We will be sharing updates about my journey from CaringBridge with links for more information, ways to help and links about the treatments & timelines.
Updates from CaringBridge
So the encouraging news is that my brother, Josh, is as close a transplant match as one can have. And he is close by so as soon as I need the transplant, coordination will be pretty easy. That is a tremendous relief and something that puts me at an advantage for longer term survival without major complications if we can get the cancer into remission.
The scary news is that my next treatment plan is pretty intense. Intense because it will take much longer for my body to recover its ability to make the blood cells I need – white, red and platelets. Whereas with my first chemo, 7+3, I started seeing recovery of red and platelets within 2 weeks of finishing. Side note: I’m seeing very little recovery of my white blood cells even 2 weeks after 7+3. This new treatment might be closer to 4 weeks or longer. But they don’t have to fully recover in order to do a transplant. If in 4 weeks we do another bone marrow biopsy and cancer is in remission we would just transfer to City of Hope and begin the transplant process.
This morning, Joy (over the phone) and I talked to my oncologist for about 45 minutes and got all my questions answered. In addition she will reach out to a top leukemia doctor she knows at City of Hope to get their treatment opinion. My transplant team agrees with the treatment below. So the plan is to begin it today but hoping we hear back from the other doctor at City of Hope before then.
The treatment path I’m scheduled to begin today is called FLAG-IDA + Venetoclax. FLAG-IDA regiment has been around a while for AML but in the last couple years they found that the addition of Venetoclax pushed about 70% of cases even ones with poor prognosis like mine into remission. I need to be in remission to get the transplant.
So the big risk for me over the next couple months is infection or that my body would stop responding to the transfusions of red blood cells or platelets. So far I haven’t needed too many transfusions and my body has responded well to them so that’s good. I did have a day of fevers and they found a minor blood infection and I’ve been on antibiotics ever since.
The treatment is 6 days of chemo for the FLAG-IDA portion and Venetoclax pills are for two weeks. I’ve already survived two weeks with no immune system and being propped up by transfusions so just hoping my body can hold up for another 1-3 months of this.
The staff here at Kaiser Baldwin Park has been great. I’ve had direct access to the director of the food program as well as director of the dieticians the entire time. Blood results this morning were showing I wasn’t getting enough protein so her and I already worked out a plan to double my liquid supplements. The nurses have been great. I’ve probably been through about 20 over the last 3 weeks and I’ve gotten to know their personalities so know who to go to for certain things or questions I have. One of my favorites just came by to check on me after she heard the first treatment didn’t work so that felt comforting.
Hi all..
This caring bridge has become a bit of a Father/Son update – but this is Joy posting about Dad today!
I think this will be the last post about Luthor for a while – so let me give a quick recap!
He went to the hospital last Sunday for a UTI. While there, they immediately did a CT scan to check his bladder and incidentally found nodules in a part of his abdomen called the omentum (the fatty layer that protects our organs). When nodules are found in the omentum, they are almost always cancer, and they have almost always metastasized there from somewhere else in the body (often abdomen). Right away they began referring to these nodules as cancer (carcinomatosis).
They proceeded to do another CT – this time with contrast – to see where in the abdomen the cancer had begun, and surprisingly saw no primary cancer on the CT scan. They then decided to biopsy the nodules on the omentum, which they warned us would be a difficult biopsy to get, due to the fatty nature of the omentum tissue.
He came home Tuesday night, and Thursday he had a follow up appointment where his doctor told us the biopsy was clear! But in an abundance of caution (and aware of the fact that the omentum nodules are hard to biopsy), they have ordered a full body PET scan to see if/where there is cancer in his body.
So – we wait for that appointment, and hopefully for good news!
Thank you all for being so caring about his journey we are on!
Got my bone marrow biopsy results back today and it wasn’t news that I wanted to hear. The blasts are not under control and the first chemo failed to do its job. There is one other FDA approved regiment for AML that I am scheduled to start on Monday. And if that fails to work then there are trials that I could seek out.
Or there could be something that was missed in the pathology lab at Kaiser that might lead to a slight variation on my diagnosis that would require a different FDA approved treatment path. When they do a bone marrow biopsy they usually have left over specimen that they keep preserved and you can request to have it sent to another lab for analysis.
