5/30/12 - We got to come home!

Hello Everyone - We have fantastic news to share so far!  Jas had his scope on Tuesday and everything went smoothly!  Many many many praises to the Lord!
Praise #1: Jas does NOT have a leak!  THANK YOU THANK YOU THANK YOU!
Praise #2: They took out his stent with no problems or tears
Praise #3: They did not use a narcotic for the procedure so he was not sick afterward.
Praise #4: He is feeling better than he has in the past month!  He came home and ate an omelet and it didn't hurt.
Praise #5: We got to come home that same day!  Hallelujah :)  We had our bags packed and Taylor's too bc we were pretty sure they would be admitting him back in as bad as he felt.  Can I just tell you how wonderful it was to go to the hospital and not be admitted?  It's been awhile!  So incredibly thankful!

What we did learn is that Jas had developed 2 ulcers at the top of his stent and food was stuck between the wall of his esophagus and the stent.  The combination of these two factors were what was causing the pain that he had.  I wish I would have had a video of him comparing how he felt before the procedure and then after.  Seriously, he acted and felt like a new man walking out of the hospital!  So nice to see him smile again like that :)  Ultimately, we'll see what happens from here whether or not his esophagus continues to stay open now to continue to get food down! 

So, we are now waiting to hear from the Doctor about when they plan to take out the chest tube.  More than likely next week as they don't want to do too much too close together.  We'll see.  They were a little shocked when they learned today that Jas had taken matters into his own hands and clamped the chest tube himself.  Oh my!  This man is starting to go stir crazy :)  This is something you have to do for 2 days minimally and then go in for a CAT scan to see how the abscess responded to no longer having a way to drain air or fluid and if it looks ok, then they will pull it.  We'll keep you posted on when that will happen!

Since our last post, my goal has been to make the week and a half of waiting go as fast as it could for Jason.  I guess God had the same plan, because He lined things up for us once again and we did as much as we possibly could to get out and have a change of scenery while we waited : )  We were so blessed to go on a 2 day get away to Massanutten, VA thanks to our dear friends the Rowes and their parents!  They had 2 days of their timeshare week that they couldn't use so they opened it up to us which was so incredibly generous!  It was perfect bc at that point Jas wasn't eating and drinking anything - it hurt so bad and he needed some kind of change up to keep his spirits up.  So, we were able to stay in the gorgeous mountains, let Taylor swim and enjoy the fresh air while being just 2 hours from home if anything happened.  The icing on the cake was that they included a ski lift ride for the family to do while we were there.  It was so much fun, something that Jas could do and Taylor thought she was on a roller coaster ride lol.  Her little hands were up in the air most of the time!  We sure hope you are as amazed as we are with how God continues to provide us with blessings in His perfect timing when he know we need a pick me up!  THANK YOU Rowes & Brucheys!  Such BIG hearts you have : )

Taylor's 1st Ski Lift Ride

After coming back home to Frederick, I was able to host my very first Believe Big mug making party in Frederick at I Made This! pottery studio.  Can I just tell you how jazzed I was to be able to spend a few hours with my lady friends painting mugs that I knew would be delivered to current cancer patients to brighten their day?  Loved it!  The main message that we have when distributing these mugs is to share with others to "Believe that with God all things are possible!"  And when you see the mugs below, keep in mind these are the "before fired" version and you will see only one word on them - Believe!  Enclosed in the mugs will be the Have No Fear Prayer for them which we had asked for you all to pray in the past for Jas.  It brings such JOY to be able to help brighten other people's days when battling cancer, knowing how important it is to keep spirits up during the time of treatment and recovery especially!

1st Believe Big Mug Party!

Pre-fired Mugs.  Excited to see them after they are fired!

That led into Memorial Day Weekend!  Thanks to our dear friends we were busy all weekend with various cookouts and parties.  What fun we had!  That led us into Tuesday morning, the day of the scope.  Wheew, we made it!  It sure was tricky keeping Jas from getting dehydrated on the 90 degree days when he wasn't eating/drinking anything orally.  Praise the Lord that we made it through safely!  Here are a few festive pics of Taylor sporting her red, white and blue!  Hope you all had a wonderful Memorial Day Weekend!

