Author Topic: Help with jammindude’s granddaughter  (Read 4546 times)

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Offline PetFish

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Re: Help with jammindude’s granddaughter
« Reply #35 on: May 06, 2023, 06:18:08 PM »
We’ve only been here two days and all the nurses say she’s been a *completely* different baby since we arrived.

She’s napping right now, but we’ve been reading her Dr Suess and some Bible stories all day long. I think the personal interaction is what’s making the biggest difference.

Awesome!

Offline jammindude

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Re: Help with jammindude’s granddaughter
« Reply #36 on: May 08, 2023, 11:35:50 PM »
It’s 1:30am eastern time.

I couldn’t sleep, so I came back to the hospital to sit with her. Her operation will be at 7am-ish eastern. Prep will probably start sometime around 5ish.

I was in the hotel room just after 11pm when I suddenly just started freaking out. So I came over. The hotel is just across the street anyway.
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Online lonestar

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Re: Help with jammindude’s granddaughter
« Reply #37 on: May 09, 2023, 05:18:04 AM »
You're in my thoughts bro.  :heart

Offline hunnus2000

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Re: Help with jammindude’s granddaughter
« Reply #38 on: May 09, 2023, 07:44:10 AM »
You're in my thoughts bro.  :heart

Same here!

Offline MinistroRaven

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Re: Help with jammindude’s granddaughter
« Reply #39 on: May 09, 2023, 09:53:28 AM »
It’s 1:30am eastern time.

I couldn’t sleep, so I came back to the hospital to sit with her. Her operation will be at 7am-ish eastern. Prep will probably start sometime around 5ish.

I was in the hotel room just after 11pm when I suddenly just started freaking out. So I came over. The hotel is just across the street anyway.

I just read your message, and I want to let you know that my thoughts and prayers are with you, your granddaughter, and your entire family during this challenging time.

It's completely understandable that you're feeling anxious; the love you have for her is evident in your words. It's a testament to your strength and compassion that you're there by her side, even in the early hours of the morning.

Please remember, you're not alone in this. Lean on your friends and family for support - we are all here for you, wishing and praying for the best. I'm sure your presence is a comfort to your granddaughter, providing her with a sense of love and security that is invaluable.

Try to take care of yourself as well, even in these stressful times. It's important to stay strong for her. And if you need someone to talk to, remember, I am just a phone call or a text message away. (here's my number +58 412 7105033)

Sending all my strength and positive thoughts to you and your granddaughter. I'll be thinking about you both, and I'm looking forward to hearing about her quick recovery.

With the deepest sincerity,

Jorge
« Last Edit: May 09, 2023, 10:07:02 AM by MinistroRaven »

Offline Stadler

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Re: Help with jammindude’s granddaughter
« Reply #40 on: May 09, 2023, 09:59:59 AM »
^ Beautiful post.

Offline jammindude

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Re: Help with jammindude’s granddaughter
« Reply #41 on: May 09, 2023, 10:15:13 AM »
It’s 1:30am eastern time.

I couldn’t sleep, so I came back to the hospital to sit with her. Her operation will be at 7am-ish eastern. Prep will probably start sometime around 5ish.

I was in the hotel room just after 11pm when I suddenly just started freaking out. So I came over. The hotel is just across the street anyway.

I just read your message, and I want to let you know that my thoughts and prayers are with you, your granddaughter, and your entire family during this challenging time.

It's completely understandable that you're feeling anxious; the love you have for her is evident in your words. It's a testament to your strength and compassion that you're there by her side, even in the early hours of the morning.

Please remember, you're not alone in this. Lean on your friends and family for support - we are all here for you, wishing and praying for the best. I'm sure your presence is a comfort to your granddaughter, providing her with a sense of love and security that is invaluable.

Try to take care of yourself as well, even in these stressful times. It's important to stay strong for her. And if you need someone to talk to, remember, I am just a phone call or a text message away. (here's my number +58 412 7105033)

Sending all my strength and positive thoughts to you and your granddaughter. I'll be thinking about you both, and I'm looking forward to hearing about her quick recovery.

