Happy 2016! 

I hope everyone had a wonderful couple of weeks with family and friends!

A brief update-

Jord was home for Christmas but developed a fever and was re-admitted to the hospital on 12/27 where they treated him for a new pneumonia. He was discharged on 1/4/16.....not only improving from his bout with the pneumonia but also having started more chemo....2 doses out of 3. He's getting his 3rd dose today as an outpatient. While we wait for chemo results and potentially plan next steps, we will keep up the almost daily trips to the hospital for tests and/or transfusions...whatever it takes to keep Jord healthy and progressing down the road to recovery!

In September, we accepted that the road to recovery would be long. We never anticipated how winding and bumpy that road might become but it's been a steep learning curve.  Jord's strength of body and of mind has made it possible for him to handle all these "bumps" along the way as well as all the potential curves ahead.

We continue to benefit and appreciate all your support. I cannot say thank you enough.

Much love.

xo,

Deb

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!