Jim & Darlene Hands Holding On
Jim and Darlene have been married for 28 years, like many of us they sought the American Dream... Own a home... have a couple of kids, a boy and a girl would be nice, first came Mike, a few years later their girl Jamie Lee.... go to work each day... make a good, honest living...bring the kids up... retire and take it easy for a few years. Sounds good, right?
Well, up until 3 years ago thats just what they were doing. Yes they had ups and downs but nothing they couldn't handle, we all have ups and downs, right?
3.5 Years Ago their boy Mike went to heaven way too soon. Mike was 24.
2.5 Years Ago Darlene was laid off from a job she had held for 30 years.
20 Months Ago Jim was diagnosed with Stage 3 Prostate Cancer. During this past 20 months Jim has endured multiple radical surgeries, radiation treatments, numerous medication therapies and many PSA tests. Jim's PSA in a perfect world after all these interventions to irradicate the Cancer from his body should be 0.... Jim's PSA continues to rise.
19 Days Ago Darlene went to the ER with a bad stomach ache, unexplained weight loss and bruises appearing all over her body. Within hours she was undergoing a Bone Marrow Biopsy and told that "Most likely she had Leukemia, what kind we don't know."
3 Days Ago Darlene was told "What kind?" aCML.
Atipical Chronic Myeloid Leukemia..... a very rare subtype of Leukemia (Cancer of the Blood).
A Bone Marrow Transplant Is Needed. SOON!!!
Too much for one family, right?
Now I'd like to tell you how Jim and Darlene are coping with this quick succession of major life altering events that most of us will never have to deal with all at the same time.
Jim up until 19 Days Ago was working at his business doing his Hardwood Floors, he was forced to not work for 7 weeks following one of his major surgeries, during that time he was more worried about not keeping committments he had made to customers than himself.
He did fulfill those committments.
After surgery there was 6 weeks of radiation treatments.... Jim requested the 8am radiation time so that he could still get in a full days work after. After a while his body did force him to slow down and as I write this he has had to work less, a lot less.... as we all know less work makes for less income.
Darlene was working up until 19 Days Ago at a long term care facility doing activities with and helping elderly patients get where they needed to be within the facility.... A job she was great at, the patients loved her, for some of them she was the light of their day. She genuinely cared about them and was rewarded with a smile.... didn't pay much but Darlene used to say "We'll get by Annie, God won't give us more than we can handle."
Darlene has not been to her workplace for 19 Days. One of the prevailing side effects of aCML is the bodies inability to fight infection..... even a trip to the grocery store can and will wreak havoc. Her entire life until a successful Bone Marrow Transplant is acheived will be lived with masks, not being in crowds, continous hand washing, gallons of Purell, no hugs, no hand shakes......
I have been with Darlene and Jim these past few weeks, when we went to the ER for a rash that appeared on over 95% of her body and she was admitted for a few days. I was with Darlene and Jim 3 Days Ago when we met with the Hem Onc Doctor to be told what type of Leukemia they were dealing with, when she said... very rare...only a Bone Marrow Transplant...then Darlene was admitted for another 3 days.. she was admitted 19 Days Ago for 4 days. Thats 9 days inpatient out of the last 19 days. This is just the beginning, there will be many, many more hospital stays.
While Darlene, Jim and I were spending long hours at the hospital I marveled at these two people who were walking from Doctor to Doctor, test to test, holding hands, supporting each other, holding each other up. Trying with all their might to not go to the dark side of what is happening to each one of them. Darlene on the phone helping friends get through their trials of the day. Darlene smiling at every Healthcare person she met. Worry comes when they have to call Darlenes Mom who lives with them and give her the news... Is she allright?? The concern and love when calling their daughter Jamie Lee. Not a self centered bone between the two of these people....
I think I would be mad, really mad..... enough already.... No, not these two, not yet. Sad and bewildered yes, but not mad.
I also saw first hand the financial stresses that TWO PEOPLE with Cancer in one family brings. The parking, The co-pays, The lunch, The dinner, The bottle of water, The loss of work hours, The gasoline to get the car moving. The lost work hours.....
At home the utility bills like clockwork are in the mailbox every month, car payments, homeowner insurance, car insurance, property taxes, and all the rest. Winter is cold.. heat costs money. Groceries, Personal Care items.
Darlene and Jim are the first ones to help someone in need. They need help now. Please if you can donate to this fund...... everything and anything helps.
I Thank You for taking the time from your busy day to read their story.
If you are of the praying persuasion Please say a prayer for Darlene and Jim.
