Updates these days are few and far between as Will still remains in a critical place and all the meds, treatments, appointments, infusions, dressing changes, bloody noses, swelling, etc… all pretty much remains the same as it was during our last update. 

The biggest change is probably our successful weaning off of the steroids which means his GVHD in his stomach is at least under control enough to not be causing him any more issues.  We don’t really have any way of knowing short of not seeing any symptoms since its not exactly easy to look at the inside of your stomach but so far so good.  Our hope is that we don’t see any flare ups as we continue to gradually wean him from other meds going forward. 

The downside, and stop me if you have heard this one I know we have!, is that after being on steroids for so long his adrenal gland has likely gotten out of shape and now we have to give him a hydrocortisone pill twice a day to balance him out.  That’s right, take your right pill out, put your left pill in, do the hokey pokey and your turn yourself around! 

He has also started on a rather large phosphate pill that he takes twice a day but the end goal with that one is the near term ceasing of his overnight IV liquids as soon as next week so he will take it.  Lastly he is also taking four new vitamins/calcium supplements.  So overall the number of pills he takes each day has probably increased but we are hopeful in the near future we might be able to reverse that back to the right direction, very, very slowly as with all things.

Without any other real material updates I thought maybe I would do a little “day in the life” journal so everyone can get a little glimpse into what some of our days are looking like these days…

3:03 AM – Get woken up by old man bladder challenges.  Sleeping is a young man’s game but they don’t want it.  Isn’t it ironic!  Don’t you think?  ITS LIKE RAAAAAAAAAIIIIINNNN!!!!

3:07 AM – Can’t find earbud…

3:09 AM – Accidentally wake Kim up while trying to find said earbud.

3:11 AM – Consider printing out Milk Cartons with “have you seen this earbud” on the side. 

3:14 AM – Finally find earbud on the floor in a spot I already checked, I suspect foul play but I’m too tired to look into it.  I start a podcast and try to get back to sleep. 

4:45 AM – Kim’s alarm goes off because its clinic/treatment day.  She gets up and hops in the shower.

5:00 AM – My alarm goes off because I guess it takes me less time to get ready or something.  I hop in the shower too.  Not looking for sympathy here, we get up every school day at 5:00 to get Zach up and moving so this isn’t unique to clinic day.  Doesn’t mean we like it!

5:15 AM – Kim goes into get Zach up but they have a sore throat this morning and need to stay home.  Now we have to keep our guard up with a bug going through the house since Will still doesn’t have a functioning immune system.  Just part of this life of ours right now. 

5:20 AM – “Get dressed, put on my nike airs, comb my hairs, go upstairs” – bonus points for the deep cut if anyone knows the song.  Seriously though after a grueling 10 minutes of fighting with my cowlick I plaster that bad boy down with some pomade and I’m ready to face the world or something.

5:23 AM – Pack up the ever present back pack that is a permanent fixture by my nightstand and functions as my “go bag”.  I’m like Jason Bourne without the memory loss, spy skills, passports, guns and appetite for violence.  On second thought I’m getting old so I might reconsider the memory loss part.

5:30 AM – Feed the greedy cats their breakfast after Kim manages to find Cola and Mushi who apparently snuck outside at some point last night.  We have three cats (Mushi, Cola and Pepsi) and yes they rule our lives.      

5:45 AM – Let Roxy out of her kennel that we keep her in while the cats eat so she doesn’t steal their food.  Roxy is our ever loving, ever fearful, ever standing in front of us black lab but we are pretty sure she actually belongs to Grandpa and Grandma J

5:47 AM – Start grabbing Will’s supplies to unhook him from his IV fluids and begin the process; (deep breath in)  Stop his pump, grab the red line from his broviac, rip open alcohol wipe with other hand, disconnect fluid line, wrap and clean the open end of the microclave with the alcohol wipe, take your free hand and unscrew the lid from a saline syringe that you hopefully remembered to remove from its package prior to starting, push up the syringe a little to get the air out, connect to his line and give five pumps of saline, grab second alcohol wipe with free hand, disconnect syringe and wrap/clean the open end of the microclave with the alcohol wipe, grab the heparin syringe with your free hand that you hopefully remembered to remove from its package prior to starting, realize that you didn’t back it off to break the seal before you started, muster all of your superhuman strength with one hand to accomplish the task and get a hand cramp, feel a satisfying pop, remove the lid (with the same hand since your other hand is still holding the alcohol wipe over the open end of the microclave), push the syringe up to get the air out, connect to the line and give three or four pumps of heparin (not heroin) to “heplock” the line.  Remove syringe and screw on a blue alcohol cap to close the microclave.  Drip several drops of liquid on Will in the process without fail.  Repeat everything with his white line…get so good after months of this process that you can do it without waking Will up!

