Wednesday

Matthew was much more alert and lucid today.   He had several visitors, and was responsive (a little) to them.  He was restless last night, and was wanting to get up quite a bit.  He sat on the side of his bed and ate ice chips. 

The hospice situation is still up in the air.  The case worker at MDA is actually the one looking for placement.  Several hospice facilities will not accept transfers, others won't do a pump for pain management, others don't have openings....etc...   For now, he is comfortable, and that is what we are most concerned about.  I asked why he has to move....insurance.   MDA offers a very high level of care, and insurance balks at paying for it if his care can be handled elsewhere.  It is possible that we may hear something tomorrow,  

There have been questions about visitors.  We are not refusing visitors, Matthew just may not be very responsive.  He also tires easily and sleeps a lot.  

We would still love for you to write a letter.  We are still sharing them with him.  You can email at dearmatthewletter@gmail.com or send via Facebook.  

For now, we wait, and watch, and pray.

Tuesday

Matthew was a little more responsive today.  He was able to tell the nurses he didn't like his sponge bath.  He also asked my mom, "What happened?"  He has been kind of agitated and keeps trying to get up out of bed.   Where he will finish his days is unclear.  The local hospitals do not accept hospice transfers.  MDA does not have inpatient hospice....this was a miscommunication/misunderstanding.  It is unclear whether we could keep him comfortable at home since he can't swallow.  I will share more as I know more.

I found this today, and thought I would share.....

As your time together draws to a close, remember that even though there is great sadness and difficulty in loss, you’re giving your loved one a great gift by accompanying him or her on such an important journey. 

Monday

Emily came in today, and is staying with Matthew tonight. I have heard that he was awake a bit, and that he made two sentences.  I hope I have these just right....they were..."Be quiet," and "Shut up."  So, I think that he is still in there.  He is sleeping most of the time.  At times, he is fairly unresponsive. I have included a picture.  He is covered in a lovely prayer shawl that was a gift from one of his friends at the bank.

Matthew's time left with us is short.  It is hard to tell exactly how short, because as you know, it is not up to us.  Last Friday, the doctors predicted 1-2 weeks.  

Our Grandfather Lawrence (Mom's Dad), passed away April 5, 2011--just one month before Matthew's diagnosis.  My Aunt Martha had a dream that I would like to share.  In her dream, my Grandfather came and talked to her.  He had the biggest smile on his face.  He said that he was getting ready to take Matthew home.  --Matthew loved his grandfather so....

A Move

Matthew has been moved to room 1256 at MDA.  This is the acute palliative care unit.  He is expected to stay there for the next 3-4 days, after which, he is expected to move to inpatient hospice.  They specialize in pain management.  His pain seems to be better controlled.  He is taking methadone now. He complains from time to time, but usually goes to sleep and is able to sleep through it.  He is sleeping the majority of the time, but he has been up for a couple of short walks.  Our desire now is for his suffering to be minimal.  Mom is currently at the hospital with him.  If you want to call or text her number is 856-296-3574.  He isn't up to talking much, but I have been reading him letters when he is up to taking the phone.


We are so appreciative of all of the Dear Matthew letters.  We have been so touched by them.  Thank you to all of you out there, that are walking this journey with us....whether you joined recently, or have been here all along.

For those that didn't know...this is a bit of Matthew's humor.  Matthew ended up with 3 cats--I don't know the story on that--but he named them, Death, Destruction, and Annacookie.  So he had, Death, Destruction -An-A-Cookie......

An Open Letter to Matthew-2

Dear Matthew,

My earliest memories are of you being born and coming home from the hospital.  I was a little more than 2...I don't remember a time before...

When you were little, you had a shirt that said, "Here comes trouble."  I used to blame you for everything.  I used to tell Mom and Dad, "Matthew wanted me to do it," when I would get into trouble for something. 

As you grew up, you were always dirty, scratched, and bug bitten.  You loved being outside.  You loved snakes, in fact, I am pretty sure that you are responsible for my fear of snakes......When I needed flowers for my science project, I could count on you to take me into the woods to find some water lilies.  You knew where to find them because you were always off in the "woods" exploring.  

We used to fight, but hey, you were my brother, that was what we were supposed to do, right?  It was usually because I was trying to be bossy, and you were refusing to go along with my authority.  

I will miss you....

*********************************************************************

....Update....Matthew is more comfortable in the hospital, but in order to keep his pain under control he is pretty sedated.  His oncologist came by to see him.  He recommended that we explore the option of hospice at MDA.  This is currently being considered.  He would have to be accepted, but the oncologist felt he would be a good candidate.  

The kids and I were visiting this week, so we go to spend some time with him before his turn for the worse, and we got to say goodbye at the hospital before we returned home.  

We greatly appreciate all of the prayers, thoughts, letters, and visits.  They have been wonderful for Matthew, and we are so appreciative as his family.  Thank you, Thank you...

Closer

Yesterday (Wednesday)evening Matthew started vomiting.  He took anti-nausea meds and extra pain meds, but woke during the night.  Vomiting continued this morning, along with a lot of pain.  The hospice nurse, Dominique came (she's wonderful by the way), and she gave him his options.  She explained that this was disease progression.  It is likely that he has a blockage caused by a tumor.  Matthew has chosen to return to the hospital to try to get some relief from the pain and vomiting.  He was admitted to MDA this evening.  They will work to get pain and vomiting under control.  Mom reports that he is resting now, and is very groggy even when he wakes. 

There are so many things I want to say, but for now, I ask for prayers for relief from his symptoms.  

If you still would like to write a letter, I encourage you to do so.  Time is not a friend.

An Open Letter To Matthew-1

Matthew,

I could see you as an old man...cranky with people, and yelling at kids to "Get off my lawn," but in reality you are a big softy.  There are many things that you have done in your life that inspire me.  You are one of the most selfless people I know (pretty sure it is an inherited trait).

For myself, I remember a time when I was really down.  You asked what was wrong.  I gave you a list of things (most of which you could do nothing about), but also listed that my shoe had broken and I didn't have money for a new pair.  You told me you were sorry you couldn't fix the other things, but then said "But I can get you a new pair of shoes." --And you did....  That was one of many acts....

 There are so many times that you have given when you yourself had so little to give.  You have given people a place to sleep--at times, even your own bed.  When your air was broken, you would let others take the room in your house with the window unit.  You would work 70 hours in a week, and then on your day off go help a friend in need of a favor.  Time after time you gave others everything you had to give...time, money, energy, your shoulder, and the list goes on and on.  There were times we were angry with you because you gave so much.

Your actions were not unnoticed, and I am sorry I never told you how proud I was of you.  You are a wonderful man and a wonderful human being.

Love,
Katie


PS...for the others that are reading this.  My brother is not without flaws :-)  He is cranky and gruff (at times), stubborn, messy, and is rarely seen without a leather jacket --even when it is summer...So please know, that this is not just me putting him on a platform...this is Matthew.