Funeral info & Heaven info.

Sorry, this is very late now, almost too late to really be helpful, but for those of you who are still wondering, my Dad's funeral is tomorrow at 1pm.
It will be held at the same place that Joel's was: Wheeler Funeral Chapel, 211 Regent Ave. W.

I kept meaning to put this information up, but somehow never did.  I'd like to tell you something about something, but I have no idea what to say about how I'm doing, or my Mom is doing, or whatever sort of stuff.  My Mom might not like that, so I guess I better tell you that my Mom is ok, and that she is a strong lady with a deep faith in God.  And also that any support for her will be appreciated... because obviously things are going to be tough for awhile.

I continue to be surprised by "how well" I'm handling things, and also by the various "meltdowns" I have had.  :)   You tell me what that means?

Just last week I was having some panic/anxiety attacks.  Racing, pounding heart, feeling faint, that sort of thing.  Not that those really say "how well" you are handling things.  I think situations of such stress and emotional response call the body to these sorts of reactions, and I don't feel bad about having them.  At the same time, they took me by surprise, and made me face the fact that my body is telling me "be careful because you've almost had enough." 

And then, in between all the calmness and facing things and being "reasonable"  (ha ha, had to use my favorite word, haven't used it in so long), I have had a few "take me by surprise" sort of meltdowns.  I guess that is not strange.  Yet my emotional reactions continue to surprise me.  Man, I thought I was so self aware!  Maybe not!

Caeden is good at catching me crying when I think he's not noticing.  The other day tears were silently running down my face as I prepared supper, and I guess he noticed a little sniffle or something, because he looked up from his Lego and said "Are you crying about Grandpa or about Joel?"  And I said "Caeden, I really don't know."  And he said, with a note of slight 4 year old-type exasperation "You have to choose, it can't be BOTH."  And I said "Yes, it can.  Oh yes, it can."

One of the last things I spoke to my Dad about, on his last Friday morning with us, was to tell him about a conversation with my son.   We were driving from the hospital, Steve, Caeden and I, and Caeden was asking me questions about heaven.  Of course, the questions were about details of 4 year old importance, though I can no longer remember what the specifics were. 

I confess, I have often wished that the Bible was more specific about what it is like after we die.  Oh, I know we likely wouldn't be able to understand much about it, in our present state.  But you know, the way Jesus used parables and extended metaphor-type comparisons.  Maybe some explanation of that sort.  I don't even know what I'd like, just more information in general, I guess.  Even while I know that God has promised that being with Him is going to be pretty great.  Still, it is the unknown...

But I framed an answer for Caeden, one I guess I always knew, but for some reason it just really hit me as I was saying it.  I was giving the answer to my son, but I was also giving the answer to myself.  I told Caeden that we really didn't know much about heaven, because Heaven was a surprise for us.  I told him to remember getting his birthday presents and how he never knew what was inside of them, but he was always so excited to see the wrapping paper.  He couldn't wait to unwrap them.  In fact, he obsesses over them days before he receives them.

And heaven is the same thing, I told him.  It is a gift God is giving us, but it is a surprise gift.  We know it will be good and exciting, and God's not spoiling our surprise by telling us what it is before we unwrap it.  And in my mind's eye, I saw how excited, in turn, Steve and I were to give Caeden a gift.  We could never wait to see his face when he opened it.  In fact, this joyous feeling perhaps prompts us to give a few too many presents than we should!  And I thought of God, waiting in heaven, just like a parent, to see our faces when we get our gift.

And I thought, well, I wouldn't want to spoil my surprise after all. 

I shared this story with my Dad on Friday morning, and he seemed to really like it.  And now he has opened his present...

Another "Joel Garden."

I have some blogs to write, I know, but for now, I'm taking it a bit easy...

So I'm going to put up some pictures here of something special to me.  I have make a "Garden" on Joel's grave.  But that wasn't quite close enough for me.  So I wrote quite a while back that I was also planting his name in my front flower bed.

