For whatever reason, Kevin and I seem to be in synch with our sleeping.  In other words, we BOTH didn’t get much sleep for whatever reason.  I stayed up late finishing a book, then couldn’t fall asleep.  Kev just couldn’t get comfortable and his nurse was in and out most the night doing things.  Frustrating!

It looks like Kevin is in for a cat scan and an echocardiogram.  Lots of tests today, mostly due to being post-1st round chemo.  Kevin is still having some unusual heartbeats and a bit of bleeding, so they are watching both those things closely.  Cardiology should be by today to talk more with us about the heart rhythm issue, and hopefully we’ll find out it’s just due to the fluid around the heart causing stress.  We’d like there to be no additional problems!  The bleeding they feel may be caused to the breakdown of the tumor from the chemo-they’re considering doing another scan, but weren’t planning on doing one this early.  It just depends if his bleeding continues/worsens.  Keep this  all in your prayers…

Kevin’s cousin Doug flies in today at 2:30, so I’ll step out to pick him up, and then later this evening, I’ll be driving back to Lancaster for the first time in over two weeks.  It will feel weird being in the apartment alone, but I know Kevin is in good hands here.  I’m anxious to get some different clothes, see friends and family, and to just get away for a bit-which is ALWAYS good.

I’m finally starting to get a good hang of the Downtown and Johns Hopkins areas.  I actually don’t feel lost at all when I leave JH which is great.  I haven’t had to use my map in a while, and I only use the GPS when I need to find a certain store or errand.  It really is quite a varied city, but I don’t know that I could live here permanently.  I find that it takes an hour just to run a small errand-I just miss the more “small town” feeling that Lancaster provides.  Either way-this is home for now, and it does feel homey in its own way.

I’m a bit anxious about the BBQ tomorrow-more that I forgot to get a count from people, and they’ll show up needing 50 tickets!  That’s my fear nonetheless.  We’ll have extra for people who want to purchase the day of, and I know the Lord will help it all to run smoothly.  Big Thanks to Mandy S, Ashley M, My mom & Sis for helping to keep everything organized and put together while I’ve been away.  You gals are amazing!

We ask for special prayer today for Kevin to have a relaxing, restful day.  He is in need of his body relaxing and his mind to be at rest.

This evening, me and my Popeye’s chicken were enjoying some quiet time in the waiting room.  I saw the surgeon that’s been working with Kevin and waved hello when a lady next to me asked if I was a med student.  I told her no and we began talking about why we were both there.

Her son, and the lady next to her’s husband, just came in last night from New York.  He starting having pain in his hip last month, and now is here with….angiosarcoma.  He’s 37.

It’s unbelievable how God places people right in front of you.  Just after posting about how there are only about 1000 cases per year of angiosarcoma, I thought, what are the odds I would meet just one of the other families being affected by angiosarcoma?  RARE.

I don’t know much about them…but they are faced with an unbelievable hardship.  They cannot find the primary source of the cancer and were only given a timeline of 3-6 months.

I told them about our Faith, and said, “If God can give our husbands and sons the most rarest cancer in the world, why can’t he give them the rarest miracle?”  I wanted to pray with them, but other family came in before I could.

If I meet them again, as I’m sure I will…I’m going to pray with them.  But until that time, I ask that you lift this family up in God’s arms tonight.  They are dealing with what we did just two weeks ago-the uncertainty, the new surroundings, the fear, the lack of understanding.  It is such an overwhelming situation to be in, and even though I hope never to have anyone else go through this, it’s comforting to be able to minister to a family in such a similar circumstance.

Another thought…last night in the elevator, I saw this girl that I have continually run into.  Her sister is here and very ill with cancer.  They “lost her” twice, and she was brought back.  This morning when I came in, I saw her crying with her boyfriend in the lobby, and I’m fearing the battle was lost.  Please lift them up as well.

In this hospital, we continue to be surrounded with much grief and lack of understanding.  I pray for those around us who are weak in their faith and do not have a God to turn to with their grief.  I pray that somehow, through our journey, we can touch not just the patients and families, but the staff as well.

God is good, and in His mercy and grace, we can be a witness to others around us.  Give us those opportunities Lord.

Thank you for your prayers for those around us…

Don’t know much?  Neither do we!  Here are some random facts about angiosarcoma…

For example, when you google “angiosarcoma” there are just 295,000 hits.  When type in “lung cancer” there are 20.6 MILLION hits.

There is no official Wikipedia article just on angiosarcoma.

Angiosarcoma are types of tumors that originate from the blood vessels.

According to the American Cancer Society, 1 in 2 men, and 1 in 3 women will be diagnosed with cancer in their lifetime-WOW.

Over 1.3 million people will be diagnosed with cancer as of 2003 in the US.  Of those 1.3 million, just 1% will be diagnosed with sarcoma (just 13,000 people).

Sarcoma can occur ANYWHERE in the body because it’s a cancer of the connective tissue.

Of those 13,000 people per year, only 1,000 will be diagnosed with angiosarcoma.

