Celebrating Jim

Dear amazing family and friends,

We think we have finally located a place large enough to hold the people who will be able to make it out to join us for the celebration of Jim’s life next Saturday… but only because so many of the people who love him world-wide can’t get here for one reason or another. If everyone could make it, we would have to start making our appeal to Jerry Jones.

Services will be held at 2:00 on Saturday August 25th

Christ United Methodist Church 

3101 Coit Rd, Plano TX

There will be a reception at the church immediately following the service, and anyone who fits is welcome to join us at the house after the reception. 

I am not sure if it has been 3 days, 3 minutes, or 100 years since 8/17/18, but so much time seems to have passed, and so little has actually happened, and the world is a whole different place…. But there is so much to do that I can’t get carried away here rambling about the Klinkenverse. Still I HAVE to say yet again how totally incredible the force of love of Jim’s and my family and friends around the kids and me has been during this time warp. You all have pulled together to lift us up and carry us through… I can’t begin to mention names because there are so many, and you are doing so much, but I don’t know how I would be making it through without you.

One little ramble I do feel compelled to share… I have obviously never been in this position before (that may have come out wrong, but you know what I mean, and you will cut me some slack). I’ve been the person trying to find the right words to say to someone in this position. On that side I wondered how much the other person would want to be reminded of their loved one… of course they would want to know how very much he/she was cared about and remembered, but certainly every tiny little reminder of what that living partner lost would feel like little needles to the heart, wouldn’t it??

So in these days I’ve poked around and tried it out on myself… does it feel better to avoid just a bit until the wound starts to heal (as if!), or does it feel better to invoke his name repeatedly? There is no question when it comes to the kids. I will always deliver every sentiment from both of us, because everything we’ve always said has been from both of us, and everything always WILL be from both of us. I asked them if they are comfortable with that and we are all in agreement.  From there I started testing it out on all of the other million places in the day that he is supposed to be present.

Of course I can’t speak for everyone else, but now I can speak for myself, and the answer is -yes. Yes it does feel like tiny little needles in my heart when I think about what I’ve lost, what the kids have lost, and what Jim will miss… And then each of those needles injects a little infusion of light and energy and JIMNESS that fills my heart with joy. Because that is Jim, and that part of him he left with us and it fills every bit of space around me when I think about him.

I know it isn’t easy to know what to say… there is no right thing, there is no wrong thing, and nothing is going to fix my broken heart or yours. But as far as I’m concerned, share your memories and never hold back from telling me that you are thinking about him -I can never overdose on Jimness and love.

SO GRATEFUL

(Also, we are making chili tonight. He loved my chili. If you are near by, come and share chili and hugs)

At Peace

Surrounded by us. Suffering is over. So much love, gratitude, sadness. Thinking service for Saturday August 25th, but will update with details.

Love.

Updating With Broken Heart

There is so much more to be said, but only one thing left to be done – quit being selfish, and let him be free of suffering. The kids have all been with him today. We are here with him and with eachother. I’m sure I will have more to say… I always do. But for now just togetherness, love and gratitude.

August 15

First and foremost, HAPPY 18TH BIRTHDAY CHLOE!!!!!!!!

That is a #1 priority, no matter what else is going on in this family!

Jim update(ish) – We have done a couple of trials to take tube out, and Jim breathes nice and slow enough for a bit but when the docs are ready to make the decision, he is still breathing too fast so they decide to give it more time. That is where we are at. His chest xray continues to improve, which is great. Unfortunately, the stress on his kidneys is worsening, and that causes acid to build up, which makes him breathe faster so it is a vicious cycle. Still, they tell me we are making progress, and I believe!

From a bone marrow perspective, Jim continues to provide Dr Berryman with one “exciting” challenge after another. White blood cells, which were totally normal until last week, are suddenly gone, leaving Jim wide open to infection. Pretty much every step of the way Jim finds a way to amaze and confound the geniuses… no surprise to anyone reading this. Klinkhamers amaze and confound. Duh.

So why the white cells just disappeared is a new mystery-

Is it a new kind of blood cancer? (which is of course possible but for which all other indications have been negative) Is it the Myeloma pushing everything else out? (which of course is possible but is totally out of proportion with the indicators we’ve seen pop up and then begin to regress) Is it infection? (which is possible but so far undetectable) Is it some bizarre immune reaction? Maybe. Maybe. Maybe. Maybe. Next step to finding the answer – another bone marrow biopsy. Dr Berryman just did that, and it went smoothly. Results won’t be back for several days. In the meantime, we keep working towards getting the tube out, watch his kidneys to determine if any added support is needed, watch his heart rate (which goes out of whack generally just in response to stress), watch for and protect against infection, and provide blood and platelets as needed.

After an active morning of working on the breathing trial, and then enduring the bone marrow biopsy, he is sleeping peacefully and I am cherishing the sight of perfect numbers on the vital signs monitor.

Klinkenverse update -today I am even more speechless than ever with gratitude for the support of our amazing family and friends! While the kids continue to shine their light on and care for Jim (and me!), Cheryl shuttles and feeds and caffinates. Dan and Sue came in from Chicago yesterday, and their presence has been a huge comfort to Jim and all of us! So many THANK YOUs to Jennifer for staying over with the puppy dogs so I don’t get sad thinking of them sleeping alone, to Alisa for keeping a watchful eye out, to all of you for checking in and offering every type of help under the sun, to Jeni for bringing food, and Jamie and Melissa for cooking delicious meals even when I feel like everything is going to taste like sand until my mouth recognizes their home cooking, and …. just tears come where “thank you” is totally inadequate for the angels from heaven Melissa, Krystn, Scarlett, Maryam, G Scott, and Matthew, who spent their day actually CLEANING our house -and I’m talking EVERYTHING including refrigerator, showers, and YIKES boy room; and doing our laundry (not to mention entertaining Sammie Belle, and getting scowled at by Daisy.) Now is the time for one of my new made-up words, and I’ve got nothing. I don’t even know how it is possible to have such amazing friends, I only know I couldn’t possibly have done anything to deserve you!

One more big thank you to all of you, because even the messages of love from the many of you who wish you could be here to do something for Jim right now ARE doing something for Jim right now!

Another ICU Day

Last night I wrote “what’s going to happen in 5 minutes? I don’t know.” and about 5 minutes after I hit “post”, things got a bit rougher for a patch. Nothing so drastic that they are making an episode of Grey’s Anatomy based on our night, just discomfort and changes in vital signs with adjustments needed. Fortunately that patch resolved quickly, and few more came and went throughout the night in similar fashion. In the morning the Critical Care docs came in and spoke with Kenzie, Chloe, Julie, and me. They said his xray was improving, and his oxygen demand was decreasing (good and good) and his cardiac function continued to look good (good!), but they still felt he wasn’t quite ready to do the breathing on his own yet. In order to get there, he has to spend some time working really hard breathing through the tube by himself. After a rough night, I couldn’t agree more. He needed his rest.

Today those docs have visited a few times and varied between letting him do some breathing and giving him some rest. He had a while of being quite awake and as communicative as possible with tube down throat, squeezing my hands, making good eye contact, touching fingers with Kenz, pulling my hands to his heart, and giving me a big clear thumbs up when I instructed the staff on turning him with the Hovermatt. I swear that last one is the most energetic reaction he has had this whole time, other than when he sees his loved ones…. the man is STILL WORKING!

Dr Berryman called the kidney Dr in to join the party because with all of the drugs and especially high dose steroids, and lasix to get out the extra fluids, his kidneys are starting to get stressed out and Dr B wanted to make sure he is ahead of the game on involving anyone who might be needed.

Thank you so so so so much family and friends for all of the incredible support, visiting doggies, bringing food, listening, just being you. We love you.

