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General => General Discussion => Topic started by: jammindude on January 22, 2023, 06:30:23 PM
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In case any of you didn’t read the “well wishes requested” thread. Just after Christmas we discovered that my eight month old baby granddaughter had a cancerous growth on her liver. It is too large to operate so she’s been going through chemotherapy.
This is their first child and my first grandchild and they are 3000 miles away down in Orlando Florida and I feel so helpless.
The good news is that it’s apparently not spreading so they are confident that if they can shrink it down, they can then operate on it and she should be out of the woods.
But with all the hospital stays, everything is piling up and getting out of hand. So they have just started a Go Fund Me to help with bills. Any little bit helps.
https://www.gofundme.com/f/violet-liver-cancer?utm_campaign=p_cf+share-flow-1&utm_medium=copy_link&utm_source=customer
(https://i.imgur.com/itHH8pt.jpg)
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Done.
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Yep. Same here.
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Donated and happy to do it.
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Done.
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What a beautiful little girl! Congratulations being so blessed with a beautiful granddaughter. So CRUSHED right now. I just cannot understand WHY THINGS LIKE THIS HAPPEN!!!!!! I'm with you and your family. Of course you will have my support. :heart
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Happy to donate.
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Done.
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$$$ sent. Will definitely keep this little sweetie in our prayers.
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Done.
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Done. Hope all goes as planned and this gets put behind your family.
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I want to thank you all for the outpouring of support. I’ve been a part of the dream theater online community for 25 years now, and you guys never cease to amaze me.
Thank you all. No matter if you gave or just thought of me. You guys mean a lot to me.
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I want to thank you all for the outpouring of support. I’ve been a part of the dream theater online community for 25 years now, and you guys never cease to amaze me.
Thank you all. No matter if you gave or just thought of me. You guys mean a lot to me.
:heart would it be too much to keep us updated? I understand either way. Donated and thinking of you and your family. :heart
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I will say this. They are back home for the first time. I guess chemo is going to be outpatient from here on out. I’ve been told that they are making progress and the cancer is shrinking. But as of right now, I don’t know how long it will take before they can get to a point where they can perform surgery.
Even I only get news in bits and pieces. They do let me read to the baby a bedtime story every night on FaceTime. So I do enjoy that. But they are dealing with a lot right now and so the news only comes in bits and pieces from this far away.
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I will say this. They are back home for the first time. I guess chemo is going to be outpatient from here on out. I’ve been told that they are making progress and the cancer is shrinking. But as of right now, I don’t know how long it will take before they can get to a point where they can perform surgery.
Even I only get news in bits and pieces. They do let me read to the baby a bedtime story every night on FaceTime. So I do enjoy that. But they are dealing with a lot right now and so the news only comes in bits and pieces from this far away.
:heart :heart :heart :heart :heart
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Done and I also shared the link on my FB
Prayers and well wishes for all of you buddy.
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Thinking of her and your family! Hoping things are going well. :heart
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Thank you guys. Thank all of you so much. I wish I had more news, but there’s not much new to report.
I know that my son and DIL both felt that staff at the general hospital they were at weren’t including them in conversations about treatment to the degree they would like. So they moved to Arnold Palmer children’s hospital (I think that’s the name) and they said they are much happier and being treated with more respect.
There was more chemo on Monday, but no updates yet on the progress of trying to shrink it down.
I do get to read her a bedtime story over FaceTime every night, and she seems to look forward to that. But she doesn’t smile much and it breaks my heart because I know the chemo makes her feel icky and she doesn’t understand why. :'(
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I am checking in to see how your granddaughter is doing. Still thinking and praying for her and your entire family. Hoping for some good news. :heart
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I’ve been trying to figure out what to say about this.
The baby is stable and being treated. Right now they are looking at the possibility of doing exploratory surgery to find out if the cancer can be removed or if she is going to need a transplant.
There is a lot of other drama going on right now that I’m planning on doing a more detailed post at some point. But a lot of things are happening that I’m not at liberty to go into detail on at this time.
Right now I’m just broken hearted because she is 10 months old now and she has spent almost 4 months in a hospital bed. She hasn’t even had the freedom to learn to crawl. She gets physical therapy to work her legs, but it’s just not the same.
Trust me. It might take a couple more months, but I will have a lot to vent at some point. Timing is an issue right now.
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Very sad and hard to read this update. Can't imagine the pain for you and the family. All you can do is keep fighting and stay strong.
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Thank you for the update, we are all here for you! :heart
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Praying for you all buddy.
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I can't even imagine...nothing but love for you all... :heart
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It says not accepting donations, but the total is over 5k! Nice! Hope all works out for the best.
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Jammin - my thoughts continue to be with you and your family. This has got to be a gut wrenching experience for you all and I can't even fathom how it must feel to be unable to have her home.
Never give up hope - kids are amazingly resilient. :heart
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This has been really difficult. Because I’m normally a very open book person. But extended family drama forced me to play many things closer to the chest than I care to.
I don’t want to get off in the weeds here, and I’m not really comfortable discussing the details, but the short version is that because of a complete crap storm of issues and circumstances, my granddaughter is a ward of the state, and my daughter-in-law’s aunt is her guardian. My son, my daughter-in-law, and her mother (the other grandmother) are only allowed to see her very limited and only under supervision.
Some of this is the state interceding because things looked bad, but were not entirely what they seemed…but then was grossly exacerbated by my son and daughter-in-law reacting as if they were on Jerry Springer and this lending credence to the circumstantial things that looked bad.
The whole thing is a mess and I can’t get into it any more than that.
But she has been going through chemo and as far as we know (they are limited in what they can share with us) she is having surgery next Tuesday in an attempt to remove the cancer from her liver and see if they can save enough of her existing liver that she won’t need a transplant.
We just flew down to Florida yesterday, and we are in a locked down wing at AdventHealth hospital in Orlando, and we had to be cleared by social workers so that we could visit her this week and into next week.
My son and daughter-in-law questioned the care that she is receiving here and they were trying to move her up to Boston Children’s Hospital, but they no longer have the legal authority to move her at all. So here she stays. The operation is next Tuesday and we will be here until next Thursday. Asking for continued good vibes
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Thinking about you, brother. Hope it all turns out well.
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Oh boy. That's awful.
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Oh man, that situation looks very strenuous on top of the health issues already. At the end of the day, all of you cares about the well-being of your granddaughter and we all here are hoping for the good vibes as well.
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Appreciate the update. Take care of each other.
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Man....that was tough to read. Feel for you and your family, this is a tough situation. Hoping the 'adults' involved get straightened out and will keep praying for that sweet little baby that her body responds to the treatments and she makes a full recovery.
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Keep your faith strong! I'm sending positive vibes and love to you and your family!!! :heart
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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.
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You guys were sent. Keep it up!
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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!
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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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You're in my thoughts bro. :heart
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You're in my thoughts bro. :heart
Same here!
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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
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^ Beautiful post.
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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?
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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.
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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!
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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!
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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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Hopefully the outcome is as positive as it sounds... :heart
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:heart :heart :heart :heart :heart :heart
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Ben, have you guys received the results? We’ve been praying for you all daily.
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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.
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Hey Ben, it's been some time.
I wanted to check in and see if you guys got the good news.
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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.
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Stay strong!
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I’m sorry you and your family are going through this. I’m feeling some good news coming.
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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.
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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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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
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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.
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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.
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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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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.
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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.
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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.