So Ed completed 12 doses of high-dose chemotherapy Monday at Noon. Receiving the chemo is not the hard part; surviving what the chemo does to you is! Ed's had a pretty tough week as he deals with and tries to push through the side effects of the toxic cocktail he's been given to blast his Leukemia into Kingdom Come! He's dealing with burns and blistering on his hands and feet and a total body rash. He's also had fevers since last Wednesday. Fortunately the team feels all these things are directly caused by the chemo and not by any infection. Let's hope it stays that way!
The bummer (of many bummers!) of all these side effects is that it's really hampered Ed's ability to get up and move around. Having been already pretty limited in his ability to get around before coming to the hospital, you can imagine it's been triply hard to try and get him to move around with hands that hurt when he tries to use a walker, and with feet that are blistered and quite painful when putting weight on them. We're trying to focus on the positive though and be thankful that his side effects aren't more severe - they certainly have been in the past. We're trying to know that tomorrow WILL be better. It has to be!
Ed's blood counts are extremely low and he's officially "neutropenic"; without an immune system. He received his first transfusion of platelets today and will probably need Red Blood cells at some point in the next few days (PUBLIC SERVICE ANNOUNCEMENT ALERT - PLEASE GO TO YOUR LOCAL RED CROSS AND DONATE BLOOD IF YOU ARE ABLE! LEUKEMIA PATIENTS NEED LOTS OF BLOOD PRODUCTS TO SURVIVE THIS PROCESS). Otherwise, the staff at Karmanos are caring for him and ensuring he's as comfortable as possible. And of course, I am there most days with my mini-office set up in the corner; taking confernce calls and staying engaged with work between my "sargent" duties - being Ed's motivation to move, eat, shower, etc.. I've also become pretty adept and kicking out the staff when they try to bother Ed too often and disrupt his sleep. A very good friend has given me the moniker of "sarg" and I suppose it fits! I'll embrace it -it's my role and I'm happy to play it!
If Ed stops having fevers, the team will discharge him, but due to his lack of activity and the additional weakness he has, he'll most likely move to an inpatient rehab center to regain some strength before returning home. Sometime around Day 28 (Day 1 was last Tuesday when he had his first dose of chemo for those of you keeping score at home!) the docs will perform another bone marrow biopsy to see if the Chromosomal abnormality - or the thing that makes him have Leukemia - is still present. If it's not - YAY remission! If it's there, then we'll have more discussions with his team. Stay tuned!
Before I sign off for the night, I just want to express how grateful Ed and I are for the outpouring of prayers and support that everyone has offered our family. We are overwhelmed and humbled. A special shout-out to those of you that have cooked for our family in the past few weeks - we would subsist on nothing but take-out if it weren't for you! And a very special shout-out to my peeps who keep me sane - you KNOW who you are! In short, thanks to everyone who is helpinig us on this journey. We could not do it without all your support!
We leave you with love and highest hopes!
Ed, Kelly, Regan and Ryan
Ed's blood counts are extremely low and he's officially "neutropenic"; without an immune system. He received his first transfusion of platelets today and will probably need Red Blood cells at some point in the next few days (PUBLIC SERVICE ANNOUNCEMENT ALERT - PLEASE GO TO YOUR LOCAL RED CROSS AND DONATE BLOOD IF YOU ARE ABLE! LEUKEMIA PATIENTS NEED LOTS OF BLOOD PRODUCTS TO SURVIVE THIS PROCESS). Otherwise, the staff at Karmanos are caring for him and ensuring he's as comfortable as possible. And of course, I am there most days with my mini-office set up in the corner; taking confernce calls and staying engaged with work between my "sargent" duties - being Ed's motivation to move, eat, shower, etc.. I've also become pretty adept and kicking out the staff when they try to bother Ed too often and disrupt his sleep. A very good friend has given me the moniker of "sarg" and I suppose it fits! I'll embrace it -it's my role and I'm happy to play it!
If Ed stops having fevers, the team will discharge him, but due to his lack of activity and the additional weakness he has, he'll most likely move to an inpatient rehab center to regain some strength before returning home. Sometime around Day 28 (Day 1 was last Tuesday when he had his first dose of chemo for those of you keeping score at home!) the docs will perform another bone marrow biopsy to see if the Chromosomal abnormality - or the thing that makes him have Leukemia - is still present. If it's not - YAY remission! If it's there, then we'll have more discussions with his team. Stay tuned!
Before I sign off for the night, I just want to express how grateful Ed and I are for the outpouring of prayers and support that everyone has offered our family. We are overwhelmed and humbled. A special shout-out to those of you that have cooked for our family in the past few weeks - we would subsist on nothing but take-out if it weren't for you! And a very special shout-out to my peeps who keep me sane - you KNOW who you are! In short, thanks to everyone who is helpinig us on this journey. We could not do it without all your support!
We leave you with love and highest hopes!
Ed, Kelly, Regan and Ryan
I'm surprised Erin and I didn't come up with SARG before... you've always been slightly bossy, but with the extreme competence to back it up - a lucky silver lining for Ed in the face of this cloud. We're thinking of all of you often - especially Ed of course. I wish we could do more, but for now I am going to focus on a small goal - your reasonable request to get myself to a blood bank this week! We love love love you all! Oh yeah... judging by the FB crib-escape video, if Ryan gets her perseverance from Ed, that's a good sign!!!!
ReplyDeleteMore like a General! Keep up the sassy attitude that is one of your greatest strengths. Bob and I also (like Megan) registered with marrow.org this week. Even though it is infintesimely (sp?) that we would match Ed we figure karma/six degrees/ whatever we might match someone's friend out in the universe and their friend would match Ed.
ReplyDeleteA good friend of mine from College asked me to post this comment (he's a gear-head but not very techincal!) See the bottom of his post for info on a Detroit/Toledo area Bone Marrow drive Thanks Scott!:
ReplyDeleteHello Ed and Kelly-first of all, thank you for having the strength and courage to share your story with all of us. I can't image the enormity of the news and what a disruption it's been to your lives. Sharing the story and your plans for moving forward are inspiring! You've always been in my thoughts and prayers. I'm sure everyone you've reached out to are praying too!
I plan on traveling to the donor drive in Tecumseh on July 8th. I am trying to get members of our car club to turn it into a social event; weather permitting I might get a classic car caravan to descend on the town! I'll keep you posted and will take pics. In the meantime, if there is anything-ANYTHING-you need, let us know.
Love, Scott (Steph too!)
Bloggers-here is the info:
http://www.marrow.org/JOIN/Join_in_Person/drive_details.pl?drive_key=039-4-03399