Now Jim has been so very peaceful these past many hours, with perfect vital signs, and I have a rare opportunity to pet Kenzie’s head while she’s resting here next to me on the hospital couch, so I am over and out for tonight.

(PS I hit “post” and then looked up to see that his eyes were open and he was quietly, in his sleepy sedated state, reaching for his tube. Kenz and I went over and had another good few minutes of talking to him and getting good head nods and hand squeezes in response to our questions. He even slowed his breathing down when we asked him to because he was looking at Kenzie’s beautiful face, and feeling her love. We said “you did that because you are so strong!” and he squeezed our hands and shook his fist. Now he is back to peaceful sleep.)

From the ICU

I hate to be sending this from the ICU – I HATE for Jim to BE in the ICU. But we are here, and at the moment Jim is “comfortably” sedated on a ventilator. Diagnosis is respiratory distress, which comes from some combination of fluid in his lungs from the imbalance that has been going on lately, possible pneumonia, maybe some graft vs host, and potentially some drug reaction. In other words, the explanation is about as clear as his lungs. This all happened pretty quick, so you are surely wondering how we got here… and we (the doctors and the kids and I, since Jim is too asleep to wonder anything but WTF at the moment) are wondering the same thing. I don’t have answers but I will give you what I’ve got – Last update we were managing through the big episode of Graft VS Host Disease (GVHD) raging in his GI system. Thankfully with some awesome revolutionary drug developments, we got through that phase, and he was home and eating basically normally again. And then there was pneumonia. And then there were nose bleeds. And then there were more nose bleeds and more pneumonia -maybe. And then there was weakness and unsteadiness. And then there was unstable blood sugar. And then there was massive fluid imbalance. And then there were more nose bleeds. And then ….

We had heard many times that the road after transplant would be a wild and rocky one, but of course we could have no idea what that meant. And truly there would have been no way to prepare, because it is different for everyone. So we rolled (and we roll) with the changes. Rolling all the way back to the beginning, we have to keep in mind the trickiest part of navigating this road is finding and keeping the balance between Myeloma and GVHD. As Dr Berryman told us, once you have a transplant, you have the cure inside of you. HOWEVER, we give immunosuppresive drugs to hold that cure back in the beginning to keep it from attacking the wrong things, so while we hope we are able to set the cure free to do it’s job on the system before we see Myeloma trying to gain some ground again, we aren’t always able to keep the field totally clear without a fight. In Jim’s case, we had to do a heck of a job holding his kick-ass new immune system back, because it was… well… kicking his ass. So indeed along with the nosebleeds, Dr Berryman noticed the beginnings of the return of Myeloma indicator proteins in Jim’s blood. That was a few weeks ago. Immediately he said “The tide has turned. Stop the immunosuppressives”. We did. And immediately we saw the decline of those Myeloma indicator proteins. (See… there’s always some good news. And don’t worry, there will be some more. I can’t make promises or predict the future, but there are some bright spots, even from the ICU.) In the meantime, I am SURE you will remember me telling you many many months ago about an immunotherapy that was not appropriate for all patients, but for which Jim was deemed a good candidate. Dr Berryman felt that if we left the immune system to its own devices it would likely take care of the budding Myeloma itself, but that we would be even better served by helping it along with this targeted immunotherapy treatment (Darzalex). We gave the thumbs up.

Dr B scheduled the treatment for an outpatient clinic visit last Friday. During the treatment Jim had the common reaction of hyperventilating and sweating, which happens to about half the patients, and which tends to be a harbinger of good immune response. He was going to need some blood and platelet support afterwards, and he was still a bit uncomfortable, so Dr B asked if we wanted to be admitted for convenience to just get everything done overnight. We said “yes please”. From there it was an odd set of events that stretched the stay through Monday, when Dr Berryman said “hey you haven’t been feeling super great anyway, how about we just keep you for a couple of days and do chest CT, brain scan, echo cardiogram… you know, the once-over” we said “yes please”. Unfortunately Jim started having trouble keeping his oxygen levels high enough a couple days later, and the docs decided they needed to put him on the ventilator so it could do the work for him while the docs figured out how to resolve the issue. They also really wanted to get a quick look at the fluid and walls of his lungs, which they held off doing until now because they were not going to do that unless they knew they were going to intubate him (put him on the ventilator). So here we are. 3 days on the vent and:

  1. He is on a ton of antibiotics, and nothing at all has grown out on the cultures;
  2. Chest XRay shows some “consolidation” which improved from 2 days ago
  3. His chest CT was not impressive for anything new
  4. They have successfully turned down the support on the ventilator, and he tolerates taking over more and more of the work on his own
  5. Brain MRI is clear
  6. Echocardiogram is fine (he was experiencing some irregular heart rate and intermittent afib, which cleared immediately with meds and has not recurred)
  7. Blood cultures are negative so far
  8. Liver function is good
  9. Kidney function is good
  10. GI function is good
  11. He is responsive when they let the drugs wear off a bit … he waves at the kids and squeezes our hands, and clearly wants this f@#$%#ing tube out of his throat

The critical care doctor told me today that she intends to take him off the ventilator tomorrow, and she has every expectation that she will be able to accomplish that. If it turns out it doesn’t happen tomorrow, she will continue to work towards the goal over the next days. Dr Berryman expects to restart the Darzalex when the lung issue is resolved, and believes we still have the Myeloma cure firmly in place.

What will actually happen tomorrow? I don’t know. What will happen in 5 minutes? I don’t know. I don’t want to mislead you, and I’ve been told that I see the world through rose-colored glasses so I’m always a bit wary. But I can’t take the lenses off, so it seems clear that I just live in a rose colored world. That doesn’t mean everything goes the way I want it to go. Hell this blog wouldn’t exist if my world was all perfect roses and sunshine. This is one of the most difficult days I’ve had in it. It is breaking my heart seeing him in this bed sedated with a tube down his throat… teaching the nurses to turn him and reposition him with the equipment that he and I have demonstrated together so many times so they could use it on real patients. I would do ANYTHING to take it away from him and to take it away from the kids. Today my rose colored world is overwhelming. But I am overwhelmed with love. And I’ve examined the facts up and down and backwards and forwards, and my conclusion remains the same – while I have hope and a positive outlook because it is and always will be in my nature, I have hope because the smart people say it realistic to do so, and they are confident that they can get him better.

That is all I have. That, and a ton of gratitude. The kids, as always, have been the AMAZING force that keeps him strong. They have been here holding his hands and being near, and giving love even though it is so hard to see him this way. Kenzie left recruitment to be at his side. They all, Jennifer and Hayden especially, are taking care of the house and doggies, Chloe is providing taxi service, and Hud is stepping up in ways he didn’t know were in his power. Julie brought tons of love out from Chicago and spent days and nights sitting with Jim and staying with the kids; and Cheryl (no doubt supported in the background by Bill) has been providing awesome tireless support -driving, feeding, hugging, hand-holding. And Adam, Dad, and especially Mom were a huge help to Chloe and me last week. Thank you all of our family and friends for your continuous love and support.

I will try to post a quick update tomorrow.

Nothing New to Report

Here is what we know -graft vs host sucks. BUT IT BEATS CANCER. LITERALLY! So it remains a waiting game. Food is still going right through, but IV nutrition is providing support, so at least nutrients are getting where they need to go. The bone marrow is stressed out so blood counts go down… The doctors assure us this is par for the course, and that’s what blood transfusions are for. Just support while we wait out the angry German cells. This is “normal” and we shouldn’t be concerned. Wildy annoyed, but not concerned. We are still at Baylor because that’s where it is easiest to manage the act of balancing IV nutrition and blood and supportive stuff, and Jim is quite glad to be there during the process.

