letter

HI  Everyone,

HAPPY  MOTHER"S DAY  TO  YOU,  HAVE   A GREAT   DAY

From,

Elaine

Hi Friends,

It looks like someone posted that last message accidentally on the blog - not sure how that happened!  Possibly by replying-all to an email update I sent out?  Please disregard that message (and if you get our blog updates via email - please don't reply to them) and I'm sorry your inboxes are getting clogged up!

Thanks,
Elise

Letter

HI Everyone,
Winter  Craft  Market  - Dec 5&6,2015   Saturday 10;00am-5;00pm   & Sunday 10;00am-4;00pm  . IT was in today newspaper .

Just to let you know . Save it.  MT Nittany  Middle School,656 Brandywine  Drive,State College

from,

Elaine

Admission $3;00 or $2;00 with  AD

Good news!

I tried sending this update out yesterday but it didn't go through for some reason so here it is:

I am very relieved to tell you that the only problem with our car was a dead battery, which has now been replaced! And Paul woke up without the rash so his pediatrician (over the phone) said to just keep watching him for any other symptoms. I am hoping that the rash was just another bug bite that happened to be in the same spot.

After two days of the diuretics being ineffective and Grey putting on water weight each day, the dose he received yesterday actually took some of the excess fluid off! Now we are just waiting to see how it affected the kidneys and if it is the right dose go keep him stable at home. Hopefully we can leave today or tomorrow!

Thanks for continuing to pray!

Elise

We are actually home right now!  Totally exhausted and a bit overwhelmed, but home!  Please pray for us this week as we monitor Greg's symptoms carefully and start catching up on everything we missed over the last couple weeks.  Greg still feels wiped out and has extra fluids on board that are making him uncomfortable.  Paul's cold that he's had for a week now is lingering (and sounding worse), and I am so tired.  Pray for energy to tackle the week!

Thank you so much,

Elise

When it rains...

Well, we are still here.  The heart catherization results threw the doctors for a loop.  They thought it would show that they had taken too much fluid off of Greg (which would explain why his kidneys were still not working well) but they discovered that Greg still had high heart pressures and probably an extra 10lbs of fluid still on board.  They took him off of diuretics for 24 hours and his kidney numbers improved so now they are fairly confident that the diuretics were hurting his kidneys.  But during that time, he put on an extra 2.5lbs of fluid.

To spare his kidneys, they are going to leave the extra fluid on for now.  They feel that the heart is working fairly well, Greg feels much better, and the kidney function is acceptable.  If they were to take more fluid off (which would make Greg feel better and the heart work even better), the kidneys would suffer too much.  So now they need to figure out the right diuretic dose that will keep Greg from putting on more fluid and not negatively affect his kidneys.  It is possible that Greg could be discharged tomorrow but we aren't sure.

Tonight during Paul's bath, Greg's mom and I noticed that Paul has a rash behind his ear where the tick was removed.  I called our pediatrician and she wants me to take Paul back to the Urgent Care clinic tomorrow morning for them to look at the rash and see if they think it is a Lyme's rash and if so, to get him started on antibiotics.

Then later tonight, I went out to pick up some groceries and when I got back to the car, it wouldn't start.  AAA came and jumped it for me so I was able to drive back to our friends' house, but now it won't start again.  So in the morning I have to get the battery replaced.

We've now been here for 14 days and I am totally depleted - and having Paul develop a rash and our car not work just feels like too much right now.  Thankfully I have good friends and family here who are being so supportive and helping me through this.  But if you could please pray for renewed energy to face all these challenges, I would really appreciate it.  And please pray for the doctors as they decide what would be best for Greg.

Thank you,

Elise

Going Home Soon!

Hi Friends,

It is amazing how much better Greg is doing in just 2 weeks.  I feel a little shocked by his turn-around and how much better he feels.  This situation has truly become a best-case scenario when compared to all of the really scary possibilities we were facing.

At this point, Greg has lost nearly 30lbs of fluid which the doctors believe just slowly accumulated over time.  As you can imagine, he feel so much better physically (even though he is still a little weak from being so sick and spending so much time in bed at the hospital)! 

