Good news today is Jakob's LP showed no leukemia. So for now he will avoid every other day LPs. He officially started his relapse tx this afternoon at about 3pm our time. So glad that tx got started. One day closer to beating this once and for all.
On another note I just want to put out there how incredibly lucky and proud I am of my other kids. I have 2 non-ck and they are wonderful!! Today is my first time at home since learning of Jakob's relapse, what a comfort to have them both here with me.
That is such good news Nana, thanks for the update. I'm in awe of how steadfast and level headed you seem, but then again, that's how you always are so why should you be any different now. I'm so glad your other kids are doing ok and you are home with them now. How is Jakob handling the news? Thinking about having to tell the kids (both ck and non-ck) about a relapse makes me the most sad. I'm sure you did wonderfully given the circumstances. Please continue to keep us posted if you can. Thinking of all of you.
Nana,
I am thrilled and so relieved to hear Jakob's CNS was clear!!!! That is absolutely terrific and great that he can avoid some of those nasty Triple IT LP's. Those things are definitely no fun (Leann gets them 2x a week right now until her CNS is clear). I am so glad your other kids are bringing you comfort.
Hang in there,
Karen
Karen,
Jakob would have had triple IT LP's every two days until he had 3 in a row of clear results. So yes very relieved he doesn't have to do that.
Nana,
Just thinking of you and Jakob.
Hope he is tolerating the new chemo as well as possible,
Karen
Thanks for checking Karen. With everything Leann is going through. We are on day 5, last day. He is having platelet issues, nausea, swelling and his hair is starting to fall out. Sounds crazy to say but all is well. Obviously, no side-effects would be great but so far it has been manageable.
Nana,
Hope things continue going relatively smoothly for Jakob.
We got to go home yesterday, dealing with low level yuckiness/pain/nausea, but nothing major. Blast count was down to 21 in her CSF today, so her team is cautiously optimistic about remission next week!
Nana, I am so glad to hear that Jakob's CNS is clear. That will make treatment a lot easier if they can just focus mostly on his marrow. I always kick my self (and feel like kicking Pete's onc), that the blasts were left long enough to travel from his marrow to his CNS. Even though Pete had hardly any in his CNS, it makes treatment a lot more tricky.
I really hope that Jakob handles this weeks chemo ok. And I'm so glad that your other kids are bringing you lots of comfort.
Thinking of you guys...
Bridget
Thanks so much for the update, Nana, and so glad it came with some good news. Your family is my thoughts every day. Karen, thinking of you and Leann every day as well. Hope they both are handling their treatments well, both physically and emotionally. So hard. So unfair. But... they both have amazing moms and families, and thoughts and prayers coming their way from all around the world, so here's to Jakob and Leann completely kicking leukemia's butt!
Kristen
Nana,
Thank you for keeping us updated, I'm thrilled that Jakob started the tx with clear LP. Enjoy your family being together, I'm sure It is very comforting to know that your non CK kids doing well, and the reason they are doing well, is because they have a strong and incredible mom.
Ronit
Nana, you sound like you have wonderful kids. But no wonder, given who their mother is. Glad to hear about the CNS being leuk-free. Thinking of you and Jakob constantly, hoping things go as smoothly as humanly possible.
You're amazing, Nana. I'm not surprised your kids are wonderful as well. I'm so pleased to hear about the clear LP--such good news. I'm thinking of Jakob and you and the rest of your family with hope and with admiration.
Suzan
SOOOOOOO happy to hear that!! Hang in there....cancer needs to be once again kicked to the curb.......maybe you need some new shoes to help do that job!
YOU CAN DO THIS!!