Along the way we have many times quoted the old cliche “two steps forward, one step back”. Looking at it that way, this moment was starting to feel like one heck of a frustrating leap back. But today, while talking to our amazing friend Joanne (who 1. Is an NP who spent years working in transplant, and 2. Remains awesomely supportive and helpful even while she is fighting her own incredible challenge) it suddenly occurred to me that the analogy really doesn’t fit. We are running a marathon here. Heck some days we are running a marathon and climbing mount Everest! And when you are running a marathon or climbing a mountain, every step (except during bizarre psychotic “runners high” flashes and second winds) is harder than the one before it. Some times you reach a part of the path that is so challenging, you think you can’t possibly take another step. But you don’t step backwards (unless you suffer from masochistic tendencies) you dig deep and find that next step. Those rough parts are not backwards steps in the journey… They are actually huge accomplishments in your forward progress. And oh my goodness does it feel amazing to reach that goal and celebrate your success!

Jim hasn’t taken a single step back on this  entire adventure. He hasn’t even faltered. But he is definitely navigating what we are told is the most challenging part of this race. So why didn’t we see this on the map and anticipate, you might ask. Well… Some people get an easier path, and they get to skip this part. There is part of me that wishes he was one of those, but then I remember that GRAFT VS HOST BEATS CANCER. Besides, bragging rights are greater when you go the full distance. So all I can do is offer him my water bottle, and a handful of trail mix (not going down the road of where that would end up right now), and talk about how spectacular the view and the glory will be at the finish. I can only imagine the overwhelming challenge of his journey… Mine is parallel and so much easier, and I wish we could trade places until this phase is over. But over it WILL be, and the rest of our journeys will be even more beautiful because of it.

In the meantime, Jim is doing the usual amazing job of keeping his spirits up, meditating, and working mentally and physically on taming his inner German. Marathons and mountains would be unconquerable without a support crew, and that’s where you family and friends, and the love and encouragement you share, keep keeping that forward progress on track. We can’t possibly ever thank you enough!

We will share a photo of our finishers medals and Jim’s flag planted at the top…. Soon!

VERY QUICK UPDATE

I promised Jim nothing but a quick(ish) set of facts so here’s what we’ve got:

The challenge – Graft vs host has been tough on the stomach for the past 6 weeks or so. That has meant difficulty eating, discomfort, and weight loss. It got worse this week when Jim had a little upper respiratory infection, so Dr Berryman had him admitted to Baylor late Thursday night where they can make sure he stays hydrated and electrolyted (sorry honey, I know that fails the “just facts” rule but it’s not a Klink blog post if I don’t make up a word) while we wait for it to pass.

The good news – CT and tests look good and indicate that there is not some big scary thing lurking around the corner. It is either infection (already treating just in case) or graft vs host. This too shall pass (in fact EVERYTHING is passing right now… but that WILL stop at some point!)

THE GREAT NEWS – 2 bone marrow biopsies and lots of blood draws confirm 100% conversion to the (currently angry) new German cells! All numbers continue to look great! Even more exciting: Both biopsies confirm 100% remission!!!

So the current state sucks for the short term. Jim feels yucky, and we all hate that almost as much as he does :-(. But the news and the future outlook are FANTASTIC! Keep in mind that the awesome battle instinct demonstrated by this new immune system is the cure for Myeloma. This is the cancer destroyer in action, and we are counting on it continuing to win that battle. But we are looking forward to it learning that Jim’s colon is not the enemy. In the meantime, the nurses and doctors at Baylor are doing the usual stellar job keeping Jim feeling as good as possible while the German gets comfortable with KGC (Klinkhamer Gastrointestinal Central.) If Jim isn’t answering texts or calls, it’s just that he and his bowels are trying to get some much needed rest between visits from his very attentive nurses.

I promise I will update you all if there is any other news, and will let you know when we are back home… soon! Jim didn’t want me to waste time with pictures right now so I am complying with that directive. But I do have some great ones from the past few months, so I will try to share a few next time. In the meantime you will have to trust me that while he is frustrated with the (temporary) weight loss and muscle loss, he actually looks GREAT with good healthy skin color and a full head of wavy hair ;-).

Thank you SO MUCH, family and friends, for your ongoing love and support. That is what gives him the strength to stand up to the fight, and is one of his greatest advantages when it comes to winning the battle!

Frohes neues Jahr!

And (or) HAPPY NEW YEAR!!!!!

First and foremost we are wishing a very happy and healthy 2018 and beyond to all of our family and friends!!! The holiday is yet another opportunity to count our blessings and become overwhelmed with gratitude for the support and love you all keep providing! THANK YOU!

As for the Klinkhamer clan… we are off to a great start! It is lovely to be home, and wonderful to be surrounded by the kids and their break-time activities! I keep trying to get pictures of everyone, but I can’t seem to catch up with them so instead I’ll show you a blanket pic -literally. Jim received this beautiful gift from the Mahler family!

So it’s day 24 already , and all of Jim’s new cells are producing like crazy. In fact, his lab tests are coming back darned near normal! He still has the expected fatigue and a bit of nausea, but he is feeling good in general, and getting better every day. He and man’s best friends are very much enjoying the bonus rest and nap time…

 

It’s tempting to get carried away, so we have to keep reminding ourselves how important it is to keep a “safe” distance, wear masks, wash and sanitize obsessively, and continue to be germaphobeaholics! We go back to the Baylor clinic every few days for labs, and so far each visit has been a simple exercise in waiting for the thumbs up. It’s always good to hear “you are doing great!” from the doctor, and to check in with friends from the hospital who are on a similar schedule.

Dr Berryman introduced us to a very special patient a few years ago who is a phenomenal horn player. It got us thinking so we had to ask the question, “Dr Berryman, after the transplant will Jim be able to play the sax???” He answered, “yeah sure he will!” That was exciting news…

… because Jim couldn’t play it before the transplant. So far no luck, but we remain hopeful.

 And we’re not the only ones… 

Be advised- no animals were harmed or lost (well… not permanently) in the filming of that video. But they absolutely protested the screening of the final motion picture…

so much so that they even recruited a cross-species supporter. I wouldn’t dare cross these picket paws!

Still, when it’s time to take his work-out laps around the house, Jim’s training partners are all in!

When it gets above 27 degrees, we can do this outside ;-). Although I have to admit we did some “party hopping” last night around our sub-freezing neighborhood. We popped in for just a quick “hello” to the small groups gathered at the Woods’ and the Friman’s houses. Jim wore his mask and gloves the whole time as promised, but I swear as he gets to feeling better and better, I am going to need one of those giant hooks they used in vaudeville shows when they wanted to get the clown off the stage. As you all well know it’s not physically possible for Jim to resist engaging when he meets up with a friend.. and EVERYONE he meets is a friend! But day 25 starts in just a few hours, and that will mark one quarter of the way to day 100. Not that everything will suddenly change on that day, but we do look forward to crossing a landmark that allows us to worry a little less. Still, on either side of that landmark we will continue to keep keeping busy enjoying our time and planning for the future. And we will keep saying THANK YOU, and looking forward to opportunities to “pay back” or “pay forward” the gifts of support and love that our family and friends continue provide!

12th Day

On the twelfth day since transplant, my true love gave to me

FIVE hundred cells

Don’t worry, the song ends here! But 500 white blood cells is something to sing about! The numbers are coming up (though some will go down again before they go up for good), and it is clear that the new cells are doing exactly what they are supposed to do. Progress!