And now it is finally starting to look like I had conceived in the beginning.  Still not perfect.  I'm not a pro gardener or anything.  But I think you can still get a sense of it from the pictures.  And they were taken a few days ago.  It actually looks even nicer now.  So maybe there will be more pictures soon.

As I said, it's not perfect.  But when I see it, it feels like my heart out there, blooming...

Don't know if you could read that, it's clearer when you see them in a row.

If you still can't see it, then here are some of the pretty flowers in the "Garden," and I'll put up better pics another time.  For now:

The Final Chapter of My Dad's Life Here.

My Dad died today around noon.  His family was with him.  His breathing had changed in the early part of the night, and continued to vary into the day.  Just before noon, he partially opened his eyes, as sometimes seems to happen in these cases, as if he knew he was about to go.  We all stood around him, and we took of the O2 mask so my Mom could kiss him and he could get better "hugs."  We kept telling him how we loved him and that it was ok to go home.

And just as my son did, almost three months ago, my Dad's breathing slowed, and became sporadic.  After a few minutes, his breathing died away completely, and he was gone.

I was at the hospital last night, by about 9pm.  He still was responsive for a little bit at that time, but when he fell asleep, he slept deeply.  He did not cough or stir during the night.  He was, finally, very peaceful in the end.  He even told my Mom that evening that he felt really at peace. 

He discomfort seemed to end sometime that evening.  He fell into a deep sleep. He was not responsive, nor did he move, until the last few minutes of his life when his eyes partly opened.  When we took off his O2 mask, an expression flitted across his face, he seemed aware it was gone, and I think he was glad.  He knew he was not going to need it any longer.  I think he was aware of the kisses and hugs...

I will, of course, post details about the funeral, and etc., at a later time.

Thanks for all the prayers.  I am so thankful that my Dad could good so peaceful and gently at the end...

Update on my Dad

Ok, there is no good way to say this.  So here it goes.  My Dad has not been doing well.  Chest X-rays revealed that the reason he is coughing and struggling to breathe is that one of two things (or both of them) is happening.  Either my Dad has pneumonia, or the leukemia has moved into his lungs...  Remember the first bout with leukemia, it was not only in his blood, but had started to localize on a spot on his neck?  Well, the doctors believe that this might be what is happening in his lungs...

The antibiotics targeted at pneumonia did not seem to help, so if it is pneumonia, it is likely a very resistant strain.  They have upped my Dad's chemo meds DRASTICALLY because on the low dose chemo his WBC had jumped from about 16 to something like 27 overnight.  They have upped the chemo meds drastically, not in an attempt to "cure" my Dad, but because a WBC of 27 means a lot of discomfort for my Dad.  Yes, it is chemo, but it is really for comfort's sake.  That is one way that leukemia is a bit different from other cancers.  It's chemo, but it is more in a palliative role, just to try and keep him comfy.

The doctors who spoke to my Mom this morning told her to phone family and let them know.  Of course, they can't really predict much, but they estimated that my Dad likely had about 3 or so days of life left, the way things were going...

It's been a tough week.  I know I keep saying this, but that is because I keep having to see it: it is very hard to watch someone you love feel so miserable.  My Dad tries so hard to be brave, but I can clearly see that even with all the meds, he still feels about the way you and I do when we lie aching in bed with a really bad flu, unable to get really comfortable enough to sleep properly.  You know, that really bad flu where you start to wonder "Do I need to make any last minute changes to my will?"  Then add in that he was on 10 l. of O2 and he was still gasping and working so hard to breathe...

My Mom said that he was breathing a bit easier by evening.  Don't know if it's just because evenings are usually better for him, or if the chemo meds were able to clear out his lungs a bit.  Don't know.  I don't even care, really.  I just want my Dad to feel comfortable...