So I will get that sent to City of Hope like we initially planned to do but ran out of time. And for years we did a dove release for cancer survivors at USC so might try to get in contact with them as well. I remember their doctor last year saying they had found cures for nearly all forms of blood cancer. So I’ll probably be very unavailable over for the foreseeable future working on this with the support of family
Slightly Painful Bone Marrow Biopsy
Had a slightly painful bone marrow biopsy today. The electric drill method is faster but manual drill method has a more tactile feel for the person doing it. My first biopsy a couple weeks ago was the electric drill and today was the manual drill. I would choose electric drill over manual but really neither are that bad. I’ve had stubbed toes that hurt more. I’ll have many more biopsies to go so I’m glad to know that either method really isn’t that bad. So hopefully I’ll have the results from that by Friday or Monday which will tell us if leukemia is under control.
In other news hair is starting to fall out but nothing too noticeable. I have a pretty bad headache that comes and goes in ways I don’t understand but other than that I’m feeling pretty normal – digestion normal, sleeping normal, energy normal, everything. My neutrophil count (fights bacteria and fungus) has been zero for 3 days now so I’m hoping to see that start moving up. Red blood cells steady for 3 days without transfusion. No platelet transfusion today so we will see where that sits tomorrow. Patience is the name of the game right now.
Luthor Update & Tim Update
My dad was discharged to home today with the UTI pain mostly under control. It will be a bit of a challenge to manage from home but they will all figure it out.
The biopsy of my dad’s omentum nodules today was a success. They were able to get some tissue samples to check and we should receive a call next week with the results to find out if it’s cancerous or not. And then we will go from there with that. It’s very rare for omentum nodules to be a primary cancer – typically it’s secondary to cancer somewhere else but nothing else was found in the CT scan. So we will just have to wait and see.
My day was pretty normal. Did one bag of platelets to prepare for my bone marrow biopsy tomorrow. That will be used to determine how successful chemo was against the leukemia which determines if I’m ready for a transplant or not. If not ready I probably have to do more chemo at Kaiser. No word yet on sibling matches for transplant but should be this week.
So I’m either going to have some amazingly easy news to stomach this week (cancer under control and a sibling is a match) or amazingly difficult news to stomach (need more chemo for cancer and no sibling match). Or maybe some mix of that. I think more likely I find out all the things Monday of next week at earliest.
I’m bracing and preparing my mind and emotions for the worse news through journaling and a book by Suleika Jaouad “The Book of Alchemy” – she had the same two types of cancer as me at age 22 and then had a relapse at age 32 – both times finishing with a transplant from her brother. Her first book was a memoir of her experience and this second I have is a book guiding you through a 100 day journaling experience. I’m optimistic it will be something to help guide me through my thoughts.
My dad has been dealing with a painful UTI since last week. So my mom and him started at ER yesterday at 3 pm. My sister Joy took over around 10 pm and he was admitted to the same hospital I am in around 2 am. He is one floor up from me.
My sister spent the night. Two months ago a CT scan found nodules on my dad’s omentum (it still needed follow up) so that was part of his intake. Thankfully this morning’s full body CT Scan with contrast did not reveal any sort of tumors – which are typically a primary source of cancer that then causes omentum nodules. That’s what we thought we might find this morning. That was a very difficult 12 hours while we waited. Tomorrow morning they will attempt a biopsy checking for cancer on one of the larger nodules but it’s a challenge to do because the omentum is very flexible and the nodules move along with it. So we are not out of the woods. We will find out more tomorrow.
And aside from his omentum nodules he is still dealing with lots of pain when urinating so they are hoping that more powerful antibiotics will help with that. So they are focused on those two aspects. My sister will be with him nearly 24/7 as he is on pretty strong pain meds and his hands aren’t very functional as a result of his neuromuscular issues that began with his GBS.
My day was rather uneventful which is what we needed after a night of little rest with worry over my dad’s situation.
My morning blood work showed I need two bags of platelets so i got that in the afternoon. My absolute neutrophil count is down from 0.010 to 0. That needs to get to .500 before I can leave Kaiser. But if we do a bone marrow biopsy showing leukemia is under control and I have a donor lined up I would just jump straight to City of Hope for transplant without trying to get to 500 first. Because transplant process takes it to 0 again anyway with chemo that prepares my body for transplant.