Last night we were walking the halls in the wee hours, because the pain of the new bone marrow exploding in growth, which Jim describes as the process of Lou Ferrigno morphing into The Hulk, is better when the pressure is off those persistently productive pelvic bones. The pain comes in these sort of squeezing-like waves that last about 10-30 seconds at a time. So at one point Jim stopped and waited for the moment to pass. I looked back at him, and he was doing this odd breathing panting thing, and I had a flash of deja vu which I couldn’t quite put my finger on. But a few minutes later the words “breathe through it” popped to mind, and it hit me -we were pacing the halls like parents-to-be heading towards the final stages of labor! But HE is the one giving birth, and it is NOT MY FAULT! Still, I kind of feel like the dad… trying to be understanding and useful by offering ice chips or something. Not at all helpful. But the more I think about it, the more I see that he actually is giving birth… to a whole new immune system. Very cool. And thankfully it doesn’t seem to be quite as intense as labor. Plus he gets to take all kinds of good drugs that we moms definitely did NOT get to use to ease the process. Either way, it is a labor of love, the delivery of a new life, and the passageway to a bright future with unlimited potential.

Speaking of weird medical processes (and exiting the topic of sappy Hallmark moments), our little chipmunk Kenz is doing just fine post wisdom tooth removal…

Despite appearances in this lovely moment caught on film by her sister, Kenzie is handling her recovery like a total champ!!! Daddyo’s little acorn falling close to the tree! (I know she’s supposed to be an apple in that analogy, but there is no connection between chipmunks and apples. And acorns fall from trees too.) She and the rest of the “kids” are reveling in the first days of winter break. Soon we will be home to share it with them! In the meantime, we spend the hours between their visits finding new ways to entertain ourselves and the staff.

Holiday spirit is in the air!

Goodnight and THANK YOU, our exceptional family and friends! And goodnight and goodbye, day 12!

 

He’s a 10!

A real 10… with the spokes-models to prove it…

10 days since transplant, and Jim continues to amaze the nurses, doctors, and other patients with the speed and ferocity of his recovery.

This weekend brought a VERY HAPPY fluffy visitor

  

And today brought more energy, more work’n and chillin’, a “Happy New Birthday” sign from the nurses, and visits from Kenzie (OH NO I forgot to take a pic! And tomorrow she will be a wisdom-toothless little chipmunk!), Adam, and Chloe (and her friend Emma!)

  

Today also brought a new and interesting symptom -pain. Jim woke in the middle of the night with a deep pain in his back/pelvis. I know this doesn’t sound very interesting, and I absolutely can’t stand seeing him in pain! But it gets interesting, and he gets excited, when we think about what is causing the pain. Part of it is from Neupogen, which is the drug he started getting (per protocol) on day 8 to inspire production of white blood cells. The drug puts the bone marrow to work. But your bone marrow can’t work unless it is THERE. So the cool thing is that the pain is a sign of the first stages of “engraftment”.

Remember that during the transplant, the stem cells were administered through an IV into his vessels … so what happened next? If they just circulated around like the regular blood cells, they would live the lives of each blood cell type and die a natural death (like we talked about a few days ago). But stem cells are bits of DNA on a mission -they know where they are supposed to go, and they know how to get there. They “swim” their way to the fertile ground in the bone marrow space, and get themselves planted (There is an analogy in here somewhere that includes strong swimmers competing for fertile ground… I think my parents told me about it once upon a time. But I’m not going there in mixed company! And anyway, there is no competition in this circumstance- the fertile bone marrow ground has room for all stem cell swimmers!)

So “engraftment” is the process of those new (“grafted”) cells implanting themselves, going to work, and growing. And they work hard and grow fast, which can’t possibly be comfortable. It’s kind of like in the Harry Potter stories when they magically regrow an arm… but the screaming from behind the locked door tells you that growing a new arm is not a pain-free process. Luckily, growing a new immune system is not as painful as growing a new arm. And also pain meds are good. So on the flip side of some well-managed pain, Jim is experiencing a whole new level of energy today! They say that after a transplant, you see yourself in a whole new way. I think it’s fair to say that we are all seeing things from a new perspective…..

And the one thing that never changes, but continues to grow even faster and MORE ferociously than Jim’s new immune system, is our gratitude for family, friends, modern medicine and its disciples, employers, customers, dogs… I could quite literally go on all day! So I’ll just end with another inadequate – THANK YOU!

Here comes day 11!

 

 

A Visit From St Klink

Twas day 7 since transplant, 

in this Krankenhaus,

the patient asleep 

‘side insomniac spouse.

The fluids were hung

on IVEA with care,

the nursing staff opened

the window to stare.

The transplanted hero

lay snug in his bed,

while visions of cycling

spun in his head.

A busy day healing,

a new knitted cap,

a long day of workouts

with barely a nap.

Then out in the hall

there arose such a clatter,

the patient awoke

to see what was the matter.

It was only a nurse,

slipping in like a flash

to check on his vitals,

give meds from her stash.

Holiday strings

lit the room all a glow,

his body at rest

let the new blood cells grow.

                                              

When what to our wondering

eyes should appear-

Twas Kenzie who traveled

From Arkansas here!

She came feeling nervous,

is daddyo sick?

He awoke and put rest

to her worrying quick.

They smiled and they giggled,

so glad that she came,

made our day

as the other kids all did the same.

 

Now Adam, now Hayden

his Jen, who’s no Vixen,

and Chloe and Hudson

watch Daddyo blitzen-

To the cool courtyard porch!

To the edge of each wall!

Now dash away! Dash away!

Dash away all!

               

The techs try to catch him

before he can fly,

but no obstacle stands

in the way of this guy.

He travels the campus

inside and out too,

and if you light up

makes you sorry you do.

Attitude makes all the difference

-he’s proof!

A positive thinker,

and sometimes a goof.

He lost all his stem cells

and German ones found-

Gave thanks Dr Berryman’s

hanging around!

                           

The premeds were given

and IVs were put;

A new immune system,

his head to his foot.

He sang and he laughed

while he lay on his back,

receiving new cells

that are armed to attack.

His eyes-how they twinkled!

his dimples how merry!

His cheeks were like roses,

his nose like a cherry!

His droll little mouth

was drawn up like a bow,

as he spoke to his stem cells

inspiring them to grow.

 

His smile was so big

that it showed off his teeth,

and the kids smiled back

from their antlers and wreath.

He fought off his symptoms

a yuck feeling belly,

his strength and IVEA

made most patients jelly!

  

Supported by family

and friends and his elf,

Klink networked and traded

and challenged himself!

A wink from his nurses

good health in his head,

we knew that he wouldn’t

spend long in his bed.

He spoke many words

and went straight to his work,

inspiring others

and sharing his perk.

Despite some fatigue

and his long running nose,

o’er each stumbling block

to each challenge he rose.

 

There’s much more ahead

but he smiles with a whistle;

the Klinkhamer way

and his new German gristle.

The love of his family

and friendships so tight,

help him wake every day

With the cure in his sight!

                       

Day 4 Comes to a Close

I don’t think I have to tell you how he is doing tonight, you can see for yourself! But in case the video doesn’t load properly or something, because it appears to be having trouble “processing” -which I can certainly relate to, I will give you the spoiler: He is awesome! So day 4 comes to a close with black bean chili and a blueberry bagel

And a set of squats

     

And an electric menorah for Jim’s “Pipsqueak”… because the reasoning side of my brain insists that the reality of shaking up the entire hospital with a smoke alarm when some dumb blonde lights a candle, is probably not as fun as it sounds.

Happy Day 5, Happy Hannukah, Happy HAPPY! Thank you for YOU!

