Napping really seems to be my new primary job. Just can not catch up, so here's the anti-synopsis of what you missed on Caring Bridge. Grab your favorite beverage and try to stay awake:
June 18, 2021 - Secrets of the Mind
Journal Entry by Jeff Howard — June 18, 2021
It seems time for an update but really, there's not much to say other than "Steady on". Hanging out, getting poked and prodded, waiting for the Chemo to clear the deck so we can get to the next step. Thus it is that it's time for Goof to tell a story.
If spiders make your skin crawl, this might not be the story for you.
If icky human body stuff makes you gag, you may wanna walk away.
If creepy stuff is, um, too creepy you might want to creep on out.
The weekend after our first Roswell visit our heads were spinning with new and wonderful and scary possible medical interventions. To this day I'm not sure I've processed even a majority of all that was thrown at us that day and with a mind in turmoil can come terror or fear or numbness or, for me, inappropriate amusement served up by an over-active subconscious.
I had a dream and in that dream, center stage, was this medical idea of an IV port. Simple genius, rather than playing pokey pokey with needles over and over for new IVs they place this port that can be used over and over. And to save having to lose use of an entire arm they place it either high on a shoulder or out on a bicep.
That part is real.
In my dream I was in the room waiting for the procedure to place the port. The Doc came in with a nurse who carried the port, antiseptic stuff, scalpel, and a tiny clear box. With 2 spiders in it. After cleaning the area the Doc placed a spider on my collar bone and picked up the scalpel. Very carefully he made an incision and held it open. The nurse 'handed' the end of the port to the spider who then grabbed it, crawled through the incision, and put the end of the port in place while the Doc fastened the port access plate to my collar bone and sealed the incision.
He then explained that the trained spider would find the optimal anchor point and connect the port. He would then stay in there until the port was no longer needed and, after a signal from the Doc, would detach the port and crawl back out with it. Weeks or months later.
The Doc then proceeded to install a port on the other side, for maximum flow he said, using the same procedure and a second trained spider and that was that!
Sadly the spiders are evidently proprietary and a closely guarded trade secret here at Roswell so when it actually came time for the procedure they refused to even introduce me to my stow-away. Maybe I'll meet him on the rebound!!
Love & Support
Journal Entry by Wendy Howard — June 19, 2021
We're just a couple of weeks into this journey and already have been the recipients of multiple gestures of kindness. Each of which is so meaningful for different reasons.
Today we thought we were going to be entertained out Jeff's window with a spectacle of aeronautics but the weather prevented most of that. We're looking forward to some clearer skies tomorrow so that Jeff can enjoy his own personal Father's Day Thunder Over Buffalo program.
Goodnight All -
Thank you so much for your love and support and prayers.
Half Way-ish
Journal Entry by Jeff Howard — June 22, 2021
We have 2 weeks behind us now.
Yesterday was updated biopsy day. We've learned that this will be even more extensively tested to help determine the long-term course of treatment. We will not have all of the results back for a couple of weeks. Hopefully, however, we'll learn soon that the chemo did what it needed to do: delivering a knock-out punch 🥊 to the marrow so that we can begin letting things rebuild.
Thank you for the cards and encouragement.
Fun 'Fact' of the day
Bacteria- the rear entrance of the cafeteria.
(Courtesy of Mr. Gertner)
Thank you, Lord!!
Journal Entry by Wendy Howard — June 22, 2021
We are happy to say that the initial biopsy report is in this evening!
The doctor says there is no trace of leukemia in Jeff's bone marrow!!
What this means, right now, is that there will be no more chemo during this hospital stay. The focus will move from watching his bad counts drop to watching the good ones rise. They will be testing daily to check his white blood cell counts. When they get to the acceptable level he will be allowed to go home. In the meantime, they will continue to support his system with red blood cell and platelet transfusions, antibiotics, antivirals, and such.
Further testing will continue over the next 2 weeks on the biopsy. The results of that will, apparently, help to determine his follow-up treatments.
Thank you all for your prayers and encouragement to help get us through.