They've determined that Greg has chronic diastolic heart failure.  His heart muscle doesn't relax as much as it should, which means that it can't properly pump blood through it, making Greg suscepitble to having extra fluid in his body (which then causes heart failure and in Greg's case, kidney failure).  Over the past few days, the doctors have been trying to figure out the right balance between heart function, kidney function, diuretics vs. extra water in his body, and how he feels.  Its not possible for all of these things to be 100% and they are prepared to let the kidneys not function as well (due to the effects of the diuretics he needs) in order to allow his heart to get rid of the fluid it needs to to pump properly.  Obviously, this is all in laymans terms and I barely understand it!  But I do understand that there are a bunch of factors that they are trying to balance to give Greg the best quality of life and heart/kidney function that he can have.

Hopefully, he will be having a right heart catherization tomorrow morning which will tell the doctors how much extra fluid he still has in his body and how it is effecting his heart.  Once we have that information, they can decide what doses of different medications he needs and if he's ready to go home or not.  This will also help them (and us) monitor his health in the future so that we don't get in another situation where he is suddenly in heart and kidney failure and we didn't see it coming.    

We are REALLY hoping that we can go home tomorrow!  But more than that, we just want to make sure that Greg is healthy enough and they have everything figured out (especially since we live 4 hours away from the hospital and can't just pop-in to recallibrate things!).  At the same time, I feel a little nervous about going home and monitoring things on our own, so please pray for us as we learn to watch Greg more carefully for signs that the heart failure is worsening.

Thank you for all of your support, encouragement and prayers!  We are so thankful to be sharing good news - your prayers for Greg have been answered!

Love,

Elise

Quick Update

Hi Friends,

Over the past two days, Greg's kidney function has started declining again.  The doctors think that this is probably the side effect of his transplant medications being at a much too-high level in his body (now that the extra water is coming off they are being absorbed much better and the levels of one medication is triple what it should be).  Although they made drastic changes to his medications yesterday, his kidneys continued to get worse today.

The doctors have explained that there are so many factors in Greg's treatment that can be causing the kidney issue and it might take some time to isolate the cause.  Greg's heart catherization may be moved up to tomorrow afternoon if his kidneys don't improve overnight, in order for the doctors to have more information to work with.

Please pray that the doctors can figure this out quickly and that Greg's kidney function improves.  We are so eager to get home and really hope that this doesn't add more days onto his hospital stay.

A surprise source of "adventure" today was finding a tick on Paul while he was visiting Greg!  Greg's nurse Nour, who is awesome, was so sweet and gathered a bunch of other nurses to help us figure out what to do.  We ended up taking Paul to an urgent care clinic to have the tick removed and he handled it like a champ.  Now we just need to watch for any signs of Lymes Disease over the next month since this area has really high rates of Lymes.  

Thank you for your continued prayers!

Answers!

We are finally getting some answers!

In the past two days he has lost over 16lbs of fluid, and in all he has lost over 20lbs of fluid!  With this excess fluid out of his body, his kidney function continues to improve daily, and all of the symptoms of heart failure that he was initially hospitalized for are lessening considerably.  There is still too much excess fluid in his body and much of the focus right now is continuing to get the fluid off.

We had a very helpful conversation with a couple of doctors today and while we don't have all of the answers, we have much more information than we did earlier.

At this point, the doctors are strongly leaning away from a diagnosis of rejection, even though we are still waiting on the 2nd and 3rd AMR test results to come back.  It is still possible that either test will be positive, or that the plasmapheresis will find an antibody that they cannot test for, but the doctors do not feel like this is likely.

The most likely cause of all of this is Cardiorenal Syndrome, which essentially means that dysfuntion in his heart is what caused his kidneys to fail.  Due to a lot of factors that the doctor explained about Greg's transplanted heart, and the condition that caused his old heart to fail, Greg's heart has trouble maintaining a proper fluid balance in his body.  What likely happened was that over time, fluid accumulated around his heart, effecting its ability to pump blood to other organs, including the kidney and for whatever reason, last week it got to the tipping point and he went into heart and kidney failure.