12 Minutes Till Day 4

I promised a better explanation tonight. Unfortunately I am just about to miss the deadline on my promise. The day got away from me… or maybe I got away from it. Either way, as so often happens, things didn’t go exactly as planned. But I am not complaining – where it really counts, things are going exactly as planned. So this is the end of day 3, and Jim is doing great! By “great” I mean that he is overcoming the expected nausea, indigestion, and schizophrenic bowel behavior, and managing to keep moving and keep his meals where they belong. The meds to control those things are keeping their promise, which means lots of extra zzzzzzzzzs. That’s a good thing -Building a new immune system requires way more rest than Jim’s body is used to getting! There’s the basics… want the rest of the story? I promise it will (hopefully probably) be less long than usual. Actually I take that back… one broken promise is bad enough!

Today, as both expected and promised, Jim’s “counts” began to drop. This means that the number of red blood cells, white blood cells, and platelets circulating in his system is starting fall. This is a good thing. Or, more accurately, this is a necessary thing. Therein lies the missing link in my explanation from the other day. Jim woke up on day one and asked the question, “if I still have all of these blood cells from my own system… is the new immune system going to kill them all?” And the answer is… drumroll please…. sort of. So it works like this:

Cells have a regular life-cycle -every day your oldest cells die, and your system replaces the dead ones with fresh new cells. Every cell type has a different life cycle, so the number of days a cell lives, and the number of new cells of it’s kind you have to make every day varies. When it comes to blood cells, all of the newbies are produced by stem cells in the bone marrow. But even amongst the blood cells there are variations in the cycle. For example, red blood cells live for about 120 days. Every day all of your red blood cells that are around 120 days old will die. But also every day little baby stem cells in your bone marrow are developing and maturing into real functioning cells of all types, and each day your bone marrow magically releases just about exactly the number of red blood cells you need to replace the old ones. Even if something goes wrong, and your red blood cells start dying faster than usual, or you lose a lot of blood because of a wound (or because you are a woman :P) your bone marrow will do it’s best to accommodate the need by working overtime to grow and release replacements as fast as possible. White blood cells, on the other hand, only live 3 or 4 days. But the process is the same… each day the 3 or 4 day old cells die, and each day your bone marrow releases enough white blood cells to replace them. If you have an infection, your bone marrow will ramp up production and release of white blood cells quickly, because those are the ones in charge of fighting the enemy.

Now imagine something destructive, like a chemotherapy drug just for example, got into the stem cells waiting to mature and be released into circulation. When the circulating cells die out on their regular schedule, there would be nothing to replace them with. The body says “WE NEED MORE CELLS!” but the production house remains closed because all of the little stem cell seedlings were zapped by the chemo.

So that is the first half of the story…

Jim got chemotherapy in moderate doses last week. Those drugs made their way into his bone marrow right on schedule. The stem cells in that marrow absorbed the drugs… and tapped out. The drugs exited his system quickly, leaving a path of destroyed stem cells in their wake. This is how we do it (this is how THEY do it, but the song got stuck in my head, and I couldn’t resist). At first the effect is silent, because the circulating cells are still out there doing their thing. But when the circulating cells die off per the usual schedule, the zapped bone marrow simply does NOT step up to the plate and replace those cells. That’s when you notice! Red cells, white cells, platelets… the levels all fall because the “dying” part of the cycle is intact, but the “replacing” part is gone.

Enter the OTHER half of the story in the form of those bags of cells sitting on the counter. Those new baby German cells (does that make them German germ cells?) were not in Jim’s system when the chemotherapy was administered, so they were not affected. They poured in and found their place among the destroyed stem cells in Jim’s bone marrow. And right now they are starting their normal process of ramping up production for release. But it takes stem cells several days to mature even in a normal setting. And these little guys have to figure out how to do it fast in an all new body. Not to mention that they will have their hands full when they find that not ALL of the old stem cells have cleared out. Taking care of the old cells will be a high priority for the new kids on the block. And this is where we encounter that tricky balance I mentioned before -We can’t have the new cells fighting everything they don’t recognize, because that would mean fighting… well… everything. So until they get used to their new surroundings, the docs have to hold them back quite a bit. Immunosuppressive drugs are the defensive weapons of choice. And Jim will be on those for a while.

Let’s sum that up and get to the bottom line: Day 4 has begun. Days 3-4 are where we enter the gap between the old cells dying off and not getting replaced by the old system; and the new stem cells gaining a foot hold, maturing, and stepping out into Jim’s circulation. Real “count recovery” (end of the gap) will happen around day 10. So days 4-10 are when we watch cell counts get low low low, give transfusions of blood and platelets to bridge the gap, and (impatiently) cheer the new system along. It’s also where we stay up obsessively blogging and listening to the patient breathe all night. Oops, no, that’s not a “we” thing. TMI.

As for how the patient feels during that time, well it depends on the patient. I’d say Jim is doing much better than expected, but I expected that so if I said it I’d be cancelling myself out. Or something. Anyway, let’s just say he is doing well enough to further the mission…

Three smokers, 5 legs, and more profanity than I ever heard on the streets of LA (yeah yeah I know I was never really “on the streets” of LA… but valley girls can come up with some surprising profanity when someone like totally messes with them at the mall. Omigawd!)

That really happened! He obviously wasn’t missing any fingers. And yeah that is the no-smoking “on the entire campus” sign planted right next to them.

But don’t worry, Officer Happy Lungs called in his posse and got the problem resolved.

YER OUTA HERE, BUDDY!

AND YOU TOO, MISSY GIRL! You can’t hide behind the giant blue rectangle with a crossed out cigarette in a circle. NEIN! RAUS HIER! (Technically she is already out, so saying “get out” is probably incorrect in any language, but it’s 3am and I can’t get inspired to research a more appropriate phrase)(And also It’s 3am and I must be lonely. I REALLY tried to resist that one, but it’s one of my very favorite songs)

It’s officially day 4! Jim is good, the kids are good, and we are a whole day more grateful for them, for you, for smart and dedicated medical people, and for everything.

Gute Nacht (goodnight!) Sleep tight, and keep the good healthy and loving energy coming Jim’s way. You can’t even imagine what a difference it makes, and how much we both appreciate it! THANK YOU!!!!


                                            


		                                                        

Day 3

Day 3 with new system, and Jim is doing very well! The process is coming along exactly on schedule. I will be back later with a full explanation, but no time now… the patient kicked me out because he wants to show our gratitude to the Baylor staff with chocolate covered pretzels. Orrrr….. Maybe he just wanted some time alone with the nurses 🙄! Either way, I’m off to the kitchen!

 

Day 1

I know you are itching to find out how Jim is feeling on this very first day with his new DNA! It just wouldn’t be the same if I tried to tell you myself…

Want to see it again just to make sure you heard him correctly? You can do that by clicking the curved arrow in the bottom left corner of the YouTube screen above (sorry I can’t control the other crazy stuff that pops up after our video – that’s the price of free posting ;P)

Still a little unclear? Google can translate that:

Jim enjoyed a fantastic night of deep sleep, and is feeling great this morning! After a long walk through the halls and across the bridges of the Baylor campus (complete with a stop for his daily calisthenics), and breakfast of coffee with a lovely blueberry scone, the patient is ready for his morning nap.

Thanks to Jim’s unbelievable strength and phenomenal attitude, the miracle of modern medicine and the amazing doctors and nurses who practice it, and the love and support that he gets from you all, day ONE is off to a fantastic start!

PS I am updating the videos from last night to make them easier to access, so if you didn’t get to watch them, and you want to, you can see them all on the YouTube channel below, or scroll down to see them individually in last night’s post.

https://www.youtube.com/channel/UCTXmc-4iod3zYTEp26VC6XQ/videos

 

All done!

Goodnight 🙂

Es Hat Begonnen!