Eleven months ago when I started this GoFundMe campaign as a way to help our friends Jim and Darlene deal with an unfair amount of "bad" news I never fathomed the thought that I would be posting this update...... and I apologize that it has taken me 15 hours to do it.
As many of you have already learned Darlene left this physical earth that we all live in at 3:15am this morning. I am not going to say that she lost her battle with cancer today or that she lost a fight or that she lost anything. Because she didn't.
Darlene's physical body could not keep up with the medical related assaults it was enduring.... could not sustain life with the cascade of medical organ related issues that couldn't be "fixed" fast enough before the next one occured.
Her emotional and spiritual being while faltering at times (who could blame her) was strong and her FAITH that her God would welcome her into another realm was strong until her last breath. She was ready.
I was there.... I spent hours with her and her family yesterday.... it was heartbreakingly sad to know that this beautiful "inside and out" woman was leaving us but at the same time there was a peaceful aura in her hospital room....... she was comfortable and had no pain.
So speaking for Darlene, Jim, Jamie, son in law Mike and Darlene's sweet Mom Leona, I want to Thank everyone that supported Darlene and Jim these last months and going forward....... she knew everyone was pulling for her, she felt the good vibes and karma and she appreciated every single person reading this.
Please continue to pray for this family as they lay Darlene to rest and continue on Jim's journey!!
I'm sure many reading this have heard that our friend Darlene has been in the hospital resulting from complications after her Bone Marrow Transplant. Her body is rejecting the donated stem cells, this complication is actually the opposite of the commonly known complication of "rejection" when the recipents body (Darlene) rejects the donated stem cells.
Darlene has been fighting and trying and fighting and trying harder....... her body is not cooperating. Her caring and skilled transplant team at Dana Farber/Brigham and Womens have been working overtime to treat her intestinal tract where this issue has been wreaking havoc and causing a cascade of related problems.
Anyone who knows Darlene knows that her Spiritual Beliefs have always been a big part of her life and she is relying on her God now. I have been seeing her in the hospital these past weeks and every time I leave her I am amazed at the strength she has...... she is sooooo unwell and yet still asks how I am, How I am???
How I am???? she's fighting for her life and still cares about How I am? How you are?
Darlenes care is in the hands of God now.... Her God that she is so assured with.... Her God that I pray daily will provide Mercy, Faith and Grace to our friend and her husband Jim as they continue on this long road of uncertainty.
All of you ask how can I help? Pray and then pray some more... Pray that this family continues to be able to find the strength to deal with what seems to be a long run of very "bad luck". Pray for Faith and Acceptance ..... Pray for a miraculous return to health.
Be good to the folks around you.... bring some unsolicited joy to a neighbor, to a stranger. Hold the door for the person behind you.... Let the other guy at the intersection go first.... Shovel your elderly neighbors walkway. These are all things that Darlene would do if her body allowed.... she would smile if she knew others were spreading kindness.
I will close with many Thank You's, Thank You Thank You Thank You!!!!
It's been awhile since I've posted an update .... as you all can know life gets busy and we find ourselves with not enough time in the day to get it all done. So while I'm glad to be living a full and busy life I apologize to all of you..... Jim and Darlenes army of well wishers, prayer warriors, friends and family for my lapse in updates of our friends journeys.
While my updates to this page may have slowed my constant and continuing support has not wavered.... meaning I am still and always will be very close by and able to keep these updates coming.
Jim continues to respond with great effect to the medication he is taking to slow any progression of his Prostate Cancer, he is doing remarkably well to the point of being able to get back to his work on a part time basis.... this is huge. Your prayers are working... keep em coming!!!!!
Darlene while acheiving a 98% Donor DNA acceptance at around 75 days post transplant and an energy filled, feel great surge of health at around 100 days post transplant that lasted a glorious 3 weeks has suffered a set-back.
While not a complete surprise because we knew it could happen Darlene has been diagnosed this past week with GvHD......Graft vs Host Disease occurs when donated stem cells see the recipients body as foreign and rebel. GvHD is a common complication of a Bone Marrow Transplant and it occurs in varying degrees some much worse than others..... if there is anything good to say about this complication it would be that if a BMT patient is more than 100 days post transplant when it shows up they are diagnosed with Minor GvHD vs Major GvHD (within 100 days) which is much more difficult to treat. Good News...... our friend had passed the 100 day mark before her GvHD arrived!!!! We have to find "the good" in everything.....
GvHD can manifest in many different organs/body systems in Darlenes case this nasty complication has settled in her digestive tract, which we have been told is one of the "better" body systems to treat. I'm sure that after having witnessed how wiped out, depleted of all energy, in constant pain and totally stressed and scared Darlene has been these last 2 weeks she would be the last person on earth to say that there is anything "better" about what she is experiencing.
