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(10,484 posts)
Tue Jul 25, 2023, 10:48 PM Jul 2023

An update on my granddaughter, The Warrior Princess

First the good news: Cassandra and my daughter-in-law are at the Pittsburgh Children's Hospital. The surgical team has given the okay for a liver transplant (there was even discussion of a possible liver resection, but after a final MRI it was determined a resection wouldn't fly).

We're now waiting for insurance approval.

Bad news: the insurance delay is making the entire family, extended family and close friends Nervous Nellies. And then additional information: the aggressive chemo therapy (which has pushed the cancer into remission) has damaged the baby girl's kidneys.

Which means? She is likely looking at renal failure in the future.

I have this sinking feeling we're playing whack-a-mole. Correct one thing and then something equally awful raises its ugly head.

I want to be as courageous as my three-year old grand daughter. I want to be Miss Smiley Face pushing through every dire prognosis, dancing down hospital corridors to Beyonce and/or Taylor Swift, embracing every moment like it's the best thing ever.

But I'm not.

Instead, I'm composing last words for my grand-daughter's funeral, searching the words of others for answers I know I'll never really find. Yes, I'm a bookworm. Whenever I've been faced with the inexplicable, the sort of things you can't get heart or mind around, I run to books. It's just what I do; it's what I've always done, even as a child.

I'm beginning to think I stink at this role as Nan because I never allowed negative thinking when my son suffered a brain injury, was told several times by the medical team that his future--at best--was long-term nursing care.

They were wrong. But this?

My reading list has concentrated on hope, faith, grief and joy, universals that seem to sum up the present moment.

As for Cassandra? She's still dancing. I need to learn those steps.

An update on my granddaughter, The Warrior Princess (Original Post) peggysue2 Jul 2023 OP
I wish for you all peace and strength. Solly Mack Jul 2023 #1
Thanks for that, Solly Mack peggysue2 Jul 2023 #3
Everyone is out of their depth in a situation like this. Sounds to me like you're coping as well as Karadeniz Jul 2023 #2
Thanks, Karadeniz peggysue2 Jul 2023 #6
I am sorry H2O Man Jul 2023 #4
Thanks so much, H2O peggysue2 Jul 2023 #7
Being in unchartered areas H2O Man Jul 2023 #16
Your words are always wise, H2O Man peggysue2 Jul 2023 #30
Hang in there, and I'm sure you're the best Nan ever peggysue2 Hugh_Lebowski Jul 2023 #5
Thanks, Hugh. peggysue2 Jul 2023 #9
I am so sorry that you and your family are going through this. brer cat Jul 2023 #8
Thanks, brer cat peggysue2 Jul 2023 #12
I am sending you love. Maybe you could use an anthem. MLAA Jul 2023 #10
Love the musical selections, MLAA peggysue2 Jul 2023 #19
Sending strength and healing vibes. I am so sorry this is happening. I can't imagine. onecaliberal Jul 2023 #11
Thanks for the good vibes and blessing, onecaliberal peggysue2 Jul 2023 #20
Dance with her. That you would question whether you are a good Nan means you are. Hugs to LoisB Jul 2023 #13
I caught those hugs, Lois! peggysue2 Jul 2023 #22
Wishing all the best for your Granddaughter Cassandra. Fla Dem Jul 2023 #14
Thanks so much, Fla Dem peggysue2 Jul 2023 #23
Sending strength, love and positive thoughts your way. StevieM Jul 2023 #15
Thanks, Stevie! peggysue2 Jul 2023 #24
Best wishes to you and your granddaughter, PeggySue TdeV Jul 2023 #17
Thank you, TdeV peggysue2 Jul 2023 #25
Sending my best vibes and wishes malaise Jul 2023 #18
Thank you, Malaise peggysue2 Jul 2023 #27
I wish you and your family and especially your granddaughter a wealth of healing ismnotwasm Jul 2023 #21
Thank you, ismnotwasm peggysue2 Jul 2023 #28
Sending only positive vibes for Cassandra and the whole family... Spazito Jul 2023 #26
I'm liking these vibes, Spazito peggysue2 Jul 2023 #29
Oh my gosh Peggy... sending love and good thoughts to everyone Peacetrain Jul 2023 #31
Awww, thank you Peacetrain peggysue2 Jul 2023 #33
I wish her and your family the best. Wingus Dingus Jul 2023 #32
Thanks, Wingus! peggysue2 Jul 2023 #34
I will be praying for your granddaughter. LetMyPeopleVote Jul 2023 #35
Thank you, LetMyPeopleVote peggysue2 Jul 2023 #36
There are no words when this kind of stuff happens. 1WorldHope Jul 2023 #37
Awww, thank you for that 1WorldHope peggysue2 Jul 2023 #38
Gladly 1WorldHope Jul 2023 #46
Sending love and prayers. redwitch Jul 2023 #39
Thanks, redwitch peggysue2 Jul 2023 #41
PeggySue, i'm so Sorry.. Cha Jul 2023 #40
I know you are, Cha peggysue2 Jul 2023 #42
Dear PeggySue.. For Cassandra.. Cha Jul 2023 #45
Thanks once again, Cha peggysue2 Jul 2023 #51
💙💙💙💙💙💙💙💙 Cha Jul 2023 #52
My Brother is going thru a similar incident right now. tiredtoo Jul 2023 #43
tiredtoo peggysue2 Jul 2023 #53
How can the workers at insurance companies tolerate this??????? nt LAS14 Jul 2023 #44
Sadly, LAS14, the insurance companies and their agents make these decisions far too often peggysue2 Jul 2023 #55
I'm so sorry!! Medicine should not be driven by profit! nt LAS14 Jul 2023 #57
No, it should not. peggysue2 Jul 2023 #58
Whew IbogaProject Jul 2023 #47
By "given the OK" - I assume you mean to be listed? Ms. Toad Jul 2023 #48
What a generous offer, Ms. Toad peggysue2 Jul 2023 #56
Praying... Trueblue Texan Jul 2023 #49
We pray to the same spirits, Trueblue peggysue2 Jul 2023 #59
I am so very sorry ... UpInArms Jul 2023 #50
Thanks, UpInArms peggysue2 Jul 2023 #60
Sending good vibes in her direction MissB Jul 2023 #54
Wow! peggysue2 Jul 2023 #61