IT HAS BEGUN!!!!!! We are currently about half way through 1 out of 2 bags of stem cells, and Jim is doing GREAT! He just woke up and reached for the caramel M&Ms before drifting back out on a cloud of Benadryl. We have a few more hours to go, so in the meantime here are answers to some things you never thought to wonder….

  1. What does a brand new immune system look like when it’s sitting on the nurses desk outside of the patient’s room?

Those “BIOHAZARD” bags ARE Jim’s new stem cells! His whole new immune system… his future bone marrow, is laying on the desk waiting for the charge nurse to join the party. Pretty amazing, isn’t it?! To the right you see the nurse’s little window where they can open the shades to peek in and see if we are behaving. And as you can see, “we” are not 😉

2. What is a singing bone marrow transplant patient?

This is a singing bone marrow transplant patient. It’s more impressive on video.

3. What does it look like to get smashed in bed by your wife and 2/5 of your kids during a bone marrow transplant?

Self explanatory.

4. How does the nurse flush a line during a bone marrow transplant?

This is how Nurse Rene flushes the line during a bone marrow transplant. The nurses are awesome around here! The doctor doesn’t even attend the transplant… he doesn’t have to, he already laid the groundwork. And we already know how awesome he is!

6. What happens to the “kids” when they watch a bone marrow transplant?

They either grow a wreath halo with a bow on top, or an antler out of their ear. I think they can handle the complications though… Nurse Chloe and Dr Adam may well be in the drivers’ seats before the next decade is out!

7. Who is Ron?

Ron is another one of the incredible difference makers with an RN on his chest, and a gifted heart inside of it.

8. How did we get to number 8 after only 6 pictures? Hmmmm…. By skipping my A.D.D. meds today, perhaps? Oh well, there are more important things than keeping proper list order at the moment! And in the time it took me to write this, we moved on to bag 2! Jim is halfway done with his bone marrow transplant! Which brings us to the 9th(ish) question…

What does it look like to sleep through the second half of your own bone marrow transplant?

This also happens to be what the aftermath of 50mg of Benadryl and .5mg of Ativan look like!

In case this blog hasn’t answered ALL of your bone marrow transplant questions, feel free to click the links below for real live (and totally non-informative) event videos! I feel like I should tell you to watch at your own risk because these videos contain extreme medical footage and should not be viewed by the feint of heart… but that would just be a lie…

Pre-bone marrow transplant

https://photos.app.goo.gl/Gzk3tSa8lR2us9BZ2

THE bone marrow transplant
Conversing with the incoming cells (after enough Benadryl to sedate a horse)
Thank you so much for being here! If you read this, you are part of Jim’s phenomenal support crew, and we love you!

Waiting for a transplant looks like…

THIS….

The Deutch stemmies are here safely! The Baylor team is “counting them” now…. it takes a while to count to 5,000,000! The nurses are changing shifts in a few minutes, and the night nurse is all ready to hang the cells when they arrive on the floor. IT WILL HAPPEN TONIGHT! But don’t wait up. It’s kind of like the 12th inning in the 7th game of the world series… except that we already know the outcome! WIN! When it’s over I will post the update anyway, just so you can look here in the morning and smile and say “YAY!” I tried to look up YAY in German, but I don’t think there is an appropriate translation 😉

Thank you AGAIN, family and friends, for the love and prayers! They will continue to flow in with the stem cells, creating their magic, all night long!

Guten Nachmittag

Good afternoon 😉

Happy transplant day!!!! See there was no reason for concern… the side effects are beginning to resolve already! Unfortunately they appear to be contagious.

 

The patient is doing great, and the cells are on en route. Assuming no delays, the little stems should be here by around 4 pm. The hospital will attempt to process them quickly and hang the first bag around 5 or 6 pm. Until then it’s time to take a few walks, and relaxen (German for “chill out”). I’ll keep ya’ll posted!

QUICK DATE UPDATE

Jim completed his final treatment yesterday morning –wooo hoo! It seems to have had a slightly odd effect on his appearance. My clinical opinion is that this is probably …. ummm… how do I explain this without getting too scientific …

 

 

 

 

SEASONAL?

 

 

 

 

Really though, my dear deer is having a good, if expectedly sleepy, day of rest and recovery. He is progressing smoothly along the course, as we all knew he would. Based on an update in the donor’s schedule, the precious cargo will land in the US either late Thursday or mid-day Friday, so Dr B will oversee the magical hanging of the IV stem cells on Friday instead of Thursday.

In other words -Transplant day is Friday the 8th instead of the Thursday 7th. James gets an extra day to rest and graze with his own cells before he starts demanding Bratwurst and Spatzle with every meal. But we are keeping March 17th as our 100 day mark – why? because we are the grownups (all evidence to the contrary) and we said so!

We will keep you posted on Friday. In the meantime, thank you family and friends for the love, support, and positive thoughts you keep sending his way -they really do make all the difference!

Happy hump day!

You thought I was kidding…

Nope. I kid you not. He may not have followed directly in the footsteps of Big Jim and Dan, but on the grounds of Baylor University Medical Center, Tobacco Sheriff, James George Klinkhamer, takes his commitment to Protect and Serve VERY SERIOUSLY! He is a man on a mission, and let me tell you he is accomplishing both the transplant -T minus 2 days, and he is doing great! Today is the last treatment!- and the protection of clean air for all, with his own special style…

Observe the approach. It begins with a relatively calm explanation, and clear directions, “This is a smoke free campus, man. Put it out! Now!”

Next come a few choice words … accompanied by corresponding gestures (kids, please don’t look too closely at this one!)… !

This is where the son gets involved. And also where I put the phone down and rush to the scene to provide totally unnecessary backup  .

Moments later the cigarette was out. For good. A job well done.

Later that same day, Officer Healthy Lungs is reveling in his success, and posing for a shot with a divinely artistic testament to his mission. I promise this was not a set up… zoom in and look closely…

 

 NO, not at her!!! At the man to the left. You can’t miss him -there is a GREAT BIG ARROW pointing at him. Yep, that’s right, he is sitting on his walker, puffing away through his nicotine stained beard- And ruining Jim’s clean-air triumph portrait!

You might be able to imagine what came next – RAUCHEN VERBOTEN!!!!! (“No smoking” sounds much more powerful in German, don’t you think?)

 After a few more colorful expressions, including threats of where that cigarette was going if Sargent Smoke-Free caught another whiff from anywhere in a 10 mile radius, the sweet smell of unadulterated fall air was back.

And so I conclude yet again, with infection and Graft vs Host reactions the biggest risks over the next 102 days, I REALLY PITY THE GRAFT (or the infectious agent) that tries to mess with this host! He is ready for the fight – should they be brazen and foolish enough to try.

As for the rest of our universe… Hudson, Chloe, Hayden and Jennifer, and Adam have all been here to visit and keep Daddyo smiling! Kenz had a semi-formal this weekend, and is getting ready to come home for winter break -yay! Hud’s JJ Pearce Basketball team won 2/3 of their tournament games! You can see some great pics of Hud and the team here: https://adamrobb.smugmug.com/. They have another game 12/5 at 5:30 Central Time, and I will be streaming it for Jim (any anyone else) to watch. Let me know if you want the link to tune in to the game!

So all in all things remain relatively mellow… Other than the truly fantastic nurses disturbing Jim’s sleep every few minutes or so to take vitals and such… And other than when I caught the patient trying to escape ….

 “Wait… how did you catch up with me on foot?!”

  

4 days in the hospital. 4 days on the exercise bike. 4 days of clearing the courtyards and walkways from 2nd hand inhalation hazards. 4 days of showing off the IVEA (that fancy IV pole that lets him run circles around the nurses, and that he just happens to sell) and of imploring the nurses to focus on staff and patient safety -because every day in house is an opportunity to network. 4 days closer to a super healthy Klinkenfuture.

