Your brothers here are with you and praying for Allison daily, she is in the hands of God and he will guide those heroes treating her.

Prayers sent. Cancer is the worst.

@J-L - Stay hopeful. I was diagnosed with Hodgkin's back in 1977. I was at St Jude’s in Memphis three days after the results of my lumpectomy came back. Wet through rounds of radiation therapy and now 40+ years later I have had no relapse or anything.

I went back to St Jude’s a few years ago for a long term follow up. One of the things they said was that back when I first came You could have a room of thirty kids with leukemia (i know - not the same).  Said that out of the 30 kids 3 could be saved. They said that now with all the research and everything that now the numbers have reversed. Out of 30 all but 3 could be saved.

Hoping everything works out well - there is hope!!

I'm sitting in the cancer center waiting room right now with my son. His treatment starts shortly. I'll hit you up later today op, feel free to reach out to me as well (sucks typing on my phone, when I get home I have a pc!)

Edit: My son has t cell accute lymphoblastic leukemia (T-ALL)

Ok, made it back home. Kind of a rough day but those happen. My adventures with cancer all started on Jan 10th, I posted about it in this thread . I can sum up that first week as one hell of a rollercoaster, and as you now well know nothing will reset your compass like finding out your child has cancer. Stress at work? Need to mow the lawn? Garbage day coming? All that shit goes right out the damn window.

I'll start by saying I'm not a doctor. My understanding of cancer was 30 years outdated when this started. I dont know all the various treatments and I dont want to come off as giving advice as I have no idea what you are headed in to. That said, my son has leukemia and while a different variant my assumptions are that the treatments are similar. I'll share my experiences a bit so maybe clear the fog a bit as to whats coming up.

First and foremost, its a long treatment plan. I always thought chemo was a 3 month thing and you either win or lose and thats that. Not so with blood born stuff. My sons treatment plan is a total of 5 years. Of that, 6 months is intense IV chemo followed by 2.5 years of pill based chemo then 2 years of monitoring for a total of 5 years. The first 6 months is called a "delayed intensification". Its a fitting name. The first month we were going to the hospital 2 times a week and I thought Hey, this is doable. It ramps up as time goes on. By the 4th month it was 3 to 4 times a week and we're sitting steady at about 5 times a week as we finish up the last month of the 6 months. Its fucking intense. I'm very fortunate that my work is understanding and I can work remote so my manager just said do what I have to do.

Some days its just a shot and we're in and out in under 30 minutes. Those days are rare. Some days are a full workup with blood transfusions, dressing changes, nurse visits and long duration IV chemo. Those days are uncommon, the longest we checked in at around 8 Am and we walked out right at 8:30 PM. I mean it was 12 hours at the hospital. Those days are rare as well, but they do happen.

My son is handling it well, younger people do better than us older guys. That said, theres good days and theres bad days. Oddly, theres no real pattern to it. Theres been days he gets a shot and feels like shit, other times he gets a long duration chemo and feels pretty decent all things considered. I'll tell ya though, its fucking hard when they get sick. Watching your child vomit from the chemo hes being given, man that really is a stark reminder of what your child is going through. The clinic does a good job of managing nasea though so its rare but it does and will happen. Also, my son has shaved his head twice due to hair loss although hes never went completely bald and doesnt last long.

If I had to give you advice it would be to prepare yourself for a marathon, not a sprint. If you get the same (Or similar) treatment plan as what we have its going to be a long winter for you. I've called this my lost summer. We started treatment Jan 12th and our last scheduled treatment for the delayed intensification period is Sept 15th. After that we transition to maintenance. But those 7 or so months are going to be long and really take a toll on you. Of course you also need to make arrangements for transport, I was lucky and didnt need to take FMLA but I dont know your situation and you may very well need to. Also, it may not be long enough to cover the full duration. My son is 23 and he can drive himself. I can count on one hand the number of times I wasnt able to take him, I figure he has enough to go through without dealing with driving after getting loaded up on chemo.  

Otherwise, I'm surprised how much we have our normal, routine life. That first month man I was a mess. I mean I wouldnt let you on the damn property unless you wore a mask and had a Lysol bath. That slowly passed and while I still pay closer attention to sanitization, you really dont have to go overboard. Just be smart, wash your hands and use hand sanitizer as needed. To put it in perspective, my son got Covid (From me!) 2 weeks ago. I figured well shit, hes going to die. Nope. Mild fever, they paused his treatment for a week. That was it. After he started feeling and better back in the saddle he went.

Hell, we havent even changed the cooking all that much. He still eats shitty fast food from time to time, we still go out for steak night from time to time. You can pretty much just keep on with your normal routine in that regard, but its helpful to have some Gatorades and little snacks in case hes home alone and isnt feeling well but still wants to eat. I bought a few boxes of the instant mashed potatoes from Costco as potatoes are super easy to make (Just add hot water) and they wont upset a sensitive stomach. Maybe not the healthiest meal but when they feel like shit and just need something to eat that wont make them feel sick potatoes are a great go to for us.

The outcomes for leukemea these days are really good. 50 years ago it was a death sentence. Now? Its something like an 85 to 90% success rate. Stay positive, its a long fuckin road but there is a light at the end of the tunnel and you will get there.

For what little its worth, we are being treated at Fred Hutch in Seattle. At this point, in my mind, there is no other center on the planet I would go to. We've not had one bad experience anywhere....I mean from the doctor to the cafeteria lady to the parking attendant, every single interaction has been positive and friendly ever since we've startewd going. The doctor is incredible, he takes all the time we need to answer any questions and doesnt rush us at all and makes sure we understand the situation before moving on.

Good luck man. I know exactly what you are going through, the period between diagnosis (Jan 10th) and getting clarification on the treatment (Jan 12th)...I was a goddamn wreck. This is absolutely winnable, and the odds are very much in your favor. If you have any questions I'm happy to answer what ic an or share more detail on anything that I've been through if you think it will help. Feel free to reach out whenever.

@J-L

PS: I'm pretty tired (Was an EARLY day today) so rambled on a bit.

PPS: His treatment plan is a variant of C10403. I believe its specific to ALL and may not be what they would use in your case.

Thanks for sharing that my friend. Allison had her first chemo this evening and did great. Eating a sandwhich during the treatment. Afterwards she was quit giddy i think from the steroids they gave her before. I know its a marathon. Were looking at 6 months of treatment. I hear you on the life stressors versus this. Puts it all in perspective. Youre son sounds like warrior, and he has a strong caring father looking after him.  She actually smiled today when she said i was snoring in the room the other night when i passed out in the chair and she asked the nurse for ear plugs as she didnt want to wake me up. God love her .

Everyone thank you for contributing to this thread , you can really feel the emotion and love from everyone.

Haha, yeah sounds like a typical kid. I was surprised how well they just take this shit in stride. But there will be good days and lighthearted days, and there will be some real heavy days that just make you ache inside because your child is suffering and theres not a goddamn thing you can do about it.

I will say that being middle aged I've gotten the balding spot on the top of my head. My son had all sorts of jokes when he started losing his hair about how he was starting to look like me or how I would end up looking like him. Har har. Sometimes you just have to make jokes about it all I guess.

I also make a point when we leave to ask my son if its a go home day or if he wants to stop somewhere. Sometimes when he feels up to it we'll stop and grab dinner (Or lunch, or whateevr it may be) and its a nice break to just relax and kinda feel normal again, even if for a bit.

Good luck man. God knows it takes a hell of a lot. Always here if you need to talk or whatever, just shoot me an IM!

Praying fervently for Allison.  Give her some big hugs from the other fathers here.