Just call me baby-face! For those who have never gotten to peek behind the curtain: the beard and 'stache started falling out yesterday so before the day was out the naked face was in.
Sorry for any traumatized!
Ups and downs
Journal Entry by Wendy Howard — June 24, 2021
Yesterday Jeff developed a terrible rash that they believe is a reaction to the antibiotic he was on for the prior 10 days. Thankfully, he is not itchy. Today it is worse but still not itching!
Unfortunately, overnight he came down with a fever. It could be connected to the rash. It could be part of the process. It made for very little sleep last night as the nurses were in regularly to check vitals and hook up new antibiotics.
Please pray that the fever stays resolved and that the rash goes away.
He continues to get either red cells or platelets, as needed.
Thank you all for your continued prayers, love, and support.
June 26, 2021
Journal Entry by Wendy Howard — June 26, 2021
Unfortunately, Jeff is on Day 3 of the fever. The rash continues to look worse but feels the same and for that, he is eternally grateful!
Pray for improvement with the rash and some coughing (which easily sets off the IV alarm and gets aggravating).
Speaking of aggravating- pray for patience as being cooped up is getting tougher.
Pray for the regeneration of those Neutrophils (the infection-fighting white blood cells)! That's the key to going home! Could be next week or could be longer but we're voting for next week!!
Thank you, always, for your love and support ❤
3 Weeks Down
Journal Entry by Wendy Howard — June 28, 2021
I am happy to report that Jeff is without a fever today. Yesterday they said he was "on the edge of having a fever", which really meant that at just under 100 he still felt crummy. He also had an appetite back so he was able to enjoy his brisket, cheesy corn, baked beans, and cornbread from his favorite bbq guy, Mr. Mike Mrva. The rash seems to be on the mend, which, never did turn into itching or pain of any sort.
His doctor today said that she expects a couple of more weeks in the hospital. However, I know you all can pray him down to one week, right? 😀
Thank you call for your love and support!
Steady on
3 Weeks Down
Journal Entry by Wendy Howard — June 28, 2021
I am happy to report that Jeff is without a fever today. Yesterday they said he was "on the edge of having a fever", which really meant that at just under 100 he still felt crummy. He also had an appetite back so he was able to enjoy his brisket, cheesy corn, baked beans, and cornbread from his favorite bbq guy, Mr. Mike Mrva. The rash seems to be on the mend, which, never did turn into itching or pain of any sort.
His doctor today said that she expects a couple of more weeks in the hospital. However, I know you all can pray him down to one week, right? 😀
Thank you call for your love and support!
July 03, 2021
Journal Entry by Wendy Howard — July 3, 2021
The word from the medical team today is that thinking of coming home next week is optimistic. They really think a couple more weeks. They also said that slower is better. When the counts recover quickly it can be because of the disease.
So if slow 🐢 and steady is better for this race 🏁, then that is what we want!
Thank you, all, for your prayers and support.
SIDE NOTE: Jeff's lovely NP was going to try to get him special dispensation to be able to "pluck" his garlic since it wouldn't have to be dug up.
Jeff gave her a garlic lesson 🧄
It was sweet of her to try 😉
Suzie Sunshine!!
Journal Entry by Wendy Howard — July 4, 2021
Jeff's little ray of sunshine came in for her usual morning visit a.k.a. Shiela his NP. We're still wanting things to move along at a healthy pace BUT this morning his WBC hit that magic #1 🧡 There was also a measurable amount of neutrophils. (0.1) In the coming days the goal will be 0.5. She was quite happy to present that information to Jeff this morning.
They will be contacting Dr. Harris at Broome Oncology, early in the week, to talk with him about the potential for follow-up care at home.
Praise God!
I bet you never knew that Neutrophils could be so exciting!!
Thank you, all, for your prayers and support!
News Soon!
Journal Entry by Wendy Howard — July 6, 2021
Just a liii-ttle more improvement in those numbers 📈 and we'll have some news about the immediate future 🗓
Stay Tuned to this station for further information! 📻📺
We're HOME 🏡
Journal Entry by Wendy Howard — July 8, 2021
I had a picture planned but the App version of this site stinks and we are currently without power for computer usage.