There are 300,000,000 people in the US-I can’t do percentages well, but 1000 people vs. 300000000 people is quite a difference!

Just some helpful information!

Oh, some parts of the day are just not fun for Kevin….mostly, it just involves dressings and Kevin’s esophagoscomy bag.  We are still trying to work with the oscomy nurse to come up with a good solution to Kevin’s esophagoscomy bag problem.  With his intake of liquids, he is going through the bags quickly.  We don’t quite understand why it’s not working, as when it’s used an a urinoscomy bag, it works.  We are guessing it’s because of the location on the neck and the constant movement that dislocates the seal.  Unfortunately, we don’t have a lot of options to work with, but everyone knows it’s an issue, so hopefully we can get a solution soon!

Kevin was having some additional draining out some tubes today that looked a bit more red than usual.  The surgeon just came to take a look and doesn’t seem too concerned.  They’re going to take some blood cultures just in case, but Kevin’s vitals indicate that all is well.  Yea!

The surgeon did indicate that Kevin MAY be getting some of the staples out today which is exciting, and unexpected.  We’re not getting our hopes up, but we’ll see what pans out.

Kevin has been very cold lately, and it’s definitely bugging him.  We’re not sure what the reason is, but it’s possible it’s just because he finally doesn’t have a fever to keep him warm-that’s at least my hope.  We’ve been playing yo-yo with the thermometer, so we’ll have to see what’s going on.

I hope you are all doing great….for some updates on what we need prayer for, here ya go!

-Kevin’s chemotherapy treatment to be working to shrink/disintigrate the tumor

-Kevin’s chills to diminish so he can be comfortable

-More options for the oscomy bag and a solution that will last more than 12 hours

-Kevin’s drainage to slow and clear so they can take the tubes out soon

-The ability to stay in this room and not have to move again

-Safety in travels for Doug as he travels from Toronto, and Kristi, Marty, Ken and Linda as they wrap up their travel back to Winnipeg; also for me to travel back to Lancaster Friday evening

-For everything to come together smoothly the day of the BBQ and for it to be a great success

-For calmness to reign and anxiety, depression and fear to leave us

-Continued faith and strength during the bumps in the road

-Rest..

Thank you for your prayers-We lift you up with us!

I am SO HAPPY to say that both Kevin and I slept like babies last night!  It was much needed for both of us.  They have Kevin on some new medicine to help calm him and help him sleep, and it worked!  They’re working on lowering his pain medicine, as he’s not using it as much which is also a big plus.

Yesterday, Kevin got his Hickman port inserted just outside of his right collarbone.  It’s a bit tender today, but they’ve already started using it.  They’re hoping to consolidate IV’s when they take out the old IV port today, but they may still have to do one arm IV for a temporary time until he comes off of more things.

He is officially in the interim with the Chemo-we’re still waiting on the next rounds of drugs to start there.  I did get to speak with our oncologist yesterday by myself, which was nice, but also raised my anxiety.  I find that the more I know, the worse I think.  So, now I pretty much know everything I can about what’s going on in Kevin’s body, and yes, we have some fear from time to time, but we’re pressing on, and keeping our Faith.

The most important things for us at this time are to keep our Faith in God, and our faith in each other.  It is huge to us to show to each other that we believe in what each other can do.  Kevin’s faith is very strong and as he said to me last night, “It’s not do I THINK I can beat this, I KNOW I can beat this.”  That assures me to no end….

Today will hopefully be a good day-Kevin is having some abdominal tightness that we’re watching.  His heart is sounding better than it was, which is very encouraging.  He is going to get the old IV site out today, and get into a new chair in the next few minutes.  We look forward to many accomplishments ahead.

Tomorrow Kevin’s cousin Doug flies in from Toronto-we’re anxious to see him.  Tomorrow evening I’ll be driving back to Lancaster to be up for the BBQ and fundraiser.  I’m excited to see everyone, and I’m sure it’ll be a wonderful, overwhelming day.

Thinking of you all..thank you for your continued prayers-MUCH LOVE FROM BALTIMORE!

Today has been an ok day so far.  We met with one of the fellows this morning and Kevin is finally getting a hickman port!  This is exciting, as he will no longer have to get regular IV’s, except for 1 temporary one for the next week.  His chemo and other IV’s will go directly into the hickman and it will last for about a month with very low chance of infection!  We originally though he would be getting a mediport, but it was decided with the chances of Kevin getting a fever in the next 48 hours, it would be best to do a more temporary hickman.

Kevin was unable to sleep last night due to anxiety, so they are giving him some meds for that starting this evening.  We are praying the meds help to relieve his anxiety and allow his body to get the rest he dearly needs.

I got to visit with my mom and sister today while Kevin got some cleaning up/chair time.  It was nice to see them again-we’re finishing up the last minute details of the BBQ on Saturday and hoping all goes smoothly.  We’ll all be relieved to be done with it, but I send a HUGE thanks to them for taking the reigns to it so I can be here with Kevin without worrying.