Tonight I went to see Joel's grave.  Maybe this seems oddly morbid, but really, when you are told your Dad has days to live, maybe it is appropriately morbid.  I saw Joel's grave, and it still looks lovely.  Being as it is out in nature, some flowers continue to be chewed on.  For sure, it's not as nice as the ones growing in my flower beds here.  But there were still lots of pretty flowers, and some of them have been growing so nicely.

And right beside it, the place my Dad will be.  I just wanted to walk around and think, and also to not think.  Think about how pretty and peaceful and nice it was.  Think about how the graves would be side by side.  Think about how property values on my Dad's grave would go up, because he was next to the nicest place on the block!

And not think about hospitals, or medications.  How my son would not really be able to remember his Grandpa.  Or how my Mom would cope.  Or any of the other implications.

But I will ask you to keep praying.  Please pray for my Dad's comfort.  Please pray for that especially.  And then please pray for my Mom, and for wisdom in how to support her.  I've known her all my life, but I still feel a bit at a loss at how to help her through this...  So please pray.

Thanks you.  Very much.

Tough Day at the Office and I Don't Even Get Paid For This.

How's that for a self-pity sort of title?  So, on to the more frivolous.

Most of our gifts in this house are wrapped in Christmas wrapping paper.  Yup.  Because I have to save the occasional still "good" gift bag in case of a gift for someone outside of family.  They get a gift bag, because they might not understand why Snowflakes are on their birthday gift in July.  And Christmas wrapping paper seems to be the only kind of paper I can get the brain power up to actually purchase...  It's funny how when I buy a gift, I pretty much NEVER think "Oh, yeah, and some wrapping paper would be good."  Instead I think "Chaching, I managed to BUY this lovely gift BEFORE the event in question!  How exciting!"

Truthfully, I have never been super good with wrapping paper sort of details, but the last years have not helped me out any.

So, today, the day before Father's Day I realized that I had purchased gifts (Yaaaaay!) but have only Christmas paper.  Oh well.  Frosty it is.  I'm proud of myself, because I'm thinking of actually wrapping the gifts 16 hours ahead of when I'm supposed to give them.  Bonus.

I'm writing on this happier, sillier note, because it's been a tough day for me so far.  Oh, no real reason, other than I lost my son not even 3 months ago, after 2 years of seeing him deteriorate, and now my Dad is feeling crummy in hospital and for Father's Day, even.  Did you detect a note of self-pity in there?  Well, I did.

And I am very easy to upset these days.  Taking even myself by surprise (or maybe ONLY myself) with my "emotional instability."  I'm irritable, hot-headed, easily frustrated and impatient.  I have that "only one nerve left" sort of feeling, and seriously, there IS this eye twitch, but it is internal.  I can feel it though.  Volatile, I believe, would be the word for it. 

By one o'clock to day, I returned home from the hospital and then I lay down in bed.  I didn't even really sleep.  Sometimes I just do this thing.   I lie there and just relax as my brain whirls with so many thoughts, ideas, etc.  Then slowly, slowly it all unwinds.  Finally I get that "Hmm, where was I for a few seconds?" feeling and I feel much better.  Today I lay there for an hour to get to that point.  I never actually slept.  But once I got that feeling I could get up again to "face" things.

So now, here is what you are really waiting for: an update on my father.  Today his WBC were at 27.  (From 87 just a couple of days ago.  Normal is between 5-12, I believe).  My Dad was feeling pretty sick yesterday, and tired.  He slept a lot. 

Let me back track a bit.  They started him on hydroxyuria to supposedly start taking down the WBC.  But the dose they started with didn't work, and the counts kept going up.  They added in the second med (but I won't be able to spell it) and his counts only dropped from 87 to 85.  When you need to get below 30, this is not really progress.  The second drug they used was one of the two my Dad had the last two times, just at a lower dose.  If I understood the doctor's explanation, the leukemia cells now might be sort of resistant to this drug, which is why a lower dose did almost nothing.

