Dec 30 Update from Connie

I hope all of you had the very best of Holidays and are enjoying your time off.   I was lucky enough to spend Christmas with my family and it was wonderful!

I know I haven’t updated on what’s going on for quite a while and I apologize for that.  There is good news and bad news and just plain tedious news.

First the good news:

I finished my fourth round of chemo and am happy to say I’m still in remission.

My immune system was strong enough that I got to visit with some old friends and family and be out and about.

It isn’t definite yet, but it sounds like the transplant team may have found a donor.  The potential donor could not be contacted until after January 1^st, so I should find out soon.

I have dark peach fuzz hair and my eyebrows and eyelashes are back so I look a lot less like a GE light bulb now.

The bad news:

After my last chemo round, my blood counts all looked good and I had permission to go see friends, go shopping, etc., but I still had no appetite or energy.  Everybody, including me, thought it was because I had gone through four rounds of chemo and it would take more time to completely recover this time.  Unfortunately, after blood tests, it was discovered I was in acute renal (kidney) failure.  My kidneys were functioning at about 15% of normal.  They weren’t sure if it was the chemo or the drugs that caused it.  My opinion was, “You broke it, you fix it.”   I spent almost a week getting my kidney flushed with intravenous fluids; consulted a kidney specialist; and went on a high salt diet.  (High salt diet sounds weird to me too)  Anyway, I’m back down to almost the normal range and I’m hoping to improve more.  The kidney specialist said I may never get back to what I was before, but something in the normal range is what we’re shooting for.   

The I’ve had enough already, tedious news:  

I am typing this from the Seattle Cancer Care Alliance where I am having the fifth round of chemo pumped into my veins.  Blah!  Normally I would be in the hospital, but the insurance company would only pay for the experimental chemo if I was an outpatient.  I don’t know the reasoning, probably cost.  At first we (especially Ron) were a little nervous because I had some pretty serious side effects from the chemo before, but so far all is going well.  We are at SCCA for about seven hours a day getting two types of chemo, then home.  Tedious, tedious.  I have three days left after today. 

Unfortunately I will be back in home detention (no visitors) for a while and worse than that, I will lose my peach fuzz hair!

 

I want you all to know how much both Ron and I have appreciated your love and support.  I really don’t know how I could have gotten this far without you.  Please keep me in your prayers and well wishes because I still have a long way to go. 

And lastly but not least, I again have to thank the greatest people in the world; my Boeing coworkers.  I wish there were words enough to tell you how much we appreciated all the hard work you put into your bake sell and your generosity to Ron and I.  Thank you, thank you, thank you and God bless you all.

With love and gratitude,

Connie
 

A Short Note

I know it has been a very long time since I have written anything, but my biggest fear is I will bore you with my medical trials and tribulations.  I think about all of you constantly and, believe it or not, I would LOVE to be back at work complaining about Mondays, and parking, and vendor shortages……

 

NOVEMBER 4:  Back to the hospital for my first consolidation round of chemo.  I REALLY hated to go because I was just beginning to feel like myself again.  The chemo went smoothly and after five days and one day for the magic cells they let me go home on day seven! I had no immune system so we were VERY careful of any germs, but I still ended back at the hospital.  I started running fevers again after only two days home.  SOOOOOO disappointing.  They did cultures on every secretion that a body produces, and still couldn’t find the reason for the fevers.  Eventually the fevers lessened, I started producing my own white cells again so they sent me home with a cocktail of antiviral, antifungal, and antibacterial medicines.  Ron has become my UN…..Unregistered Nurse. He thinks he should get a business card that says: 

                                                     RON CHOSE, UN

                                                You get what you pay for.

Actually, I know I couldn’t get through this without his wonderful care……so I guess I’ll keep him.  J

DECEMBER 14:  I meet with my bone marrow transplant team.  They started searching the world registry after we found none of my siblings were a match.  I’m told it could take weeks to many months, but they want me to be ready as soon as one is found.  I am excited about this meeting because I have tons of questions. 

DECEMBER 26: After some negotiations, we had my next chemo moved from the week before Christmas to the day after!  Soooo, between now and the 26^th I get to enjoy the Holidays!   I am still weak, and bald, and sometimes chemo brain addled, but I can have company or meet up with people as long as no one is obviously ill.  AND I WOULD LOVE TO SEE YOU!  I feel like I have been in isolation way too long.  I’ll try not to be boring.

LASTLY:  To say Ron and I are grateful to my co-workers and friends is an understatement.  To all of you who cooked hot dogs and all of you who ate  hot dogs……THANK YOU.  Your generosity and kindness has touched us more than you’ll know and we will be forever grateful.  I believe there are Angels on this earth and I know they work at Boeing!    You are my greatest blessing.  Thank you again.

With Love and Gratitude,

Ron & Connie Chose

What's Been Happening

First, some really good news:  I am a Grandma!  Connor Nelson Chose was born on October 22, 2010; 6lbs 8oz; 20 inches long and I was lucky enough to be at the hospital when it all happened.  Magical!  He is, of course, the most beautiful baby in the world.

OLD NEWS     I was going to write:!!!!!!!!!!ZERO LEUKEMIA CELLS!!!!!!!!!!!!!! and start the celebration, but the very day I found out the test results and was supposed to go home, I started running fevers. Not just any fevers, but as high as 104.9.  This went on for days and completely wiped out the last bit of energy I had.  They put me in the Intensive Care Unit after my heart went into atrial fibrillation and had to be shocked back into normal rhythms. They put me on oxygen because I had water around my heart and lungs and I couldn’t get enough air without panting.  I was so weak at the end I couldn’t make it out of bed without assistance. Ron stayed 24 hours a day at the hospital because neither of us was sure I was going to make it.  I was a mess!  But thank goodness, things got better.  The fevers stopped and my wonderful Doctor said, “What this woman needs more than anything else is to go home.”  I could have kissed him!  I was still in terrible shape and Ron wasn’t quite sure how we would get from the car to the house but I would have gone if I had to crawl. 

