to the surgery waiting area and were asked to take a seat. They were processing 12 patients ahead of us. We look around and the large waiting area was full. We found a couple computer chairs and it wasn't long until it started to clear and we could sit on a couch. They told us only one person could go back with John but they ended up letting us both go back.

John was doing well. He was more relaxed than I anticipated. The St. Vincent's staff has been exceptional. They had a little problem with the IV and John of course didn't make any comment...NOT. Once the versad was in, he was happy, happy, happy.

The anthesiologist (different one than last week) prefered to do a general instead of a spinal. He said John is healthy (LOVE that word!) and a general would be fine. A spinal may give him a headache because he is under 25 and he would be aware of the surgery. John does not want to aware of anything. In addition, John has a high tolerance to pain medicine from his bone marrow transplant journey so the general is a better option.

As they wheeled John to the surgery room, the anthesiologist told Ned and I that they will take good care of John. John responded, "you better or you will have the wrath of my mom." OMG.

John should be on floor 4 but we won't know for sure until after surgery.

7:47 am:

John went into surgery at about 7:40. We arrived at 5:30. Surgery is expected to last approximately 3 to 4 hours. I will update you as we go. John was doing good today, ready to get this done! The staff here have been absolutely wonderful. We are so grateful.

Friday, November 2, 2007

Happy Friday.

The weather is absolutely beautiful today!! The sun is shining, there's a lot of fall color, and a sweatshirt is good enough to stay warm. YEA!

We are a bit anxious about the upcoming surgery. John is having the hardest time; he is really afraid he will die during surgery. He is having a hard time at school this week too. We have one teacher who doesn't understand why John can't have the surgery during the summer. I have e-mailed this teacher three times during the year about John's situation. I don't get it. I'm not sure if there is any way to make the teacher understand. Another teacher is creating quite a bit of stress. I am trying to be neutral on the situation but I've stepped it up a bit this week. I don't like the way the teacher is responding. I know there are two sides to every story but the reactions John is having are not typical to teachers. I don�t like the comments and reactions John is sharing with me. I'm trying to keep calm because I know with my current tension level, the teacher could be someone to unload on without meaning too.

I spoke to someone at Doernbecher's today about John's general behavior and my excitement to get John off of pain medicines. She reminded me that John had many hits full body radiation and heavy chemo and we could be experiencing some of the effects of that, not just the pain medicines. Damn Cancer.

Wednesday, October 31, 2007

HAPPY HALLOWEEN!!!

Day 807 Post Transplant

Dr. Smith (orthopedic surgeon)called today.

The Seattle surgeon, Dr. Toomey, who is studying ceramic on metal data does not recommend this for Johnathon. The data is indicating the ion release is the same for ceramic on metal as metal on metal and because ceramic on metal is still being studied, they don�t know as much as metal on metal. Dr. Toomey had a similar case as John�s and used metal on metal.

Dr. Smith met with world experts on hip replacements and hip surface replacements last week. He spoke to three surgeons about Johnathon�s case.

The first surgeon is from England and has performed over 4,000 surface replacements. He said he would try surface replacement first. The surgeon really won�t know if John�s hip is good enough for a surface replacement until surgery. The MRI wouldn�t give a good enough analysis. If a surface replacement were tried, it would be with the understanding a hip replacement may be done instead. If a surface replacement works, it is an easy conversion to a hip replacement later.

The second surgeon is from Australia and he has performed many hip surgeries. 7,000 of his hip surgeries over 7 to 8 year period are on a registry and data is available. He would recommend surface replacement with the stipulation that if the bone wasn't good enough then the surgeon would immediately perform a hip replacement.

The surface replacement could give John 4 to 10 years or 4 to 6 months. It is an unknown. However, it would give John more time until a hip replacement is needed and the stem from a hip replacement would not affect the femur for a second surgery. Major bonus.

The third surgeon is from India. He is studying AVN and surface replacement. He recommended John have a hip replacement.

Dr. Smith said there is absolutely no evidence that ions in serum or urine of patients with metal on metal has any adverse effect. He said if there is a ceramic failure, it is very difficult to fix. The ceramic fragments are difficult to completely remove and it is difficult to revise. There are stability issues because ceramic doesn�t offer the wide range of socket & ball sizes that metal does and ceramic could result in a audible squeaky hip. He also said because the combination (ceramic and metal)is not FDA approved that patients have to be included in a study. He made it clear that this is combination is in the study phase and there are many unknowns.

Dr. Smith recommends a surface replacement with the final judgment call being made during surgery. If John needs a hip replacement, he recommends metal on metal. We agree.

I look forward to not being so medically educated.... :-)

Wednesday, October 24, 2007

Last appointment down until surgery.

We met with the pre-op nurse who reviewed everything I was told on the phone when I registered Johnathon last week. It was evident she has a standard speech and it could have been her who I spoke to last week. She did inform us that not all rooms are private at St. Vincent�s and we need to request a private room when John checks in for surgery. She also said the fourth floor is the better floor. Good information.

We then met with the anthesiologist. The more I think about our visit with her the more I dislike how the meeting went. She would explain what John could have and what he won�t have�in detail. For example, John could have a spinal, which she recommends for many reasons. Ok, I�m good with that. She then says John doesn�t need to make a decision right now. Did he indicate he didn�t want too? Let�s take care of it and go on. She then describes in detail what an epidural is and how it is different than a spinal. She explained how John may feel he can�t breath because he can�t feel his chest but that isn�t the case because as long as your arms are ok, your breathing is ok. Why you ask?? Because breathing is controlled about your arms in your spine. What does John say? �I may not be able to breath?� Too much information and he picks up on the scary stuff. We even got a lesson about C3, C4, C5 and paralysis. However, when I hand her the OHSU pain management, Dr. Lamkin, and Dr. Nemecek information since they are familiar with John�s drug interactions, she hands the info back to me stating it won�t do her any good. I take a deep breath. I don�t want to alarm John but what the heck? I was ready to come unglued on her. She has bits of information, we have 30 minutes to meet and a lot of it is on unrelated stuff. We were even given detail of the different needle types and how the vertebras� are separated for different methods. Interesting info but not at the right time. I felt like I was child being spoken to from a parent. I evidently knew nothing and what I did was not important.

We were supposed to be in a class at 11 am. Someone had to come in the room during our meeting with the anthesiologist to let her know we needed to go. We walk out to the hallway and there is a group of people waiting for us. Three are hip replacement patients standing�waiting. So unnecessary. We should have been done in time.

We go to our class and without a doubt, John and I are the youngest in there. It was a good class but from what I understand, they will go over all of it after surgery. We were given materials and it pretty much covered everything they told us.

Today would have been better spent with John attending classes at the high school.

Tuesday, October 23, 2007

Nothing much to write. John thinks his hip pain is getting worse. Thank goodness surgery is only two weeks away.

We've been busy getting ready for surgery. I find myself getting anxious about it and I finally realized I don't differentiate from our past experiences of extended hospital stays. Ned even asked if I was planning to stay with John and my response was �yes� (with a duh attitude�the teenager thing must be contagious). He asked why since John was 18 and this was different than most of our past hospital stays. He got me thinking and I asked John. John is fairly adamant he wants me there so we�ll see. John is worried no one will take care of him. I told him the nurses� will. Again I think he is thinking about extended stays and not being able to leave his room (due to immune deficiencies). We will conquer these fears by making new memories.

Saturday will be Andrew and Ned's last football game for the season (and Andrew's last game with Ned as the coach; Andrew will be in high school next year). This will be the first year Ned doesn't have a team playing in the championship game. Major bummer. However, it will be easier with John in the hospital.

Check out the picture of Andrew after the last game. This was all game mud damage. Ned did hose him off when they got home. I was lucky enough to get a large hug from Andrew right after the game. I'm sure people could hear me scream from miles away. :-)

Thursday, October 18, 2007

I�m glad this day is over. I think I spent more time worrying about it than I needed too. Most of the shocking information was delivered the last time we spoke to Dr. Smith. This time was I felt like we were all the same page ready to go; no more giving us all the bad what if�s.

Dr. Smith will do an anterior approach, which is from the front instead of from the side. It is a relatively new approach and he�s only been doing it since April. John will experience less pain, have quicker rehabilitation, and have lower chance of dislocation. He had to look at John�s hip area before making this determination. Johnathon has youth and relatively good shape going for him! Whew. Like good news!

With a hip replacement, there are two products basically put in the body, a ball replacement and a socket replacement. The ball is connected to a stem, which is typically titatanium. The socket and ball cannot be titanium because titanium is too soft. The products for the ball and socket can be polyethylene, ceramic, or metal. These products can be different on the ball and the socket. For example, Dr. Smith spoke of metal on metal at our last appointment and today he discussed metal on ceramic.

The good, the bad and the ugly news. Polyethylene does not have a long life. Not a choice for John. Dr. Smith said they consider 40 year olds young for a hip replacement. Metal on metal can release ions, which could cause cancer. There aren�t studies to confirm this but there are chemists who believe this. Also the metal on metal could create other problems down the line, like a reaction to the metal. With John�s history of cancer, he is more susceptible to getting cancer again. We really don�t want to roll the dice on this one. Ceramic has a 1 percent chance of cracking within six months and would have to be replaced. Also not a very good option. The good news is it�s the ceramic socket that has this issue. The solution??? A ceramic ball with a metal socket. It has good life and each has a good history of few problems and long life. The bad news is the two together are relatively new. Dr. Smith will talk to Dr. Toomey in Seattle tomorrow who is researching this combination. If Dr. Toomey doesn�t provide an overriding concern, we are going with the ceramic ball with a metal socket.

What are the risks of this surgery?
-A 1% chance of infection. If he gets one, they may have to remove the hip replacement. They will not perform the surgery if John has any sores on either leg.
-Blood clots. They will give him blood thinners during surgery. For a month after surgery, he will be taking Aspirin. John didn�t even know if we had Aspirin in the house. I haven�t bought Aspirin since it was determined to be bad for kids.
-Fracture of bone. It is fixable. It will make recovery longer.
-Dislocation. John will have to be very careful for the first 12 weeks to not dislocate the hip. He will always have to be careful of certain movements.
-Nerve injury. There is a nerve near the incision site. If the nerve is cut, it�s not major and shouldn�t bother John.
-10 to 20 percent chance of blood transfusions. Ok, this one really doesn�t bug me. How many blood transfusions has he had already? Way too many to keep count.

Great news? This hip replacement will take care of the left hip AVN forever.

I asked Dr. Smith about the right hip to confirm there is a three-month waiting period to get it replaced. He said if it needs to be done sooner, he would do it. WOW! We are praying the right hip pain will be manageable or better yet, minimal. John commented recently that it is hurting worse and he is on massive pain medicine. Damn. We�ll do what we need too.

Dr. Smith did comment that a couple of his assistants have done an amazing job getting John�s hip replacement surgery moving so fast. We are very thankful.

Next appointment is Wednesday at St. Vincent�s. We get to meet with the anthesiologist and watch a one-hour film on hip replacement recovery.

John�s high school will provide a tutor for him. The tutoring program is ran differently than when we were involved a year ago. It will be a new system to learn but they have been very helpful and are ready to do what they can so John will be successful.

I am feeling good about the direction we are going. I can definitely feel exhaustion starting to hit. I went to the grocery store tonight and almost ran into someone twice. The second time the other customer commented that we almost hit carts twice. I look up and it�s a fireman. I got a fireman to respond to careless cart operator. I decided it was time to check out and go home. :-)

Tuesday, October 16, 2007

Another busy day. We were supposed to be at St. Vincent�s at 8 am. I gave us 45 minutes drive time and figured we�d be fine�not so much. We were ok until we hit the exit, which should take at the most 5 minutes to get to the hospital. It took us almost 20 minutes. We arrived a few minutes after 8 am. John slept the entire way so I couldn�t even be �chatty�!�and I overslept so no coffee. Not a great way to start the day.

John checked in and we sat. I decided I�d run to get a coffee in the lobby. We always wait and John needed to get x-rays first anyway. I am 20 feet down the hallway and I hear John yell, �Mom, they are calling me back�. I did a 180-degree turn and fast walked back to John.

We saw the pre-op PA this morning. She went over John�s surgeries, allergies, current medicines, etc. She gave us a packet of information that we need to bring to each visit with Kaiser or St. Vincent�s. She wanted to know if someone will be with Johnathon 24 hours a day for the first 10 days�oh my, no break?? :-) Johnathon found out he has to arrive at St. Vincent�s at 5:30 am and his jaw dropped. More character building exercises! At least there won�t be any traffic on the exit!

John�s next appointment was to get his teeth cleaned. The dentist said his teeth look good for all that he�s been through. He suggested a product for John to put on his teeth daily to help with affects by chemo and radiation. I didn�t realize there was anything for that. John won�t be able to get his teeth cleaned for six months after the surgery. For the next two years, he will have take an antibiotic before getting his teeth cleaned.

His next appointment is Thursday for his pre-op with the orthopedic doctor. We'll be doing lots of reading until then...the packet has quite a bit of information in it.

Monday, October 15, 2007

Another update! How many does this make in a week? Must be a 2007 record!

On Saturday, Andrew�s football team played Lincoln. A bone marrow transplant team member son was on the team we were playing. We spoke during halftime and it was WONDERFUL to have an opportunity to talk to her in a different environment. She saw Andrew before the game and commented how much he looked like John and was amazed how big he is. She said her and Dr. Lamkin talk about John quite a bit and how well John is doing overall. They think once he gets over the hip issue, he will be doing quite well. I sure hope so. She said they have had a bad string of luck with teenage boy transplant patients recently and even though John has been through so much, he is alive. Yes, he is. Someone made that same comment to John today about being alive and John shrugged his shoulders.

John went to the University of Oregon game on Saturday with Lucas Huddleston. Jerry Belmore had two tickets and gave them to John. They were on the 30-yard line, 11 seats from the field. John had a blast!! Thank you Jerry!

We have all John�s appointments made and unfortunately to get ready for surgery means missing quite a bit of school. The WHS principal said they would do what they can to make sure John is successful in his classes and graduates. I am hoping that means he will get a tutor. I e-mailed all of John�s teachers so they would know what is happening. It is so hard to find a balance and unless you�ve been a part of this journey, it�s hard to understand the choice and sacrifices that need to be made. I would love for school to be a priority. Hopefully it will be in the near future.

John�s increased pain medicine has been controlling the pain. John is more active and I keep telling him to slow down..afraid his hips will hurt worse when the pain medicine wears down. He is definitely more chatty.

We had a relatively busy evening. John got home from school around 4 pm and we went to the clinic for blood draws and EKG. He then got his second series of immunization shots. He doesn�t have to get his next set for two months. It feels good to know he is getting his immunizations but I keep wondering if I am doing the right thing. I trust the doctors and have to believe they know what is best.

We have to be at St. Vincent's at 8 am tomorrow to meet with the pre-op nurse. We should leave the house by 7:15. John is not happy. Oh well, builds character...right? Maybe I'll give him a dose of "chatty" so he understands why I ask him to stop talking. Ha, ha!

Friday, October 12, 2007

Prayers have been answered!!! I just received a call from Dr. Smith's assistant (4:30 pm) and hip replacement surgery is scheduled for Tuesday, November 6th at St. Vincent's! The assistant gave me a long list of things to do and I was giggling as she was telling me. I am so excited to know John will be having surgery soon. I HATE the idea of surgery and that in itself scares me but he deserves to be free from pain. The left hip will be replaced first. Pain will dictate when the second hip will be replaced but there has to be 3 months in between surgeries.

This is what I know:

-November 6th, John will arrive at 5:30 for a 7:30 am surgery

-Surgery will take 2 � 3 hours and he will be in recovery for at least one hour

-Since he is over 12, Ned or I will not be allowed to see him until he is in room. Doernbecher�s let us see him in recovery; hospital rules differ. In the medical community, John is considered an adult at 13. He is given the opportunity to make decisions and sign paperwork; John has to give permission for Ned or I do anything.

-John will spend 3 days in the hospital. I can stay with him. They have a recliner (we aren�t at Doernbecher�s anymore, Toto�no parent bed like Doernbecher�s.)

-John will be housebound for SIX weeks. OMG! I asked about this months ago and was told 1 to 2 weeks so I didn�t worry about finding out what to do with schooling. Crap.

-John will have blood work and EKG on Monday, Oct. 15. He will have his teeth cleaned on Wednesday. We all have bacteria on our teeth, which apparently is very dangerous for any type of bone surgery. He has to have his teeth cleaned a month or so before surgery so the body can take care of the bacteria removed from his teeth.

-He will have two pre-op appointments next week.

-We will register him with St. Vincent�s and they will want to see him twice.

WOW!!!!

Thursday, October 11, 2007

Happy Thursday Afternoon!

We have good weeks and we have not so good weeks. This week started off ok but has steadily declined. John didn�t feel well yesterday; he woke up with an incredible headache but still went to school. He came home around lunch to rest. He said he couldn�t stay wake in class. Today he woke up with an upset stomach and went to school late. His hip pain has increased substantially. It is very painful to stand up from a sitting position and to walk a small distance. Dr. Smith informed us that the AVN has progressed and a partial hip replacement isn�t an option. He suggested we get on the schedule for a hip replacement. Evidently, Dr. Smith doesn�t recall that we have done that�which concerns me. How can we get in faster than six months if the doctor can�t remember we already started the surgery process? Deep breath. I e-mailed several doctors today to see what I can do. If I need to be a squeaky wheel then I just need to know where I should squeak.

I need to call pain management team and see about increasing John�s pain medicines. It is a hard call to make. I want the pain to be gone but I don�t want a drugged child. It�s horrible to watch him try to move and see his face contorted from the pain. He has to sit up/stand up in small increments so that he can get past where the hip catches and causes the most pain.