5:57 AM – Ask Will to use the bathroom and brush his teeth and refrain from wanting to pinch his swollen little cheeks!  The good news is that the swelling is starting to very, very slowly go down.  He’s starting to get dimples when he smiles.  We’ll take it. 

6:01 AM – Thank Kim that she had me get all of Will’s medications together last night and that I don’t need to take any time to do that this morning.  Thank Kim again for a million other things she doesn’t get thanked enough for. 

6:08 AM – Go back in and see that Will is still in bed, but at least he is awake.  Ask him to get up again and this time wait for him to get up J

6:10 AM – Quick bio break for dad!

6:20 AM – Okay not so quick.  Now we head downstairs to fill our big dumb Stanley cups with Diet Coke, the breakfast of champions for groggy parents who don’t drink coffee.  Side note, I’m almost embarrassed now to be using Stanley cups with how trendy they have gotten.  I’m practically at the level of a Kansas City Taylor Swifty fan or something but we have been rocking the Stanley cups for years now so back off. 

6:26 AM – Will makes his way down stairs and we get his standard uniform of crocs, jacket and Carhartt beanie (Thanks again Aunt Janalee) on. 

6:28 AM – Check traffic and see that its showing 1 hour and 2 minutes…ugggg….

6:31 AM – Say goodbye to sad dog and tell her she can’t come with.  Haul our dueling go bags out into the car, try not to throw out our backs in the process and head for the hospital.

6:35 – 7:30 AM – Sit in bumper to bumper traffic, think about the meaning of life and stuff, watch the sunrise but I already posted about that.

7:31 AM – Beat estimated travel time by at least five whole minutes.  Take that Google Maps!  You don’t know me! 

7:32 AM– Park and head into the hospital to check in.

7:35 AM – Hit our favorite children’s hospital cafeteria for a quick bite to eat.  This usually is a double chocolate chip muffin for Will. 

7:50 AM – Arrive early for our 7:55 AM check in time.  I was raised that if you aren’t five minutes early you are late!

7:51 AM – The workers at the CCBD clinic recognize us because we are here so often and automatically check us in when we arrive.  Perks you never want to have!

8:15 AM – Get called back for vitals and then labs. 

8:32 AM – Head straight to infusion (which seems to baffle some of the workers every time we do it) to get started on his Eculizumab.  This is the medicine we come into the clinic for twice a week to get via central line to counter his TMA.  The doctors will come meet with us in infusion which is nice so we don’t have to keep bouncing rooms around and ideally is more efficient as we can kill two birds with one stone.

8:38 AM – Pull out work laptop and start answering emails.  I should share that this week our company is holding their annual sales meeting and for the second year in a row I have elected to stay home to be available for Will.  I hope everyone has a great week and tries not to miss me too much, but I know they will… J

9:15 AM – Nurse comes in with the Eculizumab to get that started.  Last Friday we had to wait for almost three hours for pharmacy to send up his treatment.  Today it was barely 30 minutes.  No labs yet back to know if he needs additional treatment but he’s had a couple of bloody noses over the last two days so we are expecting something. 

9:20 AM – While will receives his Eculizumab we start the ritual, ceremonial administering of the morning meds.  Typically this would start at 8:00 AM but on clinic days we have to wait until after labs for one of his meds so usually by the time we get situated it’s a little later.  When we first started this whole pill process last October it would take Will hours to take his pills as he tried to keep everything down and not throw up.  Nowadays it still takes…well it still takes quite a while in the morning as he gets distracted easily or something.  He does much better on his nighttime meds for reasons that only make sense to him.  Pepsi is his beverage of choice when he takes his pills. 

9:30 AM – Our regular BMT/Clinic nurse comes in to review meds and ask Will several standard questions to get a sense for how he is doing.  I’m in awe every Tuesday when we go through this that his dozens of meds and doses are burned into my brain. 

