Along this journey, Kevin and I have founded much needed humor in many situations.  Obviously, the juice thing is the biggest.  I literally buy OUT the store of Juicy Juice Berry.  So don’t even THINK about coming to visit with a gallon or two in your hand!  Haha.

Other than Kevin’s Juicy Juice Berry fun, there are a few things that just make us laugh!

Kevin’s Yankauer…yes, it’s called a YANKAUER.  It’s funny.  It’s actually the thing that sucks Kevin’s mucus from his mouth after he coughs-gross, I know.  But funny!

Zosyn, and Zofran, affectionately known to us as ZOOLANDER.  Yes, Kevin named it after the dumb, funny movie which portrays Ben Stiller and Will Ferrell as competitive models.  So some of Kev’s drugs are apparently competing to model in his body :-)!

Taxol..This is Kev’s chemo.  I refer it in my mind to the Tax Collector.  It’s close enough.  it’s come to take stuff away from us, and we’re paying for it.  Ha!

Baltimore, A.K.A GHETTO.  Ok, yes, the Inner Harbor, Fell’s point…even some of the main downtown are BEAUTIFUL…but for those who have never been to Johns Hopkins, the surrounding areas are places you SHOULD AND DO not walk alone, even during the daytime.  Not so funny, but a warning more so for people visiting!

And there is yet, one thing that’s pretty funny.  Sad, but funny.  As you leave the ghetto area of the “east side” of Baltimore, there is a HUGE sign with a pregnant Mona Lisa that says “WHO’S YOUR DADDY-DNA PATERNITY TESTING”.  As I said, sad, but funny.  Unfortunately, my computer won’t let me upload that picture.  You’ll just have to see it for yourself.

As many of you know, Kev & I have an odd sense of humor, so I hope you at least enjoyed a FEW laughs with us!

For those who don’t know, Kevin is officially addicted to Juicy Juice Berry.  However, today I introduced Kev to Nantucket nectars Red Plum.  Kev told me it’s a “SHOWDOWN”.

So….here’s the SHOWDOWN!

Nantucket Nectar Red Plum Vs. Juicy Juice Berry

Is it Nantucket Nectar Red Plum?

Or is it the much loved Juicy Juice Berry?

It's a hard decision..who will be the winner??

Looks like it's STILL Juicy Juice!!!!! The Gold goes to Juicy Juice Berry!

http://www.sarcomacancer.org/

One of the biggest hurdles with the type of cancer that Kevin has is the rarity and lack of knowledge about this type of cancer.  Most people have never heard of angiosarcoma, but everyone has heard of lung cancer.

This is a great site to pass along to your friends and loved ones to let THEM know more about sarcoma cancer.

Spread the support!

Greetings from 5D at Johns Hopkins.  Late this morning Kevin was moved, yet again.  But in this case-it was a GOOD GOOD MOVE.  Kevin was in the Leukemia unit here at JH because they had critical care treatment in that area.  Now, he is in with the “solid tumor” unit, which means he’s out of critical care!  He is making amazing progress.

Today there was lots of talk with doctors about his fevers, that have been a bit of a yo-yo, and determining whether they can put in what’s called a port where his IV’s and chemo treatment will enter his body.  However, he needs to be 48 hours fever-free, and so far that has no happened.  They are holding steady, as the current lines he has in are not infected.  So, for now, no changes. We’re praying for a 48 hour period of no fever so they can do this procedure in the near future.

His feeding tube adjustment is on hold for another week-they’re not too concerned with it right now, as he is at least getting IV feed.  However, this cannot continue on for weeks, so hopefully they can get the feeding tube fixed and up and running no later than the beginning of next week.

This afternoon we met with Dr. Thornton-did I mention that she’s AMAZING?  They have to do one full round, or 3 sessions, before they can do a scan see how the chemo is hopefully shrinking the tumor.  This will be roughly 60 days.  Now, it is possible Kevin could be released from JH before it is up, however, if he continues on the continuous drip Taxol chemo, he will need to either be in the hospital, in a rehab, or a very slim possibility of him “bringing it with him” home.  Most likely, we’ll be here at JH, but all options continue to be open.