Solly Mack

(90,638 posts)
1. I wish for you all peace and strength.
Tue Jul 25, 2023, 10:52 PM
Jul 2023

I'm so sorry this is happening to your granddaughter and to your family.


(10,484 posts)
3. Thanks for that, Solly Mack
Tue Jul 25, 2023, 10:57 PM
Jul 2023

I've just been in a dark place the last several days. The news on the baby's kidney damage just broke me. I'm trying to keep a happy, hopeful spirit for the sake of my son and daughter-in-law. But it's really hard.

Appreciate the note.


(21,727 posts)
2. Everyone is out of their depth in a situation like this. Sounds to me like you're coping as well as
Tue Jul 25, 2023, 10:55 PM
Jul 2023

anyone could ! Sending good thoughts to the family...

H2O Man

(72,695 posts)
4. I am sorry
Tue Jul 25, 2023, 10:57 PM
Jul 2023

that you & your family are experiencing this. The only thing I can think of to say is that there are no right or wrong ways to deal with such situations. Everyone has a role, and they will be different on an individual level. I'll add that you can't take care of others if you don't take care of yourself, so do what you need to do. And keep in mind that all good people wonder if they are doing enough, if they are doing it correctly, doubting themself, and having some guilty feelings that they should be doing something else, something more.

Take care of yourself. And you have friends here if you need to vent. Please count me as one who will always be available to talk.


(10,484 posts)
7. Thanks so much, H2O
Tue Jul 25, 2023, 11:07 PM
Jul 2023

I'm normally pretty upbeat and optimistic, often annoying my friends and family. LOL. But this has definitely taken a toll.

Of course the real toll has been on my son and daughter-in-law. There is nothing worse than having a seriously sick or injured child. It's a nightmare.

But I take your words seriously. Because I know they're true. I've even repeated the same words to my son.

Now, if only I could take my own (and your) advice.

Thanks, too, for the offer to talk. I may take you up on it in the future!

H2O Man

(72,695 posts)
16. Being in unchartered areas
Wed Jul 26, 2023, 12:39 AM
Jul 2023

is always difficult. And you are right about your son and daughter-in-law. So by the exact same reasoning, it is extremely hard for you -- because you are your son's mother, your daughter-in-law's mother-in-law, and your granddaughter's grandmother.

From everything I know from this forum, you are indeed an upbeat and optimistic lady. One I always both appreciate and respect. And when it comes to annoying family and friends, I can definitely relate. In my case, I think it is genetic, and considered an art form among the Irish. So I view it as a strength if you annoy them at times!

Yet we are all human, and in nightmares, it is essential that we understand and accept that we can be other than strong, even to feel helpless. Because there are times when we are indeed helpless to change the horrors and severe pain of being human. In my extended family, I got the unspoken but expected of being strong. I think many of my relatives think I am. But that's just the way I postpone dealing with what I am feeling. I know myself well enough to know most of my weaknesses. (That's why I have to thinkabout taking my own advice!)