9:32 AM – Will’s platelets are 25 today.  Possibly too high to give him cells but we ask nicely if they might consider doing it anyway.  The way things have been going it will make the next two days pretty risky if we don’t.  She will ask the doctor and see.

9:32 – 10:00 AM – Infusion underway.  We work, read, watch videos, play games, etc… to pass the time while we are in infusion.  My only wish is that the chairs for parents were more comfortable and reclined, okay okay, my two wishes are for Will to be better and for the chairs to recline in infusion. 

10:04 AM – Will finishes off his pills.  44 minutes, we’ll take it!

10:16 AM – Nurse comes in and tells us yes to platelets but no to IVIG

10:20 AM – Wrapping up Eculizumbab but still waiting to see the Doctor. 

10:21 AM – Platelets today means another hour or two on or visit time today depending on how long it takes to send them up from pharmacy. 

10:22 AM – Speaking of Doctors, Dr. Sinno in the house with a special guest appearance by Resident Rotem (can’t remember her last name sorry)!  She was one of the first people we saw in the CCBD clinic way back when we started this whole thing as she was working on the blood side before we knew what any of this was.  She happens to be doing a rotation on the BMT team this month.  We are seeing her again and Will’s platelets are back where we started at.  Talk about Déjà vu.  If we have to go back a year can I be a year younger?  Side note, shout out goes out to the whole BMT team of doctors (Dr. Miller, Dr. Adams, Dr. Dana, Dr. Alex, Dr. Sinno) and the countless number of assisting doctors, nurse practitioners, nurses, lab techs, etc… for the world class care they are giving William.

10:45 AM – Dr. Sinno shared that overall while things are progressing with Will, his TMA counts are not where they would like them to be and usually they are seeing improvements by now this far into the treatment.  They are continuing to monitor and have several more arrows in their quiver, one of which is admittance back to the seventh floor for a few days of more frequent treatment which we are hoping to avoid.  We should hear more during our Friday visit but Will definitely isn’t out of the woods on this one and the low platelets will remain a concern. Not the news we wanted to hear but there are also positives as well.  A lot of his other numbers are looking good.  We might be able to take him off his fluids next week if all goes well, etc…  Like most of this process, you take the good with the bad and take comfort in knowing that you have a plan forward and many, many options if that doesn’t go like you want it to. 

10:50 AM – Platelets arrive and get started through his central line.  Dr. Sinno confirmed that no IVIG today and no blood since those numbers are still okay.  It’s a constant monitoring process though.  Hopefully we can be out of here by noon. 

11:31 AM – Speaking of big dumb Stanley cups, I just overheard some of the nurses talking about the limited edition red target versions that broke the world a couple of weeks ago.  Apparently there are people paying $10 on facebook marketplace to take a picture with one to pretend like they have one for…reasons I guess…before we proceed you need to reread that sentence and realize that Trump Vs Biden may not be the biggest concern we are facing as a country right now.

11:33 AM – Will’s ever high heart rate has raised some concerns yet again and now we have to wait another 30 minutes to retake it to see if it goes down.  This is one of those, depends on the nurse things.  His heart rate is always high.  I think he’s part bird or something.  I’m going to quickly teach him the “serenity now” approach from Seinfeld to see if that will help.  This might be the sort of thing that would make a person mad if it wasn’t for the fact that its the type of thing we have been juggling for the last year +  Like duck off a waters back baby…ummm…I think maybe I didn’t get enough sleep last night.

11:39 AM – Waiting…work, reading, watching, etc…currently monitoring Diet Coke levels in addition to Will’s heart rate. 

12:03 PM – Serenity now has failed.  Heart rate is still 140-ish.  Nurse  stepping out to talk to doctor and said she would be back in a minute.

12:23 PM – One minute = twenty minutes, still waiting. 

12:30 PM – Nurse popped back in, their main concern is fever.  He doesn’t have one.  She took his vitals again.  It looks a bit better but still high, she popped out to check with doctors and we wait some more.

12:45 PM – Finally receive the green light to go as long as we promise to monitor him for fevers which we always are but there you have it.

