Well, it’s Friday, and as we had hoped to be out of here by this morning sometimes, now we’re not so sure.  Kevin made it fine through the embolysm (sp?), where they go in through the groin to plug the artery that feeds blood to the stomach.  This was done before at JH, but they used a gel which is only temporary.  This embolism will be permanent.  Afterwards, he couldn’t move that leg, or sit up more than 45 degrees for 6 hours.  He was exhausted!

He is currently on a PCA Fentanyl pump, where he can hit the button for his pain.  It’s nice so that it controls his pain, but raises concerns for us on when we’re going home and why they aren’t trying to get his pain under control through things we can put on/administer at home.  However, due to the pain level of the procedure, this is what they felt best to control his pain at the time.

Early this morning, Kevin’s heart-rate went up again, and he went into the irregular heartbeat rhhythm he had at hopkins.  At the same time, he discharged about 200 ML of bloody liquid from his gastric tube again, making us wonder if the embolism even worked!  We tried to assure the nurses that the heart-rate and rhythm issues were NORMAL for Kevin, if they would just look at his record.  Well, after giving us both near heart attacks from worry, they left us alone to finally find it WAS normal.  That was definitely annoying.

He’s still draining again from his gastric tube, so we’re not sure what’s going to happen.  He is due for chemotherapy today, so I highly suspect, they’ll keep him here at least until Saturday so that they can administer the chemotherapy as well as get his pain and nausea issues under control and see what’s going on with the bleeding.

As much as we both want to be out of the hospital, more needs to happen for that to happen, which is just plain frustrating!  Thankfully this round around, we’re activists for ourselves and can push for what WE want because we know so much more about what’s happening. 

We both decided as well that it would be in Kevin’s best medical interest to get a second expert opinion.  We trust Dr. Thornton and her team, but it never hurts to have 2 sets of expert eyes evaluate such a rare and serious condition as Kevin’s.  I am going to look into Doctors at Fox Chase Cancer Center in Philadelphia to see if it’s covered under Kevin’s insurance.  I have heard excellent things about this center, so we feel it’s worth it.

Please pray for guidance and peace.  Pray that the doctors will get MOVING in the ways they need to control kevin’s pain and  nausea, that relief will come from the stomach bleed, and that we can get home in a timely manner.  Pray for easement of frustration and apprehension.

For those wanting to donate blood, IF Kevin and I are still here at the hospital through tomorrow, I plan to donate around noon on the 3rd floor here at LGH.  Come on out!

I just got a comment from a good friend, Deborah, whom I met on my weightloss website, sparkpeople.com.  Her husband was in a car accident, and had to have surgery and now needs assitanc e at home.  On top of that, her mother is in the ICU currently.  Please keep her family in your prayers.

Also, Kevin is currently in Internventional Radiology Angio having the artery in his stomach plugged.  Before, the other artery was coterized (sp?), and they want to do this again in the stomach to prevent the massive blood flow going through his stomach from his tumor bleeding.  Please keep him in your prayers that they can make him as comfortable as possible and that it is a positive result.

Pray also for pain relief to be controlled, as well as nausea.  There still has not been a good solution, medication wise, to get this pain and nausea under control.  That will be a big hurdle to overcome before we head home from the hospital.

My anxieties are high, as I was in a bookstore out of the hospital, when Kevin called to tell me they were taking him to IR.  Thankfully, I got in and down in time to kiss him.  All these procedures always un-nerve me and make me very anxious.  Pray my anxieties lessen and that I can be confident in the people performing this procedure.

Thanks for all your continued prayers!

If you would like to donate blood, it would be GREATLY received!  You can donate here at Lancaster General Hospital, tomorrow, Friday October 10th from 8am to 4pm.  If we end up staying through tomorrow, I plan to donate as well.  If you do come tomorrow to donate, let me know via phone at 717-682-0365. 

I do not believe it is possible to donate specifically to someone anymore, but you now donate to replenish the bank.  Please donate to your local hospital or American Red Cross to save a life.  Thank you.

For those who don’t know too much about Kevin and I’s history,  here’s the recap!

Kevin and I met online just over 3 years ago. I got a mysterious email sent from my old high school personal website that only included a picture. That picture was of Kevin, and after a few emails back and forth, I figured out he didn’t know how to work email, but that he was cute enough to talk to-Ha! Anyways-so began the hours long phone conversations that went well into early morning and caused some very disturbing phone bills (just ask my mom!).