With the deepest sincerity,

Jorge

I wanted to take a quick moment to thank you very much for this beautiful post Jorge. Curious if that number works on WhatsApp?
"Better the pride that resides in a citizen of the world.
Than the pride that divides when a colorful rag is unfurled." - Neil Peart

The Jammin Dude Show - https://www.youtube.com/user/jammindude

Offline jammindude

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Re: Help with jammindude’s granddaughter
« Reply #42 on: May 09, 2023, 10:16:00 AM »
So…*visually* the resection was a success. They were able to remove the entire tumor and about 25% of a healthy liver seems to be doable. They had to remove her gallbladder in the process, but they said that’s normal for this procedure. There are some tests that need to be done to make sure they have a “zero margin” on what’s left of the liver. *IF* the tests come back positive, then she’s out of the woods cancer wise for now. But she will still need special care. If the tests come back negative, she will need a transplant. We will find out in a week or so. But right now confidence is high that they got it all.
"Better the pride that resides in a citizen of the world.
Than the pride that divides when a colorful rag is unfurled." - Neil Peart

The Jammin Dude Show - https://www.youtube.com/user/jammindude

Offline Grappler

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Re: Help with jammindude’s granddaughter
« Reply #43 on: May 09, 2023, 10:34:24 AM »
I haven't kept up with the thread recently, but I'd say that's good news for now!  My daughter was in the NICU when she was born - my wife delivered her and the doctors whisked her away 5 minutes later.  It was hard on us both and my natural instinct as a new father was to just take her home.  I learned I had to trust the medical professionals to do what they needed to do in those moments. 

The best advice they gave us was to be respectful to the staff, nurses and doctors, so we could continue to visit her.  They're not shy about keeping disruptive behavior out of the hospital.  We learned a lot from that experience.  We also believed that the personal interaction helped her turn the corner and she got to come home 10 days later.  Today is her 8th birthday - we re-read some old doctors notes that we had found filed away and at the time of her birth, she was in respiratory distress (under-developed lungs). 

Keep your chin up and take things as they come!

Offline MinistroRaven

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Re: Help with jammindude’s granddaughter
« Reply #44 on: May 09, 2023, 10:48:59 AM »
It’s 1:30am eastern time.

I couldn’t sleep, so I came back to the hospital to sit with her. Her operation will be at 7am-ish eastern. Prep will probably start sometime around 5ish.

I was in the hotel room just after 11pm when I suddenly just started freaking out. So I came over. The hotel is just across the street anyway.

I just read your message, and I want to let you know that my thoughts and prayers are with you, your granddaughter, and your entire family during this challenging time.

It's completely understandable that you're feeling anxious; the love you have for her is evident in your words. It's a testament to your strength and compassion that you're there by her side, even in the early hours of the morning.

Please remember, you're not alone in this. Lean on your friends and family for support - we are all here for you, wishing and praying for the best. I'm sure your presence is a comfort to your granddaughter, providing her with a sense of love and security that is invaluable.

Try to take care of yourself as well, even in these stressful times. It's important to stay strong for her. And if you need someone to talk to, remember, I am just a phone call or a text message away. (here's my number +58 412 7105033)

Sending all my strength and positive thoughts to you and your granddaughter. I'll be thinking about you both, and I'm looking forward to hearing about her quick recovery.

With the deepest sincerity,

Jorge

I wanted to take a quick moment to thank you very much for this beautiful post Jorge. Curious if that number works on WhatsApp?

Yes, it works on WhatsApp just fine.

Tons of love for you guys!

Offline Harmony

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Re: Help with jammindude’s granddaughter
« Reply #45 on: May 09, 2023, 01:23:31 PM »
So…*visually* the resection was a success. They were able to remove the entire tumor and about 25% of a healthy liver seems to be doable. They had to remove her gallbladder in the process, but they said that’s normal for this procedure. There are some tests that need to be done to make sure they have a “zero margin” on what’s left of the liver. *IF* the tests come back positive, then she’s out of the woods cancer wise for now. But she will still need special care. If the tests come back negative, she will need a transplant. We will find out in a week or so. But right now confidence is high that they got it all.

