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