Before Greg leaves the hospital, the doctors' goal is to remove all the excess fluid so that they can get baseline information to use to keep this fluid accumulation problem in check in the future, preventing a scenario like this one from happening again.  They anticipate that we will be here at least until Monday as they work on getting the fluid off, weaning Greg off IV diuretics and other IV medications, finishing plasmapheresis, and doing another right heart catherization to measure his heart function when he is "dry".  

We are praying that all of these procedures and tests go as smoothly as the doctor outlined them today, and that Greg will be able to go home next week!  We are hopeful that the information they have learned through this awful ordeal will lead to much better data-driven care of his heart in the future.

Please continue praying for us - we are all tired and very much want to be home!  And please pray for Greg as he continues to feel poorly from all of the procedures and medications he is on, as well as the effects of the excess fluid that is still causing problems in his kidneys.  Please pray that the diuretics would do their job and that he would feel better and better as the week goes on.

We are so grateful for how much better Greg is doing overall and the way that his kidneys have responded so positively to the diuretics!  It is a huge relief to see him doing so much better than he was last week!  Over the past two days he's been able to walk a short distance in the halls, and play with Paul a little bit during his visits.  It is so good to see him getting out of bed and breathing easier!

Thank you for your prayers!

Kidney function improving!

Today is the first time that we've felt like things are starting to go in a positive direction!

The big news is that his kidney function is improving, even though the diuretic he's on is known to hurt kidneys. He also lost 5lb of fluid overnight which is so important in improving his heart and kidney function.

There have been some difficult moments today, but there are other times when he's been much more alert and more himself than he has been in over a week. We are very thankful for this progress even though we know there is still a long way to go to before we have answers and he can go home. 

He had his first session of plasmapheresis today and he tolerated it well.  I'm looking forward to talking with the doctors tomorrow - especially the kidney doctor.

Please pray for:

- The diuretics to keep removing excess fluid from Greg's body.

- His kidney function to continue improving.

- His oxygen saturation to improve, along with his heart function.

- Answers to why he is experiencing heart failure symptoms - is it AMR or his kidneys that are causing it?

- For my sinus infection to clear up (I was able to be seen by a doctor today and am hoping my antibiotic does the trick!).

Thank you for your continued prayers! God is answering them! 

Pray for Kidneys

Hi Friends,

I've been sending email updates to some friends and family over the past week, but for those of you who don't know, Greg was transported to INOVA Fairfax Hospital (where he had his heart transplant in 2015) by ambulance on Tuesday because he was exhibiting symptoms of rejection or heart failure.

Its been a bit of a rollercoaster since then and instead of rehashing all the details, here are where things stand right now:

The biopsy performed on Wednesday morning was negative for cellular rejection, which is a huge praise!  Cellular rejection is very scary and very dangerous.

The first test for Antibody Mediated Rejection (AMR) came back negative.  The doctors are currently waiting on approval from insurance to do two more tests, which are rarely done and quite new.  We hope to have those results next Thursday.  Greg went through some very difficult treatments for AMR in the summer of 2012 and we hope he won't have to go through them again.

In case he ends up being positive for rejection of some sort, he went through 3 days of massive IV steroids to try to minimize the damage of the rejection, if it is there. 

Amazingly, Greg's echocardiogram showed normal heart function, which is inexplicable because he is showing all the symptoms you would expect from heart failure.  His heart pressures during his catherization were very high, which makes sense because he is retaining a ton of extra fluid.  And his kidney function is poor and is only getting worse.  He has been on massive amounts of IV diuretics to try to get some of the fluid off of him, but he isn't responding well to them and they seem to be taking a toll on his kidneys, which are already not functioning well.  

Because Greg's case doesn't fit anything that the doctors are used to seeing, they are divided on what to do next.  They've decided that it is best to move ahead with doing plasmapheresis on Greg in hopes that they can remove an antibody from his blood that is causing AMR even though it doesn't show up on any test that they've done so far.  He will receive 4-5 treatments, one every other day starting tomorrow, which means that we are going to be in Fairfax for a while.  They aren't sure that this will help but the possible benefits outweigh the risks so we're going ahead with it.