THERE IS NO PLACE LIKE HOME     My first week home I slept at least 12 hours a night.  I think sleeping, uninterrupted in my own bed, was the best medicine.  After two weeks, I was done with the walker and the oxygen.  Yesterday I walked almost a half mile with our little dog Maggie.

THE LATEST   I received my second bone marrow biopsy results this Tuesday and I couldn’t be more delighted.  The Doctor said he could not give me any better news; not only are my bone marrow counts (white cells, red cells, platelets) almost completely normal, there are no leukemia cells! I am in remission!  This is a grand slam home run in my book!!

THE IMMEDIATE FUTURE    I have to check back into the hospital November 4^th and go through another full round of the trial chemo.  I REALLY don’t want to, but the Doctor reminded me the survivor rate is better for people who do back to back treatments.  I am determined to have a short stay and not get sick.  Hopefully, I will be out of the hospital in seven days or less.   Of course, it will take time to build up my immune system, but I hope to be spoiling my Grandson by Christmas.

THE UNDETERMINED FUTURE   I need a bone marrow transplant and unfortunately two of my four siblings are not a match.  We are waiting for the results of the last two and then, if they do not match, they will search the world wide registry.  I will have more chemo and maybe radiation to face then, but hopefully, also be cured.

I am sorry I’m so slow getting this out.  At first, I was too sick and lately, busy with recovering and being Grandma.   I think about all of you every day and how lucky I am to have you in my life.  Thank you for all your thoughts and prayers.  I feel like I am proof of the power of prayer and am very grateful.  I am living with a new perspective on life and wake up every morning happy and excited for another day.  Take care and please keep me in your prayers.

With love and gratitude,

Connie

Home Sweet Home

Connie was released from UWMC about 8:00pm Friday October 8th and headed home with her husband. They were both excited and nervous to be leaving the hospital after 2 months & 5 days. Connie was very weak as she walked from the car to her front door with her walker but the joy on her face as she entered her front door is something I will never forget. She just sat for a little looking around her house and was so thankful that she made it back home. She is still on oxygen at night but slept last night in her own bed in her own home. She said it is the first time she has felt safe and at peace for a long time.

Connie’s journey is not over, she still has a long way to go, but for now life is good.

Connie and Ron had to return to the lab at SCCA at 10:00 Saturday morning. All went smooth and she was in and out in a very short period of time. Her counts are up and she did not have to receive any transfusions that the doctors said maybe necessary. She returns to the lab again on Monday and Wednesday. On Wednesday she also has a doctor appointment. She will find out then when her next bone marrow biopsy is, possibly on Friday (as an outpatient) and if they find no Leukemic cells, she will be ‘in remission’.

Being home is the best medicine. The change I saw in Connie from Friday night to Saturday was amazing. She has regained her determination and feistiness to beat this illness. She is beginning to eat more, has read some on her kindle and even watched some TV. A big difference from being in the ICU only 6 days ago.

Connie continues to say “I could never repay everyone for their kindness and all the things people have done for me if I worked at it for the rest of my life”. She is so appreciative. She still intends to send out ‘Thank You Note’s’ when she is stronger, even though we tell her it is not necessary and everyone is just glad she is working to get better.

So on Connie’s behalf, until you hear directly from her again, thank you, thank you, thank you for your prayers and get well wishes.

Zero, Zero, Zero!!!

Well the doctor came in and gave us the good news. Connie has zero leukemic cells, but she also has zero other cells. This is exactly the results the doctors wanted to see today.

So what does this mean. Well in a couple weeks or so they will do another biopsy to see if any leukemic cells have come back. We did not talk about the next course of treatment because it depends on what they find with the next biopsy.

The doctor gave Connie some strict orders, focus on the good news and take each day as it comes. As she put it, "be in the now".

Connie will still be in the hospital for the next couple weeks until her counts come back up. Her jobs is to get up, do laps around the floor, eat well, do her breathing exercises, and stay "healthy", no fevers, etc.

We will keep you posted, but today Connie received the best news that could have been received.

She gave a big WOO HOO!!! when she heard the news.

Thank you for all the good thoughts and prayers, somebody must have been listening. :-)

The Latest Hurdle

I wanted to give you all an update on how Connie is doing.

It has been a rough week for Connie, as many of you know she was within a half hour of being release from the hospital on Sat. 9/25 but started running a fever. She ran a temperature from Sat. until Thursday anywhere from 100 to 104. On Thursday it seemed the worst was over as she stopped running such a high fever and was pretty much back in the normal range.

On Thursday around 10am, Connie developed an irregular/elevated heart beat, this in turn caused her blood pressure to drop. The doctors decided it would be best to move her to ICU to more closely monitor her. After a couple different types of treatment, the doctors were able to get the heartbeat under control and her blood pressure back up. These symptoms are all a result of the chemo she had been receiving. Unfortunately though, this has happened a few times now since Thursday, which means that Connie remains in the ICU at UWMC.

Connie had me take this photo so you could see the many different IV's they had her on. As we like to call it Fred (the name that her IV pole was given) and her many cocktails. Connie is a braver woman than I, I know the last thing I would request is to have my picture taken.

We are hoping that the bone marrow results will be back on Monday from the biopsy they did on Friday (there is a chance that we may not hear anything until Tuesday though). Once we know something we will pass this information on.

As you can imagine it has been a tough week for Connie and her family, please keep them in your thoughts and prayers.

The Latest

It's been a little bit since the last post so I thought I would let you know what the latest is.

Connie was all set to go home on Sat. discharge papers in hand and was ready to walk out of there and head home. They took her temperature one last time and she was running a 100.7 fever. :-(  The doctor came in and said with with fever there would be no going home. Later that night she spiked a temp of around 103 and continued to run a high fever yesterday along with being sick to her stomach.