We are home and happy to be here!
Our friend Dan Labzentis is saving us with a portable generator, in case things are not restored before bed.
More later!
Love you all!
Thank you for your prayers and support!!
Welcomed Home!
Journal Entry by Wendy Howard — July 9, 2021
Yep - we're still happy to be here!!
The power came back on late last night and we consider ourselves more than fortunate as we drove around a bit today and could see trees still laying on power lines and knowing that there are folks not slated to get service back until tomorrow (perhaps later).
As for Jeff's status. He feels much more normal today. He will find it difficult to follow strictly some of the guidelines. Today he's back to feeling much like before going into the hospital "Are you sure I'm sick? I really don't feel sick."
This next week we begin follow-up appointments with his local doctors. Dr. Harris should have some news about what and when his local consolidation treatment will be (as recommended by Roswell) and we will connect with his primary physician to talk through the last few weeks. We are also anxious to have them weigh in on the discussion of a stem cell transplant, which is a strong possibility in the future. This is a big decision and would involve an even longer stay away from home. It is also something they are encouraged Jeff would handle well after watching his reaction to his initial chemo treatment. It is suggested he try it sooner rather than later while he's still reasonably healthy. We will look to the Lord for guidance on this issue along with our trusted doctors.
We can't say enough about how much we appreciate the support of our girls. They have been so helpful as they care for us along with their own households and full-time jobs. Kaitlyn's fiance, Luke, has also been right there with them. Our friend Dan has also been a great help with our chickens... Well, we thought... but when we left we had 12 and now we only have 4 so... 😄 Poor Dan and Kaitlyn both are feeling bad about the losses, much more so than we are.
Jeff is so grateful for the quality of care that came from the nurses at Roswell, in particular. They really did go above and beyond. (He made it pretty easy for them - he was a STAR patient!). I was blessed outside the hospital with some wonderful people. My friend Kristen was so welcoming and kind inviting me for dinner, bringing me fresh strawberries, transporting some special treats from home to share with other friends - big thanks to her and Ruby. My friend Joelle - it was wonderful to meet up with her for some cheer and dinner. She was also instrumental in getting me into less expensive accommodations (thanks to a call to her ex-husband). Matt was generous with my room at the hotel! I hope he enjoyed his BBQ-Thank you! Don the evening desk person at the hotel was often a ray of sunshine at the end of a long day and my daily chauffeurs (shuttle drivers) were really kind and didn't even want to accept the tip money I gave them at the end of the stay. Many, many people made it easier to be in a difficult situation because they always greeted me with a big smile and hello.
Thank you, all, for your continued prayers and support.
P.S.
My dad snuck over quickly before we got home to put up the welcome sign! Thanks, Dad!
Kaitlyn filled in the ToDo list for Jeff!
5.25 days at home!
Journal Entry by Wendy Howard — July 13, 2021
First of all - it has been so nice to be home for a few days! Sleeping in our own bed, having breakfast together, watching tv together in the evening, sitting on the back porch and watching the birds have all been such a treat!
We saw Jeff's local oncologist today. It turned out to be just a "checking in" kind of appointment. Right now, the doctors from Roswell don't have any treatment protocols in place for Dr. Harris. He was very pleased to see Jeff looking so good, all be it a bit less hairy. We had a chance to talk to him about the idea of a stem cell transplant. He was in agreement with the Roswell doctors that going ahead with a transplant before he was to have a relapse would be the best way to go.
July 23rd we return to Roswell for his biopsy. If it comes back clean, he will be considered to be in remission. If it doesn't then a stem cell transplant would be the next step. If he's in remission, then the decision is ours to make. We covet your prayers as these discussions come our way.
Remember that the goal Jeff wrote on that hospital whiteboard was to "Beat Leukemia!" So if tough decisions have to be made to reach that goal then we want to be prepared to make them.
Thank you, all, for your prayers and support!