I asked my oncologist today if there is an upper limit to how may transfusions I get. There is of sorts because antibodies connected to the transfusions can add complexity to how well my body takes the bone marrow transplant. So we want to use as few transfusions as possible. I’m currently at 4 platelet and 2 HGB.
Headache still a thing but have my room darkened and took some Tylenol. They reduced the strength of my antibiotics based on what they now better know about the bacteria they found in my blood. So that means I go from roughly 10 hours per day on IV with multiple wake ups in the night to maybe 30 min per day so I’m grateful for that. I’m still able to take daily walks for exercise circling the hospital floor.
Photo from when Joy found my window outside this morning. Now that she has been in ER we are keeping some distance for a bit.
Symptoms pretty much the same. No fever for 3 days. Just a headache that seems to get worse with brightness so I’ve got the windows partially covered and seems to be helping.
Bacteria was only found in 1 of the 2 samples from day 1. None in day 2 blood samples. So blood infection causing fevers likely wasn’t very widespread.
My doc consulted with an infectious disease doctor who said no concerns over heart infection because that type of bacteria wouldn’t take root there.
It’s a bacteria type that lives in mouth / throat so entry was likely from somewhere in that area which could be a small cut in my mouth or maybe even just reduced mucous lining as a result of chemo.
So far I’ve had two platelets and two hemoglobin transfusions. No transfusions today. Hoping that holds tomorrow. Not seeing any improvement in neutrophil counts yet which are crucial for my immune system. But that was the main unknown going in anyway – because of the likely 10+ years of undiagnosed MDS cancer heavily reducing the ability of my bone marrow to generate healthy blood cells my body probably won’t follow the more standard 2 weeks of recovery after the very strong 7+3 chemo for AML. But it’s all unknown.
Hoping to find out mid-week if any of my siblings are a match. So that’s going to be a significant step and is on our minds.
Photo of hemoglobin transfusion going in on Saturday.
So they did a blood culture yesterday and identified the bacteria. They will continue to let the culture develop to see if anything else is discovered. But for now one of the two antibiotics they had me on is the right choice for the bacteria type they found on quick examination so we will continue with that routine. I’m not sure if they can determine how the bacteria got in the blood, but chemo damages your mucosal lining all through your GI tract so could have passed that way and doesn’t mean it’s something I got from another person.
The two platelet transfusions went fine yesterday and those numbers held so don’t need that today. My HGB red cells dropped so I got one bag of that earlier today and my body reacted fine. But my white cells will just have to build back on their own. I’m on anti-viral, anti-fungal and now anti-biotics to do the work for me that my body can’t do on its own.
Main discomfort has been bad headache but I used my phone less today and it didn’t hurt as bad so that could be it. I can’t take much Tylenol because it would mask a fever. It’s important to know if I have a fever as it’s a sign of infection.
So now it’s just wait and see if my body can stay healthy and if not they support it in any way they can to make until my immune system recovers. I’m now able to be in bed with limited interruption 9pm-6:30 am so that’s pretty good. It was hard to get that figured out but now I have that.
Got a pretty good view of fireworks from my room.
Last night was 48 hours after chemo stopped and I’ve heard people say you hit your max impact from the chemo. My head is starting to itch today on the sides where I still have functioning hair follicles. Top is already bald.
It’s been an eventful 12 hours. Around 2 am I had a 100.5 fever with 105 bpm heart rate but putting the A/C to 69 and using ice packs we got it back to normal within 15-20 minutes and I just slept the rest of the night without sheets and the temp really low. Same thing happened this morning after I finished my CT Scan but again fever and heart was under control within 15 minutes. So as a precaution they did a lot of things – took blood culture from two different veins to see if there is any bacteria in my blood and if there is to be able to match the antibiotics to the type of bacteria. They started me on two very strong antibiotics and did a chest x-ray to make sure no infection in my lungs. I’ve had a headache that doesn’t go away with Tylenol so they did a CT Scan first thing this morning to make sure no bleeding in the brain and there was none. I also got a pretty big hive on my left thigh likely from the first antibiotic but it went away.
They checked my blood type and are preparing two bags of platelets for a transfusion. My platelet levels combined with the unexplained fevers means I need platelets. It’s about 2 hours per bag so I’ll be hooked up all evening for that.