Today she was doing a bit better and her temp and gone down to around 101, but she is exhausted and has been sleeping as much as possible (when you are sick and in the hospital they don't let you get a lot of sleep like you would if you were home, they are in all throughout the day and night taking your temperature and pushing a variety of meds, so not a lot of rest to be had.)

With her running such a high temp and being sick the doctors have pushed back her being able to go home for at least a couple of weeks. As you can imagine Connie was devastated by this news.

Please keep Connie and Ron in your thoughts and prayers.

Chemo, Round 3, Done.

There have had a few inquiries asking how Connie is doing. I know we have not posted anything since Connie was moved to the U of W Medical Center and accepted in the clinical trial through the Seattle Cancer Care Alliance.

Connie is doing ok; she received her last Chemo treatment today for this round. There were a few side effects along the way, but nothing that was considered a complication. She is scheduled to receive her “magic cells” tomorrow and if that goes smooth, they will let her go home for a few days. Of course this is what we are hoping for, some time home with her husband, her sons and her little dog. Just getting a little of ‘normal’ back into her life.

This week Connie’s son from Texas and her brother from Utah were in town and I know seeing them meant a lot to Connie.

Connie is scheduled for a ‘bone marrow biopsy’ around October 3rd or 4th, this will tell the doctors what level her Leukemic cells are at. We are hoping she will have gotten to the “zero” that will put her in remission.

Please know that as much as Connie would like to see friends and family if she goes home, they are essentially sending her home with no immune system, so visits will be even more limited than they are now.

Again Connie and her family thank you for everything everyone has done for them these past 7 weeks, you are all a blessing to her.

She's In!!!

It has been a long couple days waiting to find out if Connie would be allowed into the clinical trial due to the fungal infection that she has in her lungs. Dr Estey "The Goodfather" as they call him went to bat for Connie and she was approved today for the clinical trial and will start chemo tomorrow.

Connie was very happy when she got the news and is anxious to get started, they have had a very good success rate with this clinical trial, so we are hopeful that this will do the trick and get her to ZERO.

Car Wash Rescheduled to Oct 3rd

The Car Wash had to be re-scheduled due to a work conflict with Connie's Boeing family. Please note it will now be on October 3rd at the Mill Creek Les Schwab.

Seattle Cancer Care Alliance - A New Beginning

Yesterday was Connie's first full day at UW Medical Center (all inpatient treatment for the Cancer Care Alliance happens at UW). We had the chance to meet with a couple different doctors that discussed their recommendations for Connie's treatment. Here is what we know at this point.

They would like to start Connie on a clinical trial they call GCLAC. It is two different types of chemo drugs (Cytarabine and Clofarabine) which would be followed by what they call "magic cells" (I'll explain more about those later). At this point they are not sure when they will start the chemo. Connie has been running fevers at night which they think may be a result of a fungal infection she has in her lungs. This is very common in patients that have received chemo. One more test will be run today (a broncoscopy) to try to narrow down the specific fungus. If they were to start the chemo and not figure out what was going on with the lungs it could make the lung situation worse, which would not be good, so we wait.

Once they are able to start the chemo she will have 5 days of chemo for an hour or two a day, and then on day 6 she will get the "magic cells" and potentially, if everything goes well, there is a chance that Connie may be able to go home 7 to 8 days after treatment starts. It will be key that she does not run a fever and has no complications during treatment. So keep your fingers crossed, and say your prayers that everything goes well and she can go home for a few days. Once again as it was the last time, day 14 will be the big day. On or around day 14 she will get a bone marrow biopsy and we will find out what her counts are at. Of course zero leukemic cells is the goal.

With the latest move down to SCCA and the other two treatments not being successful it is looking like she will be needing a bone marrow transplant once they get her into remission. Her siblings will be tested and if there is no match there, then they will look at the bone marrow donor registry for a match. At this point there is no need for others to get tested, but if there is we will certainly let you know.

So now onto the "magic cells". When we were told she would be getting "magic cells" we thought, ok, what are these magic cell things? As it was explained to me. We have something called hematopaietic stem cells (HSC) and all of the blood cells in our body stem from these. They go through a variety of phases but then eventually end up as white blood cells, red blood cells, and platelets. By using cord blood they were able to reproduce what they call short term repopulating cells (STRC), this is the stage before the cells turn into white, red, platelets, etc. What the "magic cells" do is help bone marrow recover faster and blood cells to produce faster. I attached a diagram that the doctor drew for us so you can get an idea of the progression of a stem cell.

We are currently waiting for the doctor to come in today to see what his thoughts are on the lung infection and when we think she may be starting chemo. Once we know more you will know.

If you would like to send anything to Connie please send it to the house and Ron will bring it down to her. If you need their address please drop me an e-mail and I can send it to you. Since we don't know at this point how long she will be in the hospital we don't want things to get sent her and not receive them. As for visitors, at this point she is pretty wiped out, and we don't what to risk her catching anything, so visitors are still very limited. If and when this changes we will let you know.

I know Connie and Ron thank you for all your love and support, please continue to keep them in your prayers.

Car Wash Fundraiser for Connie

Connie's Boeing family has organized a Car Wash for Connie Chose . I am sure everyone will need their car washed and will make a donation.

It will be on September 19th at Les Schwab at 13223 Bothell - Everett Highway, Mill Creek

Thank you so much from Connie and her family, you are amazing friends!

Day 43

Just a quick update to let you all know that Connie is being moved to UW Medical Center today to start/continue her treatment through the Seattle Cancer Care Alliance.

We don't know too much about her treatment at this point but as soon as we do we will let you know.

Stacie

Day 41

I am so sorry I have not sent anything out sooner. I know you thoughts, and prayers, and good wishes have all been for me to have my zero count and I wished I could have sent this earlier, but the stuffing got knocked out of me.

