He went in to the ER 3 weeks ago not feeling well. After a battery of tests (mri/ct scans) they found a "mass" in his throat/upper chest. Its generally a pretty bad situation when the doctor says they found a mass. We've suspected a "not good" diagnosis was in the works. Last Friday we went in for a biopsy and expected to have the lab results on Monday but never heard anything. He was over at my place tonight and happened to log in to the web portal for the hospital and his charts had been updated with the lab results tonight.

Lab results look like t-lymphoblastic lymphoma/leukemia. Fuckin hell. I wouldnt say its a huge bombshell, more a confirmation of what we had all feared to begin with. Before the bioposy we had a consultation with the doctor who said its most likely lymphoma or hopefully thynoma. Looks like we struck out and got lymphoma.

Not sure the severity of it though, we'll find that out tomorrow at the doctor. Good news is hes 23 so hes young which should help with the long fight ahead. Bad news is....hes 23 and I'm too goddamned young to have to deal with some shit like this. Happy fuckin New Year. Went to the gym tonight to work out some frustrations. Now I'm going to pour a stiff fuckin drink.

Update 1/10 - Went to the Cancer Center today to meet with the doctor. He has a reputation for being focused and honest. Oof. He definitely was honest and didnt sugar coat anything. Zak has T-ALL, T-cell acute lymphoblastic leukemia. Hes been having double vision, so theres concerns it may have spread to his brain. We'll go in tomorrow to get a bone marrow sample, then later this week to get a spinal and insert a port that they will use to give the chemo. Chances are they'll start the chemo tomorrow. While it seems the odds are, at least for the moment, in his favor its definitely not by a comfortable margin by any stretch. I told him he better buckle up, its going to be a hell of a ride and we're going to kick some cancer ass.

Update 1/12 - I dont want to jinx it but I'd be lying to say I'm not on cloud 9 for the moment. Went to Fred Hutch (Seattle University Cancer Center) in Seattle this afternoon. This whole damn facility is built for one explicit purpose, to fight cancer.  I went in thinking I'll settle for an "only bad" prognosis. My understanding of cancer, traditional cancer at least, is that when you add the phrase "and its spread"....It means its bad. Really bad. On Wednesday the local cancer doctor had said it was a rare, aggressive cancer which may have spread to his brain. He did mention it is treatable but that big unknown of "its spread"....Man, its been a rough few days.

The doctor today however, you could tell the entirety of his existence is to treat the patient and get the best possible outcome. I mean, this guy lives to spit in the face of cancer and then proceed to kill it with extreme prejudice. He came in and asked what our understanding of the situation was. My son summed it up as "I have a rare, aggressive cancer thats spread to my brain and it is treatable". He responded quite simply with "All of that is true". He said this in such a confident,  matter of fact way that I instantly felt my anxiety start to fade. No reservations, no hesitation. Just a matter of fact statement that yes, all of this is true.

He then went on to really break down the complex situation into laymans terms. He spelled out how t cells normally develop, how they went astray in this case, where they accumulate and how that led to the mass, how and why it spreads. He talked about treatments both for kids and adults (And young adults). He talked about the history of treatments, how 50 years ago this was a near death sentence, how they first had adult and pediatric treatments, how thats changed over time and the pediatric treatments can actually be used for young adults. It felt like the entire reason that guy was in this building was to see us. He answered every question. He detailed out everything. Never rushed, didnt feel like we were "just another patient today". Fucking amazing. He said that we can confidently go in using a pediatric treatment model which has a 80-90% success rate. He said not only is this oftentimes treatable, but in some cases curable.

I asked him a very direct question as to whether he believes Zak falls in the fairway of treatment outcomes, or if he has reason to believe this one is different or an outlier to the norm. He said without hesitation that as of now he has no reason to believe this case is in any way outside the fairway and norm of the cases he manages. Given the likely possibility its spread to the brain there will be additional treatment options which will be needed, but nothing should be too far out of the norm.

Next appointment is this Sunday. I'll take Zak back to the Cancer Center and he'll be there for the next 4 to 5 days. They will insert his port and do a spinal tap to get a base line for the cancer in his brain. Then they'll start the chemo and the war is on. I told my son its a war. He'll win some battles, he'll lose some battles. Thats fine. Win the war, thats what its all about. I had expected 1 trip a week to Seattle. Looks like he'll be going 2 to 3 times a week. Fortunately we have a strong support network so drivers wont be a problem, but its going to be a hell of a few months thats for sure.

I know theres no guarantees in life, and even less so when dealing with cancer. And I sure as fuck dont want to jinx it, since that'd be my damned luck. But for the moment....in the now....I can finally breath a little easier.

Thank you to everyone for your words, thoughts and prayers. Special thanks to @NH556 for the membership, I'll appreciate those green arrows over the next few months! Thank you to @Beef__Supreme and @OKnativeson for the IMs, and @AJ_Dual and @Kits4 for the advice.