I feel more energetic today than yesterday. I went for two laps around the floor today. But tonight I gotta make sure I’m in bed by 8 pm to maximize the sleep. Everything starts getting pretty busy around 6:30 am for me with daily blood draws, nurse shift swap, daily morning visit with my oncologist around 7:30, daily room disinfecting, meds to administer, eating meals, monitoring my symptoms and explaining them to the nurse. Then I have a strict oral hygiene process – I swish the blue stuff you end with at the dentist 2x daily to prevent mouth sores. I take a daily shower and have to cover my PICC line and then also have to wipe down my whole body with disinfecting wipes that kill bacteria, fungus, virus and other pathogens. In my down time when I have energy, I’m mainly talking with close family and friends and workers at the dove business. But it feels like I can barely fit it all in so zero moments of boredom so far. I watched half of one movie and the first episode of The Residence.
First Day No Chemo – No Nausea
Just had a headache that got worse as the day went on but Tylenol seems to have taken care of it. After 6 hours of night sleep I mainly just slept all day and rested. I took an evening walk around the floor during the shift swap so was fun to see all the nurses and charge nurses coming and going. They always tell me when they are off for a couple days and when I’ll see them next. It’s the only semblance of a schedule I have. My days are marked by my blood results and how many days post-chemo I am.
Everyone at the dove business is holding it down. Even with the complexities of my mom, dad and Joy chasing down a more accurate diagnosis for what was GBS my dad is holding the pieces of the business together while everyone transitions into their planned responsibilities. Eventually the team will figure out all the moving pieces and he can cut back more.
My mind is shifting toward the transplant process now. I just need to have patience with my body over the next couple weeks and be careful with my hygiene. Next week we hope to learn more about the possibility of a donor match with the three siblings. It’s a little scary because it’s possible there isn’t a match among siblings but that a match is found in the registries – but because of various reasons the match isn’t willing to participate. Sometimes their work won’t let them get away, they could be in a different country and get blocked by the visa process or they might just rethink their decision. They could literally save someone’s life but something is holding them back. That seems like it would be the hardest thing to process if it happens that way but there is no sense in putting too much energy at it now.
The one thing that feels real to me is that with most of my life decisions I have the pain and worry over which option to choose or over a potential missed opportunity. I don’t have that at all with these two cancers – I have only one path forward and in some ways that takes out some of the pain and worry. I just have to go through the process and hope for the best.
I got disconnected from the 24/7 chemo line last night around 11 pm. It felt good to move around freely in the room. Wed evening I should hit peak impact on my body with the chemo – maybe loose hair, blood cell counts drop the lowest, etc. Now that I’m no longer getting the chemo, I hope I can stop the anti-nausea medicine that has the constipation side effect. Yesterday my bowels finally caught up with my eating so I’m feeling much better today. Today I will get my first shower after 7 days of just wipe downs with wipes that kill pathogens.
Yesterday I started anti-viral and anti-fungal medicines because my white blood cells that fight infection are getting low as expected. Then we just need to monitor symptoms closely for any sort of fever or infection. Today I didn’t need any red or platelet transfusions. They draw my blood every morning around 6 am – so tomorrow we will decide if I need any transfusion based on those results.
The staff has been really great. I like a clean room and not getting infections relies on it – the two cleaners Mercedes and Diana have been amazing keeping everything clean and suggesting how to function in the room. They see every patient on the floor 2x a day. They have had patients like me stay for as long as 6 months so I get all sorts of tips from them about how those patients functioned in their room.
I’m trying to learn how to balance control and just going with the flow with nurses / doctors. Many of the nurses have helped me to talk this through which has been good.
From my window (photo included) I think I can see some of the City of Hope buildings. It’s just 5 miles away out my window. If I’m lucky and we find a donor, I’ll be there in July / August for the bone marrow stem cell transplant. My only cure is to get a bone marrow stem cell transplant. Luckily they’ve been doing this successfully since the 70’s but it all comes down to having a good match. It’s very easy – just a cheek swab – unlikely that you would be a match for me but you could concretely save a life of someone else.
