The first week after the walk, in early June, was a pretty
good one for Jas! He was feeling and
doing great! However, by the end of the
week, he was unable to get anything down including liquids. That was interesting bc usually we could
still get smoothies down him when his esophagus began to close up, but this time even water was an issue.
Thankfully at that point his feeding tube was still in! So we prayed a lot for quick resolution while
we waited to hear back from the Dr. as to when they could get Jas back in for a
stretching. While we were pretty
frustrated that the team was not getting back with us over the course of a
handful of days regarding when Jas would be scheduled in for stretching, we
experienced a miracle with God completing removed them from the picture to solve the problem temporarily! After Jas was unable to eat or drink anything
for about a day and a half, we decided to try to make it a goal to at
least get one smoothie down a day to keep his digestive system working and to
not completely shut down like it does each time this happened in the
past. So, he did try to work toward our
new goal and guess what? It went down
vs. coming back up! Thank you Lord! Immediately after Jas tried some soup which went down with no problems. And very quickly he progressed to some leftover
Thai that he had not been able to eat and that went down
well. Holy Smokes! God opened his esophagus back up without
involving the Dr’s at all. THANK YOU
Jesus! What a HUGE relief! You have to realize, our concern was building
pretty quickly at this time bc they had told us that their goal was to take the
feeding tube out of Jason by the end of June.
In the back of our minds, we kept thinking what on earth would Jas do at
this point if his feeding tube was already out, as they would have no way to
keep pumping calories in him if it weren’t still in... Very concerning to think about! So from that point until his next stretching
on June 13th, Jas was able to eat/drink thanks to God's intervention : ) Don’t get me wrong, it wasn’t easy getting it
down as his esophagus opening was extremely small again, but open enough for
calories to go down.
The stretching on June 13th went smoothly with no
complications. YAHOO! Thank you Jesus! We will never take what should be a somewhat
easy procedure (while it requires them to put Jas under each time) based on what
happened earlier this year with the tearing and hospital stay! So when he
goes in for a stretching, they measure the opening of his esophagus to see if
it’s wider than the last time or not.
Then they inspect his entire esophagus to see if there are any signs of
cancer or other problems while they are in there and also take a look at his stomach to make sure
there are no concerns there either. So
far so good! Then to do the stretching
part of the procedure, they use a balloon and inflate it on the inside of his
esophagus to force it open to a certain diameter. Each time he goes in at this point, they will
“stretch” it out wider than the time before.
So, here’s another REALLY cool part about that day! I had been discussing with Jas for many days
(while we were frustrated about the length of time it was taking to get Jas in
for the procedure) about how I was going to talk to the Dr. to see if they
could just put him on a standard schedule to do a stretching every two weeks
for now, since that seemed about the timeframe that his esophagus stayed open
before food would start getting stuck again.
While Jas thought I was crazy (he thinks this often of me LOL), we prayed a lot for God to help us
come to an agreed solution with the team that would have a greater sense of urgency and help us to be more at peace in case this happened again. Well, while Jas was
under for his procedure, our Dr’s Asst. Jackie (who has been amazing to us
since Day 1 with helping us get in with our Dr. much quicker than the average
patient and treating us with a Huge sense of urgency) came in to the waiting
room to see me and give me a big hug.
While I shared with her our concerns about the length of time it was
taking to get Jas in when he had an emergency like this, she was extremely
compassionate. And before I even
recommended my “crazy” idea about pre-scheduling Jas in for every two weeks,
she looked at me and said, “why don’t we put him on a treatment schedule to
where he will be on the books to have a stretching every two to three weeks?” Are you serious? My jaw dropped! Holy Cow God, you did it again! I didn’t even have to bring it up, she
did. And never have we even heard that they
do this type of arrangement before! I
guess this is something they do have to do at times for patients who just have
stubborn esophagus’s that just want to keep closing up : ) God is so good isn’t
it? Smile. Needless to say, now Jas is on the books to have a stretching
every two weeks until they find that his esophagus is staying open for
longer. YAY!!! Since the 6/13 stretching, he also had one on 6/28 and 7/11. And again, no complications, everything went smoothly! PRAISE THE LORD for answering our prayers so
clearly! The even better news is that when he went in for his 7/11 stretching his esophagus opening was 1 mm wider (pre-stretching) than the time before. That is fantastic news and means that the stretching therapy is working. Praying that for each additional time he goes in that his esophagus continues to stay open wider each time.
So, it has been uphill from there! Jas started back to work the week of June 11th. Can you believe it? I’m still pinching myself daily because it’s
still a dream/miracle that he is doing this well, considering his diagnosis 9
months ago. He has come such a long way,
looking back over this past year and I’m so proud of him of all of the battles that he has battled through. Again, I have no idea how people go through something like this without the comfort of knowing that God is with us always, every single step of the way. I’ll tell you what, we are looking at every
day as an absolute blessing at this point!
So the first two weeks back to work he worked two days a week to ease
back in. We were so blessed to have a
buddy of his drive him to work those first couple of weeks! What a relief to know that he at least could
rest the 2 to 2.5 hours round trip commute after having a full day of
work! So he then moved to 4 days a week and began driving himself and has been
working this schedule for a handful of weeks due to having either a holiday (the
4th of July) or his every two week stretching taking place. While he's exhausted by the end of the day, you can tell he is really enjoying being back to work and getting back into the swing of things. We are so grateful for Jas' employer and his bosses! The compassion and patience they have had with Jas over the past year has been phenomenal and made all the difference to us!