This sounds like the best possible news at this time.  Pulling for her - and for you and yours.   :heart
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Online lonestar

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Re: Help with jammindude’s granddaughter
« Reply #46 on: May 10, 2023, 01:41:13 PM »
Hopefully the outcome is as positive as it sounds... :heart

Offline Glasser

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Re: Help with jammindude’s granddaughter
« Reply #47 on: May 10, 2023, 02:02:59 PM »
 :heart :heart :heart :heart :heart :heart

Offline MinistroRaven

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Re: Help with jammindude’s granddaughter
« Reply #48 on: May 19, 2023, 11:29:50 AM »
Ben, have you guys received the results? We’ve been praying for you all daily.

Offline jammindude

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Re: Help with jammindude’s granddaughter
« Reply #49 on: May 19, 2023, 02:42:48 PM »
Not yet. I was told by one of the caseworkers that even though the surgeon who flew in from Pittsburgh may have said a week or so, the Florida labs typically take around two. Probably sometime next week.
"Better the pride that resides in a citizen of the world.
Than the pride that divides when a colorful rag is unfurled." - Neil Peart

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Offline MinistroRaven

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Re: Help with jammindude’s granddaughter
« Reply #50 on: August 02, 2023, 01:43:34 PM »
Hey Ben, it's been some time.
I wanted to check in and see if you guys got the good news.

Offline jammindude

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Re: Help with jammindude’s granddaughter
« Reply #51 on: August 02, 2023, 03:12:14 PM »
Hey Ben, it's been some time.
I wanted to check in and see if you guys got the good news.

For the benefit of anyone else who is wondering:  I had hoped to update everyone last week… but unfortunately we are in “holding pattern” mode at the moment.  I’ve been anxious to give an update, but the prudent thing right now is to wait.

I hope to have a public update very soon.
"Better the pride that resides in a citizen of the world.
Than the pride that divides when a colorful rag is unfurled." - Neil Peart

The Jammin Dude Show - https://www.youtube.com/user/jammindude

Offline PetFish

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Re: Help with jammindude’s granddaughter
« Reply #52 on: August 02, 2023, 08:55:59 PM »
Stay strong!

Offline Glasser

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Re: Help with jammindude’s granddaughter
« Reply #53 on: August 04, 2023, 12:03:34 AM »
I’m sorry you and your family are going through this. I’m feeling some good news coming.

Offline jammindude

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Re: Help with jammindude’s granddaughter
« Reply #54 on: September 15, 2023, 09:57:28 AM »
Ok. Here is the update you’ve all been waiting for. Things have been very weird for a very long time, but they are settling down now.

The whole ordeal started last December and it’s made our whole year one of the most stressful in our entire lives. Things got especially weird in February when my son and daughter in law missed some follow up chemo sessions. There are huge debates from the state vs my son and DIL (and her whole family) about the way this went down. I’m 3000 miles away, and I wasn’t a witness to any of it, so I refuse to make any public judgements on the matter. But the end result was that Violet was taken away from her parents during a welfare check where Florida Department of Child and Families (DCF) didn’t like what they saw.  My DIL immediately enlisted her aunt as a guardian, and Violet was placed in an isolated section of the hospital with restricted visitation. The state was concerned enough about things that my son and DIL were restricted to one hour *supervised only* visits, once a week. And Violet’s grandmother (DIL’s mom) was not allowed any visitation at all. The aunt and uncle and also the Guardian Ad Litem would FaceTime us and send us pictures and videos on a regular basis and everything was fine. Though we had some concerns as the aunt and uncle (and actually, my DIL’s whole family) expressed major distrust and disdain for doctors, hospital staff, and the state. Claims that no one knows what they are doing….worst hospital ever…we need to get her out of here…etc etc) This led to putting down a huge retailer for a lawyer in an attempt to force Violet to be transferred to Boston Children’s because it is one of the best in the country, and it was felt that staying in Florida was going to be detrimental to Violet’s ongoing treatment. We contributed a decent amount to help retain this lawyer…which turned into a huge waste of money because the motion was denied and the lawyer stopped working when the money ran out.