Darlene has been inpatient Dana Farber since August 22 and is expected to continue receiving inpatient treatment for a minimum of 2 more weeks.
A PICC line has been inserted into her venous system to allow her Doctors to administer vital nutrition. In order to treat her Digestive Tract GvHD her entire digestive tract needs a break to heal and treat, so....... her "food" will come by way of a bag hanging on an IV pole for what we hope will only be a few weeks. She had dropped much weight that she could not afford to when her GvHD symptoms began 15 days ago, while certainly not an instant 20 pounds Parenteral Nutrition will maintain the patients starting weight.
I need to note one thing about this complication to Darlenes full remission;
GvHD is when the Donor cells attack the Recipients (Darlene) cells.
Transplant Rejection is when the Recipients cells attack the donors cells.
Although GvHD is a serious complication of BMT we are Grateful for it.... there is MUCH HOPE that Darlene's Doctors will be able to treat her symptoms and get her home!!! Transplant Rejection is a comparatively much more serious complication that more times than not does not have a favorable outcome.
So with this update I wish I had only great news to report, but we need to remember that I could have much worse to say. As you can imagine this set-back has our friend feeling somewhat sad and defeated... for lack of better words.... it sucks. Darlene is battling with all of her might, the little that she has.... This is where we all come in, this family needs all of our prayers and positive thoughts now more than ever. I am forever amazed at the Power of Prayer, the Power of Friendship and the Power of Hope that we all, a group of people can bring!!!!
Please keep sending positive prayers or texts or emails or messages or messages in bottles or pony express.... it doesn't matter how words of encouragement come... keep sending them.
I'll end with a heartfelt THANK YOU from this very courageous family that I write this update for.
THANK YOU we APPRECIATE every one of you!!!!
The attached photo shows without a doubt the Majesty of Gods work in nature....we believe He works the same way through people....
I have a whale of an update....... the best possible news..... astonishing....awe-inspiring..... exalting....!!!!!
One of the most important markers of a Bone Marrow Transplant is the percentage of Donor DNA that the Recipients DNA accepts..... or reproduces as their own.
Well friends, Darlene was told yesterday by a very happy Joseph H. Antin MD, Cheif and Program Director, Stem Cell Transplantation Program Dana Farber that her DNA is now 98% Donor DNA.
To say this is a significant number would be the understatement of the year!! This is Grrreeaattttt!!
There are still many hurdles to jump, but the fact that Darlene's body has all but 2% healthy stem cells makes any complications (if they arise) easier to treat and puts her much closer to remission status.
Darlene is still confined to her home with very strict infection precautions in place, she still has bad days where she feels like she's been hit by a truck and there is much danger in her world of getting sick from any number of thousands of micro organisms that you or I would not even know had passed by us, but she is slowly but surely coming around.
We believe that all the many, many prayers you all have prayed, all the kindnesses you all have bestowed, having the best medical care in the world and knowing that family, friends and folks we don't even know have been pulling for us helped to get us to this day.
Thank You, Thank You, Thank You!!!!!
Please remember that a young man somewhere in the USA donated a simple cheek swab to Save a Life..... www.bethematch.org/
I would like to thank all who donated to help Darlene and I. The gifts were verry appreciated as I was able to go through this verry tough ordeal with Darlene holding hands . Darlene as most no was the love of my life I will be forever grateful for the many yrs we spent together. I managed to make every appointment and during her hospital stays I was there every day even when working the gifts helped tremendously with travel parking etc as this can get verry expensive. I had reduced the amount of work I took on to be with this amazing woman I was blessed to call my wife. Darlene fought verry hard her body was just to damaged to continue. I now need to carry on without her and continue my battle with my own health issues. I will miss her verry much until we meet again I will carry are love with me forever. Thank you and God bless all of you. Jim reilly.
I am so sorry for you, Jim and Jamie....I hope both of you know how many people are out there thinking of you both right now...hugs to you both. Kathy Cloutier
My thoughts and prayers are with Darlene's family. May their hearts and sadness be comforted with happy memories of Darlene. Thank you also, Annie, for posting this gofundme page. While I did not know Darlene and the outcome was not what all had hoped for, I am thankful to have been a very small part of the last few months of her and her family's journey. God bless. Kimberly
Thank you all so much for the support with my parents. Please continue to say your prayers and know that your contributions have helped tremendously with alleviating stress for them. God Bless all of you and lets pray for a New Year full of miracles. ♥
Wow. This bring my heart so much joy and fills my spirit with hope! Thank you all so very much! So at loss for words. God bless you all forever and always!