                                                                            
In closing, I wanted to share a YouTube video that was sent to me for inspiration from our dear neighbor Dagmar-  Thank you!  Such a good reminder that there is always someone else out there that is worse off than you and it comes down to the attitude that you have through your challenge and how you can use it for the Glory of God!  You'll have to copy and paste it into your browser to watch, but enjoy!  It's worth the entire 7 minutes!    http://youtu.be/H8ZuKF3dxCY


With Much Love in Him,

Meg

5/22/12 - Which Direction Are We Headed?

Hebrews 12: 1-2 ...and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God.

Well normally when you run a marathon, the race is clearly marked and you generally know what is ahead of you.  At least you should know where to go right?  Our marathon as you have seen is anything but, so we will continue to focus on what is in front of us each day and not be anxious for tomorrow (Matthew 6:34).  As that is what God expects from us, one day at a time, only he knows what the future holds. So we approach Him daily and embrace the little things and allow Him to shape us through those daily.  We were clearly reminded of this again when one of our pastors preached on Romans 8:28-29 this weekend.  Does that verse sound familiar?  haha.  What perfect timing God employs through a pastor on a verse we've been embracing this past year through these two cancer trials.

Here is the link to the sermon if you are interested in listening to: http://www.fcfchurch.com/media.php?pageID=29&itemID=210  (Copy and paste into your browser. Then scroll up to the 5/20/12 - The Little Things sermon.)  We have also attached a link to the sermon in the Resources section on the right hand side of our blog titled The Little Things - 5/20. You will have to go to wilestrials.blogspot.com to find this link.  We would highly recommend you take the time to watch it.

So a quick update from Meg's last post.  I finally got out of the hospital on 5/3/12, and of course I got to bring home my new best friend....Mr. Chest Tube.  After another hospital stay, it felt weird walking out of that place.  As in the past, I got to leave but with restrictions in eating, continuing on a clear liquid diet with the prospects of increasing to full liquid and solid foods. While I was still in the hospital our mom's switched coverage here at home. Meg's mom headed back to Ohio and my mom flew in before I was released.  We were so incredibly grateful that both were able to stay 2 weeks to help out so we had live in help for a month.

It felt great to be at home again, to have my mom here helping out and to get to see Taylor for more than just a few hours every few days.  My mom continued what Meg's mom started, which was getting up in the mornings with Taylor so we could sleep in as long as needed to continue in the recovery process.  That first night Megs and I slept almost 12 hrs straight through.  I can say I have never slept that much at one time.  Guess it shows what poking and prodding every four hours for 2 weeks straight does to one's sleep cycle.

Well that weekend was nice, got to relax, rest up and go to a comedy show that Megs had set up months ago.  We weren't sure if we were going to be able to attend until the day of, but it was nice to go out to dinner (I got to have broth soup of course) and catch up with our amazing friends and then attend a great show together by comedian Tim Hawkins.  Very talented guy and family friendly! Check out his youtube videos at some point, he'll have you cracking up.  Which by the way, might not have been the best thing for me at that point, as it did hurt.  But hey, if a Dr can cause me pain, self inflicted discomfort I guess is good for the soul, and it was nice to do that, just laugh.

Night out with our awesome friends who have loved us through this past year in so many amazing ways!

 Then after the weekend they allowed me to pick up my eating to a full liquid diet.  Gradually, I could start to feel the energy start to come back.  Then on 5/11/12 we went back to University of Maryland Medical Center for another CT and consult with the surgeon.  The CT looked good, but I still maintained an air leak in the abscess, so we decided to leave the chest tube in another couple weeks to see if the body would naturally seal off the leak with no adverse effects.  They also opened up eating to solids, which was nice, but I will say after being through this cycle a number of times now, it wasn't quite as exciting as it was before.  So after a good weekend, my mom flew out and we welcomed in my sister-in-law, Aunt Jode, from Colorado aka Taylor's new best friend for the next handful of days.  We sure did appreciate all the effort that Jode & Matt put into arranging schedules so that Jode could come help us!  It meant so much to us and I know that Megs loved having her sister around, who she typically only gets to see twice a year now.  God continues to bless us with help when we need it and we are so grateful.

