Good Evening, this is Ken checking in for Janelle. Today is Sunday, April 22nd. I wanted to provide you our regularly scheduled Sunday night update.
We have had a good week in the midst of the storms; fun & challenging times. More on that in a minute. Janelle has decided that she has created a Blog monster as I am always saying things like "I think that is good blog material". Crazy, I used to just scratch my head toward all of this stuff.
On that note, I must share a few of the special times from the week before I give you our current updates. The other night I was just kind of wandering the house, thinking about the last 31+ years, saw the following picture and decided I needed to post it on Facebook. The little boy in front is Moises. He is from Venezuela. He spent the summer of 2000 and 2001 with us. Through that great social networking tool we have actually reconnected with him, we are all "Friends" on facebook. He still refers to us as Mom and Dad when we message. This was taken in July of 2000, it was our Christmas Card that year....
We have had a good few days. Our Adopted Brittany has been her a couple of times...
Kathy & Sheri showed up Friday afternoon in their normal mode, to make sure that we had plenty of food for our weekend visitors
The original Brittany (goes by Britt these days) came into town on Friday night for the weekend, Ian came over Saturday for a couple of hours to visit as well....
Sunday afternoon, the Clarkson family came for a brief visit. Jessie was one of Janelle's teachers last year, we had a gift to give her (Janelle does teacher gifts for everybody this time of year). Brad is a pastor at our church, he is responsible for all of the great Praise and Worship that goes on at SCCC...
While they were here, Britt suggested that Brad should take one more.....
And that is how our week has been since I lasted posted to the blog on Wednesday. I hope you enjoyed that, I kind of get carried away a bit showing off that great Janelle smile.....
Before I end this with our update, I am not sure how much Janelle has blogged about our brother in law, Michael and his battle with cancer. One of the things that has helped keep me so focused and positive is his situation. If you listen to the Doctors, Michael should not be here but he is....like 3 years since the doctors told him to get his affairs in order. Today, my sister highlighted Janelle on their blog...All three of my sisters love Janelle, I have often kidded Janelle that they like her more than their own brother...
http://bolingerscottage.blogspot.com/
Below is a slightly edited verson of the email I sent our family last night to provide them an update on our decisions. I am sorry that it is also a bit long however this seems like the easiest way to provide the information to you.
As always, thank you for your words of encouragement. My plan is to continue to provide you updates every Sunday, more often if anything significant takes place.
Ken (& Janelle) Hayes
********************
Good Evening Extended Family....
Wanted to update you on our status. We will be engaging with the Hospice organization on Monday morning, this means that we will no longer be engaged in any active treatment to control the cancer. We are now in the Lord's hands, healing will come very soon. I still hold out hope that it will be earthly.
I wanted to quickly recap the last few days for all of you so that you understand that we are at peace with this decision. I have sent this just to immediate family but you can forward this as is to your extended family and friends who are interested (I will be doing that after I send this to you). I will include this level of information tomorrow night on the blog (with a few more great pictures just to let people understand that we are OK).
I "knew" on wednesday that we needed to move in this direction. Further treatment will not work, no real confidence that it would extend her life, high confidence it would make her more sick than she has been dealing with the last several weeks. My personal dilema - if Janelle wanted to do more treatments, no brainer we would. If Janelle did not want to do more treatments, were we (Britt, Ian, Jessie, Bob, me) on board with that decision, no regrets, no resentment that we did not do everything possible. While I am not sure Janelle comprehends that her life very well will end very quickly, she was very clear that she wanted no more treatments. I have had discussions with Britt, Ian, Jessie and Bob on this, everybody is comfortable that everything possible has been done.
Friday afternoon we had our initial Hospice consultation. It was a very positive discussion. They really do not frame things in terms of end of life, only all of the things that they can do for us on a daily basis as needed. I was not ready to sign up as I still wanted to hear from everybody on their thoughts. ...................................................................That all said, my idea of Hospice is just to augment what I can do. I will remain the primary care giver and take care of all her needs. Having them will just assist me in making sure I have the medicines we need to keep her comfortable, that I am not doing anything that is harmful to Janelle in anyway. I welcome having them on my CARE team.
