Ever get to a point where you know it’s been too long since your last post, and yet, there seems to be so much to recap, you don’t know where to start?  Yeah…  It’s been a while, so this update may go on for a bit.  If the month of March was completely forgettable, the month of April was the opposite.  We started with the very low point that March left us, however climbed aboard and rode a wave of renewed energy through the end of the month of April.
At the beginning of April we started hospice care.  We were assigned to a team made up of nurses, social workers and volunteers.  Every few days we have someone from hospice stopping by to check on Stef.  Her medication routine has been through a few alterations, however we were able to dial it to such a degree where Stef came out of what I like to think was a narcotic cloud.  She was alert.. Got her appetite back.. Got some more energy.
Nearly right after my last post – think it was around March 31st, Stef’s sister Courtney and I observed that her catheter (in place since Valentines Day) had essentially stopped draining.  What could this mean??  Well – no problem for us.  An in-home nurse had briefed me on the process, and having just stayed in a Holiday Inn Express, I felt we were ready for a little challenge.  Court looked up instructions online, as a refresher, and through some tense moments, we successfully flushed and cleared the line – restoring Stef’s comfort.  ….. It really is the little victories.  We truly did feel like we accomplished something significant.  A few nights later, I was faced with the same thing, only this time was solo.  Like a seasoned vet, I successfully took care of the situation once more, however this was unfortunately a precursor of things to come..
..Friday April 7th.  With decreased catheter performance, it was time to change the foley.  The hospice nurse was ready, however Stef was highly uncomfortable. A few failed attempts, and Stef was getting pretty emotional and uncomfortable.  So… We got our first ever ambulance ride!  We were off to the local Anne Arundel Medical Center, where we were seen very quickly in the ER, some sedation, successful foley change, and a few hospital hours later, we were home..
Saturday April 8th – there were two events.  First, Violet was going to have her First Communion. Then, immediately after the Mass, our Parish at St. Andrew by the Bay was conducting a prayer vigil for Stef and our family.  Saturday was going to be a special day.  With hospice started, we had acquired a hospital bed – which was centrally located in the middle of the living room.  This saved Stef from going up and down the stairs.  Around 2am on the 8th, Stef woke me up.  I was flying the couch, which was next to her bed, and she was essentially standing over me, asking me to help her.  I woke up completely startled, nearly jumping off the couch.  My perspective – she hadn’t been up on her own for weeks, we’d just spent much of the prior evening in the ER, yet there she was standing over me.  From that point, through the day, she had a renewed level of energy..  I thought it had gotten in to her head about Violet’s First Communion or the prayer vigil, and she was zoned in.
Violet’s First Communion was terrific.  She was perfectly behaved and beautifully dressed in a dress that Stef had picked out months before.  The prayer vigil was emotional and very meaningful.  It was absolutely amazing to see the upper hall packed.  It was wonderful.  I can’t express the THANKS properly to everyone who organized it and of course all those who attended it.   Afterwards, we stood outside as many waited to say a few words and/or share a hug with us. It was deeply moving for us.
Sunday April 9th – at roughly 2am, Stef woke up again… I woke up where one of my legs was completely asleep, and as I jumped up reacting to Stef, I literally fell over – straight to the ground – twice.  Was this 2am thing going to be a habit?
What were these 2am wake-ups for?  Well – various things – getting her more water.. meds.. a snack.. anything really.  So I was absolutely pleased to help, as she was scaring me by getting up on her own!
Monday the 10th – she looked at me, and asked, “When are we going to Disney?”  I looked at her like she had two heads.  “Huh??”  She was serious.  So Tuesday morning I booked the trip where we’d depart on Saturday the 15th and come back on the following Thursday.  Even though I literally threw the plan together on the fly, Stef’s parents as well as her sister Courtney and niece Chloe were able to go as well.  In the interest of post length – I’ll spare the Disney fun from this post – and perhaps just post a few pictures separately.  Ultimately it was a wonderful trip, that while there were challenges, it was well worth it for the smiles.  I do need to acknowledge folks who were unbelievably generous and provided us with gift cards or cash for the trip.  Really, we were floored with the outpouring of love and generosity.  Absolutely amazing!
The week prior to Saturday the 8th – she had started a new medication – a steroid called dexamethasone.  This was started for a few reasons – energy, focus, inflammation, and appetite.   I’ve since referred to this pill as “the magic pill,” and am so thankful for what it’s help accomplish – which is essentially restoring Stef to being lucid and interactive.
Coming back from Disney World, we returned with Stef’s legs quite swollen.  Seems to me that a combination of being in a wheel chair for extended periods of time, the heat, and diet changes had created quite a fluid build up.  This actually continues to persist, though we are now coping with it while utilizing a “water pill” and compression socks.