So…as hard as it is to hear, there’s a plan, but not really a plan 🙂  That’s the best information I can give you for now.  So, we’ll continue our plans to give up our apartment, and look forward to getting things packed up in September and settled in here at JH.  Tomorrow, I move in with family friends Amy & Tim just a few minutes from the hospital.  I look forward to the comfort of their hospitality, and to finally be settled in one place.  THANK YOU.

I can’t wait to see most of you this Saturday at the BBQ!  Until then, keep praying, hold steady, and know that despite all, the Lord has blessed us in the most unbelievable ways, and that HE does have a plan.

Well, the title says it all.  Apparently, taste buds change over time, and unfortunately, the blueberry oolong turkey hill tea no longer tastes as good as it once did.  Oh well!  The Juicy Juice berry is Kevin’s new vice-so, if you come for a visit, bring a bottle!

Thanks for all the offers to help pack/move-I’ll let you know what days I’ll be up in September to be packing up.  I appreciate it!

Today was a nice day of visiting with my parents.  Linda and I got a few errands ran, and got the evening to relax.  Kevin also FINALLY got a few more hours of shut eye.  I hope he can sleep tonight-make that a big prayer!

***

I just want to make a very special thank you to everyone for your cards and gifts.  I have been receiving SOOOO many cards and gifts, I simply do not have the ability to write everyone of you thank you notes.  So please, if you, or you know someone, who has sent me a gift, give them a big hug from Kev & I to them/you!  We thank you greatly for your support to us during this time.  It means the world to us.  You are truly wonderful people.

I look forward to seeing ALL of you at the BBQ on Saturday.  It will an emotional, overwhemling day.  Your support, in helping us sell over 700 TICKETS is amazing.  We are so glad to have you be a part of our lives.

THANK YOU!!!

Hello All!  Kevin is finally getting some sleep thanks to Benadryl.  I knew there was a reason that stuff always knocked me out!  The Benadryl helps his mind not have an “allergic reaction” to the drugs and helps still the nightmares, and to knock him out.  He got a bit of sleep last night, and plans to sleep again this afternoon.  A good Sunday afternoon nap is always good.

Kevin is thoroughly enjoying all his new drinks options.  Juicy Juice Berry, Welch’s Orange Pineapple, and my parents are bringing a special treat today: Turkey HIll Blueberry Oolong tea!  Kev is excited.

There is talk to take out some of his tubing today which would just be AWESOME.  His drains are slowing down and not filling as quickly which is just awesome.  The two chest tubes in Kevin’s right side are very painful, so it will be awesome to have those out.  Also, he’ll be able to get up and maybe even walk when those chest tubes are out.  The tubes they plan to take out soon, are not yet the chest tubes, but some of his smaller lung drains.

The feeding tube problem that we had is going to be solved with a replacement.  They are going to replace/fix it on Monday-I’m not quite sure what type of procedure that entails, but it will be good to have that working again, especially since it’s kind of sinking in right now.

Slowly, but surely, Kevin is having some of these annoying plugs, pipes and whistles removes, and that makes us all happy.  His fever has been contained for the most part, but they are monitoring his elevated blood pressure.  They still don’t plan to do anything about the fluid around the heart for now, hoping the chemotherapy will shrink the tumor enough to take pressure off the heart to stop the fluid from forming.

My parents are coming to visit today, which I am greatly looking forward to.  We’re also expecting visits from Kevin’s bosses sometime in the next coming days/weeks, which I know Kev is looking forward to as well.  His work has just been phenomenal to us, and we cannot thank you enough!

Tuesday, Kev’s family heads back to Winnipeg, so that will be a hard day for everyone.  After that, I’ll move into my new accomodations about 15/20 minutes away, and will be focusing on getting this BBQ rolling next Saturday, and then slowly packing up the apartment.

As much as material goods are not of concern to us, especially now, it’ll be hard to pack up the place we’ve made our home for the past year and a half.  We have some great memories there, love the area, and our neighbors.  However, it’s always good to “purge”, and selling off some un-necessary things will be good as well.  Come September, I’ll need people to help me pack and move things either to my parents, or to the Salvation Army store to give away.  If you can help me, please send me a message.  Thanks!