A little history: When my first induction chemo was finished, I went down from 40% leukemia cells to 20%. It wasn't the numbers we wanted, so that very night we started a second induction of chemo; I saw it as a maddening fourteen day delay. At that time, we asked the doctor what were the chances of seeing zero after the second induction. Doctors hate to give percentages, but finally he relented and said about 80% of the patients achieve zero and most of the other 20% fall between 4% and 1%. (which they say is usually good enough to say you have achieved remission and will clean up in the consolidation phase) OK, with odds like that, you'd play in Vegas all night long.

Never being able to leave well enough alone, I asked what if my count is cut in half again, like last time, and it is 10%? "10%", he said, "would be very, very, bad."

My number was 20. No reduction at all.

When he learned the news, of course, we were devastated. We wanted to know the next step......and, at this point, they don't really know. The doctors here work very closely with the Seattle Cancer Care Alliance and they are turning my care over to them.

Good News: I may be able to go hoe as early as Thursday. They are giving me medicine in the fatty tissues of my stomach that is supposed to stimulate my bone marrow to produce good white cells. It also makes your bones ache like mad, but I don't care. If I can get my white blood count to 1; I CAN GO HOME!!! :-)

I just want a small piece of normal back. Right now I'm running on empty, but give me some time at home, and I will be ready to lead the charge.

I don't want you to think this has damaged my faith......IT HAS NOT. God and I had different ideas. I feel He is very close to me now, nudging me up. My new prayer: Please let Your will me done and grant me the strength and wisdom to keep up.

I want to thank everyone who has been so generous to Ron and me. When I get a little more strength back, I hope to send out thank you notes, but right now, I'm too weak so please forgive me. You all are such a wonderful blessing to have in my life, I'm not sure I could have made it this far without you. Thank you.

With Love and Gratitude,

Connie

The Fight Continues

Well I know most of you have been waiting anxiously, like us, to find out the results to Connie's bone marrow biopsy. Well unfortunately it was not the results that we wanted. The biopsy showed that 20% of Connie's remaining cells (which are very few at this point due to the two round of chemo) are still leukemic.

So what does this mean. Well it means the fight continues, but it will probably continue at Seattle Cancer Care Alliance. The first step is to get her white blood cell count back up so she can go home from the hospital for a little while. As you can imagine having your world confined to the 7th floor of a hospital can get very old very fast. So physically and mentally they need to give her a break from the treatment and let her go home. It is going to take at least a week or two to get her counts back up so she can go home, then she may only be home for a few days before heading down to the Cancer Care Alliance, but really anytime at home is good at this point. Although Connie was very disappointed when she heard the numbers were not down, just hearing that she is able to go home for a little bit was a big relief to her.

At this point we do not know what the next treatment will be, but I imagine we will be finding out in the the next couple weeks. As you can imagine Connie and all of us are very disappointed with the news. But as I said the fight continues and I know she is going to beat this thing, it is just going to take a bit longer than we wanted.

Please keep Connie, Ron, Steven and David in your thoughts and prayers.

Stacie

One Month

Yikes! If someone would have told me one month ago I would be in a hospital, I would have said, "YOU'RE CRAZY!" :-) I think it's a good thing I'm so tired otherwise I'd be climbing the walls; planning an escape; tying bed sheets together.

I'm proud to say I have not started watching daytime television......but I could be only weeks away from Jerry Springer or Judge something or other. It would be sad to beat leukemia only to lose my brain, so I'm fighting it.

I am essentially bald now. Ron calls be Peach Head. He has big heartedly offered to wax my noggin, but I declined his generous offer. The only hair that continues to hang on is anything you might pay to have waxed. My legs are very European.

I am reading like crazy; my Bible; my Kindle (which I love, love, love!), good magazines and trashy (Will Jennifer Aniston really steal Brad back??). I'm doing everything the Doctors tell me, rinsing my mouth, walking the halls (with a mask), eating well (OK it is hospital food, but not too bad) and trying to keep my spirts up.

Zero leukemia cells are still the first goal and I think everyone who has included me in their prayers and well wishes. I can feel your support and love from here. I miss and cherish all of you, and someday, when I'm back to my old, mundane, ordinary life, I hope I can repay a small part of your kindness.

With love and so much gratitude,

Connie

Day 28

I have finished my second induction chemotherapy tonight and I couldn't be happier! No more Fred! (That's what my sister named the IV pole I was dragging around everywhere I went for seven days). It may seem like a small thing, but I feel so free and no more toxins are being pumped into my body. Take that Ms. XXXX.

The doctors have told me they are amazed how well I'm tolerating the treatments. I'm bald, I'm tired, but I don't feel sick. I'm sure it's all your prayers and well wishes that are keeping me buoyed up. THANK YOU!

I understand many of you have given blood. I want you to know you are literally saving lives. I personally could not survive this without transfusions from very good people just like you. I was trimming my fingernails the other morning and the nurses came in and asked me to put the nail clipper down and please stay in bed. I guess the lab called and my platelet count was seven. Normal is 150-400. You platelets are what help clot your blood. Anyway, I received a platelet transfusion that morning and I have also had two transfusions of red blood cells. So thank you, thank you, thank you from the bottom of my heart.

Seven more days for the chemo to finish knocking out the leukemia cells and I will have my next bone marrow biopsy. I'm not sure if that will be Tuesday or Wednesday, but I should have the results no later than Thursday September 9th. I am confident this time it will be ZERO......but please keep me in your prayers. if everything goes as it is supposed to, and it will, I will have two or three more weeks at the hospital while my body builds up my immune system and then it's HOME!!! Dorothy was right, "There is no place like home."

There are no words that can express the joy and gratitude I feel knowing I have such wonderful people pulling and praying for me. You are my strength and my greatest blessing.

With Love,

Connie

Join Team Connie at Light the Night Walk Sept 25th

I know many of us are looking for things we can do and ways we can help Connie. The cards, pictures, food, and prayers are wonderfull and important and I know Connie and Ron have really appreciated it, but there is another way we can help, not just Connie but others suffering with various type of Leukemia and Lymphoma.