To get the swab kit go to nmdp.org
Two more full days of round the clock chemo to go. My WBC are starting to drop which is expected. This morning it was down to 0.6 so there is a greater risk of infection now so precautions are high.
This might be TMI but hospital visits are full of that so here we go.
Mainly just trying to manage side effects – sleeping well and dealing with constipation at this point. If I could do the first week over again I probably would haven’t focused so much on eating “healthy” but just eating what would pass through my system the easiest. Going into this I was already eating pretty healthy so could have rode out that benefit a bit more by eating easy food for a bit. Every time they check my blood pressure I’m glad for the diet changes I made over a year ago to bring that down.
The two main anti-nausea meds are Zofran and Reglan. Zofran caused constipation so I switched to Raglan today but that blocks dopamine so much bigger motivation and mood drops on Raglan. I’m glad they started me with Zofran – way easier to handle. But I’m hoping in the morning I need neither of them.
Luckily my body broke through most of the constipation earlier today with just mild medicine help. It’s important I keep my gut lining healthy to prevent entry of bacteria and other pathogens in my GI tract while my WBC are down. So the goal tonight is to sleep a lot and get my digestion back to normal tomorrow, now that I may not have to take any medicines with constipation as a side effect. It’s managing these little details on future chemo that should make it go more easily.
Long Post with Thoughts So Far and What’s Next (from Tim)
It’s been a whirlwind week. It’s been 9 days since the double blood cancer diagnosis and a month since my routine CBC came back as significantly different than 18 months past. It seemed likely I would be given a lupus diagnosis given the family history but cancer was always a possibility for that month of waiting. I couldn’t control it so didn’t put too much energy at it, but I know it started impacting my thinking. When it was time to hand over the dove business to all the staff, it came together pretty quick. Their energy and commitment to what the business does and to helping me was more than I expected. They took on so much, so quick and have been pulling to keep it together for themselves and everyone connected to it.
My days are mostly filled with figuring out my routine: try to sleep well, eat well, how to communicate with the nurses, doctors and staff to get the best care, deal with side effects, drink lots of water, etc. I’ve had some dizziness and constipation but other than that feel pretty similar to a week ago.
I’m on an acute care floor with 72 other beds – everyone is chemo or heart issues so the nurses are super on top of everything and have special certifications for working with chemo patients. We get our blood drawn every morning around 5 am to monitor levels and determine if medications are needed.
Beginning next week I’ll likely need lots of blood transfusions for red blood cells and platelets. But I can’t do any blood transfusions of the 3rd category of blood cells – white blood cells. The challenge is my body was already struggling to make WBC likely based on the 10+ years of undiagnosed blood cancer I already had. So for those that I worked with at Apple way back at Mission Viejo and San Francisco, I had it then but didn’t know it.
Quick Tutorial
Bone Marrow – inside your bones and makes the WBC, RBC and platelets
White blood cells (WBC) – fights against bacteria, virus, fungus, allergens
Red blood cells (RBC) – carries oxygen to all your organs. Starving organs of oxygen isn’t good over the long haul and makes you feel exhausted
Platelets – needed to clot your blood.
Some of these details will be a repeat from the first post but filled with my thoughts along the way.
I really didn’t have too many breaks in doctor care even with my traveling but I just moved to different cities, switched medical systems and switched doctors every 3-4 years. Every time they asked if I had recently been sick because my WBC were on the low side and every time I said I didn’t think so but none did any sort of specialist referral out to a blood doctor. Some even said we all have different baselines – which is a frustrating in hindsight. It’s just hard to know which of all those tests are important and which aren’t when looking at your health.
I don’t feel emotionally connected to regret over that, but realize the value of sticking with the same doctor or at minimum stay in the same system that gives a lifetime of test results to your new doctor so that they can make good decisions at your annual checkup.
So I’m grateful to be with Kaiser. Their tech, tracking and operations are pretty efficient. It escalated pretty quickly a month ago – blood tests came back low, which triggered a nurse call 3 hours later that escalated to an on-call doctor. Next morning my primary care team booked me with two specialists for 11 days later. My blood doctor saw my unusual CBC results over 10 years and scheduled me for a same day bone marrow biopsy 4 hours later in the hip (not painful at all – used a drill to get through the bone). The bone marrow biopsy took a while (10 days) but knew it could take 14. But a lot happened on the back end during that time. Two presentations to SoCal Kaiser oncologists which led to further tests on the same bone marrow. They found both mutations. Many cancers are unusual but luckily both mutations had a treatment plan that all oncologists agreed on. It could have come back that I had an un-researched mutation but that wasn’t the case. We later got a second opinion on treatment from City of Hope and they agreed with Kaiser’s treatment plan.