Then on  5/14/12, let the detour in the race begin again.  Just as we thought we were maintaining a good pace I started having trouble swallowing with pain in my throat, as well as increased pain in my chest and drainage out of my chest tube.  I thought the wheels might be coming off again, but the symptoms have stabilized.  So after consulting the Thoracic team all week, they backed me off solid foods again to a full liquid diet to see if that improved any of the symptoms over the weekend.  Soups and Smoothies welcome back full time! Then after talking to the Dr. this past Monday with no change in side effects between being on liquids vs. solid food, we decided to go ahead and get another scope done next week (the Dr is out this week, so it's scheduled on next Tues. 5/29/12), to see what is going down there. We are not sure if the stent has moved or dropped out of the esophagus or what could be causing the pain.  That of course means they will keep the chest tube in to make sure they don't do too many changes at once.  So me and my little buddy will get some more quality time together. We will see what comes of the scope next week. Stay tuned.

So, in the hustle of these last few weeks, we were able to get a check up appointment with Dr Aboulafia, my Orthopedic from my first cancer.  During one of the many rounds with one of the Drs, while we were in the hospital for my esophageal cancer treatment, one of them had asked me how my first cancer was coming along...Megs and I chuckled and said, "You know Doc, we haven't really thought about it much lately."  Shoot, it has been 9 months since the surgery and a year since it was diagnosed.  That accompanied with a call to my cell phone from Dr A to just check in to see how I was doing, we thought we should get in for a check up.  After some deliberation on whether I could get an MRI done with a stent (part of which is metal) in my esophagus...I didn't want to my stent to come flying out when they turned the machine on...I got it done and got in to see Dr A.  PRAISE GOD! Everything came back clear and no signs of recurrence in my leg.  It was also really good to chat with Dr A, he was his normal jovial exuberant self and we laughed and joked about a number of different things.  We congratulated him on receiving an award at the recent Esophageal Cancer Action Network's annual fundraiser, in which he used to sit on the board of directors.  His eyes then caught Megs Philippians 4:13 bracelet...it not the first time he's seen that verse...but he read the whole thing out loud.  That brought a smile to our faces.  Overall, we came out of that meeting relieved, encouraged, strengthened and blessed that God continues to use us and shape us through all this.

So hopefully that catches everybody up, and thank you for your continued prayers and support.  Speaking of support, we are looking forward to the Mile4Wiles event on June 2nd.  As long as I feel well, I will be there and hopefully walking with you all who are able to make it. We look forward to seeing those who will be in attendance and send a huge Thank You to all those who are supporting the event.  We are blessed by your overwhelming generosity!

Thought I would end on what keeps me going each day. Taylor! I know my ugly mug doesn't bring the smiles that her's do.  So enjoy, I know she has enjoyed having visitors and getting to do special things with them.

Trust in Him
God Bless!
Jason

Love her expression in the reflection.  Not sure which one she see's looking at...Good thing she has her Mother's looks. haha  Thanks Ian & Wendy : )

Teaching Mama & Papa how to skip rocks on our nature walk (Meg's parents)

Gigi (my mom) & Taylor at the playground

Aunt Jode & the girls

Strawberry picking

Taylor's 1st pony ride at the YMCA Fun Weekend

What a face painting, of course all pink flowers

Enjoying the warmer weather and flowers around the house.

5/17/12 - Friendly Reminder - Miles4Wiles Early Bird Deadline This Friday

Walk the Miles with us!   Saturday, June 2nd: 9am to 12pm

We wanted to send out a friendly reminder that the Miles4Wiles early bird registration ends this Friday, May 18th.  After Friday, registration will move up to $50 per walker. 

Miles4Wiles invites families (including kids of all ages), friends and the entire community to come together for a morning of fresh air, light refreshments and beautiful mountain scenery as we walk a 1/2 mile course in honor of Jason’s ongoing battle against esophageal cancer.  

Ready to sign up?  To register and/or donate, click on the link below and choose the registration or donate tab at the top of the webpage.

  

http://miles4wiles.webs.com/

Questions? Email miles4wiles@gmail.com

5/2/12 - What a Week!

Hello Everyone - Greetings from the hospital  :)  Yep, we're still here - 13 days in!