We have had a good day. Britt and Janelle spent most of the day together, I was running around doing my projects. Ian came by. Our other Brittany came by for dinner. A few other friends also. Janelle is in no pain which is such a blessing. That said, her ability to walk, to concentrate, pretty much any normal functions is limited and very apparent to anyone who spends a few minutes with her. For me on the 24/7 mode, everyday is a bit worse as far as her abilities. At this point, I am using the wheel chair extensively, the few steps she needs to take usually end up in my holding her up, dragging her to the destination. Again, I am not sure she really comprehends the situation in terms of how much time she has left (no reason to talk about that) however we have had a few very special times the last two mornings just laying in bed, hugging, crying a bit, just being together. Also, on Wednesday they did not give her the main Chemo medicine based on everything that has happend; initial result: we have had NO sickness since last Tuesday.
As you probalby understand I am a bit on over load. Lots of things to digest, tons of calls, people wanting to come by and of course I am still working full time in my job which has been a huge blessing. That said, I am trying to answer every call. If any of you want to talk, have specific questions on any of this, feel free to call me. If it is a bad time and you get voicemail, I will call you back.
ken
OK, now for just a brief advertisement and please understand this is not my intention to get you to donate ( although you are certainly welcome to do so). You will have other opportunities for that in honor/memory of Janelle in the days ahead. That said, this disease Janelle has is nasty and frankly there is no cure. My brother in law is coordinating TEAM JANELLE to assist in working toward cures for this terrible disease. Here is the link to his page where he shares his heart a bit.
Finally for those of you who do not know the details of this form of cancer, last August (actually 8/4, the day of our biopsy/result), I googled to find out what we were dealing with...this is what came up.
Glioblastoma Multiforme (GBM) is the most common and most aggressive of the primary brain tumors. The current World Health Organization (WHO) classification of primary brain tumors lists GBM as a grade IV Astrocytoma. Astrocytoma is one of 3 distinct types of Gliomas in the brain, although mixed cell types occur as well. GBMs are highly malignant, infiltrate the brain extensively, and at times may become enormous before turning symptomatic.
Prognosis. The prognosis for those suffering with GBM is poor. Without treatment, patients have a life expectancy of three months. With optimal treatment, the mean survival rate is 12 months. Fewer than 25 percent of patients live past two years and fewer than 10 percent survive past five years.
Dear Ken, that is a beautiful family picture you shared. My gosh, does your Britt look like her Mom, right down to the knockout smile. Love to you all.
Posted by: Laura | 04/22/2012 at 10:12 PM
Ken... I am heartbroken for you all! I don't really know what to say except that I am so sad! I will be praying for you all! I am so thankful that Janelle knows the Lord! That has to bring you all so much peace and comfort. PLEASE give her a hug for me. I wish I could travel there and give her one myself! Love you all! Please let me know of anything that I can do for you from TN!
Posted by: Kelley Eubanks | 04/22/2012 at 10:16 PM
oh, Ken, thank you for your frank and honest communcation. There is so much I want to say yet don't know where to start. I continue to send you my love and prayers and ask that God keep you all ever so close as you enjoy your time together. And I will pray a special prayer for you for continued strength and wisdom as you take care of our sweet Janelle.
Posted by: Maureen | 04/22/2012 at 10:20 PM
Ken,
My thoughts and prayers are with you tonight. I will pray for a miracle. My father in law used hospice and I want you to know it is a wonderful organization. I am sorry to hear that is where you are now on the journey, although I do respect it. After reading Heaven Is For Real I realized what a wonderful place it truly is. I have no doubt that when it is Janelle's time she will have a place in heaven. She is already an angel.
Much love and peace to you both,
Anna Smith
Posted by: Anna Smith | 04/22/2012 at 10:22 PM
just a big hug from argentina.(Sorry for my English)Internet makes jannelle's work been known even here. I always read your post. My prays and "buenas ondas" (good thouthgs)for you and your family
Posted by: laura | 04/22/2012 at 10:22 PM
Thankyou Ken for sharing those beautiful family photos, so many wonderful memories being made!
Love and hugs from Australia.
J.xx
Posted by: Jaki | 04/22/2012 at 11:10 PM
Prayers for you, Janelle, and your family.
Posted by: Lisa | 04/22/2012 at 11:16 PM
Ken, thanks for sharing the latest phase of your journey with our sweet Janelle. I'm so very sad and have tears in my eyes as I type these comments. Life just isn't fair sometimes and this is a prime example. You are so very blessed with a huge support group and very strong faith. We are all here for you and your family even though we're miles apart. Praying that Janelle has some great days now to enjoy rather than feeling so miserable. Sending prayers and hugs your way! Good Bless all of you.
Posted by: Kathy Mc | 04/22/2012 at 11:21 PM
I am so sorry that ya'll are having to go through this! Janelle is such a sweetheart and so strong in her faith, that it has been so inspiring to everyone around her! God Bless you all and my family will be praying for ya'll!
