Merry Christmas and Happy New Year!

 

If all goes as planned.....Jordie will be home for Christmas! Jord has been able to continue his treatment as an outpatient and will be finishing this regimen on Christmas Eve. Although this daily routine has been demanding on Jord's energy he has handled it like a champ! Most importantly he has been rewarded each night with the comforts of home- what a gift! 

It will also be a gift to have the entire family under the same roof for the holidays to celebrate all we do have-- including all of you. I want to thank all of you for sending your positive thoughts, strength, prayers, and good wishes over these last months. It has meant so much to me and the kids. The road has been and will be long to recovery but we remain determined! 

Our entire family wishes you all a wonderful holiday season and encourages you to enjoy and celebrate with all those closest to you. May your holidays be bright!

xo,

Deb

Dear Friends,

It's been a while since I've posted because I haven't had much to report.....which is good in some ways- no fevers while at home!- but torturous in other ways-waiting for more information....and always waiting for positive results!

To catch you up on our journey......Jordie needed to stay in the hospital until Dec 2nd. While there( 11/19- 12/2); he was treated for multiple infections; he was operated on to deal with a nasty abscess ; and he was given the first phase, a 10- day course of more chemo, of his Plan B treatment.

Since December 2 Jord has been at home. He has eaten well, has slept better and has overall tried to rest, recuperate and ready himself for the next phase of battle which started today. Jord was re-admitted at Jefferson this afternoon, and is waiting to receive his first dose of the next drug (phase 2 of this Plan B) as we speak.

The hope is he will only be at the hospital for the weekend, so that the team can monitor his response to this new drug. If he manages the drug well and stays infection-free, future doses/treatments may be able to be administered on an outpatient basis... but we are taking things one-step at a time... Whatever is needed to best care for Jord on his way to recovery.

I am soooo thankful for all that ALL of you have been doing for Jord and me.. and Emery, Thomas, Jack, and Lib. All the love, support, and positive energy has been overwhelming and incredibly touching.

Much love,

Deb

After enjoying a few days at home, sleeping in his bed, sitting by the fire, and getting lots of love from his four-legged friends, Dad is back at Jefferson Hospital. Unfortunately due to an infection, he needed to be back in the hospital where the very capable team of doctors and nurses could care for him. While we were so happy to have him home, we were all very aware that there was a good chance that this could happen and we were happy to make it 6 days at home with no emergency issues. So though it is not ideal (at all), we know this is where Dad has to be for now, and are comforted to know that he is getting the full-time attention that he needs. 

Now we are looking forwards.....on to "Plan B". Dad's next chemo treatment, which he will be starting in just a few minutes, will be a 10-day cycle of a different type of drug; one that is going to attack the leukemia in ways that the other drugs didn't. Depending on how the next week goes, there is also the possibility that Dad could finish this round as an outpatient which would be a very welcome development :) 

Despite the many curveballs being thrown his way, Dad (and all of us) remain unwavering in our spirit, positivity, and belief that he is going to beat this thing. Unfortunately he has been asked to take the long and winding road towards a cure but there is no doubt that Dad is up for the fight. The love and support from friends and family continues to brighten his days, and gives him the strength to push ahead. Please keep the prayers, love, and positive vibes coming!!

xo

Emery

It's a bittersweet day as we pack up room 3114 and get ready to head home this afternoon. After finding out that this second round of chemo wasn't successful, we are now in the process of figuring out our Plan B. In the meantime, Dad is going to head home for a few days (at least) of TLC in the comfort of our home. Yay. While obviously, this is not the position we hoped to be in at "check-out", the idea of being back in his own bed is increasingly exciting for the Big Guy and we are all excited to have him home. That being said, it is a little bit overwhelming to be leaving this safe space that has been Dad's home over the last 2 months. They have taken such good care of him here! Unfortunately with the "bad cells" still beating out the good, Dad remains vulnerable to infection and continues to rely on a comprehensive regimen of drugs around the clock. Luckily, there is a 5'4", superfit and incredibly strong little lady ready to take on her newest role as super-nurse. With help, of course. Luckily - we've spent a lot of time observing over the last number of weeks and we are confident that we can keep our guy healthy and safe at home!