There is an event coming up put on by the Leukemia & Lymphoma Society on September 25th at Green Lake at 7pm that I will be volunteering and participating in called Light the Night, and I have organized a team appropriately named Team Connie (I would love it if it was the largest team that the Seattle chapter has ever seen). Please join me on Team Connie and register at http://pages.lightthenight.org/wa/SeattleL10/teamconnie. If you are not able to participate but still want to do something you can donate to the team to help reach our fundraising goal.

Below is a bit more information about the event. You can also check out the Leukemia & Lymphoma Society page to see what great work they are doing at http://www.leukemia-lymphoma.org/hm_lls.

Light The Night Walk: Taking Steps To Cure Cancer™
Each year, in communities all across the United States and Canada teams of families, friends, co-workers and local and national corporations come together to raise funds for The Leukemia & Lymphoma Society's (LLS's) Light The Night Walk events and bring help and hope to people battling blood cancers.

Every Light The Night walker is encouraged to become a Champion For Cures by raising $100 or more to help fight blood cancer.

Funds raised by teams and individual walkers provide:

• Lifesaving blood cancer research
• Free educational materials and events for patients and their families
• Local programs such as Family Support Groups and First Connection, a peer-to-peer counseling program
• Comprehensive, personalized assistance through our Information Resource Center

Light The Night Walk events are evenings filled with inspiration. During this leisurely walk, walkers carry illuminated balloons - white for survivors, red for supporters and gold in memory of loved ones lost to cancer - thousands of walkers - men, women and children - form a community of caring, bringing light to the dark world of cancer.

Quick facts about Walk night:

• Illuminated balloons, Light the Night T-shirts and a wrist band entitling walkers to enjoy food and refreshments are provided to all walkers who become a Champion For Cures by raising $100 or more to help fight blood cancer.
• The Walk is done at a leisurely pace and take less than an hour to complete.
• Strollers and wheelchairs are welcome. However, for everyone's safety, bicycles, inline skates, wheelie footwear, skateboards and scooters are not allowed.
• Walks take place rain or shine.
• Pets? Please check with the nearest chapter about bring pets.

Why Walk?
It's inspirational.

You'll be helping hundreds of thousands of Americans battling leukemia, lymphoma and myeloma.

It's a chance to do something good in your community.

Funds raised offer real help including:

• Support for leading researchers around the world who are working to cure blood cancers
• Valuable information for blood cancer patients and families
• Assistance programs for patients and their families
• Education on the latest medical advances for healthcare professionals
• Advocacy efforts that draw government attention to cancer-related issues

It's fun.

The Walk culminates in a community celebration with music, entertainment and camaraderie where friends, family and co-workers walk to celebrate their fundraising success and demonstrate their support in the fight against cancer.

What is a Champion For Cures?

We all know people battling cancer - men, women and children. And we can all do something about it.

Every Light The Night walker is encouraged to become a Champion For Cures by raising $100 or more to help people fighting cancer live better, longer lives. A Champion For Cures will receive night-of-walk benefits* including a:

• Light The Night t-shirt
• Light The Night illuminated balloon
• Wristband which entitles the walker to food and refreshments

How to become a Champion For Cures

Raising $100 is easy! Send your online fundraising webpage to 20 or more people and ask each person for a donation of $10 or more. Even if only half of the people donate $10 or more, you will have raised $100 and most likely more.
*All patients and survivors will receive these items regardless of their fundraising levels.

How $100 Can Help Patients With Cancer

• "You have cancer." Those three words change everything. In communities across the country, LLS support groups provide patients and their families with a place to listen, learn and share with others in the same situation.
• Cancer can be overwhelming. But help is just a phone call away. LLS information resource specialists help educate and empower patients with individualized disease information and treatment options.
• In 2009 alone, LLS researchers were conducting more than 100 clinical trials, a critical step in the development of new treatments and cures that will help patients live better, longer lives.

Walkers who have raised less than $100 are welcome to attend and walk, but the night-of-walk benefits listed above are reserved for those who are a Champion For Cures.

Thank you and I hope to see you on Sept 25th!

Stacie

Round Two, The Final Knockout!!!

Sorry I haven't written sooner because I know you were all rooting for zero leukemia cells on day 14......unfortunately, that didn't happen. 20% of the few white cells I have left are still Ms. XXXX. I don't like her! I was going to allow myself on boohoo day and it kinda stretched into two, but like a grandmother friend of mine said to get grandchildren once, "You get what you get and you don't throw a fit." Anyway, I'm ready for round two and I think I got her on the ropes and this will be the knock out punch!

What's happening now: I start all over at the beginning of chemotherapy again. It won't be as strong of dose of chemo because we don't want to cure the leukemia only to have heart problems later. When they told me Tuesday I wasn't zero, I told them let's not wait another minute, let's start again right now. I have one more dose left of double chemo and four more days of single chemo, then another seven day waiting period, then another bone marrow biopsy. So, my dear friends, once again I'm asking for your prayer and well wishes. The hope remains the same; zero leukemia cells on day fourteen.

On a happier note, I have lost five pounds on my high calorie, high protein diet! it seems I'm eating all the time (I was actually afraid I would gain weight) but the scale says differently. YEAH!!!

I still love the buzz! However, my hair continues to fall out and I don't know if it's because I have been rubbing the top of my head too much, but I'm kinda getting that horseshoe bald kind of look. NOT the look I was going for! One nice thing though, Ron says I'm the best looking horseshoe bald gal he's ever seen. Now you know why I love this man.

My skin hasn't looked this clear and nice for a long, long time. I'm on intravenous and oral antibiotics and I'm pretty sure that's what is doing the trick. However, I cannot recommend leukemia therapy for skin improvement.

I'm sorry to say, because the chemo is working, it's making my immune system very, very weak. They want to limit my visitors to immediate family only. So, to keep me healthy, I have to miss my cherished visits with my dear friends. I hope you'll understand.