Kevin is hoping to get some rest this afternoon, but we’re still waiting on the hickman to be “installed” either today or tomorrow.  In the meantime, leave some love for Kevin to read as he’s anxious to hear from all of you!

http://www.team-sarcoma.net/

This is a group that I was directed to.  It’s a great initiative to bring awareness to Sarcoma cancer.  I am DEFINITELY thinking about starting a team to get involved in this for next July.  I would love to raise money that will go towards Sarcoma research to find cure for a currently “incurable” cancer.

Please let me know if you would be interesting in joining the team, and I’ll look into getting our team set up for next year.  Their motto is “Sarcoma Knows No Borders” referring to body borders-this is so true.  This cancer divides and divides until it takes over, and our Faith is that God will intervene and His will be done to cure Kevin.

Check out the site, and let me know your thoughts.  Team Sarcoma here we come!

Did you know that just last week this blog made 1300 hits in just 1 day?  That doesn’t count people who check it more than once-that’s different hits!  I just think it’s awesome that God is helping us tell our story to so many of you.

So, this week, we’re averging between 300-500 hits per day.  We’d love that to grow.  Here is a cliff notes version again of our story, up to date!

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, 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 6 days.  The night before he came off the ventilator, 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 possibly even more rare.

Today Kevin has been on chemotherapy (taxol) treatment just over a week and is doin well off the ventilator.  There is no cure for angiosarcoma, but it does respond well to chemotherapy.  We pray and trust in God to shrink and disintegrate 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.

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 drinking juice, 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 near future!

We don’t know exactly what God’s plan is yet for us, or what the treatment plan holds ahead, but we trust in Him and give him the glory for bringing us this far.

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

Thank you all!

Today has been quite the day of poking and prodding for Kevin.  He had his esophogoscomy (yes, that is the correct word) bag changed, and re-figured with the oscomy nurse.  We’ve shaved his beard CLEAN off, he’s had his dressing changes on EVERYTHING, and it hasn’t been pleasant with the tape coming off.

Needless to say, he’s just rather uncomfortable tonight.  He did enjoy getting into a chair, but was only there for a few hours, as he still can’t get comfortable sitting.  It will be so much better when the last chest tube is removed and he can finally begin walking.

He said he was pretty amazed to find his legs could barely hold him up, let alone walking to the chair next to the bed.  He has a long haul of PT ahead of him but he’ll get there.

This afternoon Kevin had another heart-rate jump, but no one seems to concerned.  The cardiologists figure this is normal due to the paracardial fluid around the heart.  They’re keeping a close monitor on it, nonetheless.

Kevin has also been having a lot of coughing and just general discomfort.  Pray for easement of his pain and loosening of his cough to allow him to relax and get some much needed rest.

We ask for prayer for rest and relaxation for Kevin as he’s unable to be comfortable right now.  I also ask prayer for my new housing tonight and safe travels for all.

Please continue to lift as up as we keep on keepin’ on.  Thank you.

Many I’m sure are wondering how Kevin can PACK AWAY the juice.  Well, it never reaches his belly!  The juice wets his very dry mouth, travels through his esophagus, out his neck and into an oscomy bag.  The bag is connected to a tube that drains into another bag.

It gives him the pleasure of “drinking” even if it doesn’t go anywhere but to a bag.  For someone who was told they can no longer eat and drink, possibily indefinitely, this was a huge hurdle to overcome.  The nurses and doctors encourage Kevin to drink as much as he wants, as it’s one of the FEW pleasures he gets during this time.

So, I ask you to stock up on the Juicy Juice Berry and send it down with my parents.  In fact, if you’re coming to the BBQ, bring a bottle or so with you for me to take down!  Who knows, I may have a whole car load of juicy juice berry to bring him!  Haha.  Weis and Darrenkamps aren’t gonna know what hit them!

Ok..now on to some updates!!  Kevin is currently in the room with his mom, brother and the physical therapist!!  This is a monumental time for Kev, as he is getting moved into a chair, and I would love to see it, but I also want Linda and Ken to have some alone time with Kev before they leave.  We don’t know when they’ll be able to visit again, so this could be a hard goodbye for them.

Today, Linda and Ken will travel to Lancaster to spend the night before hitting the road early tomorrow back to Winnipeg with our friends Marty & Kristi.  Pray for safe travels.

This afternoon, my good friend Kristen is coming down to take me “out on the town”.  I expect to get some sunshine at the harbor and I’m excited.  Kev knows I’ve been itching to be out for a few hours for some fun time, so I’m gonna get that in today while he’s enjoying his new chairside view of the city.

Tomorrow my mom and sister, and maybe Curtiss and his wife Robyn will also come to visit-should be a great time seeing everyone and for them to see Kevin’s progress just in the past couple days.  Come Friday, our awesome cousin Doug flies in from Toronto to visit Kev for the weekend.  The timing couldn’t be better, as I’ll be in Lancaster from Late Friday night to early Sunday morning.

A HUGE HUGE thank you again to everyone who bought tickets, and everyone volunteering their help this Saturday.  It is gonna be such a fun day!