UPDATE 1/15 - Well....Off to some sort of a start but not quite the expected one. We went to the University of Washington medical center Sunday. The plan was get checked in, run a CT scan to check mass size then install a port or pic depending on the size of the mass. From there take a seat, put on the seatbelt and leave the station on the chemo train.

But, Zak loves to not follow the fucking plan. We get checked in to the room and as they are going through the baseline vitals the nurse says his heart rate is high but its expected as theres some stress here. She listens, makes a funny face and asks if he has dizziness or shortness of breath. Nope, all green across the board. She mentions the heart sounds a bit erratic, then says ok give me a minute. Walks out and comes back a few moments later with another in tow. The PA takes a listen and gets concerned. Come to find out, he was in atrial fibrillation.

PA says ok lets set an IV, prep for chest scan then get meds for his heart. Then she hooks up the EKG machine and looks at the printout. "Cancel the CT scan, get the IV and get heart meds going". Just getting an IV set was a shitshow, involving 3 different people and 4 attempts before they finally got it on the 4th go. That wasnt all their fault, he has veins that roll and they also collapsed a few times on them. Nothing went right Sunday night.

They eventually did get things under control last night, but the whole heart shenanigans delayed the chest scan and chemo. They did the chest scan today while I was there, and I expect chemo will be flowing tomorrow when I get down there. Of course, to always keep it entertaining.... When they went to give the contrast on the chest scan the IV blew out. They had a different lady come in today to set another IV and that lady was good. Nailed it right out of the gate and off he went for the chest scan with contrast. Just needs to get the xrays reviewed then hopefully its back to the original plan. But the arm where the IV blew is puffed up like Popeyes.

He was in good enough spirits when I left this evening. I'll say this, he has always been the definition of stoic. Hes always just taken things in stride, and this is no different. I told him that I had really hoped the check in would be low key and stress free before we start this journey. Nope, what fun would that be? I'm convinced the stress of all this shit is going to be the end of me.

But, both yesterday and today we were blessed with one hell of a view of Rainer.

Home away from home



One of these aint like the other



Leukemia, 4 IVs, afib..Still smiles. I dare say hes stronger than I am.



I wont say I'm a strongly religious man by any stretch, but I'll find comfort where I can these days




UPDATE 2/10 - I had intended to wait until next week for an update as we meet with his doctor next Friday to review his case. But I'm not sure when this might fall off into the archives! Zak has been getting chemo once a week which started on Jan 22nd. He did get some chemo the week before that while admitted into the hospital but since then its been outpatient treatment. While its never been what I would call routine, we've always finished all the scheduled treatments. Whether its been minor reactions to the drugs, delays in getting the drugs, adding more drugs after reviewing blood work...Whatever it is, it seems the days never go quite as scheduled. The first round of the lumbar puncture it took them 5 attempts before they managed to get it! He was laying down for the first 4 which they couldnt get set. As soon as he sat up bam, they hit it no problem. So, hes a sit up kinda guy for spinal taps.

That said, things have really been going in a positive direction. Early on he had to wear an eye patch due to double vision from the cancer in his brain. As of last week there was no detected cancer in his brain. In fact just a few days after the first lumbar puncture to administer chemo to his brain he noticed his vision clearing up. While there have been bumps in the road it definitely feels like there is a light at the end of an admittedly long tunnel.

The chemo treatment is not at all what I expected. I thought it would be a quick shot, then he would immediately feel like hell. Not at all. The first outpatient treatment was 3 different chemo treatments. The first was scheduled for 2 hours. The nurse said its pretty common to see reactions to it however, and of course he did. His reaction was minor but man they were in there with an army so I have a feeling that chemo can have some nasty reactions. At one point they had 4 people in the room monitoring him or administering drugs. They followed that treatment up with 2 more, one taking 15 minutes and another taking 10 minutes. Zak feels fine walking out after the treatment, but give it 8 to 12 hours and its a whole different story. Hes really tired and just feels drained and sleeps a lot. That lasts for 2 or 3 days before he starts to feel better. By the 4th or 5th day hes back to his usual self.

Next week is really going to be when we get a clear picture on how this is all going though. They will do a CT scan to check the size of the mass as well as due a full set of labs. Once they review that they will decide the next course of treatment. But so far it feels like we're on a good trajectory which obviously is fucking fantastic news. Rather than a boring picture from the hopsital....This came up on my Facebook Timeline. 7 years ago to the day we were swimming in a pool to pass the pool test for diving certification.

Brother you aint kidding. Fuck. Cancer. That shit hits on a whole new level now.

Prayers

Prayers out for you and him. He will be fine Joker.

Saying a prayer… together you’ll kick its ass.

