..taking a break from blogging for the day, but today was MUCH MUCH improved.  Our prayer is that Kev can get some better meds for nausea/gagging….otherwise, all is well in Boitsonland.  Thanks for your continued support.

So, after a day from..well, you know, we look forward to a night of restoration, peace and calm amidst all this calamity.  The day begin with hope-Kevin was going to get a pedicure to rid himself of some excessive dry skin on his feet caused from the hospital stay, and I hoped it to be a smooth day to run errands together.

But..it was not to be.  Long story short, balls got dropped and I spent 3/4 (no lie) of my time today on the phone with various branches of our health insurance trying to get things sorted out.  Finally, this afternoon, our feeding tube supplies and Hickman supplies arrived.  We were set to FINALLY get started on a 24 hour delayed feeding.

But…there was a clog.  Clog led to several phone calls, some cries of frustration on my part, and a visit to the emergency department where they worked with a tube, some soda, and some meat tenderizer (yes, meat tenderizer) to finally get Kevin’s J feeding tube de-clogged to begin feeding.

Whew, what a day.  I cannot express my frustrations, disappointments, anxiety, and sheer disgust at today.  I am still frustrated beyond belief, but laying my concerns upon the Lord that tomorrow will be a better day and this will merely just be marked as a day from…well, you know.

Kevin and I arrived at 2pm yesterday to a nice big sign in the front yard welcoming Kev home.  It is SO very nice to be out of the hospital, the city, and with my parents.  We just hung out, and awaited the delivery of home supplies-that never came.  After some calls made, there was a big mixup, so hopefully we will have everything we need by today.

Before we left the hospital yesterday, we heard news that Dr. Thornton saw the results of the CT scan and texted Dr. Kendra with “The Scan Looks Great!”.  We were so excited about that-not sure specifically what it means, but we’re always happy to hear great.

It looks like there may be a large possibility we’ll be able to get the remainding chemo treatments done here in Lancaster, or even right at home.  We’ll work on those details over the next two weeks.

The move last night went very well-thank you ALL who came out to help!  Unfortunately, our massive couch didn’t fit upstairs, so for the time being my parents inherited it.  Oh well-at least we have a nice couch for our NEXT home.

Today is a big day of errands, and a bit of pampering.  Once we find out what time the delivery is expected we can plan our day a bit better.  Kevin is getting a pedicure that he is greatly looking forward to (he has Hospital feet for all who have ever been in the hospital for about 40 days), and we’re going to get some items to help with everyday life.

Thanks for your prayers and thoughts of safety and travel.  We have some huge adjustments to get used to, but we’ll get there.  Praise God.

It’s 7:30, and I’m already here at the hospital waiting for rounds so we can finalize some last minute questions and get outta here!!  Kevin didn’t sleep well last night, so I wouldn’t be suprised if he sleeps on the drive home.  Pray for safety and easement of travel.

Tonight wonderful friends of ours are moving our larger stuff into my parents JUST IN TIME.  I’m hoping Kevin can adjust well to the new settings and being able to sleep outside the hospital bed.  I’m learning how to administer all the medications, do the flushes, set up the feedings.  It’s quite a bit, but before i know it, it will be second nature.

Bad allergies again today-definitely got to get on some meds for that.  I had hoped to avoid my usual fall/winter bout with them this year.  Oh well.

Praying for a stress-free, smooth day..thanks everyone!!

Please say a special prayer for the 9/11 victims today as we honor the 7th anniversary of this horrific tragedy.

Well, today is wrapping up pretty stressfully-mostly because I have a pounding sinus headache-darned allergies!  I was on the phone bunches today getting everything settled for our care at home including supplies.  We’re getting a bit frustrated with our health insurance in getting stuff covered for home care.  I think some battles are ahead of us in that.

Tomorrow we’ll be on the road back to Lanc-not sure what time yet.

We heard the official word from Dr. Thornton that the Cardio Thoracic team (including Dr. Yang) has NOT ruled out the possibility for re-connection!!!  It will require Kevin to be off of chemo for 3 months, and no recurrance of cancer during that time.  Dr. Thornton told us that may be unlikely, but it’s still something that is an option.  It is very intensive and major surgery, so it’s something we’d need to consider should the opportunity arise.

We were a bit surprised to find out that it may be unlikely that Kevin would NOT be off of chemo for at least 3 months.  We thought that there may be a good bit of time that once the cancer clears up a bit, we’d have some time in between treatments (months, maybe years?), but we guess with the aggressiveness of the cancer, it’s not possible.  Either way, we’re continuing to pray for our miracles and for the slower progression of the tumor.

This afternoon Kevin got a CT scan to look at the tumor and to see how things are coming along.  This will also be a good indicator of how his next chemo treatment will be done (options are at home, inpatient at JH, outpatient at JH or maybe even outpatient in Lancaster).  We’re praying we can do it at home and that CT scan shows positive progress.

Continue to lift us up as we leave our bubble here at JH.  We are nervous, yet excited about our future at home.  It will definitely be quite an adjustment, but we are ready to move forward.  It’s just been a VERY LONG day and some frustrating parts.  We’re just ready for the next step and to get things moving forward.

Pray for safety of travel, adjustment to home, relief of stress and anxiety, insurance issues to be resolved, and continued healing of Kevin’s cancer and his body.  Praise God for his strength.