Posted by: Winter | 04/22/2012 at 11:28 PM
I continue to pray for you and for Janelle - still praying for earthly healing, of course, yet praying for peace and grace for you all if the Lord chooses to welcome her Home soon. I'm sure she would echo the apostle Paul that it would be hard for her to choose - wishing to be with Christ, yet longing to remain here to be a blessing to others. How comforting that our God knows what is best.
Love and prayers,
Tricia
Posted by: Tricia T | 04/22/2012 at 11:45 PM
I am so sorry! Thank you for sharing, Ken. I hope it helps you a bit . Britt sure has Janelle's smile! I am so glad you both have a strong faith! I am at a loss for words right now, sorry . Continued prayers .
Posted by: Marybeth L. | 04/22/2012 at 11:47 PM
No words can describe my heart in reading this blog. Tears... Precious Janelle, a beloved child of God! I wrap my arms around you both. Sending love and hugs. Praying, Dear Ones, praying,
Jan
Posted by: Jan Frost | 04/22/2012 at 11:57 PM
My heart is aching. Lots of love and continued prayers. Thank you Ken for this heartfelt update. Sending big hugs xxx
Posted by: Lee | 04/23/2012 at 12:00 AM
Ken and Janelle, I am so sorry to read that this is where this journey has led. I know that Hospice is a wonderful organization (my husband has been a chaplain for them), and will be so helpful to you, Ken, as you seek to make Janelle as comfortable as possible. My prayers are with you both and your family. God Bless.
Posted by: Nancy Ludwick | 04/23/2012 at 12:30 AM
Praying for you!! I don't know what to say, but just saying I will keep you in my prayers. Hugs!!
Posted by: Giovana | 04/23/2012 at 12:34 AM
Ken, I am at loss for words. My heart is heavy. I appreciate your honesty in sharing with all of us your decision. Please give Janelle a hug for me and I wish I could give you one also. I thank God that Janelle has you at her side. I will continue keeping all of you in my prayers. God Bless, Charlene
Posted by: Charlene R | 04/23/2012 at 12:52 AM
Can I bring food for you? Let me know. You are in my prayers. Linda
Posted by: lrhyne49@carolina.rr.com | 04/23/2012 at 01:23 AM
Holding you close in our prayers!
Posted by: Kristine | 04/23/2012 at 01:39 AM
Thank you for your update, Ken. After reading your last blog entry I was sure that
this would be the choice you would make. I
am truly saddened that this is where you and
Janelle find yourselves on this journey, but
grateful that you have found peace in your
decision. Janelle looks so much brighter in
these last photos and the fact that she has
no pain is an enormous blessing. I will keep all of you in my continued prayers.
Posted by: Sherry in MI | 04/23/2012 at 01:48 AM
What can i say. i can t really say anything right now. My heart is heavy and my eyes full of tears. I found a wonderfull woman online and she became my friend. I don t want to lose her.I know this is selfish.It is so selfish but this is how i feel, angry and sad. I ask the Lord to forgive me for this, it is just a first reaction to the news.
I want to travel and be there so badly, more than ever and this is so frustrating.I m always praying for you.
Ken i m sure you made the right decision, leting yourself and Janelle in God s hands is a decision that can NEVER be wrong.This is why you are an endless source of inspiration for me.
Please tell her i love her and i give her the biggest hug...
Posted by: eleftheria | 04/23/2012 at 02:14 AM
Such very sad news but it's good to know that Janelle is in the hands of the Lord. You all continue to be in my thoughts and prayers.
Posted by: Vicky | 04/23/2012 at 02:23 AM
Oh Ken, I am so sorry. I am praying for you all. I know Janelle only from online and email, but her blog posts always radiated goodness, cheerfulness, and wisdom--and I soon thought of her as a precious friend. Praying peace and strength and comfort for all of you--
Posted by: Sharon D | 04/23/2012 at 03:33 AM
Prayers continue for both of you. Thank for this post and your honesty. Hugs to both of you. Love, too.
Posted by: SueB | 04/23/2012 at 05:32 AM
Thank you for taking the time to share your decision with us. You are clearly a wonderful husband and my heart goes out to both of you.
Posted by: Joan B | 04/23/2012 at 05:40 AM
Ken & Janelle - thank you for sharing so much of what you are going through with us. My heart breaks for you all. You will continue to be in my thoughts and prayers.
Posted by: Debbie Gaydos | 04/23/2012 at 06:42 AM