Join Connie's Crew of Hope at The Light the Night Walk

Each year, in communities all across the United States and Canada, families, friends, neighbors and teams from local businesses and national companies come together for The Leukemia & Lymphoma Society’s (LLS’s) Light The Night Walk events to bring help and hope to people battling blood cancers.

Light The Night Walk events are evenings filled with inspiration. Carrying 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.

Whether you’re a cancer survivor, supporting someone who is battling cancer or have lost a loved one, please join us and help Light The Night.

http://pages.lightthenight.org/wa/SeattleL11/ConniesCrewofHope

Where Has Connie Been?

Where has Connie been?  If you asked me that last week I would have had to tell you she was back in the hospital, which some of you knew and some of you did not.  Today I can tell you she is back home.  Yeah!!

In my last update I had told you that Connie was struggling on her road to recovery.  Well on April 29^th, a Friday afternoon, the doctors decided she needed to be admitted to the hospital and Connie did not put up a fight.  It had been a long couple of weeks at home and her road was getting bumpier as the days went by.  So once again in the hospital they ran her through the full gauntlet of tests, upon tests.  Of course they started her on treatment right away and started feeding her meals by IV.  She was having severe digestive issues and was rapidly loosing weight, had no appetite and could not keep all her medications down.  The doctors were able to rule out most things so knew is was the post transplant ‘graft vs host’ rearing its ugly head.  Her steroids were increased again and with the loving care she was given, she was released after 8 days – going home on Mother’s Day this past Sunday.

So again Connie is continuing on her journey, she is hopeful there will be no more bumps in the road, or detours she has to take.  She is now back to daily visits to the clinic until she is stable enough to be seen less frequently.  She is still being supported with units of blood & platelets and a continual balance of medications.  We cannot say enough good things about the care she has received, the nurses, doctors, PA’s & PT’s all have been amazing.

I would like to ask all of you who are able to donate blood and platelets to do it as often as you can.  Every person who receives a bone marrow transplant only lives because others are willing to donate their blood to support them through their treatment, you are literally saving lives every time you donate.  We have so many people to thank for Connie’s donations, not just her bone marrow donor but all those she receives blood & platelets from.

I really think Connie is up for some phone calls, don’t hesitate to give her a call.  She may be at the clinic and be hard to catch but keep trying.  She is tired of being sick and needs some normalcy in her life.  I know you will be understanding if you hit her at a time when she tired and not up to talking also.

Be on the look out for an email from Stacie very soon for this year’s ‘Light the Night’ walk to raise money for the fight against Leukemia.  Connie’s team raised the 10^th highest amount in the walk around Greenlake last September, I hope we can do as well or better this year.

I thank you all on behalf of Connie & Ron for the blessings you are to their lives.

Linda

Connie Released From Hospital

Connie escaped from the UWMC at 11:00 Sunday morning, she is joyous and thankful.  Her body is still weak but her mind is strong with determination to recover and make everyday count.

Her journey continues with a 7:15am appointment to the Seattle Cancer Care Alliance on Lake Union Monday as an outpatient.  It’s an early appointment but she said anything is better than staying in the hospital.

We have found that Connie remembers very little of the past 2 weeks which is not such a bad thing, nor surprising.  She can now go back and read and look at all the wonderful cards that were sent to her during her “lapse of time”.  She asks lots of questions and we tell her what she wants to know, we keep it simple and let her know how far she has come.  Connie looks forward to a life full of promise, to gain strength, spend time with her grandson, meet up with friends and attend family functions.  She is hoping for a trip this year to see her son’s new house in Houston TX and a December trip to Hawaii.  She is keeping her positive attitude that “anything is possible”.

Thanks to everyone who sent well wishes and kept her in your prayers, it was a very difficult time for her family.

God Bless.

Linda (on behalf of Connie & Ron)

Connie - Sharing Good News

Just had to share some good news – Connie officially out of ICU at 1:00pm Monday April 4^th.  She is off many meds, heart and breathing at normal rate, she is eating food and drinking.  She is still very weak but knowing Connie she will regain enough strength to be out of the hospital in 3-4 days. (I am guessing).