1:15 PM – Arrive home, eat lunch, get going on school…just kidding 

1:17 PM – Giving up on school for today because we were at the hospital so long.  Homeschooling is a blessing through all of this with the flexibility.  I know this is an area Kim can get down on herself with but I’m honestly amazed at how much Will is still learning despite everything he is going through.  I guarantee he’s ahead of his peers because of the custom approach we can take with him and that is because of Kim and Will.  I wish I could take some credit for it but Principal Anderson just sits in his office and works on his other job most of the time J

2:00 PM – Will falls asleep in the chair in our room for an afternoon nap.   

4:44 PM – Finishing up work for the day.  Realized Will slept through his 3:00 meds but he takes them now and washes them down with wild berry skittles, one of his favorite treats these days along with sour gummy worms, Reese’s peanut butter cups and Hershey’s chocolate bars. 

5:05 PM – Open the mail which today means four medical bills; three lab bills and a quite sizable bill from home health for the rental of his IV stand, pump and fluids.  Thank goodness for the generosity of everyone donating to COTA so we can cover these bills as well as other treatment related expenses like mileage to and from the hospital and food needs. 

5:30 PM – Time for dinner.  For Will tonight that means leftover Papa Johns Pizza.  I don’t think I’ve mentioned this on the blog and its probably common knowledge but we have to be super careful with food preparation for Will because of his suppressed immune system.  Basically if he caught something like salmonella his body wouldn’t be able to fight it off.  Thankfully we are a family who has always taken food preparation very seriously so that means little change for the most part other than not taking any silly risks, i.e. not eating food off the floor.  That said, we did find out last month that he tested positive for Shiga which is a rare version of E.coli.  No idea where that came from and it could have been from anywhere but we did get an in depth interview with the Arizona Department of Health last month since he was basically patient 0 and they needed to track if it was an outbreak.  Oddly enough he showed no symptoms of Shiga and after a course of no nonsense antibiotics he seems to be fine now.  Feels like maybe we dogged a bullet there. 

6:30 PM – With Zach sick today and the rest of us exhausted (infusion days always take it out of us) we settle in for an early night.  Will continues to hang out in our room with us which he would probably do 24/7 if we let him.  We have a big oversized chair at the foot of our bed that he has pretty much commandeered at this point. 

8:00 PM – Evening med time.  We head into the bathroom to count out the dozen or so nighttime pills as well as pull his fluids out of the fridge so they can warm up a little before we hook him up around nine. 

8:35 PM – Will has finished with his evening meds.  I couldn’t have imagined a couple of months ago being in position where he would just take his pills without a fight but that is something we can be thankful of now. 

9:18 PM – Will begrudgingly agrees to head into his room to be hooked up.  We change the batteries on his pump, hang his bag of fluids and get out the saline and alcohol wipes for an encore of this morning’s performance but on a quicker, smaller scale.  He gets hooked up and after three loud beeps the pump begins humming away, pushing out a pre defined amount of fluids and key vitamins and minerals that he has been low on.  This was a process that seemed so daunting when we first left the hospital last October but now seems old hat.  He is hooked up every night for ten hours for fluids, usually from around 9:00 PM to 7:00 AM but we do that earlier on nights before known hospital visits and sometimes later on the weekends when he wants to stay up and we want to attempt to sleep in the next day. 

10:02 PM – Take one more look at the clock, put in my earbud and attempt to drift off, hoping tonight is restful and not filled with dreams.  Our dreams could probably fill a whole book and a therapist could, and has, have a field day with them I’m sure.  We sadly have a lot of unresolved trauma in our little family.  We do a great job of juggling it among our little unit with a lot of love towards one another and a little grace.  We talk openly and transparently about what we have been through and where we are going.  I’ve said it before but our little family has been forged through the fires of adversity and trauma and is bonded in what feels like inseparable bonds.  We all are the only ones who know exactly what we are going through and all of us have each others back for better or worse.  It’s a safe space where we can all feel loved and not judged and I wouldn’t have it any other way.  All we have been through sucks, but there is a real silver lining and its our unyielding love and respect for each other that carry us through each day.

With that we drift off to sleep in preparation for a new day and know that each one brings an inch forwards towards healing and Will fully recovering from this challenge.  The time flies and one day we will look back at this as a distant memory, probably amazed that he even went through it all.  Such is life.

3:00 AM tomorrow – Get woken up by old man bladder challenges and start looking for missing earbud again.