I'm thinking -- and tell me if I'm wrong -- that writing the OP, and responding to people here, might have provided a small but important outlet. So be sure to continue doing that -- small things are important at this time.


(10,484 posts)
30. Your words are always wise, H2O Man
Wed Jul 26, 2023, 11:11 AM
Jul 2023

In this case, I think you're inside my head. I, too, have the Irish genes tempered by moody Welsh genetics. It's the Welsh relatives I tend to annoy the worst. LOL.

Right, too, that writing this Nan howl and responding to members helped. That's been my experience with writing which is, I believe, a form of thinking, feeling, working things out. It does provide comfort. In fact, I feel better this morning than I have for the last several days.

I'll put my eulogy and memorial musings back in my desk drawer. I know where they are if I need them. But for the moment, I need to concentrate on the present. And those tiny dancing feet.

Doesn't mean I won't skid off the rails in the future. But at least right now, I'm recharged.

Thank you, friend!



(33,643 posts)
5. Hang in there, and I'm sure you're the best Nan ever peggysue2
Tue Jul 25, 2023, 10:57 PM
Jul 2023

The Warrior Princess will PREVAIL!

Wasn't there a gofundme, or the like?


(10,484 posts)
9. Thanks, Hugh.
Tue Jul 25, 2023, 11:20 PM
Jul 2023

Yes, there was a GoFundMe, a godsend for my son and family. My husband and I are helping as much as we can, but this is bigger than we are. In so many ways.

Appreciate the encouragement. I hope I'm a good Nan. I just feel I'm floundering but maybe that's perfectly normal under the circumstances. The only thing I know with any certainty? Cancer sucks!

As for the Warrior Princess? She will prevail, one way or the other because she's made a mark on the hearts of so many people--family, friends, extended community, even the medical teams. Pretty remarkable.

brer cat

(23,198 posts)
8. I am so sorry that you and your family are going through this.
Tue Jul 25, 2023, 11:18 PM
Jul 2023

Take care of yourself so that you and Cassandra can dance together!


(6,507 posts)
13. Dance with her. That you would question whether you are a good Nan means you are. Hugs to
Tue Jul 25, 2023, 11:37 PM
Jul 2023

you and Cassandra. I am hoping for the best outcome and that you will dance with her at her graduation, wedding, first baby and all the milestones of her long life. That is my wish for you and her.


(10,484 posts)
22. I caught those hugs, Lois!
Wed Jul 26, 2023, 10:26 AM
Jul 2023

Thanks. And yes, I have danced with Cassandra. My only problem is keeping up with her. LOL.

Fla Dem

(22,575 posts)
14. Wishing all the best for your Granddaughter Cassandra.
Tue Jul 25, 2023, 11:43 PM
Jul 2023

May this transplant be super successful and any medical issues in the future be resolved favorably and may she have a wonderful life.
My heart goes out to you and your family.💕


(10,484 posts)
23. Thanks so much, Fla Dem
Wed Jul 26, 2023, 10:32 AM
Jul 2023

We're all hoping the transplant will give Cassandra another chance, a chance she deserves after so many medical interventions. Another chance to tap those tiny feet, too.


(10,489 posts)
15. Sending strength, love and positive thoughts your way.
Wed Jul 26, 2023, 12:11 AM
Jul 2023

I will hope and pray that your granddaughter pulls through this challenging time.


(10,484 posts)
27. Thank you, Malaise
Wed Jul 26, 2023, 10:43 AM
Jul 2023

I'm collecting all these good vibes, blessings and wishes and weaving them into a hope shield. It's today's armor against future dark moments.


(10,484 posts)
29. I'm liking these vibes, Spazito
Wed Jul 26, 2023, 10:47 AM
Jul 2023

Thanks for adding more to my basket which was pretty empty last night.


(10,484 posts)
36. Thank you, LetMyPeopleVote
Wed Jul 26, 2023, 02:36 PM
Jul 2023

We're praying, too. In fact, lots of prayer groups have been called into action. I'm not a particularly religious person, not in a conventional sense. My best friend has been whipping up the prayer groups. She's good at it!

I ran across a poem entitled "Moses," the first line of which reads:

Give me your hand. We have to cross the river and my strength fails me.

Something about that beginning drew me in immediately. There's beauty in words and the spaces in-between.

In loving thoughts, too. So, I thank you for that.


(561 posts)
37. There are no words when this kind of stuff happens.
Wed Jul 26, 2023, 03:47 PM
Jul 2023

My gut reaction is almost always anger. I don't know you, but I'd hug you if I were there. It's an unbelievable universe we live in, there must be a comforting answer somewhere in it. Blessings on you, your little girl, and her poor parents.


