81 replies to this topic

[TonyBrown]

It's my kid I will be worried at the same time confident in the care.
I know what you are saying though and agree.

you’re a parent, your job is to worry

[AspenLeif]

Oh, for goddamned sure.

[Genesee Ted]

I’m glad to hear it’s going well. I’m really at a loss for words but you’ve been in my thoughts

[Augie1991]

Continued prayers Cavman!!! I worried a bunch when it was going on and still worry. Watching your child go through all of the poking and prodding is hard. Isaac had 3 years of treatment. With ALL the first 9 months had the most chemotherapy, and was physically the hardest on our son. The LPs, lumbar punctures, were the most difficult to watch. As parent we were allowed to sit in the room during these treatments. Isaac had over 24 of them.

Everyone on these boards was very supportive, I cannot stress how helpful and kind everyone was. Know that we are here to listen and support you and your child Cavman! I understand what you are going through, it is an experience that will never leave my memory. Kids that fight cancer are warriors!! Stay Strong and reach out if you need support or an ear to listen!!

Edited by Augie1991, 13 March 2023 - 06:05 AM.

[Augie1991]

How long is the treatment for APML for your daughter? Is the goal to initially lower the white blood cell count to get rid of those immature cells/blasts?

Edited by Augie1991, 13 March 2023 - 06:18 AM.

[Big Nake]

It's pretty amazing what doctors are doing with cancer these days.  I know I mentioned my wife's breast cancer... we were told it was "aggressive" and the type that [according to her doctor] "liked to get out on the highway"... suggesting that it had spread.  None of that sounded positive.  She was diagnosed in 2006 and is healthy now.  That's pretty fucking amazing.  She knows other women diagnosed 20, 25 years ago who are healthy and active.  More positive thoughts and vibes in your direction.  Please keep us posted.  

[cavman]

How long is the treatment for APML for your daughter? Is the goal to initially lower the white blood cell count to get rid of those immature cells/blasts?

yes getting the platelet count under control is a major goal
This has obviously been in process since the beginning, destro the overproduction immature white blood cells, etc. But each case is unique, the spinal tap had blood; was that a cross draw from inserting the needle or is there blood there. It's a big difference. Dana Farber has been there of course and we are looking at everything.

[Augie1991]

Spinal fluid looks clear like water. I remember watching it drip into the collection vial and counting the number of drops. After the fluid was removed, they would administer some chemotherapy methotrexate.

Upon needle insertion there may have been a little blood just from the trauma of putting the needle in there?! Continued prayers for healing!!

Edited by Augie1991, 16 March 2023 - 10:29 AM.

[cavman]

Bad 2 days but never expected smooth sailing. In ICU again$full body pain, platelets down, back on O2 and steroids and given a pain button. A mad dad not at staff,, just at this stuff, hard to see your child weak and hurting and you can't help. We have all the best helping from all of MGH, Boston Medical and Dana Faber but I don't know nothing. I know it will get done but they are all lost now. I'm all calm face and tough but lost.

[dondewey]

I'm sure there will be lots of hard days, but seeing how much you are affected reinforces to her how much she's loved.

I can't remember everyone's kids here, is this the kid who was a big online streamer?

Edited by dondewey, 16 March 2023 - 09:31 PM.

[toonces]

I's gotta be tough.  Vibes, bro.

[Vagus]

Bad 2 days but never expected smooth sailing. In ICU again$full body pain, platelets down, back on O2 and steroids and given a pain button. A mad dad not at staff,, just at this stuff, hard to see your child weak and hurting and you can't help. We have all the best helping from all of MGH, Boston Medical and Dana Faber but I don't know nothing. I know it will get done but they are all lost now. I'm all calm face and tough but lost.

It's the Icarus ride, man. Gotta get close to that sun to burn it all out. But that pain is the demon dying. Hemopoietic cell counts is a well-developed industry. They know how far they can take it, and when to pull back. Your daughter will come out of this strong. 

[DieselGopher]

Continued vibes for you all.

[Big Nake]

Being on the roller coaster would be hard, no question.  Of course when Cavman describes what he's seeing I imagine my own daughter going through it and what it would do to me.  The helplessness along with the feeling of advancing but then falling back... that would be very, very tough to see.  I do believe what these guys are saying... your daughter will come out of this and be healthy again and there will be hugs and tears and happiness again.  Furious thoughts, vibes and hoists sent in your direction.  

[Augie1991]

U of Iowa hospital gave us a book on Leukemia that was written for parents. It was very helpful in understanding some of what was going on. We were blessed that my wife is a doctor. A few times she noticed things that the cancer doctors overlooked. Arm yourself with as much knowledge as you can about APML and it's treatment! Ask a LOT of questions and tell them to explain it so you can understand it. If I did not understand something I'd continue asking them to "dumb it down" until I did. It was helpful for me to take a lot of notes when I met with doctors! Seek love in every direction possible, there are a lot of people who care!! If it would be helpful to talk to another parent don't hesitate to send me a pm. We could talk or message if helpful!

[cavman]

It's the Icarus ride, man. Gotta get close to that sun to burn it all out. But that pain is the demon dying. Hemopoietic cell counts is a well-developed industry. They know how far they can take it, and when to pull back. Your daughter will come out of this strong.

the Icarium ride death bringer to the cancer cells. Today was a good day, a high on the coaster a smile on her face.
Thank you all for the support, I appreciate it.

[cavman]

U of Iowa hospital gave us a book on Leukemia that was written for parents. It was very helpful in understanding some of what was going on. We were blessed that my wife is a doctor. A few times she noticed things that the cancer doctors overlooked. Arm yourself with as much knowledge as you can about APML and it's treatment! Ask a LOT of questions and tell them to explain it so you can understand it. If I did not understand something I'd continue asking them to "dumb it down" until I did. It was helpful for me to take a lot of notes when I met with doctors! Seek love in every direction possible, there are a lot of people who care!! If it would be helpful to talk to another parent don't hesitate to send me a pm. We could talk or message if helpful!

Thanks I obviously have been doing my research and have relatives that are on th boards/have pull through donations to all the major hospitals. I have not asked for help as she is receiving the best care, I would only say anything if I felt she wasn't.

[cavman]

She was good today, very upbeat. We talked about star wars shows, it's a big interest for her and we have watched them together for years. So laying out a plan to watch stuff.i am not good at this as I assume most aren't. Just spend time ,distract her and let he know I love her.

[positiveContact]

She was good today, very upbeat. We talked about star wars shows, it's a big interest for her and we have watched them together for years. So laying out a plan to watch stuff.i am not good at this as I assume most aren't. Just spend time ,distract her and let he know I love her.

You will become good at it if you already haven't. Do whatever it takes. I have complete faith you can do this.

[cavman]

I will be super positive and all do stuff together as always . Not sure what else to do.