One step at a time�one day at time�we will get there.

Friday, October 5, 2007

HAPPY 18TH BIRTHDAY JOHNATHON!!!

Today has been a good day so far. My mom and I decorated the house before John woke up. John is feeling good today, in fact he has had a good week. I've noticed an improvement in his attitude so changing his pain medicine was a good thing. John hasn't said if the pain is better but he isn't using the crutches all the time at home so that must mean something.

I asked the pain management team if John could have had withdrawals last week from switching pain medications and if that could be the reason he was sick Thursday and Friday. They responded, "definitely.� Good god. Do you think they could tell us that so we do the switch on the weekend and not miss more school? and for John to know why he is sick?? He was so flustered last week. He's been up until midnight all this week trying to get caught up with schoolwork. I do not like that. I think he's body needs the rest but I'm trying to back off and let him make his own decisions. I've been reminded several times this week that he will be 18 on Friday. I interpret that as a hint to mom to let him be. :-)

John's been thinking quite a bit about colleges. We met with Lyndi Tucker, college counselor at WHS, yesterday and found out one of his choices may not be a choice anymore. He was considering U of W but they don't have the reciprocal agreement with Oregon, WSU does though. Interesting. Basically if he would like to go to U of W, we would be pay out of state tuition. We considered a couple other colleges but John keeps going back to OSU. He wants to either go into engineering or pre-med. OSU has a great engineering program and it�s close. I�ve requested John go a college relatively close to home until we are though some of these bumps.

This week we ordered cap, gown, and graduation invitations. We submitted his senior picture to the yearbook committee. Wow. I have this feeling June will be here before we know it.

Monday, October 1, 2007

Happy October!!

New month, new week...and John went to school today. Hopefully this is a start of a good trend!!

John has not noticed his pain getting any less with the new pain medicines. In fact, he thinks his joints are bothering him more at night. I want to give the new medicine a couple more days before we contact the pain management team.

John's birthday is Friday, October 5th. He will be 18 years old. He is very excited. I haven't planned anything. There is an away WHS football game on Friday night and Wilsonville Youth Football has their homecoming on Saturday...which means all teams will be playing at the high school...which means Ned will be gone from 8 am to 9 pm. Nothing too unusual for a football Saturday for Ned but it doesn't leave time to really do anything. John will be refereeing (he runs the clock) all day and Andrew will play at 7 pm. My mom is coming down for the weekend and that will make the weekend more special.

Friday, September 28, 2007

Please pray for the Naylor family. Noelle Naylor passed away suddenly yesterday. She was diagnosed with AML when she was 5 months old and fought the cancer beast for 3 years. She underwent chemotherapy, radiation and 2 cord blood transplants. Damn Leukemia, Damn Cancer!

John has not been feeling well yesterday and today. I don't know if it's from the change of pain medicine, adding a new medicine (which wasn't added until last night), or he just catches every bug. He is frustrated. He's missed a lot of school this week between doctor appointments and being sick. Hopefully, next week will be full week of feeling good and attending school.

Tuesday, September 25, 2007

An unexpected LONG day.

John had a 12:30 pm appointment at Doernbecher�s with the pain management nurse. I thought (got to quit that thinking thing) that the appointment would be one hour at the most and we�d be back home by 2 pm. HA! We got home at 5:00 pm.

We arrived at Doernbecher�s and the sun was shining. I looked up as I was getting out the car and there stood Doernbecher�s reflecting the sunlight. It really caught me. I stared at the 10th floor and I wondered how many families were up there at this time fighting the fight to stay alive. It�s a special group you never want to be a part of but thank god for the staff of Doernbecher�s. I then looked at John and thought thank god he is here with us today and we have the privilege to continue to fight; it�s a different fight but fragile at the same time. I don�t want John to lose that will to live.

When we arrived on the 7th floor, John and I were each asked to complete a multiple page questionnaire�that should have clued me in, huh? We waited until 1:30 pm to leave the lobby area. We get to the room and were informed we would be joined by a anthesiologist, physical therapist, and a psychiatrist. Holy crap. We all spoke for a while and then the anthesiologist said he and the physical therapist would like to talk to John while I go to another room with the psychiatrist. Holy crap II. All went fine but I�m glad my deodorant did its job.

We are changing John�s pain medicine. The anthesiologist believes if we can stop the break-though pain medicine being used three to four times a day than we will have fewer issues with the personality change. The psychiatrist would like to do non-medicine pain relief practice with John, like biofeedback. Their goal is to manage John�s pain with the least amount of pain medicine. Sounds great. However, the anthisiologist made sure I knew if John needed pain medicine then it�s ok�even if it needs to be increased. Mmmmm�I wonder what John told them while I was gone?? The physical therapist introduced new stretches, which John immediately felt relief with. She will contact John�s current physical therapist and discuss what other things can be done. The exercises that were shown today are ones he can do at home with assistance. The anthesiologist is also introducing a new medicine for nerve pain. He thinks that will help John overall with pain management.

We learned a lot of new things today. I thought we were merely going in to discuss with the pain management nurse about changing a pain medicine and we got a team to help determine how to help John overall. Wow.

John also bent his crutch yesterday so he received new crutches today with some �helpful� hints of using them. You can hear the new crutches suction as he crutches. We will get some extra pads so we can change them as they wear out. Before the appointment, John said he was considering using a wheelchair. His ankle and both knees hurt from the fall yesterday. Hopefully with what we learned today, he will be able to manage with crutches.

Tuesday, September 25, 2007

A bit of a scare yesterday.

John called around 12:00 pm from school to let me know he fell. His left leg was numb, he had a headache, and he was dizzy. I told him I would call the orthopedic and get right back to him. I�d end up eating those words. There is no getting right to an orthopedic. So different than the oncology world. I don�t have direct access to someone who can help me immediately. While I am on hold for the advice nurse, Ned calls John. Ned thinks John is fine and we should call if the pain gets worse. I hang up and the phone rings. It�s advice wanting to know if they can help me. I�m not sure what happened but unfortunately it was general advice, not orthopedic advice in which I was on hold for over 20 minutes. I told them I needed a message to get to orthopedics and she said she could only get a message to the pediatrician and that she could transfer me to orthopedic advice with no advantage of getting through to anyone any faster than calling myself. I told her not to bother. My initial call was to Dr. Smith�s assistant and she called back around 1 pm. She wanted to know if we could get John in to see Dr. Turker by 1:45 pm. Oh crap. I need to get a hold of John at school then drive over to St. Vincent�s. Of course, I could not get through the high school�s general line and John�s cell doesn�t work in the classroom. Thank goodness I went to open house night at school; I had his teacher�s direct line.

We made it by 1:45 pm. Dr. Turker came in with two other doctors, both in different stages of training. He would ask the younger doctor to describe what she saw on x-rays and I wanted to whisper �AVN� to help her out. Dr. Turker looked at John�s left hip and without a doubt John has less mobility. The numbness has subsided and Dr. Turker said that was the body�s defense mechanism handling the pain from the fall. John has a very nice bump on his head where he hit the floor. John was �fast crutching� (as he calls it) in the hallway by the wrestling room and when he rounded a corner on the tile floor, his crutch hit water (water fountain right by there) and he went down hard.

Dr. Turker and his assistants looked at last week�s MRI. There is more fluid, which indicates additional pain. I asked if the fluid could be removed and he said it was a symptom like a running nose. They could drain it and John would feel better for a little while until it filled up again. Dr. Turker would like to inject steroids into the hip to help the pain but he needs to get Dr. Smith�s approval first. Dr. Turker said he wouldn�t do anything without Dr. Smith�s approval since John will be having hip surgery soon. I told him we are six months out and Dr. Turker looked at me with disbelief. It was evident he didn�t realize how far surgeries were scheduled.

The injection would be steroid crystals so the steroid would stay in the hip area and it�s the not the same type of steroid that John had which created this whole AVN mess to begin with. The MRI and x-rays didn�t show any additional damage and since John was feeling better, Dr. Turker didn�t think he needed another x-ray.

I asked Dr. Turker about John�s right hip and Dr. Smith�s comment that it has collapsed. Dr. Turker agreed. I asked if the core decompression with BMP was basically a failure. Dr. Turker said no. He believes the surgery is buying John more time on the right hip. He feels John will eventually need his right hip replaced but perhaps not as soon if he didn't have the surgery.

Dr. Turker was very patient with us and answered all our questions. He made sure we were comfortable when we left. I asked what I should do if something like this happens again. He said it is fine to go to ER but if he�s in the office, he will definitely see us. Dr. Turker commented during the visit that he wished he had a magic wand to make everything better and how impressed he is with John�s attitude. When we walked out through the waiting room, there was a notice Dr. Turker was running 45 minutes late. Thank you Dr. Turker for making time for us.

John had a rough night sleeping last night. His head hurt.

We see the pain management team today to see about adjusting his pain medicines.

Sunday, September 23, 2007

Day 769 Post Transplant.

Please eat at Chili�s on Monday, September 24th. ALL PROFITS will go to St. Jude�s Children�s Research Hospital to fight childhood cancer. Research is what is needed to beat the cancer beast. Please be a part of the cure.

We don�t know anymore than last posting about a surgery date.

There was some confusion when I was making the MRI appointment (just love it when the person scheduling wants to argue about what needs to be done) so I called Dr. Smith�s assistant. After we clarified the MRI needs (scheduler was wrong..argh!), she informed me Dr. Smith was going to a big, joint replacement conference in October where the best of the best doctors would be in attendance. Dr. Smith had mentioned this during our appointment and said he would ask one particular doctor about John�s situation. Well, apparently Dr. Smith is going a bit further. He is allowed to bring one case with him and present it to the group. Dr. Smith has chosen John�s case. It is truly a great thing�but then you really hate being so damn special that your case is the chosen one. John is blazing new trails and we pray that with what they learn with him, it will benefit the next child who has a similar experience and maybe the doctors will be more successful in saving the hip(s). Overall, John is unique because he is a survivor and we are blessed.

John did fall at school a week ago and heard his left hip �pop�. The pain has been worse and the hip seems to catch more. John had a MRI on Tuesday as part of his pre-op appointments. I notified both orthopedics, Dr. Smith and Dr. Turker, about John�s increased pain from the fall and that they should have his MRI by Thursday. I haven�t heard from either one of them.

I am still waiting for John to get an appointment with the pain management team. I guess I need to start bugging them. I hate being a thorn but sometimes it�s the only way.

John�s been feeling pretty good (except for the pain). He was sick on Friday but that was from a cold all of us are fighting and was reasonable to not feel well. He definitely gets sicker than we do but it�s nice to know why and keep the mind calm.

John is enjoying school. I attended open house at the high school and went to all his classes. He has amazing teachers. They are high energy with an obvious passion to teach.

A week ago on Friday, we woke up to our house decorated by the WHS cheerleaders. The decorations were AWESOME! John got up, saw them, and BEAMED. What a perfect way to start the day after meeting with Dr. Smith the day before. I posted pictures. It was way cool. Thank you!!!

I picked up John�s senior pictures and Mountainbrook Studio did a beautiful job. The high school needs senior pictures by October 1st. Whew, we made it! It seems so early to be doing this. I posted a picture.

Ned and Andrew are busy with football, football, football. It�s hard to believe this will be Andrew�s last season as a youth player and with Ned as his coach. Andrew will play for the high school next year. Andrew continues to have an incredible appetite. The other day I bought him three cheeseburgers from Burgerville and he made three more hamburger patties to fill himself up. Love the George Foreman Grill! He can take care of himself.

I�ve been busy with medical stuff (better than a couple years ago!), attempting to keep track of all the comings and goings of activities, and youth wrestling. The youth wrestling program will start in November. We are excited to bring a new program to Wilsonville but sometimes I wonder what the heck I was thinking. :-)

Thursday, September 13, 2007

Day 759 Post Transplant.

I�m not sure where to start�this is what I get for postponing updating�(I can hear you now, Jerry)�(I am smiling)

John was pretty sick for five days a week ago (Sept. 5 �8). We think it is a result of increasing his pain medicine but we don�t know for sure. It seems like it lasted a very long time for a change in medicine but then�it�s possible. No one we know has been sick. On the other hand, John�s immune system hasn�t been exposed to very many germs and he may catch more things the typical person does. I�ve asked John to cut out the fast food to see if that makes a difference. The negotiations ended up with me making him lunch everyday. John scored on that one!

Ned and I had actually made plans to get out of town for the weekend of the 8th to celebrate our anniversary and to watch a cousin�s band play. Unfortunately, Johnathon�s sickness peaked on Saturday and he asked for us to stay home. We wouldn�t leave him when he�s sick anyway but double dang!

John felt better by Tuesday when school started. I sense an improvement in his mental attitude since he�s been at school. It�s good for him to have something to do. His hips have been bothering him more. The school chairs are not comfortable and he�s taking even more pain medication. I can�t express how hard it is to give your child medicine that is addictive and changes his personality. Ned and I look forward to getting John off of pain medicine and being able to communicate with him more effectively. Sometimes I worry we are seeing the effects of radiation but the change occurred with the pain medicine.

John did agree go to the Body World 3 Exhibit at OMSI. It took Jordan Beltz to convince him. Thank you Jordan. We saw the omnimax movie first. Both Jordan and John had never seen an omnimax movie before. Bad mom points! The movie was John�s favorite part. The exhibit was very cool. Some things �grossed� John out but he ended up enjoying it overall. We even got to see a hip with a replacement!

John saw his pediatrician on Tuesday. I finally decided it was time to start his immunizations. I have a huge fear of the immunizations because I am not convinced that wasn�t the trigger of the onset of his leukemia. He had a late immunization because the MMR was given too early when he was an infant. I had e-mailed the pediatrician quite a while ago to let her know we were coming and why. She did e-mail John�s oncologist to find out what immunizations he should or should not have (John lost all of his immunizations when the doctors eliminated all of his bone marrow for the transplant and immunizations do not transfer from the donor�s bone marrow). As luck would have it, what she was told and what I thought I was told were somewhat different. I thought he was good to go on all immunizations except for chicken pox forever. She was told he was good to go except for live immunizations in which John could get in six months. We have time to figure it out but I hate confusion. John ended up with two shots and we�ll go back one month for a couple more.

I was a bit freaked on the way home. I know he needs his immunizations but I worried this would put his bone marrow into a tailspin. I had a lot of what ifs. I know the doctors wouldn�t do it if they didn�t feel it was safe but, but, but. John did wake up not feeling well on Wednesday. He slept until late morning then went to school. His arms are sore which makes it more difficult with crutching. He hasn�t said anything since yesterday though. Good sign!

John and I saw Dr. Smith, the hip replacement doctor, today. The doctor asked about John�s hip then asked for more information about his cancer journey. I gave him the condensed version. He asked for more detail. I gave him a bit more detail (honestly trying to keep it simple so we wouldn�t be there all night) and then the doctor requested that I keep it basic. He would ask for clarification as we continued to discuss John�s basic journey.

John shut down after 30 minutes. The doctor explained the risks of surgery and John announced that the pain isn�t that bad. My jaw must have hit the floor. Not that bad?? He doesn�t do hardly anything. He can�t even eat at the table with us because his hips are too sore at night. He can hardly get in the back seat of a car. He typically uses crutches to get around and when he doesn�t his face contorts from the pain. He is taking break-through pain medication three to four times a day on top of the other pain medication. He cannot bend over. One leg is longer than the other caused by pain (body will pull the hip in). He walks by throwing his leg and his body looks twisted. In fact, Dr. Smith asked if John�s back has been looked at from how he walks. Oh ya, his pain is just fine�.argh!

The doctor then informed us that hip replacements surgeries are SIX MONTHS out. OMG! I asked John�s surgery to be scheduled and we can cancel if John changes his mind. Six months�he has to go through therapy and get weaned of his pain medicine after the surgery..and he plans to go to college next fall. Once John heard how far out the surgeries are, he started to negotiate with the scheduling nurse to get him in sooner (I�m not sure what happened�one minute no surgery, next minute negotiating an earlier surgery date). She said she had to have good reasons to try to do that. I gave her the names of the pain medicines John is on and she thought that was a very good reason especially since he is a teenager. We�ll see. John�s surgery will not be at Doernbecher�s. He will have the surgery at St. Vincent�s or Kaiser Sunnyside. We are on the cancellation list and I told them we�ll take whatever comes up first.

There�s a lot to do in the meantime. John�s has to have x-rays and an MRI. He needs his teeth cleaned as soon as possible and surgery cannot happen until one month after the teeth cleaning. Our dentist takes typically six weeks to get into. I�ll call tomorrow.

There are two types of hip replacements, full or partial. Dr. Smith does not feel John is a candidate for a partial because so much of his hip ball is bad. He did say BOTH of John�s hips have collapsed. Pain will dictate when a hip replacement is needed. John�s right hip is doing ok. He can have the second hip replaced three months after the first. Hopefully he won�t need too. Within the full hip replacement, there are three different materials to chose from. All have risks. There isn�t an easy answer to any of it. Dr. Smith will be contacting a doctor in England to get his opinion of which material is better for a teenager who had cancer. England has been using one material much longer than the USA.

My mind is spinning. So much to digest. I wish I could wiggle my nose or touch my ear and make things better.

Friday, September 7, 2007

Please watch the following video:

Childhood Cancer Awareness video

It is a very powerful video. I just got done watching it. It bought back a lot of memories and I shed some hard tears. It is wrong for any child to experience the devastation of cancer. Wrong, wrong, wrong. I hope a cure is discovered very soon.

I updated the photos to give you a glimpse of some of John's cancer journey.

John is doing ok. He�s been in a lot of pain and he�s been very sick. He was sick from Wednesday to Sunday. I was getting worried by Saturday; he was so pasty. I did some serious praying. When the fear ever leave? John is feeling better. The pain is hard to manage. We�ll see the hip replacement doctor next week. I�ll write more later.

