Sad news UPDATED 1/25

[dizzycooks]

Thanks for the update. I cannot imagine all you’ve been dealing with. It sounds like he’s handling it as well as you could possibly imagine.
When you get home will you be able to stay with him for appointments or will your parents be able to take him so you can work? Hoping for the best for you all.

[nicolewi]

I'm so, so sorry you are going through this. The signing "all done" part breaks my heart. I had no idea just how terrifying and urgent the start of this was for you, with the helicopter transport.

I'll have to think about quotes. I've got nothing for now, but you are doing the right things for him, even though it's super hard to watch.

[jag01]

I can’t imagine how terrifying all of it was. Glad to hear you have a good support system around you. Take care of yourself.
“You are stronger than this challenge and this challenge is making you even stronger “

[lexus]

Thank you for updating. W is so lucky to have a strong and supportive momma like you.

[charlatti]

So much love to all of you. Thank you for updating.

[court26]

Even though I am not a well-known poster on here, I was hoping for an update as well! I can only imagine the whirlwind this whole thing has been for you. What a special little guy you have. We are all thinking of you.

[mamaalysson]

So much love to you, Nanda. W is so lucky to have you as his mama. Continuing to send all the good juju your way.

[erbear]

Hang in there, mama. Your update is encouraging.

A couple of my favorites:
"The stronger the wind, the tougher the trees." - Douglas Malloch

"Though she be but little, she is fierce." - Shakespeare

"Good morning. Eyes up. Hearts up. Compassion on full blast. (sips coffee). Let's go." - Lin-Manuel Miranda

And my personal favorite: "Option A is not available. So let's just kick the shit out of Option B." - Sheryl Sandberg

Thinking about you all.

[usm]

NandaB, some that helped me through our entire journey

Don’t forget you are human. It’s okay to have a meltdown. Just don’t unpack and live there. Cry it out and then refocus on where you are headed. - No idea

Listen to the mustn,ts child
Listen to the don’ts
Listen to the shouldn’ts
The impossible’s the won’ts
Listen to the never haves,
Then listen close to me...

Anything can happen child
Anything can be
- shel Silverstein

I am not afraid of storms For I am learning to sail my ship - Louisa May Alcott


And Grace- our neurologist

Allow yourself grace, and allow others grace. It became my mantra, you are going through shit. Cry, lash out , you don’t have to apologize. Don’t pressure yourself to do more. It also helped me to give everyone room to deal with what we were going through. Basically guilt and resentment had no room and we only allowed grace.

I don’t know if you are home yet but you may qualify for home nursing care to help.

[NandaB]

WE'RE HOME!

Thank you all again for your kind words and support. It means the world to me and was really helpful during some loooooong nights the last few weeks.

After 20 days we got to come home late Monday night. We are still in the first stage of treatment, induction, which is pretty intense, and often done inpatient the whole 4 weeks. Because he was doing well in terms of finally over the flu and pnemonia, and his blood test #s looked good and his blood sugar counts stabilized (because of course he developed secondary diabeetus due to the steroids) they let us come home. It has legit been equal parts relieving and terrifying. Believe it or not I miss the "crutch" of the nurses, who were all SO wonderful. One even hugged me and assured me that these things happen when I completely fell apart after I accidently got his iv stuck on the crib rail and pulled the picc line out just enough to render it useless. It sure is great to have my own family all back at home.

So we go today back to CHLA for his day 15 iv chemo, and again next Thursday. Thurs after that he has another bone marrow biopsy and lumbar puncture to make sure the treatment was effective and then we go on to the next phase. Not actually sure what that entails, just doing one day at a time.lol.

As long as all goes well I plan to go back to work after his bone marrow & LP, which is Feb 7th. Luckily my H has some work flexibility so he will take natalie to preschool amd my mom will just stay here with w. He doesn't need to be dragged around town, and my mom shouldn't really pick him up, but he's too weak to walk on his own.

The poor guy has been such a trooper.

[momin2013]

Thank you so much for updating - glad to hear you guys are all home!

Continued positive thoughts, hugs, and well wishes your way as you navigate this journey - one day at a time indeed!

[penguingrrl]

Glad to see such a good update!!!

[gastro]

Glad you are able to be home now and that W is handling everything so well. Thinking of you and your family.

[lexus]

Glad to hear things are going so well. Your family will continue to be in my thoughts!