How's Taylor doing through this new transition? Well, we're working with her on the adjustment back to only seeing daddy at night again, as she had about 9 months of having daddy home all day when he wasn't in the hospital. Please pray for her not to get mad or act mean to Jas (as she is starting to do that with him bc deep down I think she's hurt by not seeing him as much), but for her to understand this is a good thing that daddy's back to work! Such a hard concept for a 3 year old to understand after the year she has been through too! Our little trooper! On a positive note here, she and I have been loving our time together getting to do all sorts of fun summer things together! Blueberry picking, swimming, concerts in the park, story times, movies, playdates.... ah it feels like old times again and little by little I see her trust rebuilding with me.
We also had Father’s Day during this time. Well, I’ve always wanted to surprise Jas with
pics of Taylor and I for a gift but never had the energy or patience with a
toddler before now. I have to be honest,
all of the prior times of picture taking even just for Taylor were not fun to
say the least. They ended up with me
soaked in sweat from doing everything I could possibly imagine to get that girl
to stand still for a second and smile, while bribing her with snacks and prying her sippy cup from her hands.
Wheewy! So I was a little nervous
about how this would go. Well, in order
to surprise Jas we had to do it on a day that he was at work. And I really didn’t know until the morning of
my birthday whether he would be going to work or not. So, he did.
So, T and I went in for pictures.
And can I just tell you, it was the most enjoyable picture session she’s
ever had! Maybe 3 years old is the
magical age for the switch. Or maybe it
was God’s amazing birthday gift to me that day.
Either way, it was an amazing gift that I’m so grateful for! Here are a couple pics that were taken. Now here’s the funny part of this story. I worked with Taylor all day about how she
needed to keep what we did a secret from daddy for 3 days until it was Father’s
Day. Seriously every 5 minutes I would
quiz her about whether or not we were going to tell daddy what we did. I prepped her to say, you will find out on
Father’s Day daddy. So what was the
first thing she said to Jas after all of that hard work prepping her when he
got home from work? Daddy, did you see
your pictures we took for you yet?
HAHAHA. Needless to say we
celebrated Father’s Day on my birthday : )
How's Taylor doing through this new transition? Well, we're working with her on the adjustment back to only seeing daddy at night again, as she had about 9 months of having daddy home all day when he wasn't in the hospital. Please pray for her not to get mad or act mean to Jas (as she is starting to do that with him bc deep down I think she's hurt by not seeing him as much), but for her to understand this is a good thing that daddy's back to work! Such a hard concept for a 3 year old to understand after the year she has been through too! Our little trooper! On a positive note here, she and I have been loving our time together getting to do all sorts of fun summer things together! Blueberry picking, swimming, concerts in the park, story times, movies, playdates.... ah it feels like old times again and little by little I see her trust rebuilding with me. |
| This girl loves her rain boots! |
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| She sure does love the playground |
Here’s another funny story for you all that took place this
past month! After Jas reached a point to
where his endurance was strong enough, we decided to go on a camping trip in VA
that we had put on the calendar months prior if he was doing well. Jas loves to camp and has many great memories from camping every
weekend with his family while growing up. Well at this point, Jas still had his feeding
tube in. It was driving him crazy! Every time he ate/drank, he could tell when the food/drink was at the digestive part of his small intestine where the feeding tube was
as it was quite painful. And the outer
area where the tube exited his body was starting to get infected and really
bothering his skin. It all around was
not good! So, since he was on a “schedule”
in terms of stretching and knew that we would have no electricity camping, he
thought this would be a good time to quit the feeding tube cold turkey. Initially Jas told me that he was going
to yank out the feeding tube himself, and I about have a heart attack. That’s the last thing we need was another hospital
stay for another complication right? So,
after conversing back with his surgeon team many different times, telling them
that he was going to try to yank it out himself if they didn’t get him in
before we left for camping, I about fell out of my seat when they told me that
I could pull it out for him. Well, chuckle
chuckle, that’s not quite how it played out.
I relayed the good news to him that he would not have to take another
day off of work to go to Baltimore and that we could take care of his feeding
tube on our own. The nurse had walked me
through exactly what I needed to do, but as I stood there in the bedroom, I
started to turn green thinking of what she warned me about possibly
seeing. (I have a weak, weak
stomach) Of course Jas knows what a wuss
I am so he starts laughing at me and asking me what the big deal is. As I explained to him what the nurse had
shared with me, I guess I glanced away for a second while I was dramatically talking with my hands and looked
back at him and low and behold he was laughing as he held up his feeding tube
that he had yanked out while I wasn't looking. This is just so us, it makes me laugh. So, the stinker did it himself. No problems at all THANK YOU LORD!!!! And off we went to camping the next day with
no ball and chain. What sweet freedom
Jas experienced that he hadn’t had in almost 6 months!
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| What a gorgeous view we had from our campsite! |
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| Fishing together |
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| Jas enjoying fly fishing on the river |
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| Maryssa and Taylor - loving their pizza while camping! |
Again, each day is an absolute blessing! We can’t thank you enough for your continued
love, prayer,encouragement and generosity! God is so so good! We are blown away by the fact that our blog has had over 22,000 views to date! Can you believe that? What an incredible group of supporters/encouragers God has blessed us with! We feel bathed in love and continue to pray that God uses us and our story to touch others lives to bring them closer to Him and to help others who are battling cancer as well. Also, we
continue to hear of other survivors that specifically had esophageal cancer and are doing well today. Thank you for sharing with us! It brings tears to my eyes each time I hear of a survivor of esophageal cancer, as I know God continues to provide us with hope in
this way!
We'll keep you posted as the summer progresses, but if you could please continue to pray for Jason's esophagus to stay open and for ultimate healing of his body we sure would appreciate it! THANKS!
With Much Love in Him,
With Much Love in Him,
Meg