When all this chemotherapy is done, and we’re in the clear for a while, we look forward to being back in Lancaster with a bit of “normalcy”.  I know Kev would rather be working than be in that bed, but we have a long haul before that can happen.  Someday, we WILL be back and up running.  Kevin WILL beat this-he is giving himself no other options, and we are praying that is the Lord’s will.

God has shown us the miracles he had and has in store for Kevin, and I trust God’s will.  Our faith is strong and Kevin is amped up to beat this!  We are strong, but only strong through God’s love and strength.

This weekend is fairly quiet, THANKFULLY.  We like quiet.  Kevin is trying as many juices as I can bring him to “drink”, and is enjoying it greatly!  Linda, me and another lady who is staying at the McElderry House went to Walmart to do some shoping and get some things for myself and Kevin that we were lacking here in Baltimore.  I made sure to also buy a Baltimore atlas, as my GPS doesn’t always like to work with me!

The Dr visited with us this morning, after Kev had another night of no sleep.  He is exhausted to say the least.  He has lots of nightmares from the pain meds, so they are working with pharmaceutical to come up with a combo that will help him rest, without the nightmares.

They are closely monitoring the fluid around his heart.  They do not want to do what’s called a “window” to drain the heart, as he already has so many things hooked up, sticking out, and draining from his chest area.  So far, his heart rate is good, and they are watching a possible climbing blood pressure.  Again, all things that aren’t too serious, just need to keep an eye on.

I am praying some housing arrangements open up for us.  Tonight is our last scheduled night at the McElderry house, and nothing opened up in oncology housing.  We’re praying the house gets a cancellation, and we can stay there through Tuesday, when Linda and Ken leave to drive back to Winnipeg with Marty and Kristi.

Come next week, I’ll be moving into my temporary place with close family friends of ours about 20 minutes from the hospital.  I am blessed to be able to stay with them with the uncertainty of length of time.  Weeks, months, we have no idea.

For many, it is hard to not be able to hear a definitive plan, like how long we’ll be here, when we plan to come back to Lancaster, etcetera.  However, with Kevin’s type of cancer, and only just beginning chemotherapy, we have no timelines for how quickly things can happen.  It is all in the Lord’s timing.  For someone like me, who is a planner, and a bit of a control freak, it has certainly been a lesson learned.  I no longer have any expectations/plans for any day, I just wake up, and roll with the punches.

We are enjoying our time spent together, the quiet moments especially when no one is bugging, poking or prodding.  The Lord has been good to us.

On an especially HAPPY note, everyone sold over 700 BBQ TICKETS!!!  We are THRILLED!  I ordered 800 meals, so we hope to have a few extras.  Anyone in hopes of having extras that day, can call my phone at 682-0365 around 1:30/1:45 the day of the BBQ (August 23rd) to see about purchasing possible extras.

Anyone wanting to help put together meals, arrive no later than 9 am the day of the BBQ at New Danville Mennonite church at 103 Marticville Road in Lancaster to get things rolling!
You are all amazing, and a blessing to us. Thank you for all you continue to do.  YOU ROCK!

T

…For those just joining our humble little corner of the webspace, here is a cliff notes version of The Life of the Boitsons!

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 until 2 days ago, when they finally took it off, and removed his catheter.  The night before, 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 48 hours 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 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.

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

Thank you for all.

I just wanted to let everyone know.  First off, EVERYONE has been so absolutely, amazingly, beyond words generous to us not only spiritually, but financially.  In the beginning of this journey, I had hoped only to use the donations we received towards housing, transportation and medical costs.  In the past week, with the situation we are currently in, I had to take a possibly permanent leave of absense from my job.  I plan to get a job here in the next month, once I can close my loose ends in Lancaster for my job and our apartment.  However, in the meantime, the donations will not only be paying for the above mentioned things, but for our general bills as well.

If ANYONE would like their donation to only go towards medical, housing or transportation, please let me know and I will make sure your money is only spent on those items.  Otherwise, it will be supporting our bills, along with the housing, transportation and medical costs while we are in limbo.

Thank you for your understanding!