Ned and my 22nd wedding anniversary is today. We don�t have any plans. Does that mean we�ve been married for a long time?? Ha, ha.

Thank you for all your support and prayers.

Thursday, August 16, 2007

TWO-YEAR TRANSPLANT BIRTHDAY!!!!

HUGE milestone. John is considered to have the same chance of you and I to get leukemia!!!! I've dreamed of making it to this day. There are no promises but the future looks good!

Wednesday, August 15, 2007

Two years ago today we were waiting for John's donor's bone marrow to arrive. It didn't arrive until early the next morning so officially his transplant birthday is August 16th. You can read the journal history to find out what our day was like.

We truly are blessed to have John with us today. Thank you for all your support and your prayers. I can't express how much that has meant to all of us. It has kept us going through it all. I don't know how we would have got through it and continue to get through it without your support and prayers. It's like the poem "Footprints in the Sand". You have carried us many, many times.

We celebrate John's "transplant birthday" in many ways. We celebrate John's life, friends, and family.

We are blessed.

P.S. I think John's pain is getting better....holding my breath. Wouldn't that be a wonderful transplant birthday present????

Tuesday, August 14, 2007

Day 729 Post Transplant.

I was told, in a not so subtle way, today that I need to update more often (Thanks Jerry!) so here�s an update.

Everything is fine. Nothing much has changed.

Now Jerry said that would suffice. I always thought I should have something to write about before I update�let�s see what I can do...

John is going to try to referee this fall. I don�t think he will be able to be on the field but Tualatin Valley Youth Football League (TVYFL) has been so good to him. Last year, they allowed him to run the score clock instead and we think he will do the same this year. It�s one way he can be involved with football and feel like he is contributing. If I could make him, I would force him to help coach with Ned but John�s desire isn�t there�yet. Maybe once the hips are better, he will.

John and Ned attended a function for TVYFL on Saturday. John did pretty well. He got sick towards the end of the training. We just never know when nausea will hit. Hopefully it�s the pain medication, not his new bone marrow transplant life.

John is enjoying working at Sears. He is a cashier and typically is in the kids or tools department. He loves working in the tools department. He says the kids department is too slow; I�m sure it will pick up soon. When he works in tools, he comes home and tells Ned about the tools. Somehow some have made it home a couple days later. Maybe it would be cheaper for us to pay John�s wage rather than to acquire new tools. Ha, ha! John has a stool he allowed to sit on while cashiering. He does pretty well during his shift but by the time he comes home, his hips really hurt.

I don�t want to jinx it but it seems like John is asking for less pain medication. I need to watch it closely in the next couple days. I was gone for the part the weekend so I may just not be aware of how much Ned is giving him. Fingers crossed!! I haven�t noticed him using the crutches as often.

My brother raced in Olympia last weekend. Since John and Ned had the training and Ned had other football commitments, they weren�t able to go with us. Ned�s sister, Louise, went with Andrew and I. It was a blast! Wade did well and it was just fun to be back around motorcycles, exhaust, dirt, etc. We stayed after Wade�s race to watch the pros. It was a fantastic day!!

Ned, John, Jim Beltz, and Jordan Beltz went to a Volcanoes baseball game on Sunday. They had a great time. We are trying to figure out ways to get John out more.

We�ll be watching Freestyle Motorcross this weekend. Thank you Candlelighters!

August 16th is soooo close!! TWO YEARS POST TRANSPLANT!!!! I want to giggle and cry at the same time.

Wednesday, August 8, 2007

Sorry for the lack of updating. John is doing ok. My emotions are all over the board, which unfortunately John is somewhat responding too. Maybe it�s the time of year; two years ago today John was admitted to Doernbecher�s to start his bone marrow transplant journey. Maybe he and I are just experiencing the emotional drain of this forever cancer roller coaster. We truly are grateful for where he is on the cancer front but the daily toll and realization of the impact and the constant pain he is in hard to handle day in and day out. I want him to experience normal teenage years and he won�t. He still has trouble grasping he won�t play football again. When I try to tell him needs to get out and do something, he responds, �What is there for me to? I can�t play football or baseball. I can�t run. What am I to do? My friends are all in sports.� My mind has not figured out a good response. He does play a lot of computer games but I want him out doing stuff. When we try to think of non-sport things to do, most require use of his hips and he pays a high price for using his hips. I know it will get better but for today, it sucks. I want him to grab life by the horns and he�s not willing or able.

This week I found out two young girls who had transplants relapsed. It was their second transplant and there isn�t anything else that can be done. I know their stories also make an impact on my emotions but it also slaps me the face. I�m sure either one of those families would trade places in a heartbeat. Please pray for Alexia and Noelle and their families. What hell they are experiencing.
http://www.caringbridge.org/southamerica/alexia/
http://www.caringbridge.org/wi/noelle/

John fell down on Monday night. Scared the crap out of Ned, Andrew and I. We were all sitting at the dinner table and John was crutching over to sit down. His crutch hit some water and down he went. All three of us were at his side in seconds. John exclaimed, �My left hip! My left hip!� I thought, �What do we do? Did he just damage to the point of surgery now?� Luckily, once John had a chance to settle down, he was ok. Ned gave him a couple pain pills and John was feeling ok..a bit loopy but the pain was manageable.

John will see the pain management team next week. I suspect they will increase his pain medications again.

We will see the hip replacement doctor in mid- September. I was quite concerned when we made the appointment a while back and it was so far out. I spoke to Dr. Turker about John�s pain and current quality of life and he said they were not going to rush into a hip replacement. They are hoping John�s pain will get better. I think though the leukemia and bone marrow transplants journeys, we are accustomed to things moving fast. With the hips, it isn�t and we need to adjust and know it�s ok.

We saw Dr. Turker yesterday. John had x-rays prior to the appointment. Good news the hips haven�t changed. It looks like the right hip is doing well and there are signs the bone is hardening. The left hip is the left hip. I was worried it would look worse from the additional pain and the recent fall�however, I don�t know if it can look worse. I did ask Dr. Turker if no change is good and he said yes. Dr. Turker did make a point to let John know that his life will not always be like it is now. They don�t want him in pain but they need to figure out what the best options are for him. Dr. Turker is contacting a doctor he considers to be on the cutting edge to see if there is anything else that may help John. John�s life will be different with a hip replacement because he won�t have pain but he won�t be able to run, snowboard, etc. He won�t be able to do anything with impact that would decrease a life expectancy of a hip replacement. If the doctors had a replacement out there that would last John�s lifetime, he would have had the replacement by now. The doctors say the replacement hips are better than ever but they haven�t been around 30 years to know how long they will last. A person can only have so many hip replacements in a lifetime and that is the major issue with a teenager and hip replacement. Also John�s body could reject the foreign hip replacement too. There are so many things to consider. The reality of it all is no one knows what John�s life expectancy will be. His body has been hit so hard from chemo and radiation already. Cancer SUCKS. Where are those cures????

We did get John�s senior pictures back. The photographer did a fantastic job (Mountainbrook Studio in Sherwood). He took some black and white pictures, which made John�s skin discoloration really stand out. We asked if they could touch them up and they are unsure how much they can do. It will be up to John if he wants to or not. It is who he is.

Andrew is doing well. A perfect 13-year-old going on 23. He knows all!! Ha, ha!! He is eating us out of house and home. For late night snack the other day, he ate THREE hamburgers. Thank goodness for the Foreman Grill; he can make his own hamburgers. I believe Andrew may be around 6� 1�, 165 pounds. My baby is growing up!

Ned is doing well also. It�s full-on football season and he is happy. The football players start wearing full gear tonight. When Andrew left the house, it was hard to believe he is my child. Life does go by very quickly.

I�ve decided to cancel the August 18th celebration. I haven�t done any planning yet. John has good days and bad days with pain and general health. He�s not been feeling 100%. I worry about many things and hope it�s nothing.

Overall, it�s all-good. We need to enjoy today knowing that tomorrow will bring pain free days!

Thursday, July 26, 2007

Day 710 Post Transplant

John�s hip pain continues to get worse, we adjust his pain medicine, he is sick for a day or so, and then we wait and see if the additional pain medicine is enough. I don�t think we are there yet. He takes break-through pain medicine several times a day in addition to his base pain medicine. It is very discouraging.

John�s last day of summer school is Friday. He is excited to be able to sleep in!

John had his senior pictures taken on Monday. We unfortunately didn�t think about bringing his crutches and by the time he got home, his pain was through the roof. I was working at football equipment issue and he called me barely able to talk from the intense pain. I went home and gave him some break-through pain medicine and went back to equipment issue. He called again saying the pain was still bad. We got home and gave him another break-through pain medicine and the pain became manageable. I spoke to a pain management person this week about the pain intensity and inability to get it to a manageable level within the parameters we were given. She told me we could actually give more pain medicine than we were told for these situations. Good information. Even though John was on similar pain medicines before, we were dealing with GVHD and a multitude of other medications. We are now finding out that John does get nauseated from medication adjustments and the pain medicine makes him itchy. When we had these symptoms before, we weren�t able to identify the source.

Monday, July 16, 2007

Happy 44th Birthday Ned, Louise, & Betsy!!!
We are hoping for a fantastic 44th year!!!

All is going ok. We are managing John�s pain. John�s attitude has improved from working at Sears but his hip pain is worse. He is still in training and not doing a lot of activity. I am hoping it will all work out. John definitely has been spending less time in his room and doing more things with friends. Yahoo! He could be more active due to less pain and the additional activity may require higher dose of pain medicine. We�ll see. It will take time to figure out the best balance for him.

We had a good appointment with the pain management team�if that is possible, I guess. What is a good appointment with pain management? The best appointment is to not need one. The PA remembered John from inpatient and immediately said she would have never recognized John. She was very good in communicating with Johnathon and making sure he understood pain medicine. She doesn�t want John living with pain daily. She wants John to enjoy living. Damn this AVN. We are lucky he is here with us today and he could definitely be facing more than he is with what he�s been exposed too. I so wish I could have had the leukemia or give him my hips. He is so young and he deserves �normal� teenage years. I keep thinking of what I was doing when I was his age and I certainly wasn�t even thinking about life threatening illnesses or their impact.

John has started pool therapy and he had an appointment with Scott Olson. Scott gave John some exercised to help improve John�s flexibility. Hopefully additional flexibility will also help with pain management. It won�t help the hip bone pain but it will help with the muscles.

I have a lot of questions from John�s orthopedic appointment. I don�t have a good idea of the direction we are going and I�m not sure Dr. Turker does either. I need to talk with Dr. Turker without John around. John has a right to know but I�ve learned how he processes and what he prefers. He definitely doesn�t want to know everything, especially if it�s all negative. There was no way I could follow up on Dr. Turker�s comments at the last appointment without risking John shutting down.

For the last couple weeks, I�ve been busy helping start up a youth wrestling program in Wilsonville. The program was accepted under Wilsonville Youth Sports and Chris Zimmerman is the director. I�ve been working on the website this weekend�I am NOT an IT person. It�s been a learning experience!!! Ned�s been busy with football prep. Hard to believe practice will start in little over a month. He�s been on the computer quite a bit trying to get caught up. The weekend was basically me on one computer working on wrestling and Ned on the other computer working on football�and whom do I complain about being on the computer too much?? Poor John! :-) If you are interested in the youth wrestling program, send me an e-mail.

Ned was gone from Monday to Thursday last week and Andrew�s been gone for over a week. Ned had a class in Bend, Oregon and we were hotter than eastern Oregon. So wrong! He missed all the high 90�s and 100 degree temperatures. I was able to keep the house cool though. Whew!

Monday, July 9, 2007

4:30 pm � What a day�but first the weekend�

We had a fantastic weekend! My brother raced on Sunday and we decided to make it a weekend event and rented an RV. Wade stayed with us in the RV and my mom & dad stayed in a motel nearby. Since Wade lives in Bellevue and needed to test out his motorcycle on Saturday morning, he and my parents were not planning to arrive until mid-afternoon. I wanted to make a full weekend out of it so we left Saturday morning. Luckily the race wasn�t too far away; it took us a little over an hour to get there. When we arrived Patty and Gary Sorem were there to greet us. Patty and Gary are long-time friends of my parents. It was great to see them both!!! We parked the RV and found out we just missed the kids race and the class C race wouldn�t start for another 90 mintues�oh, what to do!! The boys decided to watch a movie in the air conditioned RV (camping wimps�and that�s what I get called..HA!) I grabbed a book and hung out outside. It was absolutely heavenly. There were many RVs around us, we could see the pits, see/hear kids riding & playing around camp, and see/hear riders on the track. There�s nothing like the sound of kids playing, sound of dirt bikes and smell of dirt mixed with exhaust!!!! We watched the class C race, which was awesome then had dinner and in a blink of an eye, Sunday morning was upon us and Wade was getting ready to race! It was sooo much fun. We had a canopy in the pits so Wade could get water, Gatorade, gas�whatever he needed. John stayed there with Ned and my parents. I took pictures of the start and of another area of the track. When I returned to the pits after two hours, my mom laughed and said I looked like I was racing too. My face was covered in dirt! Johnathon said he was having a lot of fun in the pits. On Saturday he was able to hang out at the RV with my dad and watch a good portion of the C class race. We had a blast and were exhausted Sunday night!

Today was a hectic day. John and I were at OHSU at 7:45 am for a CT scan and then to Doernbechers for an appointment with Dr. Lamkin. Dr. Lamkin is very pleased with John�s progress. He said he is sorry for the hip issue but John was very sick for a long time and they are very happy where he is now. John commented, �I�m alive� with a smile. Dr. Lamkin continued and said if we would have another insurer besides Kaiser he doubts the Bone Marrow Transplant would have been approved. He along with the other doctors didn�t think John had a good chance to survive the transplant but because Kaiser will do what Dr. Lamkin recommends, John was able to have the transplant. OMG. I�m still trying to digest all of that. The CT results show the mass (in John�s chest�remember last August with the lost voice�blood clot�possible relapse?) is smaller. Dr. Lamkin said he could care less if John�s has another CT scan or blood work. Yahoo! Also he doesn�t want to see John for four months. He said the two-year mark for a bone marrow is significant and he�s not worried about John. Anything can happen but all looks good. We left smiling.

We went to the mall to get John work clothes. Tonight is John's first night to work. We called Ned�s sister, Louise, and we were able to have lunch with her. Timing was perfect and when we were done with lunch it was time for John�s next appointment with Dr. Turker (orthopedic).

John had x-rays before seeing Dr. Turker. Dr. Turker walked in the room quieter than usual. My gut told me something isn�t going right and sure enough. John�s left hip has collapsed. I could see John�s color disappear from his face. I wanted to bury my face in my hands and ball but I know I can�t do this in front of John. I reached deep and found that damn actress that has had to perform WAY too many times with this damn cancer roller coaster and put on the �it�s ok� face. Basically, there�s nothing we can do right now. John needs to be careful and hopefully the soft bone will harden and the pain will get better. It sounds like pain management will be the guide for the next step. We�ll see the pain management team tomorrow and see Dr. Turker in four weeks. You could see how hard this was on Dr. Turker. He said he wished he had a magic wand for John but he doesn�t. They just don�t know how to treat AVN like John�s effectively. He told John how stoic he is. The right hip is looking ok. There is soft area but the surgery may have helped it. The surgery on the left hip didn�t help�but we didn�t know. Dr. Turker said John would have arthritis in the left hip. It was a difficult appointment. John is taking it pretty hard. He ran a bit on Friday and his eyes absolutely lit up when he told me. He said his hip didn�t hurt and it felt so good to run again. He told Dr. Turker and once Dr. Turker got over the shock and could talk, he basically told John endorphins had kicked in. John hasn�t given up hope for playing football and this was appointment was the last nail. He tries so hard to keep his dream alive of playing sports again. As an adult we know life isn�t all about sports but to a teenager who love sports, it is what has kept him going and apparently keeps driving him. He is resilient and will overcome these set backs. We are not facing life and death situations but instead life altering. It is easier to deal with but devastating at the same time. He�s been through so much.

John got home in time to change and head out the door. Hopefully Sears will keep him busy tonight and his mind occupied. It�s given me some down time to release a bit of emotion. I sure hope a cancer cure is discovered soon. No one should have to endure what cancer brings on.

Monday, June 25, 2007

Thursday Update: Check out the pictures!!!!

Monday: Day 679 Post Transplant.

We had a WONDERFUL vacation at the Caring Cabin in Pacific City, Oregon. It's a cabin built by Children's Cancer Association and offered to families with children of life-threatening diseases. It was the best fours days I can recall having in a very long time, our first vacation since 2003. I was able to experience our family relax, play, and laugh together. I saw sparkles in John's eyes and heard excitement in his voice. It was beautiful and a tremendous gift from CCA. See link: Caring Cabin

When we arrived on Thursday, all of us were taken away by this 3,900 square foot �cabin�. There are two structures separate from the house. One is playroom which had air hockey and a pool table and a room above with two twin beds.. The other separate building is a mediation room. When we walked into the main house, we saw granite tiles on the floor and a beautiful dining room table to seat 10! The kitchen looked like it came out of Sunset magazine. It was gorgeous!! There was HUGE fireplace and a game room. The master bedroom was beautiful as was the second bedroom. The kids� room had two twin beds on the main floor then a loft with two more twin beds. Each bedroom had a TV. CCA thought of everything!! The house was simply amazing. Absolutely beautifully decorated with all the necessities plus available for us to use.

The house sits on 24 acres with it�s own lake. There is a rowboat and CCA supplies the life jackets and fishing poles with gear. Andrew spent many hours on the lake fishing and rowing.

CCA even had a rock engraved with �Johnathon Walls 2007�. We were to place the rock along the path to the lake. We went into town and pick up a few things we felt represented John and had a blast designing his area.