As far as the bleeding in her lungs, the doctors seem to have brought that under control with the steroids.  Next Saturday April 9^th they will start lowering the dose of steroids, the next few weeks will give us a better picture of her prognosis.  She is not out of the woods yet, so please continue to keep her in your prayers.  For now all is good and we continue to take it one day at a time.

Linda

Connie - Update April 2nd

Hi Everyone,

So another week has gone by since my last update to you, I so wish I had great news.  Some good news is Connie’s Bone Marrow transplant is fully grafted and Connie is building a new immune system quickly, her counts are great.

Unfortunately Connie has had a serious complication. Connie has been diagnosed with what they call ‘Diffuse Alveolar Hemorrhage’ (DAH) in her lungs. We got a call last Tuesday morning that Connie’s breathing had become extremely labored and her heart was in A-fib flutter. It was like she was running a marathon that had no finish line.  On Wednesday morning the doctors decided to intubate her and put her on a ventilator to assist her breathing. Once they finished this process they did a Bronchoscopy where they took many samples from her lungs. All the cultures have come back negative for bacteria or viruses, but they found blood in her lungs with other fluid.  

So what do we know today – Connie is tolerating the ventilator amazingly well.  Her heart rate has slowed down and has mostly stayed in sinus rhythm since they intubated her.  They have been able to decrease her heart medications and reduce the support from the ventilator so she is doing a higher amount of breathing than the ventilator.  It is a ‘smart’ machine and supports her only when she needs it.  To exercise her lungs and to test her breathing they take her off the machine and let her breath on her own for about 2-3 hours a day. The doctor’s assess ‘day-by-day’ when she will come off the ventilator and what her prognosis is.

For the ‘Diffuse Alveolar Hemorrhage’ (DAH) in her lungs, they have started her on massive doses of Steroids and are giving her many platelets to try and stop the bleeding. Apparently DAH is caused by the toxicity of the many rounds of Chemo she has had over the past months and possibly involving some ‘Graft VS Host’ from the donor cells & her old cells reacting to each other. The doctor said treatment is ‘one day at a time’ and they will see if they are able to wean her off the ventilator and she can breathe at a normal rate per minute and oxygenate her body on her own. Another big test will be if the bleeding stops with the steroids and what happens when they decrease the steroids in the next couple of weeks.

As we all know Connie loves to talk and is very social, being unable to talk with the tube in her throat is extremely frustrating for her.  We are getting good at Charades, 20 questions (Yes & No only), and a small ‘white board’ that Connie tries to write on.  She is weak and shaky from the steroids so that makes it an interesting guessing game much of the time.  I can only imagine the ear full we will get when Connie is able to talk again.  She will probably tell us she can not believe how stupid we all are.  Much of the time when she writes it is to tell us to, “go eat”, “go home to bed”, most often not even thinking of herself but others.  So I guess I don’t need to tell you that even though Connie is intubated she is awake a lot, she receives a little sedation during the day and a little more at night so she is able to rest more comfortably.

Goals for this next week are to get her off the ventilator, stop the bleeding, maintain her vitals on her own and get out of ICU.  She has beaten the odds before so we are counting on her to do it again.  Connie’s son & daughter-in-law from Texas are in town for a visit and Connie was elated to see them.

Thanks so much to all of you that have sent her cards, it not only helps her but her husband and family also.

Much appreciation to all of you, please continue to keep her in your prayers.

Linda (on behalf of Connie & Ron)

Connie - Day 21

This week was one of those good news, bad news kind of weeks.

Good news:

• Connie’s cells have started to come up and they are 100% donor cells. 
• Connie’s Mucositis has started to heal.
• Connie has been able to eat a few more bites of soft foods.