Day 5 begins… now.

Playing By The Rules

NOT!

Day 1 in Baylor Krankenhaus, and the renegade patient is already sneaking off on a “field trip”!

  

SOMETIMES YOU JUST NEED A MILKSHAKE!!!!!!

A Quarter Pounder with Cheese also seemed like a good idea on this lovely autumn day- And it was!

The adventure started yesterday. Admission went smoothly, and day 1 of treatment is already behind us. Dr. Berryman, who is Jim’s phenomenal doctor, is on service this month so we get to see him every day in the hospital. He feels like Jim will have very minimal side effects to treatment this week. In fact, he said he thinks this whole process of treatment and transplant through release (December 22 we hope!) will be relatively “boring” for Jim. Here’s how “this process” works:

Jim will get a few days of the drug Fludarabine which Dr B says is a very mild chemo drug. On Dec 4 and 5, Jim will get some Melphalan. That is the chemo drug they used to wipe out Jim’s system with the first transplant. The good news is that this 2 day course is still a much lower total dose than he got last time… and last time he handled it like a champ! December 6th is a day of rest, and December 7th is the actual transplant. The transplant itself is, again, a shockingly simple process of hooking up a bag of baby blood (stem) cells to the IV, and letting them flow in- And SHAZAAM! A whole new set of DNA… meaning, interestingly, that if someone shows up on our doorstep claiming to be a direct Jim Klinkhamer descendant from a prior prior relationship, we will have a very interesting discovery process to unravel. Hmmmm this just occurred to me. But I SERIOUSLY digress! So back to the question: how does this process work? I just gave you the technical basics. If you want the how and why then read on at your own risk… my chronic lack of brevity persists…

Common sense would suggest that to perform a successful transplant you would have to wipe out a persons’ bone marrow to 1. kill the bad cells, and 2. to make room for the new stem cells to settle in and grow their own fresh immune system… kind of like you might use a bunch of chemicals to kill ALL of your weeds and grass before you start a new garden. And once upon a time, the doctors worked under that assumption; protocols included super strong chemotherapy and radiation to kill off the patient’s current system, making a clean and clear spot for the new blood cell garden to take root. It worked, but it was hell on the recipient in the meantime. In fact those protocols were so difficult (and sometimes impossible) to live through, that only the youngest and healthiest patients were candidates. Jim would still have qualified, but luckily he didn’t have to… Because eventually brilliant medical minds discovered that the reason bone marrow transplants from donors worked so well was NOT because the chemo killed the cancer and cleared the grounds. Believe it or not (and I know you will!), donor transplants worked so well because the new healthy stem cells started growing a new healthy immune system, and that new immune system took it upon itself to destroy anything it deemed unacceptable. And cancer cells are DEFINITELY unacceptable! So, essentially, instead of launching garden Armageddon, the docs just had to find a way to till the soil before sprinkling the seeds.

This means that instead of wiping Jim’s system completely out, his transplant doc can give him some relatively mild chemo to “prepare the soil” for the new stem cells to settle in. The transplant itself will be an even smoother drip than last time, because the cells will be fresh from the donor’s system, whereas last time around the cells had to thawed and, well, basically UNpreserved before getting fed back into Jimbo’s veins. Once those hearty German (maybe) stem cells get on board and have some time to grow, they will go to work cleaning up their new environment. And they will actually start the growth and recovery process faster and more easily than Jim’s (not so fresh) own stem cells did in the last transplant.

Of course, those fresh cells might be somewhat alarmed to find that they are no longer in Deutschland, and when they get a good look at the inside of the Klinkhamer physique, they may take it upon themselves to clean up more than the old cancer cells. In fact, they may not fully appreciate their new environment quite as much as we appreciate them. If that happens, they fight back a bit, and we get what is called “graft vs host” or GVD. Jim will start out on some good immunosuppressive drugs to avoid too much of that, which will have the side effect of making him super susceptible to all things germ related- which is why we won’t get to try out that strong-like-bull immune system in crowds for the first 100 days, and which is also why you will find I’ve turned (temporarily) into the kind of crazed germ-a-phobe that makes bubbleifying our world her life’s work. Just ask poor Chloe who suffered the consequences of my snapping when I spied her reaching into Daddyo’s bag of gum. Don’t feel too bad for her though… she ended up with a whole bag of gum to herself ;-).

Well the patient is awake and ready for another walk-about, so I’d better wrap this up. SOMEONE has to make sure he doesn’t get into a physical brawl when he’s scolding the inconsiderate smokers hanging out under the “tobacco free campus” signs in the courtyard -he too has a new (temporary) life’s work!

Thank you family and friends for your awesome support! And also, since Hudson’s JJ Pearce Freshman Red Basketball team has round 2 of the Mesquite tournament tonight, GO MUSTANGS!

Thankful update

Time for a VERY (thankfully) quick update. More details later, but want you all to know the timeline so you don’t have to ask…

Both Jim and his donor are ready to go! Admission day is Thursday, November 30. Jim will have some prep time and some rest time in the hospital (krankenhause!), and will receive his new cells December 7th! Everything is happening as quickly as we hoped it would, and we couldn’t be more grateful! If all goes well, Jim could be released just in time for Christmas at home.

Cool side note about the way the dates worked out- the big landmark after transplant is the 100 day mark. Jim’s transplant is December 7th, which makes 100 days March 17th… Giving us ONE MORE reason to call St Patrick’s Day, Jim’s birthday, AND our wedding anniversary, THE LUCKIEST DAY EVER! If that’s not “a sign”, I don’t know … I don’t even know what I don’t know… It just IS!

 

 

 

Exciting News on the Klinkfront!

Happy hump day, Y’all! This past week in Klinkhaus, GQ and Glamour models Hudson and Chloe strutted their stuff at the JJ Pearce Homecoming Dance; Hayden and Jennifer trekked out to Arkansas to visit some friends, take in a UARK football game, and share a quick moment with Kenzie; Adam got an A on his biology test; And… yeah … that about sums it up.

HA! Just kidding!! Jimbo/Daddyo takes the win again for the biggest and THE BESTEST news of the week! He was released from the hospital on Friday morning early. And I mean EARLY like vault out of bed upon waking, and hunt down the closest nurse to unleash him and set him free with barely enough time in a seated position to grab his vital signs kind of early. Like breakfast in bed AT HOME (as if ;-)) kind of early! They couldn’t have kept him past 8am if they’d tried. But they were too happy for him to try to keep him anyway… and really they were pretty much ready to get ME out of their hair, so it was a plus for all involved! The weekend went well, with a minimum of side effects, and a maximum of good spirits while taking HoCo photos, celebrating In-Com’s grand opening with Shlomo and Ronit and friends, and enjoying a lovely bbq at the Heningsman’s with the kids and the Ochoas.

Today we went to Baylor for Jim’s scheduled follow up, and received some unexpected news. As I re-read our post from last week, it occurs to me to wonder why the news came as a surprise to us both. But then, could anyone ever actually be ready to hear the news that someone on the other side of the world who doesn’t have any idea who or even where, we are, and who shares nothing at all with us (that is nothing EXCEPT totally perfectly matched with Jim’s HLA antigen genetics!) is ready to take a few weeks out of his life, a chunk out of his energy, and a temporary piece out of his very being, to fill the gap in ours?

Translation of my rambling: THEY FOUND A PERFECTLY MATCHED DONOR! He is a 49 year old guy (yup, kinda old like us, but with 49 years proven healthy bone marrow) in Germany. He may be German or he may be any other nationality. All we know is that he lives there. Still, we might take to stomping our feet and saying “Das ist mir Wurst” when we are annoyed that they forgot to bring Jim’s Lemon Orzo soup on the Krankenhaus (hospital) lunch tray. That means, “I don’t care anyway!” Well … technically it means “That’s sausage to me”, but we might as well get a jump on the dialect!