So they really, really upped his hydroxyuria to try to get things under control.  Thing is, they had to up the dose so much, that it was basically back almost to what would be a "high dose" and we know that his intestines can't handle that level of toxicity.  So they were watching him closely for signs of inflammation.  They could see signs that his intestines were getting stressed, but he was still able to absorb fluids and so ok.  But, of course, this is not a good treatment option for long term.

Which is why, once his WBC came down below 30, they stopped the hydroxyuria completely.  Now that the leukemia is more "in control," they can try a few other drugs that my Dad has not previously used.  These are oral meds, so he will not need to have needles.  One good thing.  Not that needles are a big deal to my Dad, particularly with all the other, worse stuff, but still.  They hope that the leukemia will not be as resistant to these new drugs.  So they hope that the low dose treatment of these drugs will be able to hold the leukemia below a WBC of 30, or even bring down the count slowly.

They needed to take the risk of the high dose of hydroxyuria, because my Dad was already on it, and they needed to get things under control quickly.  Now they know that it works to bring down his WBC.  So they have that course in an emergency, in the meantime it has bought them time to work with other treatments that are less toxic to my father's battered body.

Leukemia is a nasty disease, in case you didn't know.  (Well, I'm sure that extends to almost all cancers.)  It makes you feel sick.  You get sores in your mouth.  You have fevers and aches and pains.  You are very, very tired.  You can get rashes.  You lose your appetite.

And it is nasty because to treat it, you gotta take poison.  And the chemo can make you nauseous, give you horribly loose bowels, cause sores in your mouth, give you fevers, and make you very, very tired.  See much difference between the two lists?  I don't. 



We know when it has been a bad day for my Dad.  We can tell when he is just feeling so awful.  Because on those days he starts talking about funerals... well, his own, anyway.

Yesterday he was talking about them.  Today he didn't.  Since they stopped the hydroxyurea, my Dad was feeling better.

Do you know how many sick people there are in this city?  In this country?  In the world?  Man, that is a heck of a lot of sick people.  And it makes me feel so sad to think of other people, like my Dad, feeling so much pain and discomfort and discouragement that they are mentioning funerals.  And makes me even sadder to think how many of them, unlike my Dad, are afraid to die.   So they are thinking about death, even as they are fearing it...

All right people, what am I saying?  Don't forget Jesus' ministry to the sick, or how important it was to Him that we visit them.  There are lots of good places to volunteer, but don't forget that hospitals are some of them.  Of course, people with illnesses that affect the immune system might be off limits for visitors.  But there are plenty of others.  I'm just saying...

Reality.

Well, reality sets in.  My Dad is, of course, sick.  It is painful to see that.  I hoped that he'd be feeling better, with the low dose chemo, than he currently is.

Of course, he hasn't started the full dose of chemo until today. 

Still, it was disappointing when he felt sick on Sunday, not due to side effects of hydroxyurea, but with a "leukemia fever."  When he went in to get his blood checked yesterday, his WBC numbers were UP, not down.

So his oncologist immediately doubled his dose of hydroxyurea.  And today my Dad starts on the real deal chemo, just at a low dose.  He'll be giving himself a shot twice a day for ten days, as well as continuing on the hydrox.  Then he is off the shots for 20 days, then back on for 10, etc.

I'm really hoping that now that the shots have started, he'll be able to feel better.  I think my Dad was very discouraged to be feeling so poorly.  He had hoped to go to church.  He had hoped to feel better for his anniversary yesterday, because the last two anniversaries were spent sick in hospital.  He was not in hospital, and he did manage to eat some of the food, but it is difficult for him.  His appetite is a bit low, plus he is supposed to drink a minimum of 2 l. of water a day, and this does hamper your appetite as well.  And of course, it was very discouraging to see that his WBC count was up...  I'm really hoping that he'll be feeling enough better for Father's Day that we can take him out for that mini-golf he's been looking forward to.

My parents looked up the stats yesterday, for this type of leukemia treated with a low dose of chemo.  The average length of time it has given people is 8 months.  Numbers are such a double edged sword.  In a sense, there is hope.  8 months.  That's better than 4.  It's surely better than 2.  And of course, this is an average.

