A Celebration and a Sadness

Today we celebrated Emma’s 10th birthday at the PlayStation, a chaotic place, but an extremely easy place to host a party.  I was really proud of her in the way that she interacted and its fun to see her maturity show in such neat ways.  During present opening, she pulled her 3 year old cousin up onto her lap and asked her if she wanted to help her open the gifts.  There are very few even 10 year olds who would be able to do something like that on their own initiative.  But, the kids had fun, and we had fun watching them.

We went from the party to my parents’ house to spend some time with my family and Rebekah, before she leaves to go back to DC.  She will fly out in the morning and it will be a few weeks before she’ll be back again.  Her next trip will be to attend the benefit concert that Wendy Jans is doing at Java Creek.

Today, at the party, it just broke my heart to see my dad.  At one point, Garmai was wanting to go cash in her tickets for a toy and I told her to get someone to go up with her.  She walked past my dad and he tried to talk to her but couldn’t get the words out.  He even patted his chest, as if to say, “I could go with you,” but he couldn’t put that into words either, and she walked right past.  I called her name and said, “Garmai, I think Grandpa was wanting to say something to you.”  He got up from his chair and she figured out he was going to go with her.  So, they started walking toward the front.  I went with, just in case he needed help, and I wanted to take some pictures of my dad at different events with the girls.  He stood up by the counter with her as they waited to be helped.  He couldn’t really talk to her and all the signs with different numbers of tickets was too confusing for him, so he didn’t know what to do.  I stepped in and helped her pick her things, and once she got her toys we walked back and I told him “Thank you for going with her.”  I could see that he felt badly for being useless in the task, and there is little that can comfort him at a time like that, but it is his desire to be there with her that shows his heart, not the amount he is able to do.  He loves her, chose to be with her, even though it was painful for him.  It was her that mattered to him.

On one hand, it breaks my heart to watch Garmai be so unresponsive to my dad, as the pain of losing him has caused her to just totally disconnect from him.  Loss is so hard for each of our girls, in very different ways, but Garmai especially is just shutting him out of her heart, barely communicating with him at all.  She had almost a whole year with him, being his only grandchild, and he was so good with her.  Its hard to watch the girls experience such a pivatol loss so soon after establishing bonds and connections. 

But it also broke my heart to watch my dad, who is really out of his comfort zone in a party of lots of people, where he gets confused and can’t communicate.  And still he sees Garmai’s need for a companion, wants to give to her, and takes the risk, even amidst the ever growing difficulties he has.  I was just telling my husband that its like he is losing his ability to have any impact on the world around him and the people he loves.  He has been such a natural giver and do-er, but now there is little he can give or do that gives him a sense of purpose or impact.  He’s so trapped in his internal world that he can’t express, and increasingly can’t understand.  Tonight was one of those moments where I could see the “dad” I’ve always known come through.  I want so badly to be an encouragement to him right now, especially when he tries and can’t do things, but more than anything it just sinks in how deeply I will miss him once he’s gone. 

For so long he has been wrestling with accepting his illness and diagnosis, and all that comes with it.  But now it appears that he has really accepted this new truth that is his life.  He seems calmer internally.  Most of his day is spent watching tv and resting.  His fatigue is growing and he is going to bed quite early these days.  He and my mom do their daily outing of going to the post office, the bank, and any other quick errands they need to do, but he can’t be out long or he gets too tired.  They try to go for short walks, to get out, and at times he will help her work on setting up her home decor sales, although there is not a lot that he can do and again, his stamina does not last long.  He’s getting a little more unsteady on his feet and looking quite thin, although we try to encourage him to eat, and eat on time, so he doesn’t lose strength or put too much stress on his body in that way. 

Over Thanksgiving we are going to visit the North Shore one more time.  We are hoping that my dad feels up to going, as the thought of not being able to go was very disappointing to him.  Please be praying we are able to make this happen.  We are expecting this to be his last opportunity to go.


Soooo…what did we learn from this?

Okay so let me set the stage…

My oldest daughter, who is a very capable, independent and good-hearted girl, is also quite stubborn, controlling and has (what we call in our house) an “attitudie issue at times.  Ya know, the good and the bad side of our strengths.  Well, at this stage in the game, her lack of good anger control skills and the way her attitude permeates many of her interactions…grrrrr…ya know, God love her, but I’d like to whack that little behind at times!