Some other interesting new things.. Stef is enjoying whatever she wants to eat, whenever she wants.  I’m not sure if it started in Disney, when we walked through the gates of Hollywood Studios and she looked over and plainly said, “I want a coke.”  (I don’t know that I’ve ever seen her drink a coke!), or if it was just prior.  The radical diet change that she started a few years ago – where everything was organic, no sugar, no dairy, etc – that’s a thing of the past.  Back on the menu are things like ice cream, cheesecake, chocolate, sodas (mostly ginger ale), cheesesteaks, cereal, and pop tarts.  Pop tarts??  Turned out I bought some to take to Disney – for the kids to have in the morning for a breakfast snack.  Stef discovered she liked them, and they’ve since become a favorite midnight snack.  Yep – every morning, either I or the kids are finding an empty pop tart foil laying somewhere near Stef’s bed 🙂
The most recent weeks, after Disney, they’ve been up and down.  Stef has tried to get out of the house, but sometimes is too uncomfortable.  She’s been out to see each of the kids play soccer at least once.  She quite enjoys that, and I know that the kids love her watching.  Violet’s team – my goodness – one of our friends that I coach with – he and his wife (the Russ family) outfitted the whole team with teal socks and headbands.  It was so wonderful to see a team of 7/8yr olds running up and down the field in teal for Stef.  I’ll also acknowledge the Erbe’s on that effort as well – the year before last they outfitted Owen’s team with teal socks as well.
I think teal is such a silly color – but we have so much of it around.  I really never thought that a color would become a rallying symbol that I would actually embrace.  Who ever does?
Recently one of Stef’s friends – who is a Breast cancer survivor, Kara – had arranged to have a landscaping company take care of some mulching around the house as well as plant a dogwood tree in the yard.  It was planted and immediately opened up it’s pink blooms.  She gave us a framed print which describes the special meaning of the dogwood tree.  Kara expands on that a little bit on her blog in an article she recently wrote about Stef.  It’s an absolutely beautiful read and well worth the jump.
This past weekend was busy – between multiple soccer games for the kids we also went to the Johns Hopkins Below the Belt 5K which took place on the Goucher College campus.  Stef was the top finishing Survivor last year and was presented with a wonderful mirror box trophy.  This year she was there to just watch.  I registered myself and the kids to run, but her boy, Owen, was a kid on a mission.  Before the race I told him that the moment he starts to feel weak or tired, dig down, and know that he’s got all of Stef’s strength and fight, and know that he can get through it.  He finished 5th overall!
….. How much information is too much information…..   I suppose this is the warning line..  I have to admit I think I get some therapeutic relief in typing this…
The days following – just this last Monday, Tuesday – Stef has battled increasing pain.  She’s got an inflamed area, on her rear, where what I now understand is pure tumor pressing and creating discomfort.  Can’t really sit… Can’t really lay down…  We’ve followed the lead from hospice and modified her pain meds to try to keep her comfortable.  Tuesday night however resulted in an “event” where another – perhaps best way to describe it as a “chamber” ruptured.  Recall the cyst which I think I mentioned in previous posts – it’s essentially an open wound now, which is, wait for it…..   connected to the tumor.  Drainage varies, but we’ve become pretty good at keeping up with it.  The “event” Tuesday night resulted in creating what looked like a crime scene.  I really don’t know how or why I’m comfortable with it, and I feel slightly disturbed to say it – but I like taking charge in the chaos, setting an organized path and plan toward getting things fixed.  With the kids contained, protected from things – I just set to work, first cleaning the area around Stef, then cleaning Stef up, getting her resituated in a clean environment and comfortable, and then cleaning the rest of the area.
Wednesday, mid-day, hospice nurses visited and assessed things (they’d previously seen it Monday, however things had worsened).  An option, which we pushed for was to head in to the ER, have the area looked at and evaluated by the doctors there to determine if the area could be drained, thus giving some relief.  We did this, and got another ambulance ride (hospital transport).  A CT scan was conducted as well as a blood draw.  Results came in that there was nothing that could be drained and blood results were heavily skewed in terms of infection.  The doctor was very helpful and shared the CT images with me.  I don’t think there’s anything I can say about them.  Unreal.
We got home shortly before 3am, and Stef slept a bit…  This morning was rough – both for comfort for Stef and emotions.  We had a few visitors including hospice as well as Father Jeff from St. Andrews by the Bay.  Stef has been presently resting very comfortably for the last hour.
It’s now been determined that we’re going to put Stef on an in-home morphine IV pump/drip for pain.  This will likely get set up in the next day.
I’ll look to update some pictures later on, as well as trying to make more frequent updates.
As always – BIG THANK YOUS to everyone for their prayers, thoughts, and assistance.  There’s no real way to express my gratitude to everyone, for everything they’ve done.  The simplest words – just knowing how much love and support is there..  Thank you.