Three weeks into our phone conversations, Kevin’s father passed away abruptly from an angyna attack. It was completely unexpected, and devastating for his family. Kevin held his faith through it, and we bonded even more so through this terrible event. Soon after, we decided it was time for us to finally meet face to face.

In August, Kevin came down to visit for two weeks, and we both admitted it was “love at first site”. The calls continued, and we visited each other as much as possible, although all long distance relationships are extremely difficult.

In April of 2006, Kevin came down to visit me in Montana where I was living at the time (I had moved from Lancaster in February of 2006 to Montana to explore). We were taking a walk along the Bitterroot river downtown, and he got down on one knee and professed his love and commitment to me. We were engaged, and life was roses.

So begins the immigration battle. Over the next 7 months we battled high and low with US immigration to get a K-1 fiance visa for Kevin to move to the states where we could be married. I moved home, as we decided it would be best to make our home in Lancaster. Finally, right around Thanskgiving, we got the best thing to be thankful for: an approval for the visa! Kevin flew to Vancouver over the following weeks to interview, and we were set.

The last week in January of 2007, Kevin and his mom and brother came down to move Kevin in and for our wedding. On February 3, 2007, we were married at New Danville Mennonite Church in Lancaster, Pa. We honeymooned at my parents (primitive-haha-but comfy) hunting cabin in Wellsboro, Pa (northern) and Buffalo, NY. It was cold-did I mention we got married during a record cold week in Pa? That week’s average was around 10 F. Ugh!

During the first 4 months, Kevin was unable to legally work. It was very frustrating and difficult. Finally, in June, he received his working papers, and soon after, his 2 year permanent residency. In August, the position opened with Rohrer’s One Hour, who agreed to hire him on as an apprentice-he was so happy. We had moved to our College Avenue apartment in March and were finally settling into NORMAL married life.

I introduced Kevin to the Atlantic Ocean on Memorial Day weekend of 2007, and he was hooked to ocean life and surf fishing! Ever since, we’ve gotten down to the beach for getaway weekends as much as possible. It’s so relaxing, and so much fun for us.

Over the past year we have enjoyed exploring around the East and just enjoying finally being with each other! We have discovered that we are each other’s perfect fit. We’re a story that wouldn’t have happened, but for the grace of God, and invention of the internet!

At the end of June, 2008 Kevin Boitson, my husband of 1.5 years, developed trouble swallowing.  He went to the Dr, who told him it was most likely an inflammation due to acid reflux and prescribed him prevacid.  A week later, we left to travel to visit Kevin’s family in Winnipeg, Manitoba Canada.

During our trip in Winnipeg in early July 2008, Kevin’s inability to swallow properly increased immensely, leaving even just water painful to swallow.  During our 1 week vacation in Canada, we placed two calls to our home physician who told us not to worry, just visit him when we got home.

We left a day early and arrived home at the end of the first week of July.  The following Monday Kevin visited with his physician, who increased his dose of acid reflux medication and switched him to Nexium.  He also scheduled Kevin with the gastroenterologist for an endoscopy to look at his esophagus the next week.

The next day, Kevin called me at work to tell me how painful his swallowing had become and that he couldn’t take it anymore.  After several phone calls, I left work to take Kevin to the GI dr. at the local health campus.  The nurse practitioner at the GI office seemed very concerned while taking notes about Kevin’s symptoms.  30 minutes later, we were sitting down with her and the Dr. discussing all the STAT procedures te GI Dr. wanted Kevin to have done: Chest Xray, CT scan, Endoscopy, blood work, etc.

The next day, Kevin had an emergency endoscopy which showed a mass of about 3 cm growing at the base of esophagus.  He told us he was nearly positive it was cancerous, and sent the biopsy to pathology for examination.

While waiting for the biopsy results to return, Kevin was sent for a PET scan to see if any other parts of his bodies showed cancerous/active cells.  The following week it was confirmed Kevin had cancer, but pathology was unable to identify his type of cancer.  It was decided they would try surgery first, and go from there.

That Friday, July 25th, Kevin and I went to Hershey for an endoscopic ultrasound.  The procedure was very painful for Kevin and did not go very well due to lack of sedation.  The weekend following, Kevin’s symptoms and pain increased, and by Monday morning the 28th we were in the ER at Lancaster.