Well today, in a moment of discipline, and in her moment of rage responding to that discipline, I hear her slam HARD her bedroom door.  Then I hear screams for mom…like blood curdling screams.  It took me a few second to differentiate fury screams from something is wrong screams.  But I thought I should check just to be sure something didn’t happen.  I walk in the door and see her holding her already swelling and blackening thumb in the air.  Apparently she had gone up to her room, stood in her doorway, had her hand in the hinge side of the door (without knowing her thumb was in the part of the door that was going to slam, she grabbed the door handle and (because she had a message to send to me downstairs) just yanked that door shut hard.  Her thumb got squished in the hinge side of the door and the door actually latched, so she had to turn the door handle to unhook the door and open it.  Her thumb instantly began to swell and turn purple.

Ya know, some people may have no problem with what I didn’t next, but for me, it wasn’t one of my most proud moments of parenting.  I was still coming down off of being angry at her and when I saw her thumb the first words out of my mouth were, “That’s one of the consequences for slamming your door!  Why do you think Daddy and I tell you not to?”  In looking back I told Emma how easy it is as a parent not to take those moments and say “I told you so!”, and forget that the most important thing is how you are doing.  We agreed that the “This is a good lesson to learn in whether we slam doors!” could have and should have happened once she was physically taken care of.

So, the ER visit showed no broken bones…YAY…its her writing hand!  But so much blood had pooled up under her skin and nail that they needed to drain it.  The doc lied and told her this would just be a pinch, but instead he jammed this needle half way into her thumb.  He kept apologizing afterwards and said he does that to keep you calm so kids don’t freak out by him saying, “Now this needle is going to hurt like hell!”  So, she got lied to, and lived to tell the tail.  That was to numb her thumb.  Then, they got one of those handy little burning tools that can prick a hole through your nail.  AMAZING!!!  It gets red hot instantly and it just melted into her nail.  Within about 2 seconds, as soon as he broke the underlying skin, blood shot out of her thumb all over the blanket on her lap.  I think it freaked her out at first, but then it was something cool she could tell people about.  It just kept bleeding and bleeding and bleeding…  So, they sent us home with Motrin and bandaging instruction and best wishes.

Our $100 ER copay became worth it when I heard her say, “I am never slamming my door again!”  I don’t expect those words to remain a reality till she’s 18, but if it can buy us some time right now and at least put off the door slamming until she’s in JHigh…when most of it starts anyway. 

I have to say though that I probably felt a little too much enjoyment each time she had to tell someone new how the injury happened.  I think she had to repeat it 5 or 6 times.  Poor kid, the last times she was asked she just looked at me and said, “Oh, you tell it.” 

Its a hard way to learn a hard lesson!  So what did we learn from this?  There must be better ways of handling anger/rage than doing something destructive that could hurt me, something that belongs to me, or someone else.  AKA -slamming doors isn’t a good idea.  And I learned that saying I told you so might be better saved for another time…not when someone is still screaming from the injury! 🙂  Oh…we’re always learning aren’t we?

MRI Update

Dad had an MRI this morning, and an appointment with the oncologist immediately following.  What we found out is that this MRI did not show huge variances from his last one.  There is one spot on the bottom of the surgery area that went from 9mm to 30mm and held more dye or color (?), but he was unable to determine whether that was glioblastoma reforming or merely post-surgical changes…similar to scar tissue, I’m assuming.  The increase in confusion and aphasia (difficulty initiating thoughts through speech) over the past several weeks, when it comes to this disease, is not considered rapid.  Rapid in this disease is between a day and a week…today he’s speaking, tomorrow he’s not.  But even the significant increase over the past few weeks is representative of the normal decline from the illness.  From our understanding, that means he will not improve cognitively from this point.  Any struggles he is having speaking, getting thoughts out, understanding and processing information, general functioning, etc., will grow increasingly more difficult over time. 

Right now our plan is to do one more month of chemo and then rescan after that one month time frame, to see if there are significant changes.  If changes are obvious, we would then need to consider treatment with the meds that Kennedy received, a stronger chemo that would not maintain cognitive functioning, but would prolong life by a few months. 

Coming away from the appointment, I feel kind of numb and angry.  I hate this disease.  There are no guarantees with glioblastoma, except the prognosis.  Everything else, between diagnosis and the inevitable result, is a wait and see type of thing, and that’s really hard to go through.  But, I think the hardest thing for me though, in all of this, is watching my dad (who was capable in SO many different ways) struggle in even the basic areas of life.  I want for him in these last months to feel good about himself as a man, as a husband and a father/grandfather, because he was a rare man, who, in spite of all of his very human failures and struggles, never stopped striving to become a better person.  He has so much to be proud of, so many strengths that he can’t use or access right now, and it’s hard to think he doesn’t see or feel that right now.  He was never perfect, but never gave up trying or encouraging others to keep growing too!