CCA gave John a quilt and provided a disposable camera for us to use. They have two notebooks on the dining room table. One is a photo album of each family who has stayed there. The disposable camera pictures are used for this album. It was bittersweet to look at the pictures. At least one child did not live to experience the stay. The other book was full of journals. Each family wrote a page of what the Caring Cabin stay meant to them. It was terrible to think why we all had this honor to stay in such an amazing place but it also made you feel like you weren�t alone in your own emotions.

I took pictures but I can�t find our camera/computer connection. Yep, Andrew has struck again. We will get another one and I�ll let you know when the pictures are available. We have some great ones of John. He couldn�t say no. Lately he is adamant he doesn�t want his picture taken.

Aunt Joanne and her family joined us at the Caring Cabin from Thursday to Saturday. Uncle Leonard wasn�t feeling so well Friday night and felt worse on Saturday. They had planned to go home on Saturday due to other obligations and good thing they did. He had another bout with diverticulitis (last one was 12 years ago) and was admitted to the hospital on Saturday night. The doctors are hoping it will heal itself; he will be in the hospital for at least a week. He is on morphine and fighting an infection. Please pray for Leonard�s fast recovery. We sure had a great time with them but damn!

The Olsen family arrived bright and early on Saturday. Jim wanted to wake us and they were very close to doing that!! We all had a great time going to the beach, eating, and playing games. It was hard to leave on Sunday; however, it was also nice to be home.

John is now a senior!! OMG! I scheduled his senior picture sitting appointment in July. It's hard to believe but what a blessing to be experiencing it!

Also John accepted a job today!!! He will be working at Sears at Washington Square. We had a terrible time finding a job John could do with his bad hips. Most jobs that would be doable were only offered to people 18 and older. Luckily, Sears is willing to work with John�s handicap. John is very excited. He did this on his own. It will be an experience away from parents and cancer. It will also force him to interact with people. The journeys have definitely created a hermit�who loves playing WOW (World of Warcraft). He spends hours playing that game without realizing how much time has elapsed.

There is a 2-year post transplant party in the works. I�ve been very hesitant about planning one. A friend of ours, Dina Ochs, said we have to have one�this is a huge celebration. She is correct. The two-year milestone is huge. As of now, it is August 18th in our backyard. It will be an easy going, hang out with friend and family event. Dina has offered to help plan it so I need to talk to her more about it. In the meantime, mark your calendar for August 18th!!!

Thursday, June 14, 2007

Day 668 Post Transplant. Yahoo!!!

John is doing well. John didn't feel well all weekend and was sick on Monday, which scares the heck out of me. I start over analyzing his symptoms and praying continually to God to let John live his life without cancer. Luckily by Tuesday morning, John was feeling better. Since transplant, John typically does not feel well in the morning. Dr. Lamkin told us that sometimes transplant patients never regain their energy and don�t feel as well. He didn�t believe John would participate in sports due to the lack of energy. Unfortunately, the AVN has prevented John from participating in sports. We may not truly know if lack of energy could have been issue. I also don�t know how much of being a teenager and hating mornings plays a role too. I never know when to push or not to push in the mornings.

John is completely off of crutches. His hips hurt and he walks with a limp. The limp is different than before; it�s more of a straight limp versus the swing limp he had before surgery.

My brother and his family were here last weekend. Wade raced in a motocross not far from our house. He needed to leave first and asked the boys if they would like to go with him. He had to be out of the house by 6 am. I figured there�s no way the boys would actually get up. When I went to wake them at 5:30 am, both were already out of bed! Major shock!! Wade�s wife, Maia, and their son, Aidan, went with me at 7 am. Watching my brother race was totally cool!! After his race, we watched the pros for a while. I didn�t want to leave. However, John�s hips were hurting and Aidan was ready to leave. The weather was windy, rainy and cold. Not a lot of fun for young guy. Wade will race again in mid-July in Oregon so we are renting a RV. Both Andrew and John are ready to ride motorcycles. We�ll see. I�d love for them both to do it. I think Andrew would be good�makes me a little nervous since he has a no fear attitude though.

Last day of school is next Wednesday. John will be officially a senior�WOW! Andrew will be in eighth grade. We�ll have two graduations to attend next June!!

Friday, June 8, 2007

John is off of crutches!!! The doctor did not have John's hips x-rayed so we don't know how they are healing. Dr. Turker seemed pleased overall with John's progress. John's next appointment is in four weeks; I'm sure we'll get a better idea then how well the hips are healing. Dr. Turker did say John could start seeing Scott Olsen (trainer) as long as John went easy....mostly stretching. It's a start!

Tuesday, June 5, 2007

Thursday:

1:20 pm - All good. The high school is taking care the live feed for Bob. WOW!!

9:00 am - Someone called OHSU and asked the staff about doing a live feed of Matt's graduation for Bob. Anne was told she needs a wireless laptop. She called me this morning and asked if I could find out who called and find out exactly what she needs to do. If you know who called or could find out, would you please? Bob is very excited about being able to watch the graduation.

Bob has been moved out of ICU!!!

Wednesday Updates

6:30 pm - Bob is doing relatively well. He is talking and asking for watermelon! The next couple days are critical but so far so good!! Yahoo!!

If you are interested in bringing a meal to the Lynch home, I am organizing the dates starting next Monday, June 11th. You can view the calendar online and then let me know what day you would like.
Lynch's Meal Calendar

9:30 am - Just spoke to Anne. Bob was taken of the respirator and came out of the coma. She is on her way to the hospital now. She would only like one or two friends with her at the hospital.

From our experience, it is very easy to get overwhelmed with people. However, there is nothing like support/prayer of friends and family to carry you though. Their son Matt graduates from high school Friday night and there are family members flying in. I don't know what plans there are for food but I will try and find out today.

9:00 am -
Anne e-mailed the following update, "Bob was transported by ambulance today to OHSU in Portland Oregon and had emergancy open heart surgery. He had a 5 to 6 inch tear in his aorta. The section was removed and a graft was placed over the damaged area. He did well and is in critical but stable condition. The tear ran up toward the brain so we are waiting to see if any damage was done to the brain. They are also concerned that he may have more arterial tears elsewhere. The next 48 to 72 hours are going to be very tense. He is in a medically induced comma right now and on a breathing machine. All of his vitals look good. He is strong and in great shape which is very much in his favor. The is the same thing that John Ritter died of. The doctors said Bob is a very lucky man. Bob will be in the hospital for at least a week if all goes well. Please keep him in your prayers."

Dave Coons has set up a personalized Web page, called a CarePage, for Bob so you can easily receive the latest news, view photos and share messages of support. Go to www.carepages.com and register if you are a new user.

CarePage Name: boblynchcarepage

1:30 pm - PLEASE pray for Bob Lynch. He has a torn main artery and he is on his way to OHSU for emergency open-heart surgery. According to his wife Anne, it�s not good.

Saturday, June 2, 2007

Noon � All is well.

John continues to have pain in his hips and the pain level varies. His crutch slipped twice on Thursday and he used his left leg to catch himself. Yesterday he fell on the stairs (we are watching a younger dog who doesn�t realize she can�t spring past John). I�m sure the mishaps don�t help his pain but overall he is dealing with more discomfort. John is very anxious to get rid of the crutches. He has a doctor�s appointment on Friday. We are praying the hips are healing well and the doctor will let him walk of the office.

Ned�s sister Louise moved into her new house this weekend. Ned and I spent yesterday helping her move and today Ned�s sister Betsy and her family are here to help. I decided to stay home and hang out with the kids and dogs. John slept in and he hasn�t complained of hip pain yet.

John took the SAT test and received his scores last week. He was very disappointed and it threw him for a loop. He wants to be where he should be (i.e. the same level as his friends) and it is going to take time. Last week the high school had a weeklong fundraiser for Doernbechers. There was an assembly and I asked John how it was. He told me he didn�t go. I was disappointed and surprised and asked why wouldn�t he when the kids are raising money for kids like him. He said he couldn�t stand seeing the pictures. He doesn�t want to remember. He wants to be normal. I guess the mental healing will take a while.

I feel like we are busy every minute but there isn�t very much to write about�which is a VERY good thing!!!

Wednesday, May 23, 2007

There is a 4 year old girl in Wilsonville fighting leukemia, ALL. Her family is participating in the Relay for Life. We will not be participating this year; we will be on our first vacation as a family in a very long time and I am unable to change our reservation. Please donate to Emily's team. Her Relay for Life site is:

Emily's Relay for Life Page

Money raised goes to the American Cancer Society. Hopefully someday very soon a cure will be discovered and people will not experience the devestation of cancer.

9:00 am - Day 646 Post Transplant

John turned the corner on Saturday and each day he improves dramatically. I don�t think he�s had a prescribed painkiller since Saturday. He�s been able to manage his pain with Motrin. The hematoma has decreased in size and the incision is healing nicely. Johnathon went to school on Monday and lasted all day. I fully expected him to come home early due to pain or being tired; he hasn�t been up and around very much since surgery. When he got home after school on Monday, he said his stomach hurt. I gave him a puzzled look and he said he realized he uses his stomach muscles when he crutches. I assume it�s a way to use less of his hip muscles. He made it through a full day on Tuesday with staying after for an hour to catch up on work. Amazing!

Ned went to Central Washington University on Sunday for the 1984 football team to be inducted into the Hall of Fame. He had a great time visiting with his teammates and coaches. He said the ceremony was very nice. He came back with lots of stories of who is doing what and how the campus has changed. Hard to believe college was so long ago. Brought back a lot of memories of those carefree days�

Andrew�s birthday was relatively quiet. He had a sleepover with four boys on Saturday. I figured quiet on Monday was just fine. :-)

Congratulations to WHS Varsity Baseball for a great season!

Wednesday, May 23, 2007

Monday, May 21, 2007

Happy 13th Birthday Andrew!!!

Thursday, May 17, 2007

2:45 pm � What a day. All continues to be good.

Dr. Turker returned my call around 9:30. He let me know he was in a meeting and called me as soon as he could (I think my multiple messages may have been a bit much...but how did I know? I know he works at OHSU and at Kaiser.) Dr. Turker was very kind and said next time to call his assistant and she will make sure to get a hold of him.

Dr. Turker asked what was going on. I gave the quickest, best version I could. He said he wants to see John right away (my heart did stop). He said if John is uncomfortable than that is enough for him. Dr. Turker was at N. Interstate until 11:30 am, which is North Portland. I told I would wake up John and we�d be on our way as soon as we could.

I was concerned about Johnathon being able to crutch to the clinic but John was adamant he was not getting in a wheelchair�where does he get that stubborn streak?? Ned! John did fine crutching and we were visiting with Dr. Turker in no time at all. He said John has large hemotoma (the 4� by 6� swollen area under the incision). In fact, I�d say Dr. Turker was fairly impressed with how big it is. I asked if it would have made any difference if we had seen him days earlier and he said no. There�s nothing we can do. The low-grade fevers are from the hemotoma breaking up and the blood going into John�s body. The only concern Dr. Turker has is the product they used for the bone decompression could be in the hemotoma and develop a bone. It�s too early to tell but eventually we could see it form and then we�ll have to wait for the bone to mature. Once the bone matures, Dr. Turker will �scoop� the bone out of John�s upper thigh. I asked about bone infection and Dr. Turker said if the incision seeps or John runs a fever of 101 degrees plus or if the swollen area feels like a water balloon, go to OHSU ER immediately. He will meet us there. If we were to call Dr. Turker, he would want to see John and the fastest way is through ER (I really hate OSHU ER�bad, bad memories). I think Dr. Turker may regret not using staples to keep the incision tight but John did so well last time, how would he know. Hindsight is 20/20. Dr. Turker did say when John isn�t feeling well, everyone knows it�hum�was the a comment about a mother�s persistence�John thought it was him being too vocal recovering from surgery�damn�one comment created guilt for two people. I need to figure out to do that�

Since John�s right hip was hurting, Dr. Turker had x-rays taken of both hips. He was concerned the right hip may be collapsing. Thankfully that is not the case. Both hips look good (we don�t know if the left hip surgery is working yet). Dr. Turker suggested John start using a wheelchair. I asked if that was for healing or pain purposes and it�s only for pain management. John said he would wait until Sunday. Dr. Turker does not want John to return to school this week (broke John�s heart�NOT!).

It was a good appointment. Now, I feel like I�m been awake for 24 hours. Amazing what the emotions can do to a body. I keep thinking I can handle anything since we�ve been through three years of the cancer roller coaster but fear is fear.

7:00 am - John ran a low-grade fever last night and the area around his incision is swollen. I called the orthopedic advice nurse (prior to fever) in the early evening and it was difficult at best. I don�t think I describe the incision area very well. The advice nurse said he wasn�t overly concerned but he would talk to Dr. Turker today. He kept asking if John had a fever since Sunday and he hadn't...until he went to bed last night. Argh.

John�s incision hurts. He asked for pain medicine last night for incision. The incision isn�t a tight line; there is probably � inch opening. It looks pink. I don�t think there is an infection. I am concerned about a bone infection but I don�t know what the signs are.

This morning John said his right hip feels different. He can�t walk right and it really hurts.

I am concerned. I will make an appointment for John to be seen today as soon as Kaiser opens.

Wednesday, May 16, 2007

Day 639 Post Transplant.

All is going relatively well. It hasn�t been as smooth as hope but John is still doing very well. I think we all thought this would be as easy as the last surgery and forget how incredible his recovery was.

John�s left hip has more pain and his right hip is hurting. He�s needed pain medication more often but that typically means he may have one or two tablets of low level pain medicine a day. When I told the discharge orthopedic doctor we didn�t need another prescription for pain medicines because we still had some left from last time, he lifted an eyebrow and asked if I was sure�my supply of approximately 30 pills may not be enough. I assured him it was and still is. However, I think they expect John to be taking more than he does.

On Sunday, we had a mini-scare. John ran a low-grade fever. Ned gave him Tylenol and it went away. When the Tylenol wore off, the low-grade fever came back. I reviewed our discharge paperwork and we were to call if the fever wasn�t handled by medicine. It was so I didn�t call the orthopedic advice nurse. I called Monday morning and left a voicemail. I have yet to hear from them. His bandage came off Monday evening and the incision looks good. No signs of infection. John hasn�t run a fever since Sunday so I�m not going to pursue talking to the advice nurse. I will let Dr. Turker know though.

The pain is enough that John is not comfortable going to school. He actually was planning to return Monday but there was no way. He went to a referee training class on Saturday and I think that may have been too much and slowed down the healing process. He hopes to return to school tomorrow. He did drive yesterday evening and that went fine.

My mom�s birthday was Monday. Happy Belated Birthday! My mom and dad are coming to visit today so they can watch Andrew�s last track meet. The weather is beautiful today, which is a rarity for track meets. It seems like there will be a stretch of nice days until meet days and then the weather turns nasty.

Happy 40th Birthday Janna!!! Oh, it�s wonderful when friends turn 40!!!!!

Thursday, May 10, 2007

3:00 pm - We are home and unpacked!!!

John is doing GREAT! He hasn't had very much pain. The last time he used his PCA pump was at 4 am this morning; otherwise, he has only had Tylenol.

Yesterday was a different day. I felt more relaxed about John�s surgery but my emotions were raw. Janna and Bri hung out at the hospital all day. Bri is a good friend of John�s and she wasn�t about to be anywhere else than the hospital. As I mentioned in yesterday�s journal, surgery was delayed but the surgery in itself was quicker. John�s recovery was also quicker and we were in a room before dinner. I was feeling much better once John�s surgery was done. I�m sure it made a bigger impact than I was aware.

John woke up starving. The nurses were ordering up food as fast as they could. He asked Janna and Bri for donuts in recovery so when John was taken to his room, they went and bought two boxes of donuts. I don�t think I�ve ever seen any one enjoy a donut more than he did at that moment. Ned and I went to KFC to get him dinner. John�s appetite was amazing. Last time, he wasn�t feeling well enough to eat more than a cup of macaroni and cheese.

Ned left around 8:30. John and I watched a little TV and visited with the nurses. The CNA said she would have never recognized John and keep repeating how good he looks.

There was a family with a young girl (around 8) a couple doors down from our room. The young girl was apparently newly diagnosed. You could see devastation in families� eyes and emotional pain they were in. Every time I�d leave our room, someone was crying outside of her room. I can feel their pain and can�t wait for a cure.

John had a great night. Relatively little pain but had a hard time falling asleep. I think he did his majority of sleeping this morning. I took off to get coffee and when I returned, I saw so many familiar nurses� faces at the nurses� station! One nurse commented how good John looked. I knew she wasn�t our nurse and asked her if she saw him and she said, �Yes, I peaked in when he was sleeping�. We had many nurses stop by our room this morning, all commenting how great he looks. Yea, he does look awesome!

I asked our nurse around 10 am when the orthopedic doctor might stop by to discharge us. The nurse said she would give them until 11:30. At 11:30 she paged them and around 12:30 pm the orthopedic doctor arrived and we were out of there as fast as we could sign paperwork.

It was wonderful to visit so many nurses who became like family to us. It was easier than I thought to be back at Floor 10. There is definitely a comfort there. However, I only want to go back to visit. We are done with overnight stays. :-)

John doesn�t need to see the orthopedic doctor for four weeks. Since John healed so well last time, he didn�t use staples. John can return to school when he feels strong enough, can drive in one week, and will be on crutches for at least four weeks.

Oh ya, we saw Tara (bone marrow transplant team NP) this morning. She confirmed John is officially not seeing the bone marrow transplant team anymore.

�Each new day is a gift to be enjoyed.�

Wednesday, May 9, 2007

Update 2: Surgery was done by 4:30 pm. Both Ned and I were surprised when we saw the surgeon so soon. All went well!