Kevin was admitted to the hospital after the ER visit where they told us he most likely had pneumonia and was running a fever.  Throughout the next week and a half, Kevin was moved, moved and moved with more and more tests being done.  He had another endoscopy done for another biopsy because not only Lancaster, but also Johns Hopkins hospital was unable to determine the type of cancer to then proceed with treatment.

While Kevin was in the hospital, fluids built up in and around his lungs and heart, and they were unsure of the source.  Wed, August 6th, we were informed Kevin would be transferred the next day to Johns Hopkins hospital in Baltimore due to the possibly rarity of his tumor.

Thursday, August 7th, due to Kevin’s lack of proper breathing, it was agreed to put him on a ventilator.  That afternoon, Kevin was transferred via ambulance to Johns hopkins hospital, after having a chest drain put in, and put on the ventilator.

Early in the morning on August 8th, the surgeon at Johns Hopkins decided that Kevin would most likely need an emergency esophagectomy due to a possible perforation in his esophagus.  They hoped at the same time to remove the tumor, but the surgery had very high risks.  That evening, around 8pm, when my parents and sister arrived, Kevin was taken into surgery.

We were able to get a medical emergency flight for Kevin’s mom to be here, and we all waited anxiously for about 7 hours until 3 am Saturday morning for the surgery to end.  Kevin made it out of surgery, but they were unable to remove the tumor due to it attaching itself to other organs.  They did biopsy it again, as they still had not determined the type of tumor.

Kevin remained on the ventilator for almost a week, when they finally took it off, and removed his catheter.  The night before he was taken off, it was finally confirmed he has angiosarcoma, a very rare type of tumor that only occurs in 1000 people in the US every year.  With the location of Kevin’s tumor, running from the mouth to stomach, his tumor is even more rare.

Today Kevin has been on chemotherapy (taxol) treatment for 4 rounds and is doing ok.  There is no cure for angiosarcoma, but it does respond well to chemotherapy.  We pray and trust in God to shrink and disintigrate the tumor so we can continue on living a normal, happy, healthy life.  Kevin hopes to one day have his esophagus re-attached so that he can eat/drink again-something he misses dearly, but in order for that to happen, he has to be cancer and chemo free for 3 months.  This is a very weak possibility.

Kevin was discharged from Johns Hopkins in early September, and after 3 weeks of freedom, we are currently back at our local hospital for pain and some possible internal bleeding.

In the meantime, we have an amazingly strong support system of friends, family, and complete strangers praying and supporting us.  Without them, and our faith in God, we would not have come this far.  Kevin is enjoying eating and drinking, even though it doesn’t go anywhere but a bag on his neck.  It gives him a TASTE of his life as it will be hopefully in the future!

We push on through the grace of God and know that only He provides us the ways to healing and recovery.

Thank you for all.

We are so happy together and can’t wait to be for many, many years to come. We have so many dreams to fulfill, and through this journey have discovered even more things we want to do.

We thank you for joining in our love story.

Here are a few pictures from back when…

Kissy Kissy while dating, at Winnipeg Beach, Manitoba

Our New Year's Dinner at Assiniboine Park in Winnipeg

At a friend's place in Montana where we had originally hoped to be married...

At our wedding social in Winnipeg

Our Wedding day in Lancaster 🙂

More of that GREAT day!

Running into the COLD!

Walking through Downtown Lancaster after the ceremony

Wonderful Reception Kiss

Numb to the bone on our honeymoon at International Falls

Much warmer staying in Buffalo at The Mansion on Delaware during our honeymoon (notice the Buffalo Sabres gear?-GO SABRES!)

Happier times in Baltimore-During a trip to Fell's Point

Our Favorite Place to be-Assateague Island, Md Fishing!

Thanks for your continued comments and support!  Again, a big shout out for all you “lurker” readers, and EVERYONE to leave a message and tell us either how you know us, or how you found out about our story.   We’d love to know how big our support team is!  Thanks.

Cards are dwindling, and Kevin loves READING THEM!  So, I’d love to see a card shower in the week following him getting out of the hospital!  Preferably FUNNY, comedic cards, even cheesy, as he says he just needs some good laughs.

Send your best bought or home-made card to:

Kevin Boitson 327 Tanyard Road Conestoga, Pa 17516

It is possible for pneumonia to “go around”?  One of our blogging friends, cfhusband.blogspot.com, the Lawrenson’s are dealing with this as well.  Tricia just got out of ICU at Duke Medical with a case of pneumonia.  Prayers to their family.  Tricia is also receiving chemotherapy for a type of lymphoma that developed after her lung transplant.  Lift this amazing family up with you tonight!