Not so good news:

• Connie was moved into the ICU on Wednesday because of heart A-fib episodes and is now back on heart medication.
• Connie has run high fevers on Thursday & Friday, Tylenol does bring it down.
• Connie is on Oxygen.
• Connie still needs nausea medications.
• Connie has small fungus infections in her lungs
• Ron is spending nights at the hospital (as well as the days), neither is getting any restful sleep.

All in all it has been another rough week for Connie.  The news was good and we were encouraged by test results.  There is a light at the end of the tunnel but it seems to be miles away.  So for now Connie is dealing with many of the side effects of having a Bone Marrow transplant while the donor cells slowly produce her new immune system.  It is a slow process that just takes time and there is no way to make it happen any faster that it wants to.  Connie was pretty out of it today, restless when her fever would spike and sleeping when it was down.  Her heart rhythm was better today then yesterday so they seem to have found the correct dosage of heart meds.  We try to keep a positive attitude that each day will be better, not that everything improves each day but we have signs that the process is working and each ‘baby step’ gets Connie closer to her recovery.

Thanks to everyone for keeping Connie and her family in your thoughts & prayers.

Linda (on behalf of Connie & Ron)

Connie - Day 14

First I want to thank all of you that have sent cards to Connie this week it has helped her so much.  The words of encouragement and to know people are thinking of her really helped her get through a really rough time, please keep them coming.  We have taped them to her wall at the foot of her bed and I caught her gazing at them yesterday and know they brought her comfort.

Yesterday was day 14 for Connie, two weeks since she received her donor cells.  The doctors had told her she would get worse during these two weeks (day zero – 14) before the transplant would graft and she would begin to recover.  It is hard for me to even find words to describe Connie’s last week.  To say she was horribly, miserably sick is such an understatement.  The doctors and nurses have taken good care of her and done all they could to make her comfortable but it takes the body to do the healing and it all takes time.  The doctors have done an amazing balancing act with treatment and medications, so many medications have side effects that they have to balance the doses lower or higher according to her daily test results and her monitored vital signs through out the day and night.

A common side effect of the Bone Marrow Transplant process is what they call Mucositis.  It is described as;

The injury of the mucosal lining of the mouth and throat and is a common regimen-related toxicity following ablative HSCT regimens. It is usually not life-threatening but is very painful, and prevents eating and drinking. Mucositis is treated with pain medications plus intravenous infusions to prevent dehydration and malnutrition.

  

Unfortunately Connie has had a very sever case of Mucositis, her face and neck are very swollen.  Connie describes it as “looking lie a Chipmunk, that has the mumps, that had there 4 wisdom teeth pulled”. (as you can tell she still has her sense of humor)  Her mouth is so swollen she is not able to close her lips that have become raw and painful as well as everything inside of her mouth and throat.  Yesterday was the first time she was able to swallow without chocking; she managed 1 bit of jello and 4 bites of a Frapachino.  She has been on IV feedings, antibiotics and pain medication.  A few days ago they moved her from morphine to something stronger, I did not even know they had anything stronger, but it helps the pain be manageable.  Of course part of the treatment to help the healing process, is for Connie to swish and gargle many times a day with a baking soda, saline solution.  Thank goodness for the pain meds.  Of course all this has made it very difficult for Connie to talk and hard to understand when she tries, as you can imagine this frustrates Connie. 

 

So the doctors say ‘most of the transplant patient’s’ cell counts start coming up between day 15 – 21.  Today is day 15 and I am praying it will be soon.  Once her counts start to come up she should feel better and her Mucositis should heal.  So to me, that means, this should be as bad as it gets and the turning point is near.

Connie commented on her view from her hospital room, it overlooks the canal that runs behind Husky stadium.  She enjoys seeing the rowing teams go by, boats out for a cruise and people walking along the path by the water.  She is looking forward to all the little things she wants to do this summer, all those things we take for granted in everyday life.

Thank you all for your kindness and caring for Connie.  Each of you help her get through each day with her amazing strength and courage.  God Bless you all.

Linda (on behalf of Connie & Ron)