John is on Floor 10, Room 9. He requested floor 10 in recovery. I thought it would be hard to be back on floor 10 but it isn't at all. In a way, it's like going home and it's a good thing this time.

John is doing much better than last time. He is eating and fairly alert. Ned and I are on our way now to get him KFC. I think we should be discharged by tomorrow afternoon. Yahoo!!

Update: John's surgery didn't start until 3:00. It's 3:45 pm now. I will try and update when I can later today.

It's been a very difficult morning. I found out this morning that my friend Michele passed away. I've been trying to not let John see me upset; he also knew Michele and met here before her second transplant. I didn't want him upset prior to surgery. The doctor let me know they will take good care of John as the wheeled him away; something they didn't say with the first surgery. I must not be hiding my emotions as well as I think.

Life is so fragile.

Earlier: John is scheduled to arrive at Doernbecher�s at 11 am with an expected surgery time of 1 pm. The anthesiologist called Tuesday night to review the entire surgery. She wanted to know what type of reaction John had to Adivan and said she spent 2 �3 hours reviewing John�s medical file. She said she had to go to 2004 during ICU to find the reaction. I could have saved her some time if she would have called first. :-) I�m sure it was a good thing for her to have a review of John�s medical history and she feels comfortable using Versaid, which is in the Adivan family. Versaid sounds very familiar to me so I am positive he�s had it many times. She could only find two instances it was used (once in 2004 and once in 2005); she said if the clinic used it she wouldn�t have those records.

The anthesiologist asked to talk to John and I on the phone at the same time. When she was done, she asked to talk to me alone again. She commented how good he sounds for all that he�s been though. All I could do is smile and agree. He does sound damn good.

Please, please pray for my friend Michele. I have known her since high school. She had a transplant the same time as John then relapsed. She is undergoing her second transplant in Seattle and she is having a lot of problems. They are in crisis. Michele is not sure she wants to continue to fight.
http://www.michelesnews.blogspot.com/

�Our blessings are not the fruits of our prayers alone, but those of another praying for us.� Author Unknown

Friday, May 4, 2007

Day 627 Post Transplant

Today, May 4th, is the third anniversary of John�s original leukemia diagnosis. Since Caringbridge changed their format since 2004, not all of the journal entries are available to view in the history. Thank goodness for Dave Yackey who periodically saved the journal entries and guestbook entries so we didn�t lose anything. Here are the first couple days of our nightmare�

Monday, May 3
(Blud is purposely misspelled as the computer won't allow the proper spelling)
Johnathon had not been feeling well for the last three to four weeks. He had bouts of diarrhea but nothing constant or significant. Since he has dairy sensitivities, I figured he was eating something he shouldn't be. On Sunday, May 2, he ran 102.5 fever (discovered this after he played a baseball game and mowed the lawn..poor guy!) and he continued to have a fever on Monday of 101.5. I made an appointment to see the doctor thinking he may have some sort of bacteria/virus. The doctor thought he might have bacteria also and decided to take several blud tests. At 10:30 pm Monday night, I received a phone call from an OHSU doctor, which was strange since we go to Kaiser. He said John's white blud cell count was 10 times as high as a normal person�s (130 vs 15). He said we needed
to get John's blud tested again. I asked when and he said now would be good. I woke up John and off we went to the emergency room. The nurse there said the highest white blud cell count she has seen was 30 and the person could not get out of bed. She was pretty sure there was an error somewhere with the lab and the doctors were worried about appendicitis. John and I waited for a bit in the waiting area and they took us back to a room before many other people waiting to be seen (we did get some looks!). Another nurse came in and asked again how John has been feeling. Probed for more information...has he been tired? body aches? headaches? but none pertained to Johnathon. The ER doctor came in and said the OHSU doctor was on the phone and wanted to talk to me. I picked up the line and he said John does have high white blud cells and he was sorry to tell me on the phone but John has Leukemia. He then said the doctors were trying to determine whether John should be admitted that night or the next morning. So John and I waited some more and it was determined we were to go to Doernbecher's right away. Ned arrived about that time and we all drove to OHSU ER (the only way to get to
Doernbecher's in wee hours of the morning). We ended up waiting in their ER for 30 minutes. They were understaffed and apparently kept forgetting about us. To say the least, there were interesting people in that waiting area. We finally got to John's room around 3 am. I called Anne Lynch around 4:30 and she started the Wilsonville communication chain! I didn't have anything with me (phone numbers, etc). We were TOTALLY unprepared. Ned did bring a few items to get us through the night.

Tuesday May 4, 2004
Tuesday morning by 6:00 am Anne Lynch, Marie Samuelson, and Jill Ripple arrived for moral support. It was a long day of waiting. . We settled into a room on the 10th floor (the oncology ward). We waited most of the day to here what type of leukemia John had. The doctor�s were having a tough time diagnosing the type from the samples. So they determined that they needed to test his bone marrow. At 4:00 pm they performed the spinal tap, took a bone marrow sample and gave him a dose of chemotherapy directly into his spinal fluid. They had told us that after they tested the bone marrow they would be able to determine the type of leukemia John had and the regiment of chemotherapy he would need. When John returned back to the room from his procedure is was feeling really HAPPY. They had given him anesthetic and some other pain medication. He was really feeling good he was very chatty and keeping us all quite entertained. The nurses kept coming into his room and telling us stories about what he was saying to them while he was under anesthetic. However his potassium level was reading very high and they needed to bring it down by flushing his system, so he had to drink 4 cups of some really chalk drink (John�s description is that it looked like poo), but we was a stud and drank it all!!! The nurse told him that it would cause diarrhea, which would help flush his system. The nurse did not tell him a lie��He was very sick most of the evening from the medication. They finally gave him some benadryl, which knocked him out so he was able to sleep. We waited and waited and waited. They finally came in and told us that it would probably be Wednesday morning between 9:00 am � 10:00 am before they would be able to determine the type of leukemia and the regiment of therapy.

Wednesday May 5, 2004
John was still feeling a bit lousy but was being a trooper. 9:00 am came and went�.10:00 am came and went��John got up a took a shower and was beginning to feel a little better. He had his first visitor�s Jordan Beltz, Gabe Ripple, Greg Lynch, Justin Howe and Kevin Samuelson came to visit and brought him a poster that the entire 8th grade class had made him��he has it proudly displayed on his wall. However we were still waiting to here his diagnosis. Finally about 4:00pm a team of four doctors entered the room with chairs (talk about intimidating). They began to give us a biology lesson more than we ever wanted to know. They explained the different types of leukemia and explained that they couldn�t quite determine what type he had �Yes Johnathon is special and has to be different. They explained that there were two different types of chemotherapy the two categories of leukemia ALL and AML. ALL requires a milder type of chemo which is administered on an outpatient basis but would take three years the other type AML requires a much more aggressive treatment that is very hard on the body and would require a month at a time in the hospital but would only take 6 months. They told us that it would require the more aggressive treatment and he would have surgery on Thursday to put in a �Hickman� (which is basically a shunt into his heart to administer the chemo). He would then have his first full chemo treatment on Thursday evening after surgery. We were pretty devastated but optimistic about the prognosis.

Update: I did notice my journal isn't totally complete. As soon as I received the leukemia diagnosis, I first called the Olsen�s before calling Ned. I wanted to make sure Andrew had somewhere to go because I knew Ned would be on his way as soon as he heard. Johnathon spent the first five weeks in Doernbechers and I never left. My parents were out of town on a cruise and the Olsen family took care of Andrew. I am eternally grateful.

Monday, April 30, 2007

10:45 am -
AWESOME DOCTOR�S APPOINTMENT!!! Dr. Lamkin said he feels confident the same leukemia will not come back. OMG!! It�s a statement that it starting to sink in more and more as time goes by. It�s one I prayed to hear.

John�s does have a mole that looks odd. Wade�s wife, Maia, noticed it this weekend. Dr. Lamkin said to let him know if it changes and he�ll order a biopsy.

Dr. Lamkin is very happy how things are going. He thinks John looks great. We talked about immunizations. I told him about my fears (I have a fear that a late immunization may have started this cancer nightmare) and Dr. Lamkin said he isn�t in any hurry to start the immunizations. He said some are not really necessary. He definitely didn�t appear to want to press the time issue. I want what is best for John and if he said we need to start immunizations right away, I would push back those fears and go forward. Dr. Lamkin said the transplant team might suggest we start pretty soon. I asked if we were still seeing the transplant team and that is somewhat unknown. Since Dr. Nemecek is on maternity leave, things are little bit in the air. We don�t have an appointment scheduled to see the transplant team. I have the impression we are very close to be transferred out of their care, if not already. Another milestone!! Yahoo!! John will have another CT scan of his chest in July to see what the mass is doing. Dr. Lamkin thought that could be the last CT scan. He doesn�t want to see John for three months and he doesn�t want any blood work. I need to be pinched. I want to scream with excitement but experience has shown us that things can change at any minute. I will enjoy today but remain cautiously optimistic.

We found out some news about John�s donor!!! I asked Kelly if we could attempt contact again and she started screaming, �oh, oh, oh!!�. They found out that John has an international donor, probably from Germany (makes TOTAL sense since both Ned and my family have a lot of German ancestors). With international donors, there is a two-year wait for contact versus one year nationally. What if the donor is a distant relative?? I think there could be a trip to Germany in the future!! Kelly told me to continue bringing in letters/cards and they will forward them to the donor. The two-year mark isn�t far away. Maybe this will be the year we will have the privilege of meeting the man who saved John�s life. I hope everyone who is reading this journal is a bone marrow donor. If not, please do so. You truly could save someone�s life.

�Nothing is worth more than this day.�

8:00 am - We�ll be heading for John�s Doernbecher appointment in a few minutes.

We had an awesome weekend! We got out of town. Yahoo!!! My brother and his family moved to Seattle and we joined them along with my parents to go to the Supercross at Qwest Field on Saturday night. I love the Supercross. I have very fond memories of going the Supercross when it was at the Kingdom with my family. My family did a lot of camping and riding motorcycles. Hearing the motorcycles and smelling the fumes/dust at Qwest Field made me long for riding motorcycles again. My brother races and we�ll be attending his races this summer. I told Ned we need pit crew t-shirts (ha, ha). Wade is excited to get John riding motorcycles and already gave John a pair of riding boots. I�m thinking I should start riding with him�I would help his confidence as he would improve faster than I (I am laughing).

It was great to get away. During those couple hours at Qwest Field, I didn�t think about Leukemia or AVN or anything else but what was going on that moment. It was wonderful. It was normal (whatever normal is, such a relative term).

John and Andrew had a good time too. Andrew was able to use my brother�s camera and he was very happy. Andrew LOVES to take pictures. John did very well walking to Qwest Field and handling crowds. I was nervous someone would bump him or his hips would start hurting so bad that he wouldn�t be able to walk very far. I should not have been nervous. We had a hard time keeping up with him!

We stayed with my brother and his family and it was great to catch up. Wade and I haven�t lived in the northwest at the same time since 1990. Too long. We look forward to spending more time with them.

John�s second surgery is next week, Wednesday, May 9th, which is Ned�s mom�s birthday. We figure that makes that day even more special. Surgery is coming up so fast. Andrew�s birthday is May 21st. What a month!

Friday, April 27, 2007

Thanks Spiderman for the reminder to update. (see guestbook entry). I do check the guestbook entries daily. I just don�t always have anything to update, which is very GOOD!!

John continues to do well. His hips are hurting and I noticed he is taking Motrin regularly for the pain. He doesn�t have a normal walk to compensate for the left hip and I wonder if the way he walks makes his right hip hurt. The left hip has always hurt but we thought the right hip pain would go away.

We see Dr. Lamkin on Monday. The visits to Doernbecher�s always make me nervous.

Andrew is doing well. He is in track and wrestles when he can.

See�not much to report!

However, not all is well for Owen. His mom updated their site yesterday that they are afraid Owen may have relapsed (see link below). Please pray for Owen and his family.

Monday, April 16, 2007

John's left hip surgery is scheduled for May 9th at Doernbecher's!! John is hesitant about the second surgery. I think he�ll do it but he isn't excited about it...but whose to blame him. He's been through so much already.

John is walking better than before the right hip surgery!! I am excited to see what impact he left hip surgery will do. The left hip is the worst and the one that creates the pain.

Dr. Turker asked John on Friday if the pain was better. John said I didn�t have pain in the right hip. Dr. Turker looked at me with a puzzled look and I reminded him he operated on the good hip first. He said, �Oh that�s right. That is how UCLA does it.� Evidently, operating on the good side first isn�t typical.

Please pray for Owen. See his link below. He is fighting a lung infection, which put him into ICU last Friday. When I got home on Friday, I updated John�s site then read Owen�s. It was such an odd feeling to be so high for John�s day and then to feel so low for Owen and his family. How can one family have such a great day and another family have such a terrible day? It definitely reminds me how fragile life is.

We are blessed to have today.

Friday, April 13, 2007

Happy Friday the 13th!! Today was a lucky day for us!!! JOHN�S RIGHT HIP IS RECOVERING GREAT!!

John had an appointment with Dr. Turker today. We fully expected to hear things are progressing fine and that John could drive in a week or so but�it�s not what we heard!!!

John had x-rays before the appointment. Dr. Turker came in with the x-rays beaming. He showed us the x-rays and said he is very pleased. The cadaver fragments are already starting to harden on the top of John�s femur. He said John doesn�t need to use crutches any more, he can drive, and let�s get the left hip surgery schedule as soon as possible. Both John and I looked at each in disbelief and the questions started flying. What about physical therapy? Dr. Turker said, �Doesn�t need it. Did you see how much flexibility he has?� Can we wait until summer to for the left hip surgery? Dr. Turker, �No, I�d rather operate on the left side a soon as possible.� I asked about what John had done versus the core decompression he typically does. Dr. Turker said the bone fragments and the bone stimulant were both new procedures to him. Throughout the appointment, Dr. Turker kept saying how pleased he is. We were suppose to schedule John�s left hip surgery before we left but the person who does the scheduling was away from her desk. I will call on Monday. Wow, I am still in shock. We were told 6 weeks with crutches and no driving and 2 - 3 months before we'd see anything happening with the hip. CELEBRATION TIME!! HAPPY DANCE!!!!!

Dr. Turker�s office is near St. Vincent�s so John and I visited Chris. His recovery isn�t as great as we hoped. Please pray the doctors can figure out how to fix what is not working properly. On the way home, John said it was nice to be a visitor in a hospital room.

To top that all off, Ned's sister moved to Portland, my brother and his family will be moved to Seattle next week AND tax season will be over in a few days!!!

LIFE IS GOOD!!!!!!!

Friday, April 6, 2007

8:00 pm - It's all good.

We saw Dr. Lamkin first who immediately asked if we had the x-rays. I tell him the receptionist called yesterday and said we were to see him first and he may or may not decide to have the x-ray. Dr. Lamkin rolled his eyes and said we need to get that done.

He asked John what was going on. Dr. Lamkin said once you have a blood clot, the vein could be more susceptible. I said, � Wait. I didn�t think he had a true blood clot. I thought it was from the mass putting pressure on his vein.� Dr. Lamkin tilted his head and quietly said, �Oh, that is what you are worried about.� Worried about?? OMG! I called yesterday to find out if I should be worried and receiving a request to get John in the clinic within 24 hours can create a bit of worry but I never told them I was �worried�. I guess it's a good assumtion I was worried if I made the call. After my phone call to them, I was beyond �worried�.

While we were waiting for the ultrasound and x-ray orders, the infusion room nurse stopped by. We have not seen her for a long time but we spent many, many hours with her when John would have outpatient infusions. She peeked in and said I saw John�s name on the board and wanted to say hi. Her jaw then dropped, she pointed at John, and said, �is that you?� Amazing what a year can do.

Dr. Lamkin sent John to get an ultrasound and x-ray believing he wouldn�t see anything. It all went relatively quickly (relative�as to clinic time) and we go back to the oncology clinic. We wait. My heart is starting to pound and my palms are getting sweaty. What if this the mass? What if it�s leukemia? Did the shock of the surgery to his system create a horrific event? Ned calls wanting to know what is happening. I am so full of nerves; I�m having a hard time saying anything. John decides to inform me that the x-ray tech said everything looked normal. I about crumbled right there. Dr. Lamkin comes in, tosses the paperwork with the results at John, and says, �Everything looks fine. Go home.� My head is spinning, my stomach is turning, and my body isn�t responding. Once I was able to regain composure, I was ready to run out of there.

On the way out of the clinic, we see the Doernbecher tutor Debbie and she is thrilled to see John. She didn�t recognize him at first. She is very pleased with what John has accomplished and she kept repeating, �John, do you know you made my weekend by seeing you?� It was great.

I am exhausted. Amazing what emotions can do. I am very happy.

Thursday, April 5, 2007

John's been complaining about his left arm hurting and not able to extend it fully. I figured it was from using crutches. When he came home from school today, he said he isn�t sure if he can go to school tomorrow. The pain is getting to be too much. I looked at his arm and sure enough it�s swollen.

I called Tara at Doernbecher�s and she spoke to Dr. Lamkin. They want John to get an MRI and see them tomorrow. I asked if crutches probably caused this. I was told they don�t know and need to find out. Argh. I want John to experience �normal� things and a swollen arm be just that. I�m assuming they are concerned about the mass in his chest. Deep breath.

I am waiting for a call back to schedule an appointment.

Tuesday, April 3, 2007

Update - I knew I would forget something! John's eating has improved drastically! Ned took spring break off and made his mission to make John eat regulary. After a few days, John was asking for seconds!!! Yahoo!

7:00 am � Day 596 Post Transplant....Almost 600 days!! Remember when Day 100 was the focus!!