So, I just pray that God is whispering extra encouraging things to his heart, so he never forgets the kind of man he is and has been!

Back again!

Long time, no blog! 🙂 I have just not had the motivation for long blog postings, so sorry if people are feeling somewhat out of the loop! I’m currently at the hospital, kids with Travis, just hanging with my fam. Amazingly, we’re not here for Dad! Mom has been having some uterine problems and she just had a hysterectomy this morning. It was a quick scheduled procedure because timing was important. Josh starts school this next week and we needed him available at home with Dad…and mom. So, she’s like 5-6 hours out of surgery and doing well.  Dad had a seizure this afternoon in her hospital room, probably just from the stress of having mom in surgery (and he was probably dehydrated a little), but it was a short one and, for once, my mom wasn’t the one trying to assist him.  I was there and the nurse was too, so I was able to stay behind him and get him laid down.  Its always startling for him, but he’s doing good now.

He’s started speech therapy up again, after feeling frustration over trouble finding words.  Its good practice for him to do therapy ongoing, and he was the one to decide to go back, which is great!  No regrowth that we know of yet.  I don’t think he seems more symptomatic, and regrowth is always symptomatic.

Travis sent me away last weekend to a catholic monastery for rest and to read The Shack.  He asked me if I’d be willing to go away and read for a couple days…hmmmm…not quite sure…okay!  It was wonderful!  Not only was the monastery one that is primarily silent, so the peace and quiet was amazing, but I really enjoyed The Shack.  I hate getting on book bandwagons, and I resist them if at all possible (actually, I don’t read much anyways), but I’m glad Travis encouraged me to read this one.  The author paints such a tangible picture of God, its hard to walk away without a different view of spiritual interaction.  And, he’s a good author, which makes a big difference.  The sad thing is that within an hour of being home with the fam, I’ve had almost a non-stop migraine.  We’re working with the kids on chaos and noise control, as they are three EXTREMELY energetic girls, but who wants to say my family gives me headaches!  I’ve lived with earplugs in since Sunday, which just dulls down the noise.  Kind of ridiculous!  But, the girls I think are sincerely trying, they are just loud and intense kids.

My parents continue to make it, sometimes hour by hour, financially.  The stress weighs a lot on my mom, but so far God has not let a bill go unpaid.  Thank you again, to those of you who continue to give to my parents and continue to offer support in many differing ways!  My mom’s home decor sales have been helping, and we just sold our first item on ebay!  First item going out the door is a 14 foot Christmas tree that we put up twice at the church…then decided that two full days to set up and decorate was a tad overwhelming just to have to take it all back down again a few weeks after Christmas.  After getting through our first item (thanks again to those who’ve offered to help…we haven’t had much time to do a lot on ebay), we are hoping to list many more of their more expensive items!

A side note my mom wants me to mention…if you’ve emailed my mom at all, their computer seems to have a mind all its own, and has revolted against the email world, so she’s been unable to access it or send anything!  If there is anything urgent please just call her directly.

Okay, I’m going to sign off for the night!  Want to chat a little with the fam before I have to head home for the night.  Hope fully it won’t be so long before my next update.  🙂 Enjoy your evening everyone!

August 2nd Update

Parents Sale 472

We had close friends come in town last weekend and it was wonderful!  My mother got pampered, with massages and naps two days in a row, their kids did a great job with my girls, and my dad and brother had some new guys around for their “boy time.”  Travis had to work 12 hour shifts while they were here, so he didn’t get as much hang out time, but the Napiers have been and will always be some of our favorite people to be with!  It came at just the right time too, because my mother really needed to rest. 

My parent’s business has really dropped off, to the “scary” point financially.  God has been extremely faithful with help coming hours before a bill has to be sent, but I truly don’t know how we’re going to do it most days.  We’ve had a few people express interest in the building, but none have panned out yet.  We haven’t actually hooked up with a realtor, and we’re hoping to not have to, as that would help with the financial end of things.  So, keep passing the word that its available!  My mom’s sales have been helpful, and she’s planning to continue offering the sales as long as we have things to sell!  Anytime you see the sign out in front of the church, she’s open!  We’re going to post some of the things on ebay too, to broaden the scope of people to sell to.  She’s trying to keep it like a home decor shop, instead of a garage sale feel, and that helps her be able to offer her things at prices they really are worth.  If anyone has anything that might fit in with the mood and feel of a shop, and you’d like to donate it for her to sell, just give her a call. 363-7171.  Or come by and shop!  Its a great way to give a donation and walk away with something nice!