We wanted to get a detailed update out on this last week's happenings as the last post seems so long ago!  Too many events - Wheew!  So last Tuesday the 24th, Jas had a chest tube put into his back, directly into the middle of his right lung.  After about a day of getting the right pain med combo going, his pain level has been manageable and his nausea stopped after deciding that the narcotics were making things worse vs. better.  We truly are amazed at how much more energy he has these days compared to this past month.  What we thought was a cold, clearly was this abscess festering/growing that was sucking his energy and causing more than normal pain.  So, he's back down to his typical dosage of ibuprofen a couple times a day and doing great on the pain end of things.

Also, Jas had a CAT scan a couple days after the chest tube was inserted that showed us great news!  The abscess was half the size of what it showed to be before the chest tube was put in.  Our surgeon was quite encouraged!  But we sure did Thank God in front of him for the wonderful news! 

In all honesty, this has been our hardest hospital stay yet in terms of frustrations that we've had with mistakes that have been happening.  While we don't want to spend much time on this point, because it deters us away from our main focus of this blog, we will say that MAJOR problems have happened almost daily that have led us to wits end.  It truly is frightening to think about patients in hospitals that have no advocates and/or mentally are not able to comprehend what is going on while admitted.  All things came to an absolute head yesterday!  They did a procedure on Jason in the morning that involved injecting medicine into his abscess which then leaked(gushed) into his lungs, causing him to choke/not be able to breathe and ultimately throw it up.  After that happened Jason questioned the Dr. further and found that this Dr. had not been forthcoming with him prior to the procedure and that the procedure had not been cleared by his surgeon.  The surgeon knew that there was an air leak in Jason's chest tube and that this procedure would do nothing for him because of that.  Wow,Wow, WOW!  I'm sure you can imagine how upset we were that he had to go through yet another episode like that due to a mistake on the Dr's end.  We are to the point where we feel like we need to guard the door and not let anyone touch Jas unless our primary Dr. told us the night prior that they would be coming to do X,Y,Z.  You really have to be armored and ready for things that are thrown your way...sadly enough!

However, here's the really cool part!  God perfectly timed Jas' good buddy Dan to visit us in the hospital last night after one of the most frustrating/emotionally exhausting nights we've had yet.  Dan happened to be in the states for the week and Jas was thrilled to get to see him while in town.  God used Dan to help encourage us on a really, really tough day to remind us our purpose through this journey - to bring others closer to Christ by allowing them to join us through this trial.  Who would think you would get to experience true JOY, when you are so emotionally exhausted from the chain of mistakes/frustrations that have taken place that have been out of your hands?  Well, once again God provided that to us!  Dan shared with us how he and Heather (his wife) have been positively impacted in their walks with Christ by following our story.  Ah... isn't God so good with his perfect timing?  He knows exactly what we need and when we need it and continues to provide us exactly what he knows is best.  And that helped bring our focus back to where it needed to be.  And it was such a blessing to catch up with him and have him pray for us before he left.  THANK YOU DAN!

So, at about midnight going into Wed morning they took Jas down for another CAT scan to see if there were any changes to the size of abscess.   We were praying that the last mishap wouldn't cause us to be in the hospital for yet another week.  After speaking with our surgeon about the CAT tonight, we learned that the abscess was slightly smaller than last Friday and that his lung damage had almost fully recovered.  PRAISE THE LORD!  So incredibly thankful!  As long as tomorrow's x-ray looks ok, they will release Jason home tomorrow (Thursday).  Now he will be coming home with his chest tube in, until his "air leak" in the abscess heals.  He will remain on liquids until early next week and then we may be able to introduce smoothies.  So, we'll be back to Baltimore at the end of next week to test his lung to determine whether it needs to remain in longer or not.  They are being conservative in their approach due to it involving his lung, which is absolutely fine with us.  We just need to continue to pray that he doesn't lose any more weight and can at least maintain it at this point until he can get back on food again. 


In the meantime, my mom has flown back to Ohio and now Jas' mom is in town helping out with Taylor.  So comforting to know we have live in help right now to give me the flexibility to be with Jas as much as needed.  Thanks GIANT THANKS to the mommas : )  And a BIG THANKS to our friends (Brandie, Mel, Renee, Dan, Eric) who have made the trips to Baltimore to keep Jas company, transport Taylor and Grandmas back and forth to Baltimore to help brighten his day, along with helping with airport drop off.  It was an amazing help!

Please continue to keep Jason's ultimately healing in your prayers and for us to address any issues/concerns in a way that is Christ-like.  God can use us through this too!

Much Love,

Meg