But then it kinda hits you when your mom and dad have their anniversary meal at your house, and your dad is feeling a bit discouraged, and he's low on energy, and his appetite is a bit low and you think, "this is probably the last anniversary they will have together."  It's hard not to feel sad, and even a bit disappointed yourself. 

It is HARD to watch someone you love be SICK AND THEN DIE.

And it is hard, very hard, to do it off and on for three years, not with one, but with TWO people you love very much.

Sometimes the burdens feel too heavy to bear.  That is how I felt this morning.  Like there were too many burdens and not enough hands or a big enough backpack.  But I had a talk with God.  And He gave me His promise "My yoke is easy, and my burden is light."  And so I gave my Dad up to Him, and some of the other stuff too.  I'll just carry the stuff He has for me TODAY, and I'll let Him carry all the stuff from tomorrow onward.

I'm still pretty sad, but I feel lighter.  It is enough for today, to deal with the evil it contains.  It's enough, I don't need any more!  And the Lord is here.  I can "do" today.  Now I'm going out to water some flowers...

A thousand sleepless nights.

So far, the third month after Joel's death has been the hardest...   I guess that shouldn't be a surprise.  Normally you'd being to miss someone a lot more before that feeling would die away.  So perhaps next month, I will miss him even more than I do now.

Joel's death is huge sort of "milestone" in this journey, of course.  Not a milestone I was happy to hit...  But not the start of the grief journey.  By a long shot.  And so, the grief did not start three months ago.  It seems a more continuous journey to me.  Which is why, as I have already said, this doesn't exactly seem as hard as I thought it would be.  Not to take away from how hard it really is.  But because it was already so hard.  And the last month of Joel's life was very, very hard.  I think "the burn" of that month is partly why after he died, I was surprised by how it wasn't harder.

There were still some good memories in that last month...  I can't say it was all bad.  It wasn't how I wanted the last month of Joel's life to be.  But we can't always have what we want.  And I know that there was a trade off.  Because I would have reacted differently to that emergency trip where Joel's lung was full, if the previous month had been perfect.  I think I would have wanted him intubated...  And it would have been much harder to have to let him go...

How is that.  The last month of life was poor enough that it made it easier to let him go...

But still, I miss him in a way that is hard to describe to people who haven't lost a child.  And I find that I grieve, at times, not only the death of my child, but the whole entirety of the last two and a half years.

Here are the words from a song, by Laura Story.  The song is called "Blessings" and I'm sure many of you have heard the song.  A friend put it on her facebook, but I didn't bother listening to it, then one day I heard it, words and all, on the radio.  It's worth listening to, to get the full effect.  But the words say the most.  So I'm putting them up here, well, excerpts of the word, anyway.

We pray for wisdom
Your voice to hear
We cry in anger when we can not feel You near
We doubt Your goodness, We doubt Your love
As if every promise from Your word is not enough.

Cause what if Your blessings come through raindrops?
What if Your healing comes through tears?
What if a thousand sleepless nights are what it takes to know You're near?
What if the trials of this life are Your mercies in disguise?

What if my greatest disappointments, or the aching of this life,
is the revealing of a greater thirst this world can't satisfy?

I know a lot of people who carry hurts, hurts from abusive parents, from difficult marriages, all kinds of hurts.  And they pray and surrender it all to God.  But so often that one surrender is not the healing.  We'd sure like it if we could just get the healing, with out taking every little bit of the hurt to God and naming it before Him.   But truly, sometimes doesn't the healing come THROUGH the tears?  It is each tear we cry before God that IS the healing.

And I know that this is so with Joel too.  I must cry every tear, because each tear can bring me to His feet, and into His arms.  God can sew my heart to His, tear by tear by tear.

You know, sometimes a thousand sleepless nights are what it takes to know He's near.  And Joel's life was just short of a thousand nights long.  About 960 nights, give or take a few.