But I digress- back to the details. The next steps go like this: Monday Jim gets a PET scan, echo-cardiogram, kidney and liver blood and urine tests etc… all of which he passed with flying colors a few weeks ago. When the insurance company is satisfied with the previously proven perfection of his personal perfusion pumps’ prowess, he is deemed good to go. Our friend in Deutschland gets a few more blood tests for obscure things that he will never have heard of. Then he is deemed good to go. And then Dr Berryman officially requests the transplant. Assuming all goes well, we will check in to the hospital in the beginning of December. Jim will get some drugs to diminish (but not totally destroy) his bone marrow, in preparation for the new cells. At the same time, our angel in Germany will get a few days of drugs to increase his bone marrow production, followed by a day or 2 or 3 of laying in bed for a few hours at a time while they pull his blood into a machine, filter out the stem cells, and put the blood back in. He will be dragging a bit for the next few days, but recovery should be quick, even at the advanced age of 49. Next, some ultra-specialized transportation superheroes (or, quite possibly by then, an Amazon drone) will speed the stem cells across the globe to the Baylor Krankenhaus, where they will be hung on Jim’s IV pole and emptied into his veins just like any other (supercharged and life-saving) IV drip. And, voila! A new immune system is born! And then begins Dr Berryman’s and Jim’s tricky work of allowing the new bone marrow to plant itself and grow anew while controlling the fresh immune system enough to avoid too much graft vs. host effect. A few weeks to months in the hospital, a few more bubble-boy-ish months at home, and das Gelingen! I think that means “success”, but don’t take my word for it, Mein Deutch ist unter aller Sau. (When I wrote that, I thought I was saying something like “my German is very bad” but apparently it translates back to “My German is under all pig”). In a year we will be allowed to reach out to our donor through the registry. If he chooses to reply, we may have to put some serious work into this whole language thing. In the mean time we will be sending a million universal positive vibes in the direction of Germany. A pretty cool side note – more than 50% of the eligible population in Germany is represented in the donor registry! This is compared to the less than 10% of eligible Americans listed in the US registry. We have some work to do there as well! But there will be time for that later.

Needless to say, we were, are, and will continue to be, something that we almost never are (or at least almost never admit to) -totally overwhelmed. There are simply no words to express the gratitude, joy, and awe that is filling our hearts right now. I fear I sound like a broken record… Should we be used to this feeling by now? We never will be. What else is there to say right now? If you are reading this, you are among the blessings that we count every day and night so….. THANK YOU! And THAT actually does sum it up – for now.

 

Us with the amazing Dr Berryman! Somehow he finds a way to perform medical miracles while keeping up with his intense schedule of marathons and bike and hike expeditions -all to raise money for the MMRF (Multiple Myeloma Research Foundation). Saving lives 24/7 ALL IN!

Hottie Hudman with his date, the beautiful Cleo Slaughter

Chloe and her gorgeous bestie (aka our other daughter), Alex Segal

 

New beginnings

Hi Y’all, this is Jim’s (semi) friendly blog-jacker here. Jim has plenty to say so I promise to give his blog back after a “quick” update. It has been a time of new beginnings in Klinkville… Hudson started highschool, Chloe took over as big-sister-in-residence, Kenzie launched into UARK and ADPi life, Hayden stepped up to the plate to face life challenges with extreme grace, Adam left the desert behind to spend some time in the flatlands of Dallas, and Jim entered a new phase on the journey back to a body of perfect health worthy of his stellar mindset and attitude. Most of you know most of the details by now, but here it is in an nutshell (on steroids):

Myeloma has been pretty much under control over these past few years, but Jim started feeling kind of crappy a few months ago. All of his blood tests showed he was still in remission. Eventually he felt worse and developed a fever so the doc admitted him to find an answer. It started with 8 days “good news, it IS NOT…” You can fill in the blank here with everything from fungal infection of the toenails (he may be the only athlete who doesn’t have that!), through the GI system (up and down), the lungs (in and out), the endocrine system (apparently fixed), the heart (we all knew he had a great one of those), and up through the brain (leaving him with proud photographic evidence of “perfection” in this area). And no infectious disease known to person-kind (or animal-kind for that matter) exists in this man’s body. So Dr Berryman did another bone marrow biopsy looking for a NOT Myeloma blood disorder. And it just so happens that our Mr Klinkhamer is one of the less than 1% of patients who gets a return of Myeloma without evidence of the usual blood markers. I guess I shouldn’t be surprised. Jim is incredibly strong and, let’s face it, incredibly stubborn. So we took his bone marrow out, convinced ourselves that we beat it into submission, and put it back. Did we REALLY expect anything he produced to be less stubborn than the man himself?!

Luckily his recalcitrant bone marrow (coincidental pun) wasn’t nearly as strong as the rest of him, so Jim’s bones and organs stayed safe and sound through the relapse.

Upon making the diagnosis, Dr Berryman launched his offense with the first of two 4 day courses of meds in the hospital, and Jim emerged like the champ that he is. A follow up biopsy confirmed an amazing response -remission achieved! After a couple of weeks of recovery, and a couple more of feeling great and conquering the rest of the universe Klinkhamer style, we are back at Baylor for the second round. Dr B expects this round to go even more smoothly than the first, given the fact that Jim is starting from a much better place. I expect the same as I stand awkwardly by while my guy basically cartwheels into the hospital today with a level of anticipatory joy that I’m quite sure is unique to this unit. I assure you, no hospital employee that crosses his path will escape unaffected -it’s a good thing :-D.

This round will confirm remission. But Jim was never one to settle, and this adventure is no exception. Based on Jim’s age, health, lifestyle, and immense inner strength, Dr Berryman is recommending a donor transplant… because that is the only way to CURE Myeloma. It isn’t ever used as a first course of action in Myeloma because the disease usually strikes the elderly, and is often generally manageable for the remaining years. But Jim is not elderly, and he is most definitely strong enough to achieve a fresh start with a new and healthy immune system.

Of course there are meaningful risks. Since he will get a new immune system, we don’t have to worry about Jim’s old immune system rejecting the transplant. Infection is the biggest risk, especially for the first 100 days. So we will spend at least 1/3 of that time in the hospital. And there will be several months of holding down the new immune system to avoid graft vs host disease. I don’t lose any sleep over that one though – I pity the graft that tries to fight this host! At some point the new immune system will settle in, and chances are very good that Myeloma will be in our rear view mirror.

The first step in the process is finding a donor. The “ideal” donor would be a male (their bone marrow is more productive) between 18 and 30 years old (duh), and would be a perfect match based on 12 genetic HLA antigens. Dr Berryman put Jim’s HLA typing into the registry, and came back with 273 potential matches! With that in mind, Dr B is quite confident that there will be a perfect match for Jim. Now starts the process of narrowing the field. If all goes as planned, the transplant will happen in early December.

In the meantime, we are incredibly humbled by, and appreciative for, everyone who reached out and offered to donate and to help in any and every way possible! Please please please go to bethematch.org and put your DNA in the registry! You may get the chance to save a life -even if you aren’t a 20 year old male!

THANK YOU SO MUCH! We have the most incredible family and friends on the face of the earth!

We are feeling awfully grateful and excited about the future. We know it won’t be an easy time, but the landscape of this struggle will look beautiful in our rear-view mirror!

And that, in the over-inflated nutshell, is where we are at.  We are looking forward to …. Well… a whole lot more of continuing to look forward! And to many more new beginnings!

Thank you again, dear wonderful family and friends! We will keep you posted and included on the journey!