Words cannot express the gratitude Ron and I feel for all the love and support we have received from our family and friends. You are and always will be our very best blessing.

With Love and Gratitude,

God Bless You,

Connie

Biopsy Results

Connie received the results of her bone marrow biopsy this afternoon.

She had hoped they would find zero leukemic cells in her bone marrow and she would be in remission; unfortunately that was not the result.

When Connie was admitted to the hospital her bone marrow contained 40% leukemic cells, after one round of chemo she now has 20% leukemic cells. She will remain in the hospital and the doctors will start her on another round of chemo. The doctors said this happens in about 50% of patients. She will receive seven days of chemo then at day 14 (sometime around Sept. 7th) they will do another bone marrow biopsy in hopes the leukemic cells will be gone.

Of course this was very disappointing news to Connie and her family. Connie will need a little time to mentally adjust and prepare for the next round.

Because Connie’s immune system is already pretty much non-existent and the continuing chemo will only weaken it further, visitors are now limited to immediate family only.

Please continue to keep Connie in your prayers. She very much enjoys the cards and pictures, and there is still room on her walls.

As Connie says often, she is so blessed to have so many wonderful friends and family.

Day 20

I've now been in the hospital 20 days, I must say it seems longer. I'm sorry I haven't sent out more information, but Thursday I hit the proverbial wall. I was completely, totally, exhausted. To go from my bed to the bathroom was about all I could muster. As it turned out, my oxygen carrying red blood cells were low. As the chemo is destroying the cancer cells in my bone marrow it also destroys all the good blood cells too. I received two bags (pints?) of just red blood cells Thursday night and I could literally feel the difference within hours! My cousin said she could see my cheeks gain color. By Friday I was a new woman!

The chemo has hit the hair. I didn't realize I had so much hair until it was literally everywhere. I'd wake up in the morning with hair stuck to my face and coughing like a cat with a hairball trying to get the hair out of my mouth. I felt like a giant shedding dog with long hair. So, I called my Sis and we had the Room 707 Hair Recovery Party on Saturday. I am very pleased. I like the way it feels; like petting a puppy.

As it turns out, I am not alone with my buzz cut. My niece Kimberly, who has the biggest heart in the world, surprised me at my party by walking in with a "solidarity buzz cut" of her own. She has such a sweet, tender heart. I love her to pieces! And she was not the only one, Ron got buzzed and my brother-in-law Craig got the new do too. I am so grateful for the love and support I have received. I will spend the rest of my life trying to pay back a mere fraction.

Today is a big day for me. I am having my second bone marrow biopsy. This is when we want ZERO leukemia cells. I won't say I'm not nervous because I am, but knowing I have your prayers and well wishes on my side gives me tremendous comfort.

Thank you again for all your well wishes and prayers. You are my greatest blessing.

With Love and Gratitude
Connie

The Recovery Haircut Party!

Pour the champagne, and let the party begin.

Kathy having fun.

My new do!

My niece Kimberly gets the buzz too! What a BIG HEART!

Ron joins in. Not too much to cut. ;)

The Buzzed. I love my family!

The Waiting Game

I am now officially finished with round one! Seven days of 24 hour chemo drip ended Saturday evening. I am finished witht eh IV pole and I feel free! Now is the beginning of the waiting game.

I have learned a couple things about chemo I thought might be interesting. THE STUFF IS TOXIC! The nurses have to suit up and put on special protective gear before they can even handle the injectors. They ahve a toxic spill team dressed in space suits that would be called immediately if even the smallest amount is spilled. It's called a code orange. make me feel kinda funny getting the stuff pumped right into my veins.

How it works: chemo destroys rapidly dividing cells. Cancer cells are rapidly dividing, but so are blood cells, hair cells, inside lining of your mouth cells, etc. That is why there are so many bald chemo babes with mouth soares out there. Actually so far, (can you see me knocking on wood?) I haven't developed the mouth sores. I am gargling up a storm with saline (salt water) and that is supposed to be one of the best defenses. I have quit flossing my teeth (is this too much information) because my platelets are so low, if there was any bleeding, it could be different to stop. I'm winded and tired because I have so few red blood cells left to carry oxygen to my body, but transfusions will help me with that. Good grief, I sound like a mess!!! It was hardly a month ago Ron and I went hiking seven miles...ahh the good ol' days.

A word about blood donations; someone gave so I might live. If you're hanging around with not much going on, it would be wonderful to give to the blood bank. You can do it in my name if you like or not, but if you can, pleae go see the nice nurses at the blood bank and enjoy a cookie and orange juice on me. :-)

Some good news: because I ahve the rare XXXX split chromosomes, they don't know much about them. Tests were ordered to see if I had the highly mutating, long protien strand type that is very agressive and is difficult to treat or if I had the short, less agressive type. (I can feel bio-chemists everywhere cringing at my explanations). Anyway, HALLELUJAH, I have the short stubbies!!! the Doctor said he couldn't have been more pelased with the results! Treatment stays on track...beat me down and then build me up; double zero on day 14; only good white cells on day 28; go home!

More good news: I have the most fantastic friends and family anyone could ever hope for. Ron and I are blessed beyond words and will always be grateful to each and every one of your for your kind wishes and prayers.

God bless you.
Connie

What I'm Learning

I'm sorry I'm so slow to get back to everyone, but believe me you're always in my thoughts.

I thought I would try to explain some of the things I have learned about Acute Myelogenous Leukemia (AML). This is how I've been told it starts: one white blood cell decides it's not happy with its chromosomes. Do these chromosomes make my butt look big, kind of thing. Anyway, it decides to change. My understanding is it doubles one of the markers on the chromosome strand and then just goes to town making just like it. Sometimes it multiplies slow, Chronic leukemia (the preferable type) or rapidly, Acute leukemia. I have the acute type. Some good news: they say they caught it early; only 40% of my white cells are cancerous. I know, that sounds like a lot to me too, but I guess most people come in about 80% and very sick. That is certainly one thing I can be grateful for; I feel fine.