But the treatment plan is long and unusual. The 7+3 chemo for most people is pretty well tolerated. And then after that I’ll likely feel better than I did before coming into the hospital because of the transfusions but I’ll just be at very high risk for infections or getting sick so that’s why I stay at the hospital for constant monitoring and quick reaction if I need anything. My WBC won’t start dropping until after chemo is over this Monday. So this week feels like practice for all my hygiene routines.
It’s scary to think that a mild cold or cough could turn into pneumonia and then a critical care situation where I’m on the edge. And because I had 10 years of bone marrow not making WBC’s very well it’s very unknown for how long I’ll be in that position – 3 weeks, 6 weeks, it’s unknown but until then I will basically feel normal but have to keep up my guard against bacteria, fungus and viruses. I’ll basically be living in a hospital like it’s a hotel but with trained medical staff a buttons call away and their strict routines for monitoring my progress.
So about 25 days from now they’ll do another bone marrow biopsy to check on the Leukemia cancer. If it’s under control then I move to phase two at City of Hope – the bone marrow transplant (aka stem cell transplant). But if I still have levels of leukemia that are too high then I repeat the process at Kaiser – more chemo, more isolation and more monitoring.
Once at City of Hope, I basically start the process all over but this time they use chemo and radiation to finish off what’s left of my own bone marrow that wasn’t making enough WBC’s. Then once it’s gone, they introduce stem cells from a match into my blood stream that automatically make their way into the center of my bones where they form bone marrow. I’ll get the same transfusions of RBC and platelets but need to wait for the new bone marrow to make my own WBC. So then begins another time of isolation, living at the hospital with constant monitoring this time to also check that my body is reacting okay to the transplanted bone marrow and that the bone marrow and it’s WBC’s are accepting my body as non-foreign. If that match isn’t good enough it could get really complicated. So that’s why City of Hope handles the transplant while Kaiser handled the relatively routine part of knocking down the Leaukemia. Luckily both hospitals are within a 15 min drive of my parents’ home, my brothers’ work and not too much further for Joy so that makes it much easier.
I’m grateful I have access to what’s possible in medicine. I’m grateful that after I saw my dad in acute care at Kaiser 3 years ago with his GBS, I decided to resume medical insurance out of pocket with Kasier. I’m grateful for a break from the day to day worries of the business to focus on my medical situation. I’m glad I have the hospital to cook 3 meals a day for me and check my vitals every 8 hours. And I’m just trying to let that gratitude outweigh the very real fears and the seriousness of my situation as it relates to pain, the fear, struggle and dying.
At times I’m allowing myself to go to the difficult thoughts with the perspective of friends, family and a therapist. I’m working through a perspective on it in the way that works for me and that motivates me to keep going. That will give me the energy to do the simple things that put me in a best case scenario – sleeping, eating, hygiene, accomplishing tasks and exercising for the feel good chemicals, talking with others for the bonding chemicals and just try to keep going. And with my RBCs’s dropping over the past 18 months I was already focused on these aspects of my life to compensate for the fatigue – so in many ways it’s just a continuation of what I started 18 months ago.
Thank you to everyone that has been involved and offered to help and to those whose thoughts are with me during this time. It does give you a boost to know that people care about how I am doing.
If you want to take action for me and are age 18 – 40 sign up to be a match – not likely we would be a match but could help someone else. Just hearing how many millions of people are registered makes me feel better. And donate blood. That’s what I’ll be sustained by over the next several months and anyone else in the same position as me.
Hi friends! Many have asked if they could be checked to be a match for Tim. Unfortunately they only check siblings right now, so technically for Tim, it’s a no. HOWEVER – if you want to be added to the global registry for bone marrow transplants – here is the link. What a beautiful gift it would be to add to this life-giving registry! I’m too old – but if you’re under 41 – please consider joining this registry! Thank you!