Hello everyone. By everyone,I mean all of you blog supporters far and wide. This is it. In about 24 hours I should be leaving Johns Hopkins and returning home sweet home. This has been a long,tough battle. One I could never have got through without everyones prayers,thoughts, and support. From the bottom of my heart I give my deepest gratitude to all of you for that. The journey is still far from over yet, but this is like one big mountain already climbed. I have to keep this short as I have much to do here before coming home. I look forward to seeing you then.  Kevin

We’re just getting ready for the next step of our journey.  Tomorrow is a running errands day as I wrap up some things before we head back to Lancaster.

I am also VERY happy to report that the Saturn is OFFICIALLY SOLD!  This is a huge financial burden to be lifted.  Our next hope is that we can get a fair trade in for Kev’s neon and to buy and older Jeep Cherokee.  We want to rid ourselves of all our car payments, and get a 4-wheel-drive vehicle to get to the beach, to the mountains, and to Baltimore in the snow if need be.

Kevin is slowly but surely adding solids to his diet. This makes his quality of life SO much better.  Things will become a new normal to us, and we’ll get there.  Lots to adjust to.

Pray for good rest tonight, and that they can come up with a good pain care regimen for Kevin as we’re trying to get things to work correctly since he’s off the IV pain meds.  He’s currently on a patch, and (get this), Fentanyl lollipops.  Unbelievable huh?  So far we haven’t come up with a good system for everything yet, so hopefully that can get settled in the next 24 hours.

Big thanks in advance to everyone helping to move the big items to my parents Thursday evening.  We look forward to seeing you and appreciate everyone’s help.

Soon the be announced: Raffle ticket winner.  Please message me if you still have raffle tickets to get to me!  Thanks!

Well, Thursday is now the official day that we are home bound!!  They had even discussed us going home tomorrow, but we just aren’t ready with all the stuff we need to be taught for home care.

Kevin and I got on a *little* excursion out into the main hospital today, and go to rub Jesus’ foot at the statue of Him in the old hospital.  It was so cool.  We also got some frozen yogurt, then were forced to come back due to a low IV battery.  That stunk a bit.

Over the next 9 or so days we’ll be slowly changing the feedings to a 12 hour on 12 hour off schedule.  That way, Kevin should only be feeding while he’s sleeping.  This will be super nice.  We’re looking forward to that freedom so that we can go somewhere (maybe the beach?) for the day in the near future before it cools down too much.

Lots to learn, and we’re feeling a bit overwhelmed, but very blessed.  The staff is helping to get us stocked and ready for home care, so a lot needs to happen.

Thanks for all your help and prayers.  Leave some love.

Today is just another exciting day here at JH.  Kevin is wrapping his chemo around 1p.m., and after that we’ll be taking a walking/wheelchair tour of the hospital!  For the first time in over a month, Kevin will be moving of his own power out of the room, out of the floor, down an elevator and into the main hospital for a little tour.  We’re both excited to “get out” together.

Things are going so great-I cannot praise God enough for the quick turnaround in events.  Last week I said a prayer telling God I just didn’t think I could handle another downfall, another detour, another disappointment.  He heard my cry, and here we are.

Something I forgot to mention yesterday was that Dr. Thornton is taking Kevin’s case to the cardio-thoracic tumor board either today or tomorrow to talk to them about reconnection of what’s left of his esophagus to his stomach.  Although we’re not sure how the tumor looks, we want to find out what the possibilities are down the road should things improve even more.  We are so glad that Dr. Thornton is keeping that dream alive for us, and pushing ahead to see what can be done.  We were so excited to hear that she is taking such headway with prematurely looking at the options.

Here are some things we are truly looking forward to getting back to once we’re out of here:

-Go to the beach

-Cuddle with each other

-Just having more atmosphere and freedom to enjoy

-Go places

-See people

-“DATING”

-Start a normal routine

-Live in a house again

….these are just a few of our favorite things.

I am still searching high and low for a good, flexible job with amazing benefits.  Pray that opportunities come my way that will suit my qualifications.  I’m plan to head back to work in the next 2-4 weeks, depending on what I find.

Thank you for all your support.  Leave some love everyone for Kev to read as he prepares to be released!

We have gotten the green light from OT, PT, Speech Pathology, Nutrition, and Pharmacy.  We are a go to come home no later than Monday!!!  We are so excited.  The best part is there are little to no restrictions on what we can and cannot do.  So Day Beach trips?  Here we come!!!

We’re getting everything ready so we know what to do when we get home.  Lots and lots to learn.  The only obstacle is making sure his body can handle 12 hours of nutrition instead of 24.  They’re upping his feeding tube nutrition so that he’ll only “feed” at nighttime which is just great.
In regards to the next round of chemo, we still don’t have a lot of definites.  Dr. Thornton is going to look into seeing if we can do chemo at home!!  This is just awesome.  Otherwise, she’s going to look into working with another oncologist back in Lancaster to see if we can get the treatments at home, and only come down here for followups.  We’ll see-all options are still open, but we’re praying we can do the chemo at home!

Kevin is still not allowed to drive due to the narcotics, but he may be coming slowly off of them in the next coming days/weeks so that he’ll be able to.  The biggest thing is, to listen to his body, and do what he can without overdoing it.

We are looking forward to getting back to normalcy, to still catch a bit of summer fishing, and to go forward with our lives.  Everyone here is so amazing, and so wonderful.  It has truly been a blessing to be here under their excellent care.

So….here we come Lancaster!  WATCH OUT!