….It’s 5 o’clock here on the East Coast at Hopkins and we’re drinkin some apple juice-LOTS AND LOTS OF APPLE JUICE.  It’s Kevin’s new cocktail.  He loves it, and as long as they say he can keep drinking it, and letting me drain it from his bag, we’ll keep doing it!

We met with a Dr. today about the fluid that has continued to fill around Kevin’s heart.  They are closely monitoring it, as well as his blood pressure and heart-rate.  They may do what’s called a paracardial window to drain the area again, but at this point, I believe they just want to keep monitoring it before taking him back to the OR.

Kevin is having a good day-he’s swallowing very well and doesn’t have as much trouble coughing today which is nice.  The biggest issue Kevin is having is rest at night.  The pain medicine is making him have some crazy, Stephen King-like dreams and makes him slightly delusional about what he sees in the dark in his room.  Needless to say, it’s hard to get more than a few GOOD hours of sleep.  Pray that the pharmaceutical team can come up with a good pain medication that will him rest and relax without giving him the adverse side effects.

We had some nice visits with pastors Jay and Curtiss which was so nice.  It was great to see them, and comforting for Kevin to have prayer and visits with them.  Our close friends Marty and Kristi, who brought down Linda and Ken, Kevin’s family, also visited with us, and took Linda and Ken to the aquarium for the afternoon.  A nice treat to get some enjoyment while here in Baltimore.

I have spent all day with Kev, which was nice just to have some alone time together, minus all the nursing staff coming and going!  I got to the gift shop and picked up a tye-dye Hopkins tshirt to show my support as well as a cancer wrist band.  I’m in search for calming beach posters/pictures/things to place in Kevin’s room.  Being that he’ll have to look at one wall in particular for the next several weeks, or several months, I figure we’ll make it as zen-like as possible for his recovery!

We’re having fun just hanging out and being together.  I’m wrapping up the last minute logistics for our big BBQ next weekend.  I plan to be up in Lancaster all day Saturday the 23rd for the BBQ to see everyone and give my thanks for all you have done.  I hope to see most of you there!  In the next month, I’ll be traveling up several more times to start packing up the apartment.  I’ll soon have a list of things we’ll want to sell before moving our belongings in with my parents, so keep posted, as you may need some of these!

Have a wonderful TGIF, and enjoy this beautiful weekend ahead.

As Kev calls himself, “Chemo Man”….here is the MAN himself…the one and only…CHEMO MAN!  🙂

Kevin is of HIGH spirits, especially the last 24 hours.  He is currently working with the speech therapist on swallowing, and making sure that the liquids do not go down the windpipe.  He is VERY proud of how far he has come with the swallowing.

The staff has even allowed him to SWALLOW APPLE JUICE.  For those who don’t know, Kevin has been craving fruit juice, no, not just craving, JONESING!  So, he’s swallowing apple juice-it goes right into his esophagus bag by his neck, but it feels and tastes SO good.  He stil has some minimal coughing, but he’s doing great and getting those swallowing musclesmoving.

All the Drs came in this morning to speak to us about Kevin’s ports for his IVs and chemo.  If they can, with Kevin’s fever diminishing, they are looking into inserting a medi-port under the skin that lasts for several months compared to the temporary port they have in now.  They are also going to put in a pic line for more of his IVs.

They did try his feeding tube last night, but had some complications with the tubing, and the nurse accidentally popped the tubing a bit.  Now we have to wait 4 days for the feeding to resume, but in the meantime, they have started him on the IV feeding to get him some of the important nutrients and protein.  This is very temporary, being that his body may try and use that to grow bacteria.

Things are looking great-Kev is swallowing well, we’re geting the feeding started, so far no adverse effects from the chemo and we’re working up to get him disconnected from the chest tubes so he can get up and walk.

Pray these things keep moving forwards-we are not looking negatively-we are looking at healing and progression.  The Lord’s will be done!

PS-I apologize for those I haven’t yet written thank yous for the cards and financial help.  So for now-THANK YOU THANK YOU!

We love you all!

I PROMISE to have some HAPPY pictures of Kev tomorrow.  He’s actually wanting to smile and show his new, healthier self to everyone.  I’ll make sure to get some funny, cheesy ones for ya.