Over the next week we will continue to strategize and plan for the next stage, while we wait for tests to come back which may provide further direction on treatment. We remain confident that we are in the best hands, and more importantly, that all parties want what is best for Dad. We are all committed to getting Dad the BEST care, no matter where that is. It is an impressive brain trust with this group, and we know that they are going to come up with the best plan of attack. Our eyes are still on the prize, and while this latest news has been quite a blow, we have accepted that our route to the end goal of a cure will just have to be a little bit longer. 

One quick PSA as we move into this next stage... While we know everyone is very excited that dad will be back at home (we are too!), all is not back to normal and we will have to continue to be VERY careful in terms of visitors, germs, etc. Even though we will not be in the hospital, we will be doing our best to create a similarly safe / protected space for Dad at home. 

We all, especially my Dad, are very appreciative of all of the support and all of your friendship. It is going to get him through this!! Please keep the notes, prayers, and positive vibes coming - we love it.

Onwards and upwards,

Emery

We're breaking out!!! Well... Not really, but with the doctors permission Jord got to go outside and enjoy a few moments of fresh air and sunshine this week. The unseasonably warm temps in Philadelphia this week (almost 80 degrees!) gave us the perfect opening to "sneak" our guy outside of the hospital walls for the first time in almost two months. As you can see in the pic below... He was a happy man! 

Aside from this exciting action, we have very little news to report. The waiting game continues and probably will for another few weeks. Though he remains quite uncomfortable, Jord's spirits are good and he continues to fight like the champ that he is. The continued outpouring of support is much appreciated. With a big couple of weeks ahead of us, your prayers and positive vibes are more important than ever! Keep it coming - Jord loves hearing from you!

Lots of love from Room #3114

Monday October 26th

It's hard to believe that it has now been 45 days since we checked into Jefferson on Sept 12th! That's a lot of days but Jord's room is filled with love, laughs, and lots of good vibes daily!

It was with a positive attitude and fighting spirit that Jord started chemo (again) at the end of last week, and he is already more than halfway through this second course which is a total of six days- 12 doses of treatment administered every 12 hours. Not surprisingly, the treatment is hitting his system hard. While we know this is by design, as the chemo is killing the cancer, the toxic nature of the treatment means the rest of his body and cells get beaten up too.....especially with back-to-back treatments! Jord is being tough, and all parties (medical and non-medical) continue to marvel at how strong he is... but there is no question, this is just no fun! 

Thanks for all the continued prayers and positive vibes being sent our way. Jord really gets strength knowing family and friends from all across the world, and from many different parts of his life are cheering him on. Much appreciated!!!

Lastly, we wanted thank Christopher Shuman who organized a group of eager and generous supporters to participate in the Light the Night walk, benefitting the Leukemia and Lymphoma Society. Christopher did this in Jord's honor and Christopher's "fishing for the cure" team had amazing success. Thanks to Christopher and to all of you who participated with your feet or your spirit!

Tuesday October 20th

Latest not the greatest....

It has become clear from blood tests,etc that Jord hasn't go into full remission after his first phase of treatment( induction). This happens to about 25% of AML patients - we just didn't think it would be us. Most importantly, this isn't a prognosis changer but certainly a hurdle that we didn't foresee.
Re-induction is another 4-6 weeks in the hospital....An fyi, in Europe it is standard protocol to give two rounds of induction to all AML patients.
Jord is obviously bummed, but he continues to show great resolve!
Please feel free to ask me questions but not Jord....it is hard enough for him to have to answer them ....let alone answer them many times over. His energy is better spent staying positive.
Keep sending the good vibes and positive messages. He needs them!
Thanks and lots of love to you all.
Deb

Here Comes The Weekend

In the old days when I was traveling a lot and was communicating with people across the country, I would often write a weekly piece which combined content and humor.  As I sit here thinking about what to write, I thought I might recreate. One problem I face is that being locked in a 10/12 room for 6 weeks can kind of drain the creative resources and my content is kind of lacking as not much has changed.  That said, here goes...