I finally found a “for employee use only” computer to sneak onto here at LGH.  SH!  Don’t tell anyone!

Over the past several days, Kevin has continued to drain a bloody fluid out of his Gastric tube.  So far around 800 ML, which is quite a bit.  Thankfully, not as much as his first “bleed out” at Johns Hopkins. 

The hope was to get out of here today or tomorrow morning, but even after great points for his hemoglobin (sp?) after his blood transfusion, it dropped over 1 pt in 24 hours, which isn’t a good sign.  That could mean that the tumor is just continuallly bleeding, which is something we know about and are fine with.  However, it could also mean he has a bleed elsewhere, which of course if of major concern right now.  His temp and blood pressure are holding fine, so we are going to continue to hope and pray and BELIEVE that this bleed is just coming from the tumor dissolving from the chemotherapy.

Obviously, our hopes are a bit dwindled this morning in finding out that his hemo counts are already dropping.  We knew that he would most likely need blood transfusions for the rest of this tumor, but we didn’t expect them to drop this quickly, and I’m guessing they didn’t either.

Today we’re just sitting tight waiting on what they will decide to do to see if he is bleeding anywhere other than the tumor.  Kevin’s pain level is getting better, as they have upped him from a 50 to a 100 Fetanyl patch.  We are hoping this takes care of his continuous, chronic pain.  As much as we didn’t want to go up on the pain meds, being that there seems to be no direct cause of the pain other than this highly invasive cancer, this is what we have to do.

In GOOD news, the pre-digested feeding formula is working!!  We can get a 1.5 calorie per ML feeding when we get home, which means if he can continue handling 120 ml/hour on the feeding rate, he’ll be feeding for under 17 hours a day.  This is a huge improvement to only being able to do 100 ml/hr on a 1.0 calorie per ML feeding for almost 24 hours a day.  This will give him GREAT freedom.  Being that he is handling that so well, he’s going to try a higher rate today to see how he can handle that.  Awesome!  This is a huge hurdle and prayer answered!

We had REALLY REALLY hoped to get to the Penn Manor (my HS alma mater) game tomorrow night for the big homecoming game against Manheim Township.  For the first time in probably 10 or so years, Penn Manor is UNDEFEATED!  Being a former Marching Band geek, this makes me very very happy.  I spent YEARS in the stands when they only won 1 game a season, so this feels great.  However, if we don’t get to this game, we’ll hold out for the bigger games against other undefeated teams in the division: Bishop McDevitt and Wilson (a team that has kicked our bums for many  many years).  So, if we miss the game-GO PENN MANOR!!!  (In other news, congrats to the Hershey Bears for a great season opening game and way to continue to ride Penn State!  Steelers….you’d better shape up :)!)

Anyways…even in our hopes to get out by tomorrow, we understand the Dr’s hesitation in setting us free.  We pray that this tumor is the only cause of the bleed, and that they will feel comfortable enough to send us home soon being that his stats are so good and  his pain is getting under control. 

I called about the Physical Therapy Aide position at Willow Valley yesterday, and my resume was passed along for the interview process!   I hope to hear from them soon once they receive more applications for the process.  This position would be perfect hours, and provide benefits, which is huge.  Pray that comes through!  I am continuing to search for a part time job with benefits, as I cannot work 40 hours a week while caring for Kevin as much as he needs right now.

I am also going to look into unemployment, medicaid, and all these things as well.  Even though we signed that waiver when we got married for immigration, I figure that it’s worth a try.  We are praying for exceptions to the rule in our case.  Pray that something gives and we can get some more financial help through the government systems and some non-profit grants.

We have been struggling with where to open up our trust.  I will be getting everything signed hopefully within the next week for the Kevin Boitson Recuperation Trust to open so that any donations can be put in the trust to be managed properly.  We have decided that it will most likely be at Millersville Credit Union as so many banks around us are going under, being bought out, etc.  What’s your thoughts on this? 

Continue to lift us up for hope, for strength, healing and miracles.  Big thanks to the staff here at LGH who are taking great great care of us.

God is listening.