A big development today is that the doctors are now wondering if the cause of all of these symptoms of heart failure isn't actually a problem with the heart but a problem with the kidneys that is causing all the fluid to build up around the heart.  His kidneys are functioning very poorly and originally they thought this was caused by the heart.  They brought a kidney specialist on to Greg's case to help them figure out what is happening with his kidneys and how it is effecting his heart/ what we need to do.  There is talk of possible dialysis if the plasmapheresis and diuretics don't help the kidneys regain their ability to function well.

So we still don't have many answers, but we are feeling better knowing that the kidney doctor is part of Greg's medical team now.

Some prayer requests:

Greg's first plasmapheresis treatment is tomorrow morning.  Pray that he tolerates it well and that it cleans out any antibodies that shouldn't be in his blood!

He had a very large catheter inserted into his chest today for the plasmapheresis and it is causing him a great deal of pain and discomfort.  He's going to have it in for over a week so please pray for the pain to stop.

Greg is still having difficulty breathing and a lot of pain from all the excess fluid in his body.  Please pray for relief from these symptoms!

That the doctors would be able to figure out what is causing the heart-failure symptoms and that there would be solutions to the problems.

I have a severe cold, am having a hard time sleeping, and feel physically lousy on top of the stress of this situation.  Please pray for physical healling, rest, and a peace from the Lord that is not dependent on our circumstances.

Paul continues to be the sweetest, most flexible kid in the world.  Pray that we would be able to give him consistency, fun, and good moments with his daddy in the midst of all of this.  Please also pray that he would sleep past 4:45 am!  That would really help my lack of sleep!

Thank you for your prayers!

Love,

Elise

Paul Naaman Boros

Hi Friends!

It's been nearly a year since we posted anything on the blog and we wanted to give you a little update in case anyone is wondering how Greg has been since we moved to State College.

Greg's health has been really good this year!  We've driven back to Fairfax a few times throughout the year for his biopsies and annual testing and his heart it doing really well.  He hasn't had any rejection and as of his last biopsy in March, he only needs to have biopsies every 6 months since he's been doing so well.  God has been so good to us!

But the best thing that happened this year is the birth of our baby boy, Paul Naaman.  He was born April 5th and is growing and changing so much every day.  We absolutely adore him and he is one of the best gifts that the Lord has ever given us.

Because of Greg's heart transplant and the possibility that Paul could inherit ARVD from Greg, we already have taken him to see a pediatric cardiologist.  His heart is absolutely perfect but they will be tracking him every 6 months to watch for any changes that might be of concern (ARVD typically doesn't present itself until someone is in their teens, 20s, or even later).  We are not dwelling on the possibility of Paul inheriting ARVD but are trying to trust God with whatever he has planned for Paul's future.  And right now, we are just soaking up our little boy's precious smiles and snuggles!

We thought you might enjoy seeing a couple pictures of Paul!

Biopsy results and big changes ahead!

Hey everyone!

Last week, Greg had a biopsy to check his heart for rejection.  The doctors were really happy with his health in general and they didn't find any cellular rejection which is such a blessing!  They did however determine that the antibody mediated rejection (AMR) has returned.  You may remember that Greg went through many different types of treatment for AMR last summer, none of which were effective.  Over this past winter, the AMR mysteriously disappeared on its own (definitely an answer to prayer) but now it has returned.

The doctors have decided not to try to treat the AMR since they don't know of any effective treatments.  Unlike cellular rejection, AMR isn't immediately dangerous to Greg's heart but it does have long-term implications on his heart's health.  We would appreciate your prayers that the AMR would go away again without treatment.  Both of us feel at peace about the AMR returning.  God took it away in the past and we know that he is able to do so again if he so chooses, and we are just trusting the long-term health of Greg's heart to the Lord because we can't do anything to prevent the AMR from doing damage.  We are just really relieved that Greg won't have to go through the treatments that he had last summer - they were so awful and painful and we are glad to avoid the hospital as much as we can!