Sorry the lack of updating. I�m sure if you�ve been reading my journal for a while you know I am a CPA and tax season doesn�t provide a lot of spare time. I basically spend every spare moment I can either hanging with the boys (which is not often enough) or sleeping. It�s been a very busy tax season but it will be over soon. It�s good to be busy. It does suck that tax season goes until the 17th this year! :-)

John had his follow up surgery appointment yesterday. Dr. Turker wasn�t in so the appointment was with his partner, Dr. Renwick. John had x-rays prior to the appointment. Dr. Renwick was very pleased with John�s healing. He thinks the left side could be operated on in 5 weeks. We�ll see what Dr. Turker says though. Dr. Renwick said he helped with John�s surgery. I am surprised two of Kaiser�s best orthopedics was performing John�s surgery but I wonder if it�s because the procedure is new to them. John had his staples removed, which is a very good thing. He was afraid he would snag them. Ouch! John�s next appointment with Dr. Turker is April 13th. John is hoping to get the approval to be able to drive again.

Last Thursday, John informed us his right thigh was swollen. Of course it was when we were all in bed. It seems to be John�s favorite time to let us know something is going on. I had a difficult time sleeping. I was afraid it could be a bone infection. However, there were not any other signs like redness, fever, more soreness, etc. Also John was busy doing errands with Ned that morning and he came home tired (He finally went to DMV to get a new picture. The one he had was when he was bald and on steroids. It really didn�t look like him and it almost created problems at the airport security.). The swelling appeared to be from overdoing it but I needed the doctor�s confirmation. I called first thing in the morning and the nurse agreed. I received another call in the afternoon to check up and the swelling had decreased. Whew.

Please pray for our friend Chris Zimmerman who is having surgery this Thursday at St. Vincent�s. Chris is such a great guy. He has been coaching youth baseball and youth football as long as I can remember. His hospital stay could be from two to ten days. A long time for someone is used to always being on the go.

We took John�s truck to Lance�s Superior Auto Service and as always, they did a great job fixing it up. It�s now at Artistic Autobody. Artistic will buff it, take off the odd colored pinstripe, and detail the inside. By the time John can drive, his truck will be ready for him.

Thank you for all your prayers and support. I could never express how much that helps us.

�Our blessings are not the fruits of our prayers alone, but those of another praying for us.� Author Unknown

�Each new day is a gift to be enjoyed.� Author Unknown

Saturday, March 24, 2007 8:00 PM CDT

John continues to do well.

John got a car today!! I was unsure of buying one while he is unable to drive but it was what we were looking for. The next six weeks will give us time to work on it a bit.

New pictures (Are you happy Aunt Joanne and Jim Beltz???). if he looks thin, it's because he is. He lost more weight, another 8 pounds. Argh!!!

Friday, March 23, 2007 2:32 PM CDT

John had an excellent night!! He took pain medicine at midnight and didn't need another one until noon when he lost his balance and put some weight on the right hip. Ned stayed home today to help out with John. It's nice to have him home. It made me a bit nervous to always be on the bottom stair of John going up or down the stairs, knowing that if John fell, we were both tumbling together.

Andrew did ok in districts. He won the first match and lost the next two. During the first match, the opponent was penalized for extending Andrew's leg the wrong way. It unfortunately hurt his leg. The next match did a number on his neck. He was very sore the next morning. He went to Portland yesterday to wrestle.

Thursday, March 22, 2007 9:14 AM CDT

Update: 4:15 pm - WE ARE HOME!!!!!

John is doing well. Amazing what a difference a few hours can make!! He is managing his crutches well. He was able to go up and down the stairs without too many problems. The biggest issue will be our two happy labs. I am always amazed how they can pick up on injury/sickness and I know they will adjust to the change.

It feels GREAT to be home!!!!!!

7:15 am - All went relatively well last night. John is pretty doped up. He would wake up hungry, eat a little then throw it up. The pain doesn't seem to be too bad but again, he's doped up.

The doctor said this morning it is feasible we could go home today if John's is off the PCA pump and he can manage with crutches. I knew those were the two reasons for discharge so I'm not sure if we will be going home today or not. I was suprised they put him on a PCA pump (patient managed IV pain medicine). I wonder if it's being proactive due to his past pain problems.

Dr. Turker said surgery went well. He said we won't know biologically if this procedure will be successful or not for a couple months. He said we can wait to schedule the left hip once we have an idea. I told him the left pain is worse and thought the core decompression would help the pain. He said it would and his office will call to schedule the left side surgery.

Dr. Turker said they had to use staples because of John's skin being spongy from the GVHD and steriod damage. I knew his skin looked different but didn't realize the make up of it changed. I believe the doctors are concerned how the incision will heal.

Floor 9 is a different experience. There were many times I felt a tightening in my chest from anxiety. Floor 9 looks similar to floor 10 but larger. I am a little disorientated. I would ask the nurse where something was so I could go get it and she would tell me she would do it. It was nice but I am capable of helping out.

I woke up many times to an infant in a full out cry last night. I would think, "oh that poor baby has cancer" and realize we aren't on floor 10 and there could be a lot better reasons why the baby was here.

Nurse Tina came to visit us last night. John slept through most of it and woke up after she left. He was bummed he couldn't stay awake. Thank you Tina for visiting!

We'll see what today brings. Thank you for all your prayers!!

Wednesday, March 21, 2007

8:00 pm - John is doing good. We are at Doernbecher Hospital, Floor 9, Room 7. The phone number here is 503-418-5907. We are not sure if John will get to go home tomorrow. It feels weird to be at Doernbecher on another floor than the Cancer Unit. I keep reminding myself that we are not here for Cancer treatment, but for this surgery. A whole different world. I will update more tomorrow.

6:30 pm - Surgery is Done!! All went well!! John is in Recovery. I will update more later.

2:00 pm - Surgery is a go!!! The doctor said she heard a little bit in John's lungs but as long as he was not running a fever and his oxygen stats are good then it should be fine. No fever and 95xygen level. It's all good!!

We arrived at 12:30 pm but surgery is not scheduled until 3:10 pm. John has an IV and he is waiting...starving...waiting. We let him sleep until 11:00 am this morning so he's not wanting to rest. Lucky for him, Ned and I get to have quality conversation time with him!! :-)

The nurse said the surgery schedule is running about 45 minutes ahead. John may be in surgery by 2:30 pm. The 10th floor is full at Doernbecher's, which a total bummer knowing there are enough sick kids to fill the floor. Since John has a cold, I wasn't sure he should even be on that floor anyway. It looks like he will be on floor 9. A new experience. It's a bigger floor and I've heard much louder. No computers in the room but the public computers have been moved to floor 9 during the construction so it shouldn't be too difficult to update...if there is a free computer.

It's been an interesting day. Emotional due to past experiences. I have to keep reminding myself we aren't here for cancer.

All is good. We are taking a good first step to help John's hips. Someone commented they thought John was definitely getting his left hip replaced. I probably wasn't clear enough with my entries. John will receive the same procedure he is having today on the left (in a couple months). Hip replacement will hopefully never happen but mostly likely will happen in a couple years.

Monday, March 19, 2007

Tuesday update: Anesthesiologist called tonight. John is to arrive at Doernbecher's tomorrow at 12:30 pm. It will be nice to not rush in the morning but John will feel the hunger pains more. I will be glad when it's over. I will try to update when I can. If we go to the 9th floor, they don't have computers in each room and depending on how John feels will determine if I can get away to update. Ned and I will have our cell phones and my mom is at the house.

Monday: Pre-op appointment done. Dr. Turker said they will bore a hole into John�s femoral head, drilling in an upward angle. They will pack broken cadaver bone where the top of the femoral head is collapsing then put a �plug� in the top of the hole. Compact the hole with the BMP product to stimulate bone growth. This product will promote the cells that eat dead bone and build new bone. It will add support to the femoral head. They will put a �plug� at the end of the hole and use more cadaver bone fragments. The �plugs� are to prevent the BMP product from eating the dead bone fragments. The surgery will last 2 � 3 hours. His incision will be 3 to 4 inches long. The right side will be operated on first since it�s the less painful side and most likely the better side. The left side will be operated on in two to three months. John should only be inpatient for one to two nights; pain and movements are the deciding factors when he gets to go home. Physical therapy will work with him in the hospital to make sure he can navigate stairs when he gets home. Pain differs with each person with this surgery. Some experience little discomfort and others experience a lot of discomfort. Dr. Turker will notify the OHSU pain team just in case John�s pain tolerance is still elevated. We think it won�t be but you never want to assume. John cannot drive for six weeks after surgery on the right side but as long as he doesn�t drive a stick, he will be able to drive after the left side surgery. Good news to Johnathon. He is really bummed to lose his driving freedom. Dr. Turker took e-rays today and the good news is that his hips don�t look worse. Yea! They could be worse inside the femoral head but on the outside things look similar. I asked if the femoral heads could collapse during surgery and Dr. Turker said absolutely not. Whew. The surgery may speed up the collapse but it�s happening anyway. We are hoping it will prolong the collapse and give John more time before a hip replacement is necessary. At the very least, it should help with the pain. Dr. Turker listened to John�s lungs and they sound a bit �wet�. He�s had the cold and cough for a week or so. Dr. Turker said it could be enough to postpone surgery but he said it is better to not make the decision today. In the next two days, it could get better and the anesthesiologist is the one who makes the call. I think that is all I know. If I missed something, write in the guestbook or e-mail me and I�ll explain it better.

We have finally decided what type of vehicle John is looking for. With his lack of hip movement and gas prices, he is looking for an extended cab small pickup or small SUV. If you see any great deals, let us know! Ned and John looked all day Saturday and didn�t find anything that worked within our parameters. John is still recovering from the impact of walking a lot on Saturday. His hips definitely are hurting more.

Andrew�s district match is tomorrow night. My parents are coming down to watch and help out with Andrew during surgery. It�s great to have parents willing and able to do that!!

Thursday, March 15, 2007

John is still sick. A teacher called today and we are changing some of John's school schedule to adapt to all the miss days of school. It was a relief to know there are options. Sometimes you can get so worked up about something that you forget we have time to adjust. It's ok. One day at a time...

As for surgery, I am holding onto hope it will happen next Wednesday. John's hip pain has increased. Waiting longer isn't a good option. We have the pre-op appointment on Monday. Hopefully John's stomach/chest/fever stuff he has will be gone by then.

Everyone else is doing fine. The sun is shining today. I am so ready for spring!!

Andrew made it to districts for wrestling!!

It has been one year this month since John was inpatient at Doernbecher's. Definitely something to celebrate about!!! He hasn't made it a year since he was diagnosed in May 2004.

�When one door closes, another opens; but we often look so regretfully upon the closed door that we do not see the one which has opened for us.� By Alexander Graham Bell

Time to focus on those open doors!!! The closed doors can seem overwhelming at times but I guess at the very least experience creates character�.and boy, are we overloaded on character!

Tuesday, March 13, 2007

Day 575 Post Transplant

Last week ended up being ok. YEA! John and I were better by the next day. John was back at school and I was back at my desk. It will be a long time before I eat a taco salad again. Ned was out of town and came back late Thursday. We were all glad he was home. Something always happens while he is out of town.

John is sick again today. He woke up sick yesterday with a low-grade fever, cough, chest pain, and general dizziness. He felt better last night and then in the middle of a night had a coughing fit that really scared him. He couldn�t get his breath. I ended up hanging out in his room for a while to make sure he was ok. He is still running a low-grade fever this morning and generally not feeling good. I called Tara at Doernbecher�s and she said it sounds like a respiratory bug going around. I asked if John is getting sick so often due to his immature immune system. She said his immune system should be close to working normally and there are a lot of things going around right now.

After John had his coughing fit, he was shook up. He started talking about school and how a teacher is marking him down for all his missed days. The teacher told John the only way he won�t mark him down is if John talks to the principal. This is a teacher who I know has been aware of John�s journey as it happened. This certainly is a stress John doesn�t need. We've noticed stress will bring on GVHD. I will be watching for John a bit more closer in the next couple days.

John did receive an offer for tutoring in Spanish!! Virginia helped him last year and called to offer her help again. What a lifesaver!! Thank you Virginia!!!

Andrew won all three wrestling matches last week! Tonight is his last season match and then districts next week. He wants to wrestle all year and has chosen not to play baseball. It will seem strange to experience spring without baseball.

Please pray for John to be healthy for next week�s surgery.

Tuesday, March 6, 2007

John had his Doernbecher appointment yesterday. All went well. They did blood work, which is normal for bone marrow transplant team, but it always makes me nervous. Dr. Nemecek thought we were worrying too much about John�s weight loss. Three months ago they were concerned it could be GVHD of the gut. It is hard to keep up with it all. I would like John to eat better but he is a teenager. They thought his eye looked fine and weren�t concerned about it. John said it�s improving. I received a call last night from Maria, Robert�s mom, and she said the eye pain could be from cataracts, a common side effect from radiation. I didn�t even consider that. I will follow up the doctors to find out what signs I should be aware of.

John and I are sick today. It appears we both have food poisoning. Our symptoms are too similar and too timely. We both thought our restaurant dinner had an odd taste to it last night and we had the same thing. John really can�t miss more school and this will make an impact on my workload. What bad timing.

John is struggling with school. We were told it�s time to get a tutor. It�s is a balancing act between school, appointments, and health. With his immune system considered immature, I don�t press it when he doesn�t feel well and allow him to stay home. Health is the number one priority but being behind in school is difficult for John to mentally manage. I�m still trying to figure out if the teachers even understand. It�s all good. Look how far he has came since last year at this time.

Thursday, March 1, 2007

John is doing better. He woke with eye pain and immediately closed the blinds. He sat on the couch covering his eyes making what I consider sounds of pain. He then jumped up and went out the door to school. I thought �he is powering through it�.

I kept waiting for him to call me from school and he never did. When he came home, I asked how his eye pain was. He said it hurts. He took a Moltrin before school and that helped. It also helps that the sun did not come out today.

I asked him again this evening and I got a �fine�. I guess I better back off. :-)

Andrew is quite sick. I woke up to him getting sick and he hasn�t stopped all day. Poor guy. He had severe stomach pain and a fever. I tried to get medicine down him and I�m not sure the medicine ever made it to his stomach. He is more talkative tonight and the body pain is less but he�s still getting sick. I told John to sanitize all the time. I�ve been spraying everything with Lysol.

Yesterday while we were at Doenbecher�s, we were able to visit with several nurses we haven�t seen in awhile. It was definitely the positive of having to go to Doenbecher�s. Thank goodness for all the wonderful people who chose to go into pediatric oncology. Johnathon�s bone marrow transplant doctor, Dr. Nemecek, will be leaving soon on maternity leave. I don�t know how they will transition Johnathon.

Wednesday, February 28, 2007

Afternoon Update: The doctors didn't see anything and the bone marrow transplant team looked at his eye for a baseline. It was a bit nerve racking when the doctor asked if John had any bone pain. They said if it was pink eye he would have "goop" and he doesn't. They asked about dry eye but John is tearing fine. The sun creates the sharp pain; otherwise, the pain is manageable. We see the bone marrow transplant team on Monday for a regularly scheduled appointment.

Morning: John has been experiencing eye pain since yesterday morning. He called from school asking if he could go get eye drops and I told him to go to drug store close to the high school. He called from the store unsure what to purchase and I suggested to ask a pharmacist. John called back a few minutes later to inform me the pharmacist said to go to the emergency room.

I called Doernbecher's unsure what to do. They want to see him. He has an appointment at 1 pm today. I am shaking. I hate the unknowns.

I called the pharmacist and asked if he looked at John's eye. He said he is not qualified to do that and any time there is eye pain, you shouldn't mess around with it. I wasn't a part of the conversation with Johnathon so I honestly don't know what or how things were said. I know John is a little freaked out. I suspect our experiences contributed the reaction.

Deep breaths�I can�t wait for the day when we don�t worry about every little thing. However, I am glad we have the opportunity to worry about little things.

Monday, February 26, 2007

Monday Afternoon Update:

I spoke to someone at John's school and we decided surgery on the 21st would be better for missed days (missing days prior to vacation versus missing days immediately after). Also Andrew will be in school so Ned and I won't have to worry about where he is during surgery. I called Dr. Turker's assistant and she said the 21st was still available. I asked to change it and she said she would...after a few loud sighs. I feel bad to give her additional work. However, she did just call on Friday and I found out today what recovery would look like so I could discuss missed school days with a teacher. There's been a lot of hurrying and waiting. Nothing could be answered until each step was taken.

Monday Morning:
Day 560 Post Transplant

Dr. Turker, Kaiser Orthopedic, informed us John will be out of school for one week (or until he feels well�we won�t relay that piece of information to him :-)) after his surgery. John will be on crutches and will not be able to drive for six weeks. I believe he won�t be as restricted to driving when they operate on the left side. The right side is first since it�s the better hip; they want to save the better side first. Physical therapy may not be necessary. Dr. Turker will access how John is doing after the first two to four weeks. The left side will be done two to three months after the right side. John needs to be able to bear full weight on the operative side prior to the second surgery.

Surgery is schedule for Wednesday, March 28th, during spring break. Dr. Turker only operates on Wednesdays. March 21st was also available and I�m still considering it. I don�t know which date is better as it relates to school.

Sunday, February 25, 2007

John is doing much better. He went to a friend's house yesterday afternoon. When he asked if he could go hang out with a friend, I looked at him with disbelief. He informed he felt better. Within minutes, I could feel my body relax and I got very hungry. Then I felt a surge of energy. I got through some work I was having problems with and cleaned the house. Last night I slept over 9 hours...something I rarely do. Amazing how stress can affect a person and you would think I would handle it better by now.