…Special thoughts and prayers being sent to our Angiosarcoma friend Jennifer in NY.  I asked you all to pray for her two weeks ago as she was heading in for a “quick” fix of some issues related to her open heart surgery.  It was not quick, unfortunately, and ended up being a 4 day stay.  She is now left with some discomforting issues in which she will need surgery yet again.  Pray for strength and healing for her.  Lord, be with her now.

…also..

I am definitely a seasonally depressed person.  I LOVE snow and winter, but have trouble adjusting to the lack of light.  (I don’t think I would do well in Alaska!).  Driving back here to Conestoga from the hospital this morning I just had some thoughts…

I saw my first winter coat of the season, the first frost, the first chimney smoke, and the scattering of the vibrant evervescent colors of fall in the trees this morning.  I had felt lost just a few days before with the passing of summer without my participation.  In many ways, I was mourning my lost summer, along with so many other things in my life that are now gone.  But they are all false.  My sense of security in this life of having life, my general routine and habits.  Many of it is gone, and although it felt as if I was only mourning a lost summer, it has been so much more than that.

But this morning, for the first time, I felt a peace leaving the hospital.  Normally I would feel apprehension.  The anxieties of leaving Kevin “alone” and the what if’s of if I’m gone.  I realized I have a new false sense of security.  Feeling as though as long as I’m with him, nothing bad can happen.  However, none of that is true either.

Things can happen at any time, and this morning I realized more of the beauty of living in the present.  I am sure we have all heard the symbolism of the word “present” being used both as present time, and as a gift.  Both go hand in hand.  We are given a present every single morning.  This morning, it was the beauty of the new Fall season.  The crisp freshness of the frosty air.  The warmth and comfort of a winter jacket.  The feeling that the dying of the leaves was the springing of life. 

Be in the present.  Be happy in what you do.  Many people I am sure have wondered why I never stuck with anything-like a job, like a college degree.  I change…a LOT.  My family all knows this.  But as a great friend assured me yesterday, in my short 24 years, I have lived.

Travel to experience an unknown world, be with someone you love, do a job you enjoy going to, behold your family, pray to God as if your Life depends on it-because it does, embrace your friends, be loving of your self heart and soul, cherish strangers whom you have yet to meet, do not look down upon but give thanks above.  I may never have stuck with a job for more than a few years, or graduated with a college degree, or have felt like I have “done” something with my life.  But those are to society’s standards, not mine.  Be your own standard, and a standard amongst others. 

…just a morning thought for a lifetime plan.  Embrace.  Cherish.  Love.

Unfortunately, not much of an update because we really don’t know too much.  As you know, Kevin and I went to the ER Sunday morning for him coughing up blood and this extreme stomach pain he’s been having.  After a discussion with everyone, we decided it best to stay admitted at LGH (Lancaster General) rather than making the trek to Johns Hopkins.  We decided if it was something serious, we could always be transferred at a later time to JH.

Since then, not a whole lot has happened.  They have Kevin on Delaudid (spelling?), a pain medication that is working AWESOMELY to control his stomach pain.  However, they have not found the root of this evil.  As soon as the pain meds wear off, he’s back up to a 5-7 out of 10 on the pain scale.  Most of it is centered around the feeding tube.

He was also diagnosed with a mild case of pneumonia, which is most likely why he’s been coughing up blood (the coughing up can only come from his lungs since he’s no longer attached to his stomach from his mouth).  They have him on many different anti-biotics to counteract the pneumonia as well as any possible infections going on in his GI tract.

We’re on board with a team of doctors including our local oncologist, nutrition, GI, and soon Cardio-Thoracic.  We’re hoping they can all put their brains together to come up with the root of the pain rather than just masking it with medication. 

Kevin is getting a 2 unit blood transfusion as well today.  His hemo dropped to 8.2 which is not great.  He is definitely bleeding out again from the tumor, which was expected, as there are signs of it through his feeding tube.  We fully expect Kevin to have to be on continuous blood transfusions bi-weekly as long as he has this very vascular tumor in his chest.

Today we’re hoping to get ANSWERS rather than just more medication.  They also have him on meds to get him “moving” if you get my drift, as they believe that is also contributing to his stomach pain.

Pray that we get the answers we seek here in Lancaster and do not have to travel to JH.  Also pray this can be a short, successful hospital visit.  Pray for continued healing as God is the miracle healer of all!

I’ll update as I can, but I do not have the laptop with me anymore, so continue praying for only positive, and I am sure the Lord will hear our prayers.  Whatever His will, we follow.