At the end of this month, we are moving to State College, PA where Greg will lead the Penn State Cru ministry!  We are really excited to be returning to Penn State, although it is sad for us to leave Mason too.  We've written a lot about this in prayer letters to our ministry partner team, so I'm not going to go into a lot of details about our new ministry, but I did want to let you know how this impacts Greg's health care.

The great news is that it doesn't!  Greg's heart transplant doctors were thrilled that Greg was being offered this opportunity and were 100% in support of us moving to State College - which we did not expect at all!  They said that Greg's health is very stable and they are comfortable with him being further from post-transplant capable care.  We had the choice of keeping INOVA for Greg's post-transplant care or transferring his case to Pittsburgh, and we decided to stay with INOVA.  Even though it will mean driving down to Fairfax every 3-6 months for biopsies and other tests, we are much more comfortable staying with the doctors who know us and who saved Greg's life!  In the future, we may transfer his case to Pittsburgh, but right now we are not ready to leave the INOVA transplant team and we feel much safer keeping Greg's care consistent. 

This move is really forcing us to trust that God is the one who protects Greg and keeps him alive.  It wasn't until we began considering leaving Fairfax that I realized how scared I was to live further from INOVA.  My sense of Greg being safe and secure was centered around our proximity to the hospital - and it hit me that I was trusting in INOVA, not God, to keep Greg safe.  But God reminded me that all 3 times that Greg had cardiac arrests that could have easily killed him happened in State College.  God has saved Greg's life multiple times when we were far from  a state-of-the-art cardiac hospital, and since "Jesus Christ is the same yesterday, today, and forever" (Hebrews 13:8) He can do so again.  This is something that I have to continually remind myself as we get closer and closer to our move date, and I would appreciate your prayers for both of us, especially me, that we would place our confidence in the Lord, not in our proximity to INOVA.

We are so grateful for all of you.  Thank you for continuing to pray for Greg's health even though the updates are fewer and farther in between these days.  God has used you in powerful ways in our lives!

Love,
Elise

Great news!

Hi everyone!

You have not heard from me lately because Greg has been doing so well!  This fall and winter have been such a welcome relief from medical issues and we've really enjoyed life being really "normal" and uneventful.

A few weeks ago, Greg started having some symptoms that concerned us.  He was becoming short of breath very easily and we noticed some swelling in his ankles which indicates that he is retaining fluid.  He went to the hospital for an EKG and echocardiogram and both came back normal.  

Last week he had his annual testing on his heart (this should have happened in November but was delayed due to changes at the hospital).  We were concerned that they would find rejection because of the symptoms that he was having.  Although they did find that Greg had a lot of excess fluid in his heart, his rejection level was a one, which means they don't have to treat him for rejection!  His heart actually seems to be in great shape and they don't think that the fluid retention is being caused by any problem with his heart.  They have increased his diuretics and hope to manage his symptoms that way.  One guess they have is that his decreased kidney function is contributing to this (you may remember that his kidneys went into failure after the transplant and sustained some damage from that episode).  It is a huge relief to know his heart is doing well but it is still concerning to not have an answer to why he is retaining fluid.  

We had more great news yesterday afternoon.  The type of rejection that Greg developed this summer (Antibody Mediated Rejection) is now completely gone!  This is incredible and can only be attributed to God healing him because none of the treatments he went through this summer (including chemo) worked at reducing the AMR.  The last time Greg was tested, there was a decrease, but now it is completely gone!  We are praising God for this!  Being healed of the AMR will make a huge difference in the longevity of his new heart!

We are so thankful for all of you who continue praying for Greg even when you haven't heard an update from us in a while.  We would appreciate your prayers that the doctors would be able to determine why he is retaining fluid and that it would be an easy issue to treat.  We are so glad to not have more serious issues to ask you to pray for!

Love,

Elise

Good biopsy results!

Hi everyone,

It has been a really long time since I wrote an update because Greg has been doing really well!  He had a biopsy on Monday to check his heart for rejection and they found a cellular rejection level of one (so they don't have to treat it).  The best part is that his antibody mediated rejection, which they were trying to treat this summer, has decreased!  It is still present, but to less of an extent than it was present this summer.  We are praising God for this - he must be at work here because the medical treatments didn't work and now that they aren't treating the rejection, it is actually decreasing!