Kevin has some words for you in the meantime…

“Everyone’s words of hope and encouragement and faith have helped us more than you will all ever know.  I thank you from absolute bottom of my heart and soul to each and everyone of you who took the time to write to us.  We will win this battle.  We will come out the other side alive.  And a big part of that will be because of all of you.”

…and I think that sums it up from the both of us.”

Thank you.  God bless.

PS-TOMORROW, FRIDAY IS THE LAST DAY FOR THE BBQ TICKET SALE!!!  If you need tickets, please call my mom at 717-872-7187 or Joni at 717-278-5032.  We need a FINAL COUNT from all ticket sellers by 6/7pm-you may call that into me at 717-682-0365 or text the final count to me.

Tickets, again, are $8 for a 1/2 chicken meal-it runs from 10-2 next Saturday, August 23rd.  There will be very minimal/if any additional meals besides what people pre-purchased.  I will be there, so buy a ticket, and stop by to say hi!

Please, any cards, please send to my parents at:

327 Tanyard Road Conestoga, Pa 17516

We again ask only for requested visitation, especially while Kevin has started chemotherapy and needs a contained environment.  Thank you.

Yesterday we got our final PLAN.  As hard as it was to hear the news, we now have some direction and know what to push towards.

Angiosarcoma is very rare.  Sarcoma makes up only 1% of all cancer cases in the US every year.  Of those 1%, Angiosarcoma is only 1000 cases per year in the US-where Kevin’s location could make him not just a little rare, but the most rare.  He’s pretty special 🙂  But we knew that…

Kevin’s tumor is not removeable by surgery, as there are no enough margins around the tumor.  With the drastic rate that Angiosarcoma divides and spreads, most times, even when surgery is an option, during the healing process from major surgery, the cells re-occur anyways.

However, this type of cancer is very responsive to chemotherapy!  Kevin started a chemotherpay (taxol) drip last night at 11pm and will continue on this drip 24 hours a day for the next 6 days.  They will slowly increase the dosage to slow the growth of the tumor and to rid of it.

With angiosarcoma there is no cure on the books.  I’ll just give you a moment to let that sink in, as we had to as well….

It was hard to hear that, but as Kevin told me after Dr. Thornton and her staff left, ‘Do you believe in miracles baby?’ and I nodded wholeheartedly.

Just because there isn’t a cure, does NOT mean that we cannot go on leading a normal life.  Kevin will continue on chemotherapy as long as he has to to rid his body of the current tumor.  After that, we can go on to live a normal life, and will just keep monitoring the cells to see when/if they recur (in all cases thus far, it has recurred).

There is a clinical trial we are trying to get on for when Kevin is off the chemo to keep the cancer at bay for a longer period of time.  We will go on that trial if we are approved for it!

Kevin could and SHOULD go on to live a long happy life, just with a few big bumps in the road.  We believe in miracles and healing.  If Kevin can have one of the rarest cancers on this earth, why he can’t he be one of the rarest miracles?

We believe in healing, we believe in God’s will for our lives.  He has brought us through SO much as a couple, and we’re moving ahead.

We are currently working out the logistics of our new Baltimore Life, but are most likely considering me relocating to the area until treatments are done, and then moving back in with my parents when we’re back in Lancaster to save funds.

Our financial situation ahead is unknown, but we ask for the Lord’s provisions in housing and bills.

Thank you for your thoughts and prayers.  We appreciate you.

Linda and I arrived at the hospital around 8 am to see Kev in his new room on the 5th oncology floor.  We heard rumors of him getting his vent off……

I wish I had a picture to show, but HIS VENT IT OUT!!!!!!!

His catheter is OUT!!!!

His arterial line is coming out!

They’re going to slowly work on all his fluid drains to come out!

So exciting…more news to come on the cancer treatment options!

Pictures from today.  For those who cannot handle seeing a lot of wires/hookups, please do not scroll through.  Thank you!