Friday, February 23, 2007

John is still sick. ARGH!!! I finally got up the nerve to call Dr. Lamkin. I kept telling myself it�s the flu but then there was this small voice saying what if it�s not and the doctors ask later why I didn�t call. What am I going to tell them �denial� over doing the most I can for my son�s health?

I had to a wait a while for Dr. Lamkin. While I waited, my chest tightened, I started shaking, and I felt like I was going to get sick. While I am talking to Dr. Lamkin, I am rubbing my hands together to feel some warmth; I was freezing. Once the conversation was over, I wanted to roll up in ball in a corner and cry. The emotions are so raw yet. It doesn�t take much to put the body over the edge. I feel exhausted.

I told Dr. Lamkin John has been sick for a few days with a headache and stomachache. Nothing that I thought was more than the flu especially with so many people being sick lately. He responded he doubted John had an infection since he was off all immune suppressants and didn�t have a central line anymore. I couldn�t restrain myself. I told him I was not concerned about an infection, I was concerned about relapse. He said in a very calming voice, �I understand that�. He said he doubted that was going on but he couldn�t tell me 100% it wasn�t. He said the symptoms aren�t what they would consider a relapse but if John is still sick in a few days to call him.

Also this morning, Dr. Turker�s assistant called and John is tentatively scheduled for core decompression surgery on the right hip on March 28th at Doernbecher�s. They had a March 7th appointment available but I was afraid that would be too soon since John is sick. Also March 28th is spring break. John commented yesterday he isn�t doing well in school since he missed days from going to Santa Monica and now sick days. In fact, he thinks he may be failing one class. So much to keep track of. Sometimes it does feel overwhelming. However, as long as John is healthy we can overcome anything.

John and Ned went to OSU last Monday to visit the campus and get a tour. John wants to be an engineer and OSU has a good engineering program. It was wonderful to experience the typical junior HS activities. John isn�t sure where he wants to go to college. It�s something for him to look forward too. Ned and I really want John to live in a dorm and enjoy his college years�create new memories.

We haven�t found a car for John. We are looking but with the surgery, he may not be able to drive for a while so we haven�t been looking hard. John�s pre-op appointment is March 21st; we�ll have a better idea about recovery then. His Make-A-Wish Jeep is gone. We sold it to a junkyard with the hopes we�d get enough to pay for the towing. We did take off as much as we could (i.e. we means Ned and John).

One day at a time�

Thursday, February 22, 2007

No word from Dr. Oakes from UCLA. Dr. Turker recommended we make an appointment with him to schedule the surgery and hopefully he will hear from Dr. Oakes before then.

John has been home sick yesterday and today. His stomach and head hurts. I think last night he may have ran a fever (chilled). I am trying to stay calm but my nerves are on edge. Ned was sick for over a week and I have a nasty cold. There is a lot of stuff going around and I keep telling myself that. However, fear forever finds it's way through reason.

My mom and dad came down to visit this week. My dad built Andrew a murphy bed like John's and installed it. It is beautiful. It's nice to be able to put the bed up during the day to give the kids more room in their bedrooms.

Andrew's wrestling is going well. He had a match last night so my parents were able to watch. It's incredible how much strength he has. He loves to pick up his opponent and drop them. I tend to cover my eyes when I see Andrew raise his opponent up. Andrew tells me it's ok, it's part of wrestling. All I know is that if I was the opponent, I would not be getting back up! Andrew is wrestling at 145 lbs. He's about 5' 11". Hard to believe...he is growing up so fast.

Wednesday, February 21, 2007

HAPPY 40TH BIRTHDAY KAREN RINGQUIST!!!!

Saturday, February 17, 2007

I have not heard back from Dr. Turker. We are still planning on the core decompression with BMP. I don�t know when Dr. Turker will schedule the surgery. I assume it will be within the month.

John is doing ok. He hasn�t been feeling 100% the last couple days and it scares the hell out of me. I try to ask questions without alarming him. One day at a time.

Please pray for Andrew Sleeth�s family. He passed away this morning. I HATE CANCER.

Sunday, February 11, 2007

Monday Update:

We have notified Dr. Turker we would like to proceed with the core decompression with bone graft and BMP (protein to stimulate bone growth). Dr. Turker is waiting to hear back from Dr. Oakes on the details of the procedure.

Sunday - Day 545 Post Transplant.

I found an explanation on the internet about hip AVN. Even though I know this, I believe it explains it better than I have. From Dr. Cluett (internet):

�Hip osteonecrosis, also called avascular necrosis, is a problem that impairs the normal blood supply to bone. Hip osteonecrosis occurs when there is a problem of the blood supply to the head of the femur (the ball of the ball-and-socket hip joint). The lack of normal blood supply causes a decrease in delivery of oxygen and nutrients to the bone and the bone subsequently dies. When the bone dies, the strength of the bone is greatly diminished, and the bone is susceptible to collapse.
Treatment of hip osteonecrosis is difficult because the problem tends to progress quickly despite intervention. In the early stages of hip osteonecrosis, crutches and anti-inflammatory medications can be helpful.

Surgical options in the early stages of hip osteonecrosis include hip decompression and vascularized bone grafting. Hip decompression is done to relieve increased pressure within the femoral head. This pressure build up may contribute to the problems with blood supply. A hip decompression is done with the patient asleep in the operating room. Small holes are drilled into the area of hip osteonecrosis to relieve the pressure within the femoral head. The vascularized bone graft moves healthy bone from the lower leg (along with the blood vessels attached to the bone), and places this into the area of hip osteonecrosis. The goal of this surgery is to deliver normal blood flow to the affected hip. Both of these procedures are done only in the early stages of hip osteonecrosis.

The most common surgical treatment of hip osteonecrosis is total hip replacement. If there is damage to the cartilage of the joint, then hip replacement is probably the best option. While hip replacement works well, the replacements will wear out over time. This presents a problem in young patients diagnosed with hip osteonecrosis.�

We arrived at LAX early Sunday morning around 10:00 am. We were told by friends that we needed to try In & Out Burger so before I left I mapquest the directions to In & Out Burger. We picked up our rental car and off we went to In & Out Burger. We arrived around 10:30 am and to our surprise, the place was busy! The hamburgers and fries were good even for breakfast!

We decided to drive to Santa Monica and see if our motel room would be ready early. We took the scenic route and had a nice drive with little excursions to look at the beach. When we arrived at the hotel, we discovered there was only valet parking, which felt a bit strange. The hotel wasn�t as close to the pier as I thought and it wasn�t in general what I expected. I thought it was newer motel and I thought I read it had been remodeled. Any remodeling would have been restricted to the lobby area. If John had any immune issues, I would have been a bit nervous. All was clean but there were areas that couldn�t be cleaned well enough. Our view from our room was an apartment complex. Can you imagine living in an apartment with massive motels rooms looking your way?

John was tired and his hip was hurting from the trip so Ned and I walked to the pier. It was fun to see all the street vendors and people fishing. We stopped by a mini-mart on the way back to buy superbowl goodies for our room. Ned and John lasted until half time in our room and they decided to go to the hotel bar and see if John could hang out there. He was able too so John had his wish�watching the superbowl in a bar. Pretty funny!

Monday morning before the doctor�s appointment went very quickly. We didn�t even have time for breakfast. We arrive at the hospital and even it has valet parking! We go inside to find out where are at the wrong building. The building we need to be at is across the street.

We are called back and the nurse asks for John�s medical card. I tell her they should have everything already but I have John�s Kaiser card. She immediately says they don�t take Kaiser. I kind of laugh and respond, �oh yes, you do�. I hand her the referral and she says Kaiser doesn�t ever refer people to them. Wow. Kaiser did go outside the box for John. Impressive.

Dr. Oakes lets us know he was trained at Mayo, where surgeons aren�t necessarily pro free vascularized fibular graft (fvfg). However, he would recommend a fvfg if he thought it was beneficial and he would only recommend Duke for the surgery. He said he called colleagues about Johnathon to get their opinion too. Dr. Oakes is the chief at UCLA dept. of orthopaedic surgery. He said with John�s case, we would probably get different opinions everywhere we go since his case is unusual and everyone has their bias on procedures. There is not an easy solution for Johnathon.

Dr. Oakes said John�s femoral head is 60 percent affected by the osteonecrosis. The new term threw me for a loop and I asked what osteonecrosis meant. He said AVN was basically saying the same thing twice (avascular and necrosis) and osteonecrosis is a better term.

He received the latest MRI of John�s hips but he tried to review it twice and both times it crashed his computer. He was more interested in getting an x-ray of Johnathon hips to see the shape of the femoral heads. He believed John had fractures in the femoral heads already, which would explain the cist in his left hip. The cist is a pool of liquid created from either the crack in the femoral head or from the femur. He didn�t seem concerned about it. Whew. I read John had a cist on his MRI report and it made me very nervous.

Dr. Oakes said some people are very good candidates for the fvfg. He has never heard of Duke telling anyone that they are not good candidates and he asked if Duke had seen John�s first MRI (Dr. Oakes was able to open that one). I told him Duke did receive it. He said due to John�s journeys, he might have to go back on steroids, which is what caused the osteonecrosis. This would be bad for an fvfg. Also since the femur heads are flattening already, he believes the fvfg would only prolong a hip replacement for two years. Dr. Oakes said there is documentation on permanent damage caused by the fibula being removed from the leg. It is more difficult to perform a hip replacement after a fvfg.

We are bit stunned at this point. It definitely appears hip replacements are in John�s near future. We asked about the new procedure we recently read about where the femoral head is covered in metal, versus being replaced. Dr. Oakes smiled and said the procedure has been around from 20 years and it�s still considered a replacement. He explained the procedure (Burmingham) in more detail and the femoral head would have to be in good shape since the core of it remains. He said he didn�t know if John�s femoral head would be in good enough shape but it�s definitely something to consider. Also you aren�t necessary removing all of the disease with that procedure. For some reason, osteonecrosis stops in a particular area just outside the femoral head so when a total hip replacement it done, the doctors know they got it all.

Dr. Oakes said there is an 85 percent chance a hip replacement will last 20 years and that is data from hip replacements done in the 1980s. He said hips are better now and they don�t know how long they will actually last. We asked about subsequent replacements and our fears. He said he has a lot of tools in his toolbox when that time arrives.

We went to get an x-ray of John�s hips and the x-ray confirmed what Dr. Oakes thought. The femoral heads are flattening (i.e. they are collapsing) and there are fractures. The pain John has is from the femoral head not being round and the ball catching on the socket. He said the osteonecrosis is stage 2 going on stage 3. I asked how fast will it progress and he said everyone is different. In November, I thought we were in stage 1 so the osteonecrosis has progressed in a couple months. Damn.

Dr. Oakes suggested core decompression with BMP. BMP is a synthetic product, which stimulates bone growth. This procedure was developed at UCLA. I asked if we decided to do this procedure if it could be done in Portland. He thought Dr. Turker should be able to do it but he said whoever does the procedure should be the one who performs the hip replacement. He also said with 60 percent of John�s hips affected, John�s hips could collapse from the procedure and he is not confident this procedure will help John. He recommended the right hip (the better hip) be operated on first. He said there is a better chance of saving the right hip. Also core decompression won�t make a hip replacement more difficult. It�s a relatively easy procedure and John will be on crutches for a month, unlike the fvfg recovery

Ned asked about sports and the different options available for John�s hips. Dr. Oakes said no matter what, the hips should not have direct impact, like from running. He provided an analogy of giving a car to a grandma versus a teenager. Grandma�s car is going to last longer. The same goes with hips. They will last longer if they are taken care of.

Somewhere within the appointment, football came up. Dr. Oakes never said John can�t play football but he said he doubted anyone would allow him. He said he understood John�s passion and he also had a sport passion when he was John�s age. He said as you get older, passions change. John could snowboard and use the elliptical machine. He can work out his legs with weights but there would be restrictions. He recommended a larger ball on the hip replacement so John could be active. He said pain, with or without a hip replacement, should be John�s guide to his activities. I definitely had the impression John�s hips will collapse eventually and there isn�t anything that will prevent it. Even the core decompression is only to prolong the replacement. I was glad Dr. Oakes didn�t use the life versus no life approach. We are all very glad John is alive but now he is dealing with quality of life and for anyone, that is difficult, let alone a teenage.

Dr. Oakes last words were, �I hope I made your trip here worth it.� I felt Dr.Oakes did as much as he could for John. He never appeared rushed and answered all our questions.

I have been communicating with Dr. Turker. He is in contact with Dr. Oakes to see what he needs to know to perform the BMP procedure. We still to talk to John but at this time, it appears to be the least invasive procedure. We�ll see. Eyes and ears are open. I did get the impression we should make a decision in the relatively near future.

Please pray for Andrew Sleeth and his family. They found out Andrew did relapse and he was less than 100 days from his second transplant. There are only a few options available to them.

Wednesday, February 7, 2007

Very quick update...sorry. We are home. We arrived at LAX at 2 pm. Ned wasn�t comfortable driving during rush hour and we had done some sightseeing already and weren�t sure what else to do. Our plane was supposed to leave LA at 7:00 pm. As we taxied out to the runway, we thought we would get to PDX a bit early....then we were informed one of the monitors in the cockpit was not working. They turned off the electrical system to "reboot" and that didn't work. After an hour on the runway, we taxied back to the airport. We sat in the plane while mechanics tried to repair the monitor. The pilot informed us they were completing paperwork to go ahead without the monitor. We waited. The steward said it is a bad sign when it takes so long to get a response for approval. A passenger said he was on the same plane earlier that day to come to LAX from Portland and had the same problem. (What?!) They waited an hour for it to be fixed and then took off. We were told the plane was not approved to fly and there was a plane ready to take off to Portland with some seats available. People hurried off the plane to get in line for stand-by on the other plane (vision a plane full of people panicked to get a seat on another airplane). We were told to wait. They announced another plane would take us to Portland. We went and waited while that plane was cleaned. We arrived in Portland at midnight. Three hours later than anticipated. We are all wiped out.

As for the appointment, we did not get the Duke approval. John�s hips are 60 percent affected by the AVN. Dr. Oakes doesn�t believe the Duke surgery would buy more than two years until a hip replacement would be necessary. He didn�t think it was worth the extensive surgery for two years time. We were very impressed with Dr. Oakes. He obviously took the time the read everything I sent. The hardest news was Dr. Oakes, in an indirect way, informed John that football was not an option. He can participate in snowboarding but any sport with impact, like running, is not good for his hips, with or without hip replacement. John shut down. I didn�t recognize it at first and in hindsight, I wish I would have stopped the conversation and asked if he wanted to leave the room. Ned and I need to get all our questions answered and John didn�t want to hear them. It was a hard appointment for John. His dreams were crushed. However, I thought Dr. Oakes was encouraging. There is a surgery we can do which involves a core decompression and a substance called BMP. BMP is a synthetic product that could help the bone repair itself. We need to talk to Dr. Turker (Kaiser Orthopedic) and get his opinion.

I will write more later when I have more time. (Oh ya, Santa Monica was 85 degrees!!!!!!!!!)

Thank you for all your prayers!

Wednesday, January 31, 2007

2:30 pm - Ned and John elaborated a bit more on John�s Doernbecher appointment once they were home. Dr. Lamkin wasn�t aware of all the AVN activity (Duke and UCLA). I�ve been keeping the bone marrow team in the loop but haven�t e-mailed anything to him. I kind of thought the information would get distributed. Ned brought him up to speed and he told John it may be that ultimately nothing will be done (argh!). He also said it�s better to have pain than not to have pain (i.e. better to be alive than not). Dr. Lamkin has always been the doctor who never holds anything back. He thinks if he�s honest with us, we will trust him more. I disagree to a certain extent. There are times when you need a cheerleader. Sooooooo when he said he thought we got the leukemia, this was a HUGE statement for him. Of course, the two-year anniversary is a milestone but Dr. Lamkin is very pleased. Relapse is always a possibility but every day we get further from the transplant day, the less likely it is John will relapse. John doesn�t need to go back to Doernbechers until April 30!!! The next CT scan isn�t for SIX months!! Happy Dance!!!!!!!!!!

I am starting to get excited about our mini-trip to California. The UCLA clinic is Santa Monica and we�ll be staying a motel within walking distance to the pier. I thought this would give John more options if his hip started to hurt. The clinic is very close to the motel too. Andrew will be staying home with Grandma. He isn�t too pleased of being left behind but I didn�t know how much we�d be in appointments. I�m sure he will enjoy the break from us (remember he�s a 7th grader�parents just don�t know anything).

Andrew�s been sick the past three days. He went to school yesterday afternoon and came home exhausted and not feeling well. He went to school again this afternoon and we�ll see how he does. It is tearing him apart to miss wrestling and the season is relatively short. I suggested he didn�t wrestle at the match tonight. He informed me he is feeling fine. Again, I�m parent�what do I know? :-)

John is through 4 finals, 2 to go. Some finals went better than he expected and then some did not. Totally normal stuff. Yahoo!! I can hear him coughing. Hopefully he isn�t coming down with anything. His immune system should be able to handle it; I just hate to test it.

Please pray for Andrew Sleeth. He received a second bone transplant and the doctors are seeing cells they haven�t been able to identify. www.caringbridge.org name �andrewsleeth� .

�Each new day is a gift to be enjoyed.�

Monday, January 29, 2007

10:00 am - Ned just called from Doernbecher's. The CT scan results are known and the mass in John's chest has shrunk. Yahoo!! Dr. Lamkin is very pleased with John's overall progress. If Dr. Lamkin is happy, we are ecstatic. Yesterday evening was so stressful. I hate the day before Doernbecher appointments. I worry they will see something we don�t see and don�t want to see. We are breathing a sigh of relief. We can now concentrate on our UCLA trip and hope we get some answers that provide the results John desires.