Next month will be Greg's 2 year anniversary of his transplant, which is crazy to think about.  They will be doing a lot of testing just to see how his heart is doing overall in the next few months so we'll let you know as we get results from those tests.

Thanks so much for praying for Greg!
Elise

Update - doing pretty well!

Hey everyone,

Many people have been asking me for an update - so here we go!

Greg is actually doing really well.  Despite some unpleasant side effects from his new medications, he's doing much better than he had all summer!  That is a huge praise because he's doing better just in time for us to be back on campus with our students for the start of the fall semester!

We recently heard from his nurse coordinator that they had been in contact with some of those world-wide specialists.  The specialists thought that everything the transplant team had done up to this point to try to stop the antibody mediation rejection was good.  Based on the limited amount of research they have to go on and the dangers associated with further treatments, they recommended not doing any more treatments at this point.  Greg is on the medication is supposed to protect his heart from the effects of AMR, so they want to keep him on that since he's tolerating it fairly well.

On September 4th, they will do an echocardiogram of his heart to see how it is functioning.  After that, it probably won't be until October that any major treatments occur (or even biopsies) unless the echo shows a problem. 

We are very grateful for this break from treatments.  In God's wisdom, it has come at the perfect time in the year when we are most busy with our ministry.  There are a lot of neat ministry opportunities in the next two months for Greg and we are praying that his health won't prevent them from happening!

Thank you for praying with us!
Elsie

AMR Update

Hi Everyone,

We've been anxiously awaiting news from the hospital - and finally got some information today.  On Friday, some of the results came back from Monday's blood test for antibody mediated rejection (AMR) which showed that there was still no change.  The clinic was still waiting on the full results and also needed to gather together as a team to discuss Greg's case.  For the weekend, Greg's nurse coordinator increased one of his anti-rejection medication just to hopefully prevent the AMR from getting worse.

Finally this afternoon Greg spoke with his coordinator.  I'm trying to understand this information which Greg shared with me after he got off the phone,so if it's confusing I apologize in advance!

At this point the transplant team has not come up with a plan for treating Greg's AMR.  Since the condition he has is extremely rare, all other instances of patients being treated successfully are anecdotal - they can't ensure that the same treatment would have the same result for Greg.  Apparently there are some world expert doctors that see more of these cases (an average of 10 per doctor total) and the clinic is going to contact them to learn about the treatments they've used and if they have been successful.

Thankfully, despite all of the rejection, Greg's heart is still doing really well.  This gives the doctors time to formulate a plan instead of rushing into a treatment that they are unsure of.

The danger with the AMR is that it causes coronary artery disease (which can lead to heart attacks and other problems).  Coronary artery disease is very common in heart transplant patients, though doctors aren't sure why.  To protect Greg's new heart, they need to find a way to prevent or stop any coronary artery disease that the AMR is causing in Greg.  Thankfully, there is no sign of Greg's coronary arteries being diseased at this point, though they may be inflamed right now due to the AMR. 

For the next two weeks (at least) while the doctors come up with a solid plan, Greg will be on a new medication that halts damage to the coronary arteries.  We keep hearing that this is a "miracle drug" and we need a miracle!  There is a possibility that he'll be on it long term, depending on his treatment plan and how he tolerates it (10% of patients develop respiratory failure so we'll be watching him closely to make sure his breathing doesn't become labored).  Once he's on it, he can decrease the anti-rejection medication that was just increased - which is good because it is really harsh on his stomach.

We are VERY thankful that Greg did not have to be admitted to the hospital this week.  It'll probably be a few weeks until we know the next step of the plan, but for now we are praying that this new medication will protect him from coronary artery disease and that it won't have any negative side effects on his breathing.

Its hard to believe that the summer is nearly over and students will be back in a little over a week to help Mason Cru welcome freshmen to the university!  This was not the summer we expected to have in any way, but the Lord has taught us both a lot through it.  We're learning more about moving forward in the midst of hard circumstances.  Although it seemed like Greg's transplant was becoming a distant memory this spring, we are now aware that it really isn't something we're going to be able to "put behind us".  So we're trying to keep going and pursuing goals and dreams even when they seem impossible and life keeps getting in the way.  We trust that somehow this is all part of God's plan for us - that this isn't chaos - and that Jesus will be with us every step of the way.

