Update and a Thank you

[TFor3]

Re: Update and a Thank you

Sitting here reading this as my sons run around, I cannot imagine what you are going through. You and your daughter's strength is inspirational. Continued prayers and well wishes Game.

[TheGame]

Re: Update and a Thank you

Keep doing the positive things. Buddy better come through for her.

Possible good news on her Buddy / Cake Boss wish. Just read they're doing 2 new seasons.
If she gets that wish she could end up on an episode.

The other good news.
Thursday unless any treatments are missed will be her final day of radiation for this round.

She was in the hospital last Wednesday to Friday morning to test for seizure activity.
Her doctor that handles that said the test was pretty clean and he seen a lot of positive signs.
The seizure she had the Thursday before Christmas landed her in the hospital for 6 days.
During that stay the same test was done over 3 days and showed numerous small seizure activity.
This test showed almost no seizure activity.

[captjoe388]

Re: Update and a Thank you

Great to see some positive news. Praying for more good news.

[MacDaddy33]

Re: Update and a Thank you

Nice to hear that.I will keep praying.

[TheGame]

Re: Update and a Thank you

Ring the bell

Our daughter finished her radiation treatments this morning.
She had 42 of them in total.
Now we sit back and wait to see if it shrunk the tumor or more treatments are needed.
I think they said it would be about 4 to 6 weeks.
She is also off of the chemo pill until 2/23 when they will be upping her dose.

Here she is with the rest of the radiation team.

[captjoe388]

Re: Update and a Thank you

Glad to see the radiation is done. Praying for more improvement. She must be a tough kid.

[Jel]

Re: Update and a Thank you

What an inspiration! My continued thoughts and prayers for you, your daughter and the rest of your family!

And the Cake Boss thing would be amazingly cool! Hope it happens!

[JTLETTERMAN]

Re: Update and a Thank you

I'm so sorry... I've been away from the site... Please know that you and yours are in my prayers...

Scott

[TheGame]

Re: Update and a Thank you


We took Stephaine to see Barry Manilow last night for his "One Last Time" tour.
Best part was when our daughter put her arm around me during "I Am Your Child"
Video of that song is below. But it wasn't from the show last night.

[captjoe388]

Re: Update and a Thank you

Thanks for sharing. Hoping to hear good news soon. God Bless you and your family.

[TheGame]

Re: Update and a Thank you

Thanks for sharing. Hoping to hear good news soon. God Bless you and your family.

Thanks Joe.
We have not heard of any dates yet for testing to see how radiation did.
I know she meets with the radiation doctor on 3/10. I think before or after that date they will schedule a MRI.

[TheGame]

Re: Update and a Thank you

I know Captjoe will like this.


The doctors and the national chapter for Make A Wish have approved our daughters wish.
They're just waiting for Buddy to let them know the date.
Right now they think it will be in the summer. But could be sooner.
Buddy host 6 to 8 wish kids on the same day. Stephaine is #4 on the list.

Two weeks from today I'm taking her to see her favorite comedian Fluffy Gabriel Iglesias perform.
Then the following week she is going to see for the 3rd time Neil Diamond in concert.

Next week her and I will be launching our website we have been working on since December.
It documents her journey along with raising awareness and offering support for childhood cancer.

[captjoe388]

Re: Update and a Thank you

Bravo! Glad Buddy came through. Hope you both have a great time. SWEET CAROLINE!

[surfapilot]

Re: Update and a Thank you

I've been away since SB but came back today to find out how Stephanie and your family has been doing. Thanks for updating the info on her progress. Was glad to learn that she completed her radiation treatments and am now looking forward to more positive news in a couple of weeks. Also happy to hear that her seizure activity was down and hope that it continues that way. I see that she is starting up her chemo regimen again. My wife is a cancer survivor so I'm aware how challenging (depending on the type of pill) side effects can sometimes be. I do know that Stephanie has a terrific attitude so I'm sure she'll power through it all. Had to shed a tear as you described how she put her arm around you during that Barry Manilow song - definitely one of those precious moments in life that I'm sure you'll never forget. So cool how arrangements with Gabriel and Buddy appear to be falling into place, but after everything Stephanie has been through, she has certainly earned all the happiness she receives on her journey. As one of your many friends and family riding along with you on this "emotional roller coaster" of life I'm looking forward to the launch of your joint website - I know it will be very inspiring. I continue to cheer for her and believe that God will answer our prayers with His love and grace. Aloha!

[TheGame]

Re: Update and a Thank you

I've been away since SB but came back today to find out how Stephanie and your family has been doing. Thanks for updating the info on her progress. Was glad to learn that she completed her radiation treatments and am now looking forward to more positive news in a couple of weeks. Also happy to hear that her seizure activity was down and hope that it continues that way. I see that she is starting up her chemo regimen again. My wife is a cancer survivor so I'm aware how challenging (depending on the type of pill) side effects can sometimes be. I do know that Stephanie has a terrific attitude so I'm sure she'll power through it all. Had to shed a tear as you described how she put her arm around you during that Barry Manilow song - definitely one of those precious moments in life that I'm sure you'll never forget. So cool how arrangements with Gabriel and Buddy appear to be falling into place, but after everything Stephanie has been through, she has certainly earned all the happiness she receives on her journey. As one of your many friends and family riding along with you on this "emotional roller coaster" of life I'm looking forward to the launch of your joint website - I know it will be very inspiring. I continue to cheer for her and believe that God will answer our prayers with His love and grace. Aloha!

I appreciate you taking the time to write everything you did and also checking in via email.
My next post here in a couple of minutes will be about the site.
Today is the day we launched it.
During this entire journey our family has been on I have never once broken down in front of our daughter until today.
If you read the part about the Barry Manilow concert and have the sound up when you view the About Stephaine page you will understand why.
The look on her face when seeing her page and hearing that song was priceless.
She has only shed tears once until today. Seeing me break down brought her to tears.
The only other time she cried was when her brother did in front of her. But it took her 40 minutes to and that was after she calmed him down.
Those tears didn't last long. It was followed by happiness for getting to this day.
I love the site on desktop and laptop. But will need to make a better one for mobile devices.
The forum has a mobile theme and the site works on mobile devices it just leaves a few things out.