�Cancer teaches us that living is a verb. It is an action word. Living is seeing, doing, feeling, saying, touching, smelling, tasting. It is climbing and it is occasionally falling. It is not a waiting word. Don�t wait to live until you have accomplished a desired outcome. Starting right now, grab every minute of living out of each and every day.� By Vickie Girard

Saturday, January 27, 2007

Day 530 Post Transplant.

All is going well. I really don't have anything to write but due to verbal subtle (NOT) comment, I thought I'd better write something. (love ya Helena!) :-)

The trip is planned to Santa Monica (UCLA clinic) and we are ready to go. John had his MRI this week; I�ve mailed the MRI CD to Dr. Oakes, and I�ve requested a copy of the doctor�s report on the MRI be faxed to me. I haven�t received it yet. I will call on Monday.

John is preparing for finals. Andrew has started wrestling. I�m in the thick of tax season, which means I am basically living at my desk. Ned is doing the same thing he typically does. Love it!!! All normal stuff!

John has a Doernbecher appointment on Monday. He will get a CT scan of his chest to check on the mass. John�s voice is strong and I don�t see any swelling in his arm. He did come home yesterday concerned about his biceps. Someone at school commented they looked swollen. He asked his weightlifting coach and he didn�t think they were. He asked me and I don�t think they are either. I do believe we are seeing John starting to bulk up more from lifting weights, which makes John very, very happy. He is anxious to start working on his legs but until the hips are resolved, he is not allowed to do that. All he can do is workout his upper body.

We found out this week that someone else lost her life to leukemia. She was 17 years old, from Sherwood, and fighting AML. She was undergoing the same chemo protocol John did (first journey) and John was asked if he would like to meet her. The thought was he could provide inspiration to her; they were the same ages and from neighboring communities. John never had the opportunity to meet her. She was only into her chemo protocol approximately three months. Damn those chemos. Damn infections. Damn leukemia. This is the third child I know of who died this week from leukemia. John is so lucky to be where he is today. Why can�t all kids be so lucky? Please pray for the Sherwood teenager�s family and Baby Donavan�s family. Today is her funeral as well as Baby Donavan�s.

�Nothing is worth more than this day.�

Monday, January 22, 2007

2:45 pm � Day 5285 Post Transplant.

When I received the appointment date & time for UCLA, I asked my mom to search the web for the best deal/prices for hotels and flights. She has traveled more than I and has done similar research on the web. I figured she would find the best deal much faster than I and since it�s tax season, every minute is packed. Mom called back within a few hours and I was shocked how much this trip was going to cost us. My mom thought it was a relatively good deal; I honestly don�t travel and I�m sure I was being unrealistic about the cost. I got off the phone and could feel the stress coming on. I then felt guilty for stressing about the trip when this is for John�s quality of life and cost shouldn�t be a factor. It�s what has to be done. Within ten minutes of talking with my mom, the phone rings and it�s a friend of ours. She says she read the website and knew this was their opportunity to help us out and they wanted to donate airline miles to us. Oh my. I was speechless. What a wonderful gift and the timing was perfect. There are times like that I feel there is someone watching over us and letting us know He is there with us. She put her husband on the line and he asked for the days and time of departure and arrival. I told him we needed to be careful where Johnathon sat. I didn�t want him to have to go over anyone to get a seat and would prefer the bulkhead if we could get it. The last thing we need is someone to trip over John or for John to trip. He called back in 10 minutes stating our itinerary was on it�s way to our e-mail address and he booked us first class tickets. I went numb. Really? I�ve never been in first class and this is perfect for Johnathon. If only Johnathon could have had first class, I would be static�anything to protect him and his hips. I still get teary thinking about this. What a wonderful gift.

Ned and I spent hours yesterday searching for a reasonable motel. I worry about exposures to John and decided two star hotels were out of the question. We finally found the best deal but it�s not the deal I was thinking about. I must be too na�ve. It�s all good. We have a motel reserved.

I prepared a packet of at least 30 pages for Dr. Oakes at UCLA and mailed it today. I want to make sure he fully understands where we�ve been, what we know, and what we desire. I want those 30 minutes of consultation to be the most they can be. I requested from Dr. Turker, Kaiser Orthopedic, that John have another MRI before we go to UCLA. I don�t want speculation with this appointment. If there is fact which can be known, let�s know it. This is an important 30-minute appointment.

Dr. Aldridge, Duke orthopedic, hasn�t given up hope. He has been communicating with a USC doctor who agrees the Duke surgery would be beneficial to Johnathon and would support the surgery. Kaiser originally stated John should go to USC or UCLA; however the written referral was for UCLA. Dr. Aldridge also stated he has performed the FVFG surgery on multiple cases of childhood cancer patients with good success. He is planning to address it with Kaiser. Without a doubt, Dr. Aldridge is doing everything he can for Johnathon. I think if Dr. Oakes agrees the Duke surgery is the best option, Kaiser might cover the cost. I understand why Kaiser would like us to go to UCLA first for another opinion�too bad Kaiser doesn�t cover the travel expenses. :-)

Yesterday, my aunt Joanne informed me we are flying out on Super bowl Sunday. It didn�t even cross my mind. I did ask Ned if Feb. 5th worked for the UCLA appointment and he said yes. When I got off the phone, I asked Ned if he knew we were flying on Super bowl Sunday. The expression said it all, he didn�t. He then said it doesn�t make any difference, we need to do this for Johnathon. We should be at our motel in time for the game. Johnathon thinks we should go to a sports bar�how old does he think he is??

Overall, we are making progress. It�s scary to be facing the unknown but I�d much rather face this unknown than many others we�ve experienced. It�s scary but it�s not life and death.

Please pray for Baby Donovan�s family. He passed away this weekend after a two-year battle with leukemia. He was only two years old. Life just isn�t fair and cancer SUCKS. Why do some kids survive and some don�t? Why do children have to face cancer at all? Where�s the CURE?????
http://www.caringbridge.org/in/babydonovan/

Wednesday, January 17, 2007

4 pm - John has an appointment at UCLA on Monday, Feb. 5th. We're going to California! Maybe we'll be able to thaw! :-)

Tuesday, January 16, 2007

11:00 am - Appeal denied. Kaiser will be faxing documentation later today. Basically they aren't convinced the Duke surgery is in the best option for Johnathon hips. They want us to go to UCLA and discuss less invasive options. One step at a time...

The snow finally just stopped. We are buried! I told John he couldn't go outside. I don't want him to fall down. Andrew comes in periodically to warm up. The news is stating it will freeze and possibly be worse tomorrow. It's like bumper cars as it is right now.

8:00 am - Duke called. Surgery is reschhedule for January 30th. Come on Kaiser...come through with a YES (this week please)!!!

7:00 am - Surgery is canceled. Kaiser did not call on Friday, which is what I expected. Hopefully Kaiser will call this week with the surgery approved and Duke will have an opening in the near future.

It is snowing and the schools are closed. The news expects it to snow all day with freezing temperatures. The boys are very excited. John got up and went back to bed. I wasn�t sure if he�d be able to go back to sleep after showing so much excitement. Andrew can�t wait to go outside to get wet and cold. I don�t understand it but I guess we all did that as kids. :-) The snow is beautiful.

Have a great day!

Friday, January 12, 2007

3:30 pm - I called Kaiser around 1:15 pm and Cathy had not heard anything. It's what I expected but I wanted to make sure before canceling the surgery. I called Melissa at Duke and she said she had totally forgotten and she wouldn't be canceling the surgery until Tuesday (Monday is a holiday). I don't see how it can happen unless Kaiser calls this afternoon. John has to quit taking Motrin and we have to get plane tickets. I will officially say it's a no go at 6 pm tonight; however, I am fairly confident at this time that it's not happening. Hopefully, Kaiser will eventually approve the surgery and we can reschedule the surgery in the near future with more time to prepare.

Thursday, January 11, 2007

2:00 pm - I just called Kaiser appeal board. The member relations� specialists have been very considerate and helpful. Today Leann said I need to speak with Cathy and she transferred my call. Cathy answered and said all the information has been forwarded to a MD for review. She said I sent a lot of information and they don�t know how long it will take a MD to review it all and provide a decision. She commented the 18th is very close and I agreed. I told her if I don�t hear anything by tomorrow, I would cancel the surgery. However, Johnathon fell down the stairs at school yesterday and hurt his left hip (he didn�t tell us, I noticed he was limping more. Apparently he lost his school elevator key and didn�t want to tell us. I am so afraid he will hurt the hip during the normal course of a day and we won�t be able to save his hips. John was adamant his hip was �fine�.). Cathy asked if I would like her to call me as soon as she hears a decision. I wonder if I wouldn�t have spoke to Cathy today if I would have received a notice in the mail and not a phone call. I still have not received the denial letter mailed on January 4th.

Please pray the doctor will have time to review Johnathon�s appeal today and approve the surgery.

John received his actual �W� letter yesterday. So COOL!!!!!!!!!

Tuesday, January 9, 2007

Day 512 Post Transplant�remember when day 100 was so significant!! Day FIVE HUNDRED, twelve�thank you, thank you, thank you!!!

Sorry for the lack of updating. Yesterday and today have been a bit frustrating.

Yesterday at 7 am I received a call from Melissa, the Duke pre-cert specialist. She said she was in meetings all day on Friday and she would be calling Kaiser after she spoke to me. I let her know it was 7 am and the referral board would not be in yet. She didn�t realize she was calling Oregon. She said she would call after her lunch.

Melissa called later that morning to let me know she didn�t have a good conversation with Kaiser. She asked if I would call Leann at Kaiser. Kaiser would not allow Melissa to send anything to them on John�s behalf. I asked her to fax me everything Kaiser should receive.

I called Leann and was informed because John is over 15 years old, he needs to sign a form authorizing me to act on his behalf. WHAT? I knew John could sign for all his procedures at Doernbecher�s but I still could sign and do whatever else was necessary. She said they need to know John wants this surgery and it�s HIPAA. I told her we wouldn�t do this unless John wanted it. However, I understand its HIPAA and asked if she would fax me the forms. She did and John signed them that night.

Leann also informed me I could not start the appeal process until I received the denial letter. I told her I was told John was denied by her office and I was suppose to receive a fax, which I did not. She said there wasn�t anything she could do. The letter was generated on Jan. 4th. I thought it was probably mailed on Friday and felt I should receive it in the afternoon�s mail.

The letter did not arrive. Last night I tossed and turned and this morning I decided I would proceed forward without the denial letter. At the very least, they would have everything when the letter finally did arrive. I faxed the authorization forms and Duke letters to Kaiser.

Melissa called and said if this isn�t resolved by Friday, the surgery is canceled. Fair enough.

The denial letter did not arrive today either. Nothing like watching for the mailman like a hawk! I called Leann. I told her the letter should have been here by now. We received the referral for UCLA to see Dr. Oakes in the mail; we should have received the denial letter. She was quiet then said they started the appeal process this morning with the fax even though they did not have the denial letter, something they do not do. I told her I would fax the letter as soon as I received it but I wasn�t convinced I would receive it. She was quiet again�she started a sentence with �if I fax it to you��and I finished it with �I will fax it back�. I catch-on relatively fast. She faxed it this evening and I have faxed it back. I also faxed it to Melissa at Duke.

I tried to do some research on Dr. Oakes at UCLA and didn�t find anything.

Not very much progress with the Duke surgery.

The BEST news is��are you ready to smile��maybe even giggle a bit��.John lettered in football!!!!!!!!! We didn�t realize it happened last night at the football banquet. The coach said some wonderful things about John like the impact John has made on his life. Very touching. The coaches gave John a certificate but we didn�t see a letter for a letterman�s jacket like the other players who lettered for the first time received. We heard John might letter and he was disappointed on the drive home he didn�t. It made sense. He didn�t play football. Yea, he went to the practices and games and he wanted to play more than anything else but he didn�t actually play. John was so torn up last night. He wants to play football so bad. I e-mailed the coach today asking if it�s possible John could letter. He replied saying John did letter, in fact the records showed John lettered last year. I cried. None of us knew that. Coach asked John to stop by after school today and he told him. John came home absolutely beaming. Come to find out John received a �letter of recognition�, which meant he lettered. None of us knew that. John is very excited to get a letter and eventually a letterman�s jacket. He isn�t sure he will wear the jacket until he plays on the field. I hope he decides to wear it without waiting. We just don�t know if playing again is realistic. However, the mind is a very powerful tool and who knows. I certainly don�t want to tell him what he can�t do.

We were very touched by all the kind words and hugs from everyone at the banquet last night. I miss the football days of watching all our kids play and parents cheering. They are some of my most cherished memories. We are blessed to be surrounded by so many caring, supportive families. I recall while John was in middle school looking forward the HS football days and it�s very difficult to not be a part of the experience. To watch your child doing what he loves is the most precious gift. We were lucky to have what we did. We are building new memories and thank god for that.

Thank you for all your prayers and support. We wouldn�t have our strength without it.

Thursday, January 4, 2007

Friday Update - Duke surgery has NOT been canceled. Ok, I know I have confused you...I will explain. I�m having a hard time keep up too.

I tried to cancel surgery last night but with the east coast time difference, it was too late. I called this morning and the assistant was not ready to cancel the appointment. She wanted me to fax her some information and she transferred my call to a �pre-cert� specialist. The �pre-cert� specialist did not answer her phone so I left a voicemail. I haven�t heard back from her yet.

My brother has been in contact with Dr. Aldridge (Duke doctor) and he�s not ready to give up yet either. He wants his office to see what they can do. On my fax, I gave them Kaiser�s referral board phone number.

Last night I decided to do some research on Dr. Lieberman at UCLA. To my surprise, I discovered he left UCLA for University of Connecticut in October 2006. He also appears to be a hip replacement specialist. We don�t want John�s hips to be replaced. I forwarded the University of Connecticut link to Dr. Turker (Kaiser orthopedic) to get his opinion. Do ya think Dr. Turker is wondering if he should identify my e-mail address as spam?

Please pray for clarity in what we need to do and for all to fall into place. I am trying to relax and allow life to take it�s own course but I also want to guide it in the correct direction.

Thursday - Duke surgery has been canceled.

Dr. Turker called today and made sure I understood how many people were interested in helping Johnathon. He said he was in surgery yesterday and received many calls about John. The chief orthopedic of Kaiser was involved and researching what they could do. The final outcome was John should see Dr. Lieberman at UCLA. He has been working with AVN for 8 or 9 years. Dr. Turker thought it would be a good idea to see what Dr. Lieberman had to say. I asked if records were being sent to Dr. Lieberman and then Dr. Lieberman�s office would call to schedule the procedure. Dr. Turker said no. We will go with John�s records to meet Dr. Lieberman personally and discuss what options there are. I think this is all reasonable. Dr. Turker said we have time to look at alternative options for John�s hips. Dr. Turker said Kaiser is preparing the referral for Dr. Lieberman and will be in touch soon. If we don�t hear from them by mid next week, I am to call Dr. Turker. In the meantime, my brother is finding out what he can about UCLA and I will research what I can on the internet. As Lance Armstrong said, �knowledge is power�. We have some time to gather more knowledge and who knows, John may end up at Duke yet. I think to get Kaiser to cover the Duke surgery, we need to get Dr. Lieberman�s recommendation. Looks like we are going to California. Sun�what�s that??

Wednesday, January 3, 2007

1:20 pm � Kaiser has denied coverage of Duke surgeries. The denial states patient to be redirected to southern California locations of UCLA or UCSD since they have a contractual agreement with Kaiser. I am shaking. It�s so hard to get your hopes up and then hit a roadblock. I have e-mailed Dr. Turker to see what else can be done.

1:00 pm - Still waiting for Kaiser. I made more calls yesterday and found out John�s primary physician (Dr. Wells) was on vacation last week. Her first day back was yesterday. I�m sure my voicemail messages and faxes took up a corner of her desk! Her assistant called yesterday afternoon and said Dr. Wells spoke to the referral board and it was ok for the Dr. Turker, Kaiser orthopedic, to write the referral. Dr. Wells had spoke to Dr. Turker and he agreed to do it. I wish we would have known that last week so he could have wrote the referral last week. I asked Kaiser customer service last week and they said it had to be the primary doctor. It was protocol even though John hasn�t been in Dr. Wells care for basically 2 � years.

I e-mailed with Dr Turker yesterday morning and he said he called Dr. Wells to let her know he approved of the surgeries (prior to phone conversation with Dr. Wells assistant). I don�t know where the referral is right now. Dr. Wells assistant told me that there is a possibility these surgeries won�t be approved and travel costs are not covered. I told her I am aware of that. I am praying, praying, praying that the referral board will approve the surgeries and quickly. Surgery is planned for next week. There�s a lot to get done. Limbo is hard; however, denial would be more difficult.

Dr. Turker did say that OHSU does this surgery. I spoke with my brother and since this surgery is so unique for the orthopedic doctor, he said OHSU might have two surgeons involved, one for the bone portion and the other to hook up the veins. Of course, OHSU doesn�t have near the experience that Duke does and Duke started this surgery. I would rather John have the surgeries at Duke. I want to give him the best possible outcome as possible.

John is very nervous about the surgeries and has asked we tell him only what he needs to know. This has been his MO all through his journeys. He will need to be quickly educated on recovery if the surgeries are approved. There�s quite a bit he needs to do to ensure everything goes as well as possible after the surgeries. He can�t attend school or drive for 6 weeks�.that�s the easy part�.Gads, I really to hear from Kaiser. I need to notify the school�.deep breath�.my �A� personality is not dealing with this calmly.

JANUARY 1, 2007!!!!

HAPPY NEW YEAR!!!!!!!!!!!!!

We wish everyone a very healthy 2007!!! We are praying ours will be!!

No additional news about Duke surgeries. I am getting more excited about it and praying Kaiser will decide to cover the cost. If anyone is interested in reading about the procedure, e-mail me and I will e-mail what we have received from them.

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