TUESDAY, JUNE 24, 2025
Yesterday we had a special day together as a family as Tim officially started his battle against AML & MDS. He has a room with a view, and it was full of his parents and 3 siblings all day. He had his PICC line put in, as well as a variety of tests and levels to get before he started chemo. He has a great care team, and specifically a wonderfully knowledgeable nurse come on for the evening shift – Mike – who has been doing this for 31 years and trains all their oncology nurses. What a gift and a peace he was to Tim, explaining everything and talking him through the recovery time.
At 8:30pm, Tim began the 7+3 chemo – which is 7 days of a continuous 24/7 chemo as well as 3 days of a short 15 minute infusion of a chemo called idarubicin, sometimes called the “red devil”. It’s extremely powerful and if dripped on skin would damage it.
He had pretty good night overall, sleeping 5 hours, which seems to be his average these days. He is paying very close attention to things like hydration, rest, and hygiene, as his risk of infection will be so high at the end of this treatment. Because of that hospital visitors might be very limited.
It sounds like he will be in this hospital for 3-4 weeks before transferring to City of Hope for his Transplant, which could also be quite a few weeks’ stay. I (Joy) got tested today to see if I happen to be a match, and Christy & Josh will test as soon as they get the OK from Kaiser. After checking the siblings, the search would go to the global database.
Tim is appreciating texts, calls, and notes here on caring bridge & Facebook! We were talking yesterday about how grateful we are for this BIG net of support he has built through friends, family, work, school etc. It is touching to see the outpouring of love in these times of grief! THANK YOU!!
JUNE 23
Chemo Day one!
The OG Nelson’s together to start out strong.
7 days of 7+3 chemo starts tonight.
FRIDAY JUNE 20
Here is a quick update on what’s going on with Tim. The doctors have narrowed down his diagnosis to secondary Acute Myleoid Leukemia (AML), which was likely years preceded by hypocellular Myelodysplastic Syndrome (MDS). It looks probable that he has had MDS for quite a while, which is an underlying cancer in the bone marrow. This can turn into a form of Leukemia, which unfortunately seems to have happened within the last few months. The cure for MDS is a bone marrow transplant (aka stem cell transplant). The cure for AML is a chemo treatment called 7+3. Currently, they are making plans to check to see if any siblings are a match and considering also checking our three double cousins! After checking close family like this, they go to the pool of donors. So unfortunately, none of our other friends and family can be specifically checked as a match for Tim, but if your heart is drawn to this need, if you are between the ages of 18 and 41 you can sign up to be a donor.
Tim’s Kaiser doctors have been in consult with the hematologist/oncologists at City of Hope and have agreed on a treatment before the transplant. We feel like he has a really good team around him for both the treatment and the transplant.
He is scheduled to check in for chemo on Monday morning in Baldwin Park Kaiser, and would be there through treatment and a few weeks of recovery before being transferred to City of Hope for the bone marrow transplant.
Tim is so grateful for all the love and support as he turns White Dove Release over to a group of staff and prepares emotionally and physically for the journey ahead.
If any of you want to dig deeper into these diseases, here are some helpful resources.
https://www.nccn.org/patients/guidelines/content/PDF/aml-patient.pdf
https://www.nccn.org/patients/guidelines/content/PDF/mds-patient.pdf
https://www.cityofhope.org/clinical-program/bone-marrow-and-blood-stem-cell-transplants
JUNE 17, 2025
June 17th, his hematologist called with the jarring news that he in fact has leukemia. More specifically, he has acute myeloid leukemia and likely MCD (myelodysplastic syndrome). The doctor laid out a treatment plan beginning with a week of intense hospitalized chemotherapy, followed with approximately 2 more weeks of hospitalization to be monitored and kept away from extra germs while he recovers his immune system.
The current conditions of his bone marrow require a bone marrow transplant after the chemo and recovery time. They will check to see if one of us siblings is a match for his bone marrow, and if not, then City of Hope has a pool of bone marrow donors.
Currently the plan is to begin chemo on Monday at Kaiser in Baldwin Hills, and after around 3 weeks there, to have a bone marrow transplant at City of Hope.
Tim is getting his work details ironed out before beginning this long round of treatment. He is feeling the grief that comes from this diagnosis but is strong and surrounded by people who love him!