As you have likely read, a lot of my focus over the last few weeks has been on my "back side".  Not a pretty subject but a topic where I feel very comfortable.  Chemo kinda blasted me in a cruel way leaving me to spend a lot of time pondering my next poop or making sure there are enough Tucks- pretty typical stuff.  What you don't realize without going through it is the amt of focus which is placed on this sensitive area by hospitals and their staffs.  For instance- yesterday was butt (sore) inspection day at Jeff.  Yup-serious.  Fortunately for me I have had an overly egregious nurse who has taken it upon herself to do daily inspections-- Deb getting a little concerned.  Well how surprised was I to find that said nurse is in charge of inspection day- head dog- however since I am in her unit she is not eligible to do my inspection- phew.  She did however offer to put my cream on this difficult area-- Deb drew the line...  And then there is the poor cleaning lady- she doesn't speak much English but her displeasure with my room and especially bathroom is clear- daily.  You should have seen her face when my lunch- an old fashioned Sloppy Joe arrived....

So content-- we continue to be in a bit of a waiting game.  Platelets and hemoglobin are great and my white blood cells and neutrophils are taking their sweet time.  I am here until they recover.Could be within the week, could be longer.  Every day we wake-up looking for a big number- hopefully tomorrow is the day. I feel good aside from my "issue" and people seem to think I look ok too.  Go figure.

So we wait.

Again- many thanks to all who have provided such great support of me and the team!  Special shout out to my brother Thomas who sent me his Emmy and to Christopher who has chosen to lead his school's team in an effort to cure leukemia and lymphoma.  Great  job Christopher 

Thx. Jordie

Monday October 12th

I hope everyone enjoyed the beautiful weather this weekend! Although Jord wasn't

able to get outside and enjoy the cooler temperatures or the warm sunshine, he's a weather watcher and was imagining good things for all of you. We are hoping the chance to get him outside and home will come in the next week or two.

As Emery eloquently wrote in the last post, we are waiting for the regrowth of the "good" cells,neutrophils. When enough of the neutrophils are back and working, Jord will get to come home for some tlc and rest! We have an early indication this process has started but it is normal that it is slow to gain momentum.

In the meantime Jord continues to feel the effects of his chemo treatment which is no fun at all....he has been amazing in his determination to stay positive and focused through this phase. Patience on all of our parts is important and it's great that he is strong .....and stubborn. Both good attributes for this challenge:)....(but after 29 years of marriage, one of those attributes is hard for me to admit is good!)

Thanks to you all for your continued well-wishes and support. They are uplifting for Jord and the entire family. Thanks too for all your interest in visiting. We appreciate everyone's willingness to cheer-on Jordie in person, however,  our concern about germs ( and the cold and flu season starting) is a reality/ priority so please understand our (my) caution when limiting visits.

xoxo,

Deb

Thursday, October 8th

Boring is good... That's what the doctors keep telling us. As we continue with this first phase of Dad’s treatment, no news is good news, and I'm happy to report that we have no significant news and everything remains on track. True to form though, it seems that Dad (and his body) don’t actually know how to be totally boring; no matter how hard he tries! This week has seen a mix of infections (par for the course when you have no functioning immune system) and lingering pain from chemo related GI issues – no fun for the big guy. The great team of doctors here at Jefferson continue to address any issue that arises, covering all bases with an impressive cocktail of antibiotics, blood transfusions and pain killers. Though definitely not his cocktail of choice, we are reminded that this regimen and the ability for the team to monitor, react, and treat these things quickly is why we are here at the hospital and not at home. So while it has definitely been frustrating at times, Dad continues to roll with the punches and is pushing through in his signature style; with positivity, humor, some stubbornness, and a much shorter hair cut. 

For now, we continue to focus our efforts on keeping Dad infection free, and as comfortable as possible while we wait for the healthy white blood cells (also known as “neutrophils”) to return. While we’ve been told (repeatedly) not to fixate on one date since the timing is truly just different for each person, obviously each of us are confident that we have the answer. General (medical) opinion says it will likely be towards the end of next week... Naturally we quickly identified this guessing game as an opportunity for some friendly competition and we’ve now started to place wages on what day we will start to see the neutrophils come back... But its probably going to be on Monday the 12th ;)

Lots of love to all. GO BIRDS

xo,

Emery

Sunday Oct 4th

Hi All,

Just a quick update because less news is truly good news at this stage.