Welcome to the new chapter of our life book, titled, “ANGIOSARCOMA”.  Yes, the biopsy resuls are in, and this is what Kevin has.  It is a blessing to have some answers, and an anxiety to have uncertainties.  Either way, we feel positive about FINALLY having some direction!

Here is what we know:

Angiosarcoma is a tumor that develops in the blood vessels and connective tissue.  In Kevin, it runs from his mouth to his stomach.

The path features show that the tumor is dividing fast and they would like to begin immediately treating him with chemotherapy.  This is normal for the type of cancer-from what little, reliable information there is on the web, it is a very progressive cancer.

Kevin was moved to the 5C part of the Weinberg building tonight to prepare him for chemotherapy.

Dr. Thornton is the attending physician on this floor all week.  She is known as the “Sarcoma Guru”, and I know the Lord placed her in our path for a reason!  She is going to transfer Kevin to directly under her care, which is a huge blessing to us.

It is very difficult to say what lies ahead, but she is an expect and will help us.  Tomorrow morning, they are having a sarcoma conference to discuss Kevin’s treatment plan.  Afterwards, during rounds, we will meet her and get an official plan book from her between 8-11 am tomorrow.

This is what we know.  Whatever news we receive tomorrow, we will receive with OPTIMISM.  We have a direction, and no matter what numbers come out to say, we know the Lord performs miracles DAILY and with all of our prayer, how can he not listen?

We are a famiy that will NOT, and I repeat, WILL NOT listen to statistics.  So stop googling Angiosarcoma.  I did it already, and frankly, Kevin’s particular case wasn’t found ANYWHERE on google.  It seems most angiosarcomas occur in the heart, breast and skin.  So Kevin’s case is even more rare than the current statistics.  This makes him an excellent candidate for research and I know having the “Sarcoma Guru” by our side to lead the way, that God will direct her and her team to SUCCESS.

So, stop googling.  Seriously 🙂

Start praying instead.

Tomorrow will be a long and interesting day.  I don’t know where this leads us with anything else, especially the vent, but we’re following God’s lead on this one.  Join us!

Please, POST POST POST away, because I want to go to Kevin tomorrow morning with, like, I don’t know-100 MESSAGES to read to him?  Ok?  Give us SO MANY MESSAGES that I don’t even have time to read them all.  Flood God’s inbox with so many prayers, he’ll have no choice but to say, OK, KEV’S GONNA BE HEALED!  Ok, so I may be a bit ridiculous, but I’m a bit serious too.

The Lord does amazing things during amazing times.

We met a couple tonight who’s staying the same house as us and are entering this week into Pancreatic cancer surgery.  I believe his name is Merle..life Merle up tonight too, ok?

While you’re at it, lift us all up, as we need God’s positive energy in us right now more than ever.

Lift Kevin up not only in physical healing, but in mental preparation.

Lift the team of Doctors up in their planning meeting tomorrow.  Touch their hearts to know ours.

My prayer….pray with me…

Lord, we know it is because of you that you opened those doors to get the biopsy results back in a timely manner.  We know that you placed Dr. Thornton on the ocology floor this week to be heading Kevin’s treatment.  We know that you are opening these doors for Kevin to begin healing.  You are the worker of miracles, the King of Kings, the director of all.  We pray to you Father tonight, asking you to bless Kevin’s body.  We know he is aching in ways we cannot understand, and we pray for you to lift that physical, mental and spiritual anguish.  Cleanse him of his cancer, cleanse him of his pain, cleanse him of his uncertainties and fill him with a desire to push on and become a new, POSITIVE outcome from sarcoma.  The road that lies ahead is going to be difficult and trying, and unimaginable at times.  But Lord, we know with your direction, and with all the prayers that are filling your heart right now, we know that it is you Lord who can provide those windows of opportunities.  We are not worthy, but we ask for your mercy and grace on us.  We ask that our lives can be a beacon of light to those around us.  We ask for you to continue to touch the lives around us, through us.  We are your vessels Father.  We are your kingdom, and we will be that light to you.  Direct us Lord to say and do the right things in a manner that pleases you Father.  We lift you up so greatly and thank you, and thank you, and thank you.  We are not worthy, but we thank you for the miracles you are performing.  Lift up our housemate, Merle, and his wife and family Lord.  We know they are tired, and weak and aching for you Father.  We ask you to touch his body and heal him of his pain.  Bring peace and understanding to them Father, and open up doors for us to reach out to him.  You are the one and only, the Price of Peace and the Master of ceremonies.  Bless us Father.  Bless us and open up doors of miracles to everything around us.  You are wonderful.  We thank you.  In your holy name we pray, Amen.