Thanks for praying for us - we need and appreciate you,
Elise

More good news!

Greg's cellular rejection is gone!  We received the results late this afternoon and are so glad that his heart is safer!  They are still waiting to get the results of yesterdays blood test for AMR to determine the next steps for treating it.  But for today we're just thankful that the cellular rejection is gone!
Elise

More AMR

Hi Everyone,

Greg had his biopsy this morning.  We won't know the results until tomorrow, but the good news is that his heart is functioning really well.  We're hopeful that this means the cellular rejection is over, but we'll have to wait and see (last time his heart function looked good but he did have cellular rejection).

We did get the results of Tuesdays blood work - Greg still has AMR and the level of the rejection is unchanged since 7/11.  He will definitely need to be treated for it, but they have to wait to see about the cellular rejection before moving ahead.  There are a variety of options they can choose from for treating him for the AMR so we don't know what to expect at this point.  Hopefully we'll know more tomorrow. 

We've been anticipating that the AMR would still be there so it's not really a big disappointment or surprise.  But we would appreciate your prayers that the doctors would find a treatment that would work well without a lot of negative side effects.

Thanks so much,
Elise

GOOD NEWS!!

We are SO excited to tell you that we just found out that United REFUNDED THE COST OF OUR CANCELED FLIGHTS!!!!!   We only lost $130 total in fees through the refund process which is unheard of!  It is such a huge relief to have this money back that we spent so long saving for.  Hopefully some day we'll actually be able to use it to go to Hawaii, but at least now we have it back in our hands and can use it for whatever God brings into our lives.  We just called our parents to share the good news and couldn't wait to put an update on this blog.  Thank you to everyone for going to bat with us on this!  What a RELIEF!!

We had a really wonderful couple of days away on the Chesapeake Bay this week thanks to friends and family.  It was so great to get out of town and forget (we made a pact not to talk about any "real life" stuff) medical stuff, and biopsies, and medical expenses, and the refund we were waiting on (and now have!)... and to not check email or our phones..  It's amazing how much a couple days away can do for your perspective and mindset!  We both feel so much more able to face whatever is coming at us next.

Greg had a biopsy on Monday to check for his cellular rejection and they will also take more blood to send to Hopkins to check for AMR.  We still don't have any results from his blood test this past Tuesday, but they're probably waiting to tell us when they see us on Monday.  As always, I'll let you know what's going on once we have some results!

Thank you again for being a part of this awesome, awesome blessing of our refund!

Love,
Elise

GOOD NEWS!!

We are SO excited to tell you that we just found out that United REFUNDED THE COST OF OUR CANCELED FLIGHTS!!!!!   We only lost $130 total in fees through the refund process which is unheard of!  It is such a huge relief to have this money back that we spent so long saving for.  Hopefully some day we'll actually be able to use it to go to Hawaii, but at least now we have it back in our hands and can use it for whatever God brings into our lives.  We just called our parents to share the good news and couldn't wait to put an update on this blog.  Thank you to everyone for going to bat with us on this!  What a RELIEF!!

We had a really wonderful couple of days away on the Chesapeake Bay this week thanks to friends and family.  It was so great to get out of town and forget (we made a pact not to talk about any "real life" stuff) medical stuff, and biopsies, and medical expenses, and the refund we were waiting on (and now have!)... and to not check email or our phones..  It's amazing how much a couple days away can do for your perspective and mindset!  We both feel so much more able to face whatever is coming at us next.

Greg had a biopsy on Monday to check for his cellular rejection and they will also take more blood to send to Hopkins to check for AMR.  We still don't have any results from his blood test this past Tuesday, but they're probably waiting to tell us when they see us on Monday.  As always, I'll let you know what's going on once we have some results!

Thank you again for being a part of this awesome, awesome blessing of our refund!

Love,
Elise