Jord is in this stage of precarious limbo where the chemo is still keeping his immune system suppressed and before the good white blood cells have a chance to grow back(which the doctors predict will be in a approx a week ). Thus he is very vulnerable to infection..... I am more than happy to report he has stayed infection-free for 5 straight days. That is good! 

But "That" said .....he had a tough weekend and the side effects of chemo, not surprisingly, have made him feel terrible.

Jord knows the side effects are part of the treatment program and a only blip on the screen toward his recovery. He continues to be a fighter and like any champ he's expecting a few punches along the way. He's a heavyweight contender in this fight and the strength you are providing him is so powerful !

Thanks for the continued support of Jord and of the kids. Your well wishes mean so much and really make a difference. 

Lots of love to you all. 

Xoxo, Deb

Thanks too to the friendly dog walkers who are making sure Lucy and Ellie, our 4-legged friends, are cared for while we are here at the hospital.

Pushing Into the Fall

Thursday, October 1st

So all of a sudden its October - and feeling very much like fall in the Northeast. One thing is for sure and that is that this is NOT the way my Dad intended to spend his fall of freedom. WTF?! But, as we have reminded him, it could have been worse... Like what if we got this diagnosis in August and he had to miss the last few weeks of summer in Cape May?? Sundays on the Schooner are feeling a bit like a distant memory now but with the crazy last 3 weeks that we've had, I think its fair to say that we are ready to leave September in the rearview mirror as we go full steam ahead into the fall.  

Though we are not ignorant to the many hurdles yet to clear on this journey towards being "cured", the doctors continue to be pleased with the progress Dad is making.. The chemo is doing its job, attacking / killing all of the bad leukemia cells and we are happy to report that his white blood cell count is now down to ZERO. A very positive metric in terms of eliminating the cancer cells, however not so ideal for a number of other reasons, most important of which is his body's ability to fight infection. So, despite being finished with the chemo (for now), the daily regimen still consists of a lot of meds (antibiotics), fluids, and usually a blood / platelet transfusion or two. Most bothersome though for Dad is the unfortunate effect that the chemo has had on his digestive system. I don't think I need to go into much detail here, but needless to say, he is QUITE uncomfortable. Despite what can sometimes feel like a daily grind, Dad is pushing forward like a champ (obviously) and we continue to focus on clearing each hurdle as they come. And clear we will! For the next 10 days or so the most important thing is keeping Dad infection free. The chemo will keep doing its job, and his WBC count will stay down at zero until the good cells slowly start growing back. Until then we wait! 

Luckily, we aren't short on entertainment here, and with Hurricane Joaquin stirring up trouble in the Caribbean, Meteorologist Maine is coming out in full effect. We've been watching the Weather Channel for the last 2 hours... A perfect weekend distraction. Joaquin, coupled with the "desktop bag toss" that he was just gifted by some great friends down in Baltimore, and things are looking up. With a decent excuse for his uncharacteristically less than stellar CornHole record this summer - now he will really be ready for next season. Summer of 2016. Get ready. For now, bring on the fall; football, pumpkins, cozy fires, comfy sweaters, and most importantly more checking of boxes on Dad's road to recovery. One step at a time!

As always, we continue to be so appreciative of the outpouring of love and support coming from friends and family near and far. Hope everyone stays dry and safe this weekend!

Lots of love,

Emery

Monday September 28th

There was lots of positive energy surrounding the Pope's visit to Philadelphia this weekend. Although Pope Francis didn't have a chance to stop-in to visit Jordie, we were feeling his good vibes. How could one not be inspired by Francis? Having planned to miss all the Pope-a-looza hoopla, I am glad we were here to experience it....minus the leukemia part, of course!

Jordie continues to handle all that is being thrown at him. He finished his chemo and his WBC numbers are doing exactly what they are suppose to, he rebounds from the multiple fever spikes( this is normal in Jord's new reality) and he stays positive even though he struggles with some of the stomach upset and ensuing discomfort that chemo brings. 

The only thing Jord can control is his positive outlook and he is managing that so well. I am so proud of him even though proud isn't the right word.

Jefferson Hospital is a very caring place and we are so appreciative of the professional treatment he is receiving and the commitment to his care. No surprise that Jord is their favorite patient.... he is friends with the doctors, nurses, techs, and the many other staff members that make trips into his room to again take such good care of him.