My dad has had a couple more seizures, but we have no evidence of regrowth yet.  The seizures are extremely draining and scary each time they happen, for him and for my mom.  I can’t recall exactly how many seizures he’s had yet, but every single one has happened with someone there with him.  I’ll try to update a little more later tonight, but I’ve gotta go start dinner!  The kids are growing imatient and hungry!  Life is much happier with full stomachs! 🙂

Reasons to celebrate!

Well, I’m up too late, AGAIN, and thought I’d post a quick blurb on the ole’ blog.  If you’re not on facebook let me update you…  Dad’s MRI came back good.  There were some “slight variances” to this MRI, but nothing substantial enough to even determine if it was regrowth or just changes in his brain “post-surgery.”  The doc thinks his last seizure (last Thursday) happened because he missed one dose of his anti-seizure the day before.  Amazing how much of a difference one dose can make!  Mom is still pretty shaken up from this last seizure.  Everything turned out fine, but actually going through the seizures is not only exhausting but also traumatic each and every time.  Those who live with seizure disorders, and those that live with people who have them, know what this is like!  On one hand I can say I’ve been fortunate not to have had to witness a seizure first hand, on the other hand I can’t quite “know” what my mom is feeling because I haven’t seen one.  So, just keep my mom in your prayers, as well as Joshua and my dad, as they are the most directly impacted by this all. (Joshua officially moved in a couple of weeks ago)

The sales have gone well.  My mom has held two weekends of home interior sales and that has helped to supplement their Air Management income.  Pray for their business as well!  They’ve actually sold nearly every big item they had, so now she’s keeping her eyes open for other things she might be able to sell.  She’s fantastic at putting these sales on, as she has such a decorative ability!

Two things we’re looking for right now: The first is a baby monitor.  If anyone has one they aren’t using, my mom would like a way to communicate with Joshua if a seizure should happen, as Josh can’t hear anything from his room.  The second is someone who could volunteer their time to do/help do their taxes.  I think its going to be a tad bit complicated, given the situation, but my mom just can not afford to hire someone to do them.  If you know of anyone, please let me know!

A quick confession before I say good night!  I’ve had pretty bad TMJ/jaw pain for years, and I’ve been working with a neuromuscular dentist, wearing an orthodic (a retainer/bite plate of sorts), to help alleviate pain.  Its been helping a lot!  When I got my first one I was told that these wouldn’t break for anything (His exact words, “You could practically drop this off the empire state building without it breaking.”), but within 48 hours I had to take a broken one in to my dentist because our loveable little 70 pound basett jumped up, grabbed it off the table, and took a bite.  So, they fixed it!  Then, while at the U of Iowa hospital the first time around with my dad, it got thrown away on a tray in the cafeteria, never to be seen again!  So, they made me a new one.  No kidding, less than 24 hours after bringing home my second orthodic, my crazy dog got it again!  I swear he hunts for it!  He bit it into three pieces and cracked a section too.  I superglued the pieces and the dentist had to fix the crack so it fit right.  Then, right after the North Shore trip, I lost it AGAIN!  I was so humiliated I didn’t even call the dentist!  I had no clue where it had disappeared to, but we couldn’t afford to get a THIRD one made, and I couldn’t bear showing my face at the dentist again.  So, I’ve been living without it since, and just today I could feel the beginnings of jaw pain that shoots up over my eye and would soon begin causing migraines, like before I had the first one made.  We decided we would keep the two bags of trash we threw out after the North Shore, just in case it got thrown away on a plate or something, and we finally got around to going through the trash tonight!  I thought my heart was going to stop beating when Travis walked into the house holding my orthodic in his hand!  It was in a small trash bag in a bigger trash bag and Travis felt it as soon as he picked it up!  I ran up to Travis and jumped on him, celebrating!  I’m as happy that I don’t have to face my dentist without it, as I am to actually have some relief.  So, if you see me wearing a little purse everywhere I go, its my new orthodic holder that is going to be strapped to my body!  Its sad it has to come to this, but I’ll be damned if I lose that crazy thing again!!!

All right, that’s about it for tonight!  I need to grab a snack and head to bed!  I have to take our little thief to the vet tomorrow and get his nails trimmed…or buzz sawed…whatever they end up having to use.  We’re such neglectful dog owners.  He gets all the love and play in the world but can’t seem to get good nail care to save his life.  The girls asked today if the vet was going to paint his nails as well!  And they were serious!  🙂

Good night!