Chemo therapy has already started and they are hitting it hard. I had to have my heart tested to see if I was strong enough for the strongest treatment because it's usually used on younger patients, but it's the one they have the most success with. I passed the test and have been on continuous chemo drip since. I finish this Saturday night. Then it's the waiting game. What we're hoping and praying for is 0 white cells and 0 leukemia cells on day 14, which is August 21st. That would be my first thumbs up! If that happens, then on day 28, I think that's September 4th, we're hoping the bone marrow shows only the good white cells are coming back. That would be two thumbs up and I get to go home!!! I would then come back to the hospital for six days every month for four months for a broader range of chemo to make sure they get everything. So my dear friends, the wishes and prayers I'm asking for is double zeros on day 14. OK, a complete recovery would also be good to throw in there for the long run.

With AML there are four chromosomal changes they are used to seeing. One they are very successful with and then, on a sliding scale, the other three. I found out yesterday I don't have any of those four. I have a very rare form of this disease. In my case the chromosomes that made me a female at birth, XX, have doubled and my leukemia cells are XXXX. I would call them super woman cells, but I don't want to give them any more power than they already have so I am calling them super sissy cells and I'm ready to kick their cancerous butts. The treatment I have been started on is going to remain the same. They have sent my results out to all the biggest cancer centers around the world for more information, and are running more tests to give us the most information possible. I should be getting more news starting next week. In the meantime, because they know so little about my XXXX type, I'm saying this is the very best type to have. I'm going to be the recovery story all leukemia patients are going to want to hear about. I picture them saying as they are waiting for their test results, "I sure hope I get that XXXX type of leukemia. I hear it's the easiest to have a full recovery from."

I want everyone to know I feel a little more tired every day, but I do not feel sick. My hair is actually looking good. (I think it heard I was ready to shave). However, first really bad hair day, I am having a hair cutting party. I told the nurses champagne will be served (I'll have sparkling cider) and because hair loss is a sign the chemo is working these will be a Recovery Haircut Party in room 707. (I think 707 is where they put old Boeing people) Can you imagine ladies getting up and swiping a washcloth across your head and calling it good to go? Marvelous!

I want you all to know Ron and I are grateful from the bottom of our hearts for all your love and support. I count you as my most wonderful blessing.

Connie and Her Chromosomes

Back on August 5th when they drew many, many tubes of blood from Connie, we were told some tests would be sent to the U of W and would take some time to get back. Because we knew the single most important prognostic factor in AML is cytogenetics, or the chromosomal structure of the leukemic cell, we have been ‘patiently’ waiting to get the results on this test. Well – we sort of got some news today, not bad news and not good news. Apparently Connie’s results came back with something ‘rare’ or something that did not match the pattern they normally see. I could try to get into more Chromosomal information but it would not mean much to you as it did not to any of us either. Bottom line is they are running more tests and they will ‘hopefully’ have more information for us in another week. Her treatment stays the same and she is tolerating, very large doses of Chemo amazingly well. We are still looking for a zero blood count (of all Leukemic cells, and unfortunately the good cells also) around August 21st. This remains the goal.

Words cannot express how grateful and blessed I feel to have such wonderful friends & family. Your generous outpouring of love, prayers and well wishes have touched me more than I can express. THANK YOU! BLESS YOU! I LOVE YOU!

I thought you might be interested in the events that led up to my stay in the hospital and my diagnosis of Acute Myelogenous Leukemia (AML). Well, here's my story and I hope I'm not putting in too much information.

Friday 7/31: I went to work, but I had mild lower stomach cramps, but hey, it's Friday and I had a party with dear friends that night, right? And you don't let mild stomach cramps keep you from a party with old pals! (If it's a Monday and only work.......well that's a different story) Anyway, I had a wonderful time sitting in the sun, relaxing and kibitzing with my friends. That night at home however, I started to run a fever with chills; teeth chattering; and the shakes. So, I wrapped myself in a warm blanket and called it a day.

Saturday 8/1: Woke up in the morning feeling pretty good but kind of tired. I found our old mercury filled thermometer and cleaned it up really well because the last time it was used could have been when the kids were babies, if you get my drift. Anyway, I was surprised to find I still had a temperature. It was only a 100 degrees but other than that I felt fine. I saw it as a good excuse to lounge on the couch and watch a few old movies without feeling guilty.

Sunday 8/2: Still running this annoying temperature of 100 degrees, but feeling fine so I'm thinking this thermometer must not be working right. Sooooo, I cleaned it up really well again and forced Ron to take his temperature. He's 98.2 so, dang, I got some kind of weird bug. I tell Ron if I have the temperature when I go to bed tonight, I'm not setting the alarm and I'll call the Doctor.

Monday 8/3: Same ANNOYING, temperature of 100 degrees! Geesh, give a girl a break already! The weirdest thing is nothing else is bothering me. I just feel kinda tired. I called my Doc, but he doesn't work on Mondays so I went to his backup. He listen to my symptoms, took a blood and urine sample and prescribes an antibiotic for me with these instructions: If I feel worse, call him back right away, if I don't feel great by Thursday come back and if he finds anything unusual in my blood samples, he'll call me.

We fill the prescription and I take the first pill and six hours later the fever is gone........end of story I think. I took my temperature that night before bed and everything was normal......yeah! I set my alarm and go to bed.

Tuesday 8/4: 3:30 am rolls around, the alarm goes off and I feel exhausted. Then I ask myself (cause I'm the only one in our household up at this hour) are you really exhausted or is it just 3:30 in the darn morning and anyone not crazy would feel exhausted. I figure it's the later and go to work.