In May, we flew down for a visit for the operation to remove the tumor from Violet’s liver. Upon arrival, we personally met with the GAL, hospital staff, and even the doctors briefly as they would come in on their rounds. And everyone seemed friendly and completely competent and it seemed like Violet was receiving the best possible care that could be had.

All we did…was just be NICE to everyone. And we would turn OFF the TV when we visited Violet and read to her and sing to her and play with her. (I read so much Dr Suess on that trip I practically memorized them. LOL)

It was about 3 days into our one week trip, after observing us for awhile, that the GAL began to inquire if we would be willing to take care of Violet. We said that if the state thought that was best, we would be willing to accept that responsibility.

So Florida DCF filed for a transfer and ordered a home study. When the Florida family learned of this, they conference called us and strongly told us that we NEEDED to tell Florida that we did not want Violet. We calmly stated that we could not, in good conscience, do such a thing. That phone call happened in late May after we had returned home. We didn’t hear another word from anyone down there for 3 months.

Being 3000 miles away, and receiving almost no news or updates was absolutely maddening. There were tons of hoops to jump through to get our home child proofed and ready just in case she was suddenly sent here.

But the end result was that just this last Monday, Violet was released to the guardianship of the local aunt and uncle. She is so far cancer free, but she will need a ton of follow up visits, and a lot of therapy. She’s 15 months old, and has been confined to a hospital bed and getting formula through a feeding tube for over half her life. So she needs to learn how to crawl, walk, and eat. But she’s making wonderful progress.

The release stipulated that my wife and I have unsupervised visitation. So one of the upshots of all this is that the court is not ignorant of our existence, and knows that we have everything we need to take care of Violet if anything should happen.  My son and DIL still have to be supervised, but they are complying with that and checking in the the GAL often.

We had a FaceTime visit last night and hopefully another one this weekend and everyone is getting along and playing nice.

Thank you to everyone here for your patience and support. As you can see, there was a ton of crap going on that I didn’t really want to talk about while it was happening. But certain things seemed ok to reveal once the dust settled.

And this may not be over yet. But we are honestly happy because (despite what some people in Florida might be thinking) we were never trying to take Violet away. We want what’s best for her, and made ourselves available if necessary. We were concerned about some behaviors we saw, but what we wanted more than anything else was for my son and DIL to get their heads out of their butts and be more responsible. But it sounds like they might be doing that now, so if that is the case then WONDERFUL.
"Better the pride that resides in a citizen of the world.
Than the pride that divides when a colorful rag is unfurled." - Neil Peart

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Offline Lonk

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Re: Help with jammindude’s granddaughter
« Reply #55 on: September 15, 2023, 11:12:22 AM »
But the end result was that just this last Monday, Violet was released to the guardianship of the local aunt and uncle. She is so far cancer free, but she will need a ton of follow up visits, and a lot of therapy. She’s 15 months old, and has been confined to a hospital bed and getting formula through a feeding tube for over half her life. So she needs to learn how to crawl, walk, and eat. But she’s making wonderful progress.

This is great news! hope her recovery and learning progress continues  :tup
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Offline Glasser

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Re: Help with jammindude’s granddaughter
« Reply #56 on: September 15, 2023, 11:55:44 AM »
So heartbreaking to read this but the fact the she is doing well is AMAZING! Im so so so sorry you are going through all of this. I'm hoping this is all a horrible distant memory for you one day with nothing but the best outcome! We are all here for you!  :heart

Offline Skeever

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Re: Help with jammindude’s granddaughter
« Reply #57 on: September 15, 2023, 12:04:30 PM »
Sounds like you have ALL been through a lot jammin. I hope being able to get it out a bit here helps. If it means anything, I don't really hold anyone in your story guilty of anything based on what you said. I can only imagine what having something like that happen to someone so young does to the minds of a young family. And it sounds like the friction is all stemming from desire to care for Violet, for whatever that may be worth.