Best wishes for your son and family. Don't hesitate to ask for help if you need it. Arf can pull anything together, fast.

Damn bro. Sucks to hear that

I’m praying for your family, OP.

I lost my 21 yo daughter just over a year ago. I know how scary this feels. Hug your child every day and thank God for every day you have with them. If our prayers are answered, you’ll be joking about this with them in 30 years. I’m sure of it…

You and your son are in our prayers.

Prayers for your boy OP.

Prayers sent

Prayers sent.

Good thoughts and prayers brother

Prayers for you and your son OP. Cancer is a shitty, tough road to go down. Best of luck to your son. He's young. He can beat it.

Prayers sent

Shit man. Ive had a pretty shitty day. Yours was worse. Im sorry man cant imagine what youre feeling right now.

Sorry OP. Awful news. You guys are in our thoughts and prayers. Hold on to hope.

Sorry to hear.

Aren't those both very Curable now?? I believe they both are.

Best Wishes

Prayers for your son and your family

fuck cancer, Im sorry to hear about this OP.. cancer needs to leave kids alone...

Man, I am hoping so. I think they are, we'll get the whole story tomorrow at the dr.

Op, It ain't cancer till the oncologist tells you "it's cancer, here are your treatment options".

I found a lump on my groin early june 2023. Ultrasound radiologist was an idiot and labeled it "suspicious for malignancy, possibly lymphoma". CAT scan radiologist said "suspicious, cannot confirm malignancy". Because it was entwined with lymph node and biopsy can agitate lymphs, protocol was removal then labs/biopsy. Biopsy after removal and consult with Oncologist at MD Anderson confirmed it was benign.

Radiologists look at pictures and give opinions, they don't diagnose or come up with treatment plans. The oncologist who will figure out the solution will double check.

In the end, fuck cancer!

Prayers for you and your family.

Prayers sent

Prayers for you and your family

So sorry. Prayers sent.

Hang in there!

My one nephew was diagnosed with leukemia at age 4. That was more than 35 years ago, he has been in remission for a long time, got his engineering degree and masters and is happily married with two kids.

It IS treatable and curable!

Sent you a pm

Prayers headed your way OP!! Your son will need ya - stay as solid as you can Dad!

That sucks the way they put that out there. No good way to get the news obviously but I had some test before and on the portal the results were left off and had to call doctor and he made an appointment and said bring someone else with you.

He most definitely has youth on his side.nDig in for the fight, more gym than drink.

Prayers out.

Prayers up for your son and your family. Nice to have a first name.

Not too long after their marriage my 1st cousin's bride was diagnosed with leukemia.  As it turned out she had a sister and that sister was a good match for a bone marrow transplant.  Not too long after the transplant the donor sister was diagnosed with cancer and was gone within a few months.

My cousin's wife is still going strong 30 years later.

Hoping for the same for OP too ??

Prayers,

Keep your head up for him!!

GOD be merciful

Prayers sent and Fuck cancer

praying.  God's Grace on you and your family.  God's Healing Power thru your son.  remember to live every day knowing we are not alone on this journey thru life.  Blessings

Praying for strength for you and your family.  Praying for your son's health, and God's wisdom throughout.  Stay strong!

Prayers for your son and your family as you tackle this.

Damn...I have a younger son too (25 yo) and I can imagine how this hit you. I hope he fights like hell and you will be there to support him in it and cheer him on!!! Prayers inbound for you and your son.

One of my best buds was diagnosed with lymphoma freshman year of college. Over a decade later he's still clear and living his best life.

How it started...When he got back from Christmas break I pulled him aside and asked him if he was okay.... cause I thought he tried to kill himself my hanging. I saw broken blood vessels in his face. He laughed and hugged me and thanked me and said the doctors thought it was a post viral syndrome and they were looking into it. Cancer ended up being the cause, but we still laugh about that I noticed and made sure he was okay.

Godspeed your son's healing, OP.

I will keep him in my prayers that everything returns to normal quickly after treatment.

I'm so sorry.   Prayers out for y'all.  

As an aside, I'm off to make sure my BeTheMatch registration for blood marrow donation is up to date.  I urge anyone else who is able to also get on the list of donors.  I signed up nearly 20 years ago when my best friend's toddler was diagnosed with leukemia.  Haven't been called up yet but would love to be able to help someone if I could.  

That toddler is a beautiful young lady now off at college.

Prayers sent.

I'm currently going through treatment for B cell lymphoblastic leukemia. In remission but still have 15 more months of chemo. It sucks but he can do it. One piece of advice that my oncologist gave me, do not Google it. There are a lot of newer treatments that you will not find when you do that dramatically increase survival rates. And, not all oncologists are the same. Do not be afraid to ask for a second opinion. Sending prayers.

Prayers for all of you.

I am sorry, praying