Jord went to bed a bit more comfortably last night knowing the Eagles got their first win of the season....very therapeutic. Go Birds!

xoxo

From Jord written yesterday( Sunday)-

Hey Gang--  it's the patient here.  The Big Guy is coming to you from #3114. 

Not much to add to Deb's update on medical issues, but we are on track and are focused on clearing one hurdle at a time....This is a very long process so we can't look too far ahead.

I wanted to pass along how appreciative we are of all of the tremendous support people are providing!  Your notes, love and support are critical and heard loud and clear.  BTW-- I had no idea how many of my friends pray and have prayer lists--go figure-- i love it--keep working them hard, it is very comforting.

i don't usually answer my phone- still get wiped out and find it easier to text.  

Lastly, as you guys have commented and witnessed, i am truly blessed to have an unbelievable support network.  Deb has been amazing--and the kids have been a tremendous source of power and energy in addition to all you guys and of course mom and dad.  You find out how lucky you are in the strangest ways.

Any and all support of my team is very much appreciated!

Love you all!   Jordie

Friday September 25th-

 TGIF! After 7 days of chemo, Jord is finally on his last bag. Yay :) 

The chemo is killing the cancer cells rapidly which is what the doctors want and they've been pleased with his reaction thus far. His WBC (white blood count) is already near zero, which was the goal, and the count will continue to go down over the next week as the chemo does its job. Then we wait( approx 2 weeks from today) for the healthy cells to start to grow back....no bad cells invited!

Not surprisingly the chemo has made him feel pretty beat up and tired. Some of this is the chemo and some is the fact that his good red blood cells are being killed too thus not much energy...although...it is Jordie so more energy than the norm;/ Especially when the pretty doctors and nurses are checking-in on him! Any chemo side effects will come in approx a week....fingers-crossed he will be spared from anything too tough but we are prepared for whatever comes our way. Eyes on the prize!

He loves all your texts and emails....keep'em coming. Just an fyi- phone calls are tougher...his phone is on silent and calling back takes a lot of energy. If you still prefer to call leave a VM but don't ask for a return call.

We are so appreciative of everybody's love and support. Jord needs it and so do the kids and I. Now wish us luck as we prepare for Pope weekend in Philadelphia!!

Lots of love to all.

xoxo,

Debbie

Monday September 21st

Happy to report that Jord had a good weekend!

The people at Jefferson continue to treat Jord very well and he is responding

well. He is tolerating his chemo cocktail...not a surprise,right? Not the same as cocktails in Cape May, but Jord is making it work for him.  The regimen

is tough, but his white blood cell count indicates the chemo is killing the "bad guys". That's what we want! Only a week from diagnosis and Jord is already fighting back. He's amazing...that's my man:)

An update on visiting....Jord loves the visits, but less is more right now. I have been trying to manage the requests that come in with the limits and restrictions on his time and energy..... As well as the reality that we have to be careful about germs which Libbie so eloquently let you all know!! He knows you all are thinking of him! Don't think if you're not here that your support and love is any less appreciated!! Keep up the texts and emails, I know he finds them energizing! 

Thanks again for all the love and support. It means so much!

xo,

Deb

PS please let anyone know who might be having a hard time getting onto the blog....

Http://jordie updates.blogspot.com

Dear Family and Friends,

Thanks to all of you for your overwhelming expressions of love and support. Both Jordie and I are so appreciative.Thanks especially for keeping Emery and Thomas, Jack and Lib in your thoughts too. If they are taken care of then Jord is happy!

Jordie's diagnosis is Acute Myeloid Leukemia(AML). He has already started treatment and continues to be strong and upbeat....he wants all of us to do the same.

He will be in the hospital 4-6 weeks so please feel free to text or email him.....calls can be difficult, but feel free to leave a VM.  You can even visit...he's not in an isolation bubble.... but please check with me first b/c as treatment progresses he may have to limit the visits.

I have set up a blog- but I haven't posted anything yet!......jordieupdates.blogspot.com.

Please feel free to forward this email as it seemed to work getting the word out but after this email just check the blog. Thanks.

Lots of love to you all,

Debbie

Sent from my iPad