Offline MinistroRaven

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Re: Help with jammindude’s granddaughter
« Reply #58 on: September 16, 2023, 09:42:37 PM »
Ben,
Thank you for sharing this update. It's heartening to hear that Violet is making progress and has been released to the guardianship of her local aunt and uncle. Your willingness to step in and support, if necessary, is commendable. I hope that Violet continues to thrive and that your son and daughter-in-law find their way towards responsible parenting. Wishing you all the best in the ongoing journey ahead.

Offline XJDenton

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Re: Help with jammindude’s granddaughter
« Reply #59 on: September 17, 2023, 03:07:45 AM »
Glad to hear everything is on an upwards trajectory. Hope it stays that way. Sending my best wishes to you all.
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Offline MinistroRaven

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Re: Help with jammindude’s granddaughter
« Reply #60 on: September 17, 2023, 07:46:15 PM »
Hey jammindude I know Violets too young, but read this to her when you have a chance.

To Violet:

In a world of courage, young and small,
There's Violet, who stood tall.
At just fifteen months, a tender soul,
She faced battles that took a heavy toll.

A journey through shadows, uncertainty's embrace,
A tiny heart, a warrior's grace.
With a liver's challenge, she fought the fight,
In the darkest hours, she found her light.

In hospital beds, where days were long,
She proved that in her, resilience was strong.
Her spirit unwavering, her smile so bright,
Embracing each challenge, day and night.

With feeding tubes and a heart so brave,
She conquered what most couldn't save.
To crawl, to walk, and to eat once more,
Her determination we can't ignore.

Now cancer-free, a beacon of hope,
Learning to cope, and finding her scope.
A reminder that in life's grand scheme,
Even in darkness, we can still dream.

Here's to Violet, true inspiration,
Strength's symbol, source of elation.
May her future be filled with grace,
As she continues to shine, life's embrace.

Offline jammindude

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Re: Help with jammindude’s granddaughter
« Reply #61 on: September 17, 2023, 09:08:37 PM »
Hey jammindude I know Violets too young, but read this to her when you have a chance.

To Violet:

In a world of courage, young and small,
There's Violet, who stood tall.
At just fifteen months, a tender soul,
She faced battles that took a heavy toll.

A journey through shadows, uncertainty's embrace,
A tiny heart, a warrior's grace.
With a liver's challenge, she fought the fight,
In the darkest hours, she found her light.

In hospital beds, where days were long,
She proved that in her, resilience was strong.
Her spirit unwavering, her smile so bright,
Embracing each challenge, day and night.

With feeding tubes and a heart so brave,
She conquered what most couldn't save.
To crawl, to walk, and to eat once more,
Her determination we can't ignore.

Now cancer-free, a beacon of hope,
Learning to cope, and finding her scope.
A reminder that in life's grand scheme,
Even in darkness, we can still dream.

Here's to Violet, true inspiration,
Strength's symbol, source of elation.
May her future be filled with grace,
As she continues to shine, life's embrace.

Words absolutely fail me.

Thank you so much. From the bottom of my heart. I’m sharing with the whole family right away.
"Better the pride that resides in a citizen of the world.
Than the pride that divides when a colorful rag is unfurled." - Neil Peart

The Jammin Dude Show - https://www.youtube.com/user/jammindude

Offline jammindude

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Re: Help with jammindude’s granddaughter
« Reply #62 on: September 17, 2023, 09:18:33 PM »
My wife and I want to try to maybe figure out a way that we can print this out and have it framed and put on her bedroom wall when she actually gets a bedroom.
"Better the pride that resides in a citizen of the world.
Than the pride that divides when a colorful rag is unfurled." - Neil Peart

The Jammin Dude Show - https://www.youtube.com/user/jammindude