PS-in regards to the messages, I know there are about 900 a day lurking out there, so leave some love!  Thanks.

Right now, as our address and wherabouts are in LIMBO, please send letters/packages/whatever to my parents address:

327 Tanyard Road

Conestoga, Pa 17516

They come usually every week, so they can bring the items to me faster than anything.  Thanks again!  Kevin should be in his Oncology ICU room for a bit, so for at least the next week you can send letters directly to him at:

Johns Hopkins Hospital

c/o Kevin Boitson

Weinberg-3rd Floor-Room 5

600 N. Wolfe Street

Baltimore, MD 21287

Overall, it’s probably still best to mail things to my parents JUST in case!

Thanks everyone!

I got kicked out of Kevin’s room around 11:30 so that the respiratory therapist could do some breathing exercises with Kevin.  She had him breathing deeply in and out, and then took him off the ventilator, and just on regular oxygen for an hour to breathe on his own!!  It was quite exciting for me, and I think nice for Kev too.

Linda and I went into his room about 15 minutes ago, and the exercises went well, as well as the hour off the ventilator.  Obviously, this wore Kevin out extremely, so he’s now resting.

Kevin is now in a sitting position in the bed, and they are actually hoping to have him stand for a few minutes today, which is also exciting.  He’s wore out, but I think he’s very anxious to get moving forward towards recovery.

I am hoping Kev can soon to be sitting in a chair away from his bed and look out the window.  He is fortunate to have an end room on the oncology ICU floor to see not only outside, but into the nice open waiting area down below.  He can see the grand piano where I’ve been playing in the afternoons for stress relief, and for pleasure!  I’m hoping he’ll be sitting in that chair soon, listening to me play.

Today is a good day-very relaxing and not too stressful.  Kevin’s brother Ken should be here by this evening, and we are greatly looking forward to his arrival, especially Linda.

I did call about our room at the Oncology family housing, but they are booked solid.  As the woman on the phone said, “no one is budging!”.  She told me to continue to call back, and hopefully they’ll have a place for us by the end of the week.  Either way, we’re quite comfortable with our accomodations at the McElderry Houses which are right next to the hospital.  We can cook, bring groceries in, chill in front of the tv, and really just RELAX, which is so important to our MENTAL recovery.

Overall, today is a good day.  The Lord is providing Kevin outlets for his pain; both emotional and physical.  We pray for continue financial provisions and understanding from the medical team to move ahead and officially diagnose Kevin’s cancer.  I prayed with Kevin today, and he is continuing to fill himself spiritually to have the ability move forward.

He wrote to me today, “Almost as much as I love kissing and loving you, I want to drink my favorite sodas, fruit juices and turkey hill drinks.”  It made me smile.  I have no idea what he’s going through, but I can’t imagine not only being on a ventilator, but not being able to drink Turkey Hill iced tea.  NO ONE should have to go through that!  Linda completely agrees.  She herself misses Turkey Hill iced tea.

Once we get some answers, we’ll finally have plans on the feeding tube, the fever, the tumor, the fluid in his body, the hopeful reversal of the esophagectomy and more.  In other words, we’re waiting and praying.

I hope everyone understands why I do not wish to see more than very close friends and family right now.  It can be difficult for not just Kevin, but for me as well to have to explain this situation over and over again.  At this time, if you’d like to connect with Kevin, leave messages on here for me to read to him, or send cards to my parents for them to deliver to us:

327 Tanyard Road Conestoga, Pa 17516

Until then, please leave as many emails or comments and forward our story around the globe.  Yesterday ALONE we had over 800 hits on this blog.  I always hoped our story would touch those around us and be a beacon of hope and a beacon of God’s love to those around us.  May our story touch you and those around you to push on for cures and hope.