I get a phone call from the Doctors office at work and they want me to come in for more tests right away if possible. That's odd, I think, cause it seems the pills are working, but I do as I am asked and go give more blood samples. I'm told they will call me with the results. Hmmmmmm, OK.........I wonder if I should be concerned or is this new Doctor an over reactor type. I chose to believe the later and Ron, Maggie and I have a picnic at the park. I ask Ron, because we have such a busy week this week, why don't we go to the Mall and pick up our baby shower gift for our grandchild to be. He agrees and it's at the Mall I get the call from the Doctor's office to go to Providence Hospital Colby Campus. "Really, for more tests?" "No", I'm told,"to be admitted." "What should I tell them I there for?" They tell me, "You have a low white cell count and all the paperwork is done so just go to the admittance desk." Well this really does get my attention!

It seems unreal I'm in the Mall one minute and the hospital the next, but that's the beginning of how this all got started. I know I owe so many people emails, sincere THANK YOUS, and much, much more. Please forgive me for being slow to respond but I have been on such a roller coaster of emotions, and so busy with test after test and pokes and prods and Doctors and nurses I hardly can think straight. I MUST thank Linda for getting the information out for me and her daughter Stacy for getting me online. I love you two and will always be grateful.

Monday 8/9: It's almost midnight, so I'm ending this now, and will try to continue tomorrow. Again, I want to thank all of you for all your goodness and kindness. Please keep Ron and I in your prayers.

Information About Acute Myeloid Leukemia

For more information on Acute Myeloid Luekemia you can check out this information that I found on the Luekemia Lymphoma Society website. http://www.leukemia-lymphoma.org/attachments/National/br_1279291672.pdf

Chemo Begins

Connie is in good spirits, and concerned for her future, but still facing her illness and treatment with her usual wit and humor. This is the latest information as of today.

About 6:30 Friday night Connie was started on Induction Chemotherapy.

Orginally they were planning on a 7+3 chemo plan, 7 days of Cytarabine (ARA-C) and following that 3 days of Daunorubicin. They decided to go ahead and hit her with the Daunorubicin right from the start though since she is so "healthy" right now. So instead of 10 days of initial chemo she will be getting it all in the 7 day period.

Day 10-14 she will be at the lowest point in her blood cell count and they will repeat the bone marrow biopsy to see if there are still leukemia cells visible (So the mantra right now is "0 in 14" 0 means no leukemia cells and time to start rebuilding the immune system). If things are looking good at that point, no more induction chemo will be needed and they will do another bioposy at 28 days to make sure that her bone marrow is producing as it should and her counts are getting back to normal.

Given that her white blood cell count is good, she will then be released from the hospital and be sent home to rest and recover for the next few weeks. After that they will start the Consolidation Chemo. This will consist of 5 to 6 days in the hospital each month for a 4 month period while she receives additional chemo. It is somewhat of a maintenance mode chemo to kill off anything that may be remaining.

At this point bone marrow transplant is a 50/50 thing. If her counts stay good through the Consolidation chemo then a bone marrow transplant may not be needed, if the counts start to decrease again then they will explore the bone marrow option.

There is one big test that the doctors are still waiting to hear back on, it is a chromosomal test that gives the doctors a better indication on how she will respond to the treatment they have started. We are hoping to get the results for this tomorrow, so good thoughts are prayers that they test results come out good are much apprecciated.

The doctor said she will be feeling her "normal" self for the next week or so and then she will probably start feeling bad, either as a result of the chemo or any other bugs that might get into her system. They will be giving her anti-nausea and a variety of other drugs during the course of her treatment to combat anything that may come along.

If anyone is interested in donating blood they can do so through the Puget Sound Blood Center. We initially thought Connie would get credit for blood that is donated in her name, but it is actually just a recognition that we are donating because we have a sick friend and we want to help keep the blood bank full of donations, Connie will be receiving blood from the blood bank at times during her treatment.

Please remember any of this information can change on any day of her treatment, this is the best outline the doctors can give us as we all work through Connie having this illness in our minds.

Connie can have visitors at this time; she enjoys them at this point. We always need to be aware of her need for rest as treatment continues so don’t overstay. When visitors become restricted we will let you know. Keep conversations positive, what is going on in your life that she will enjoy hearing about. She has already heard far to many stories of “I know someone who had”, so survivor stories are great and encouraging for her to hear, but lets not over due that line of conversation.

We have set up a Facebook page called ‘Connie’s AML Fight’. Please join (Like) it as we will be posting information there and letting you know when ‘New’ posts are on her “Blog”.

Because Connie is going to be ‘inpatient’ for quite some time I wanted to encourage everyone to mail cards  and pictures to her. She gets those during the day when she has the least amount of visitors and they are all being posted on her wall. The address is:
Providence Everett Medical Center

Connie Chose Room 707
1321 Colby Ave
Everett WA 98201

Thank you all for your prayers and concern for Connie.

The Diagnosis

Okay, so here is the scoop, Connie was diagnosed on Thursday with Acute Myelogenous Leukemia (AML). I will try to summarize what the doctor told us as accurately as I can. I took notes but could not keep up with all the technical and medical information he gave us.

Connie will be staying at Providence Colby Campus Hospital for the next 3 to 5 weeks for Induction Chemo. They will hit her hard, she will probably be bored the first week and then may become a pretty sick after that. They feel they caught her Leukemia in the early stages though which is a very good thing.

The doctor told us she has a 65% chance of going into remission. But any of us that know Connie know that not going into remission is not an option. There are still some additional test results that are still not in and they may give us a better idea of her prognosis.

Once in remission she will be given Consolidation Chemo for the next 4 month with her being in the hospital for 5 to 6 days each month. During this time they will monitor her to see if a bone marrow transplant is needed. But the first step is to get her into remission before we worry about bone marrow transplants.

Blood transfusions will be needed for her along the way. If anyone wants to give blood you can donate in her name at the Puget Sound Blood Center.

Unfortunately Connie is not able to have any flowers in her room as it can carry bacteria, notes and well wishes are more than welcome though.

Why a Blog?

So I thought it might be a good way to keep everyone updated with Connie and for Connie to be able to share her experiences with us, at least while she is feeling good and bored in the hospital.