(10,484 posts)
38. Awww, thank you for that 1WorldHope
Wed Jul 26, 2023, 04:33 PM
Jul 2023

I found myself uncharacteristically angry at my last GP appointment. I was trying to explain the situation to my doctor, a woman who has absolutely no connection to Cassandra's case. I was spitting nails, so much so that I stopped suddenly and apologized. She turned around and said quite plainly, "You don't owe me or anyone else an apology."

That cleared the air but it's also an example of the rollercoaster nature of these things--up one day, down the next, then ready to strangle your doctor on day 3. LOL.

Btw, I'll take your hug in absentia.


(14,874 posts)
39. Sending love and prayers.
Wed Jul 26, 2023, 04:37 PM
Jul 2023

I cannot imagine what this must be like. I am a grandmother too. Hang in there as best you can.


(10,484 posts)
41. Thanks, redwitch
Wed Jul 26, 2023, 04:42 PM
Jul 2023

Yeah, this is when being a Nan is challenging, to say the least. Thanks for the support!


(2,930 posts)
43. My Brother is going thru a similar incident right now.
Wed Jul 26, 2023, 05:09 PM
Jul 2023

His 8 year old grandson has an un-diagnosed brain lesion. While i cannot experience your pain I can feel it in my heart. Sending positive thoughts your way.


(10,484 posts)
53. tiredtoo
Wed Jul 26, 2023, 10:33 PM
Jul 2023

How awful for your brother, tiredtoo. So many little ones sick or dying. Heartbreaking for all the families caught up in the nightmare.

Thank you for the positive thoughts and support. I'm taking my measure, and then sending them back to you and your family.

Thank you.


(10,484 posts)
55. Sadly, LAS14, the insurance companies and their agents make these decisions far too often
Wed Jul 26, 2023, 11:15 PM
Jul 2023

One of the reasons for the delay in my update (which I promised everyone) was because the insurance company initially denied the medical transport fees to Pittsburgh. Because CHOPs had first refused a transplant (they later walked the decision back), the insurance company felt they had an argument that transport, consultation fees and any talk of surgery was unrealistic. My daughter-in-law spent countless hours on the phone calling everyone she could think of. Because Cassandra has had so many medical interventions, my DIL had developed a relationship with several of the agents, underwriters, whatever. She begged, the way only a mother can beg.

Ultimately, the insurance company reversed its decision. Very, very rare. But it cost the baby 10 precious days before she could be seen by a surgical team who said, 'we're going to get this done.'

Now, we're right back in the same position. Will the insurance cover the surgery or not? Will the recent news on her chemo-related kidney damage bias their decision? How much of a delay (as the clock tick-ticks) until the insurance is approved and Cassandra is officially put on the donor list? Though the child appears stable and in good spirits (amazingly so), time is of the essence. If there's another insurance refusal, that could easily be the ballgame.

It's positively nightmarish for my son and his wife. Yet, they're holding the line. And fortunately, so is our baby girl.

Our medical/insurance system needs a major overhaul!


(10,484 posts)
58. No, it should not.
Thu Jul 27, 2023, 10:45 AM
Jul 2023

All you need is one serious illness or injury to understand how screwed up the whole system is.

Appreciate the support!


(2,390 posts)
47. Whew
Wed Jul 26, 2023, 06:27 PM
Jul 2023

We can hope that her youth will allow her to heal even better than the forecasts. Hoping things are preparing to turnaround favorably for you all very soon.

Ms. Toad

(33,028 posts)
48. By "given the OK" - I assume you mean to be listed?
Wed Jul 26, 2023, 07:47 PM
Jul 2023

After listing it can be a short - or long process. If your granddaughter is eligible, you might have your daughter-in-law ask about a live donor. A 3-year old wouldn't need an entire liver, and it is often a shorter path than waiting for a pediatric liver.

Don't fret too much about the kidneys, for now anyway. Dialysis isn't fun, but it allows most people to live long enough for a transplant - if that becomes necessary.

You will be playing whack-a-mole. My daughter has a disease (PSC) that means she will likely need one (or more) liver transplants in her life. We're part of a national group - so I know a lot of folks with liver transplants (I believe the one with the most has five - because the disease keeps returning, not because the transplant failed). And I know a few who got transplants in the first years of their life because of biliary atresia. A liver transplant is basically trading a fatal chronic illness for a chronic condition that can be managed.

The little ones seem to adjust pretty well (as you've seen with the rest of Cassandra's challenges). My daughter didn't realize how serious her initial illness (UC) was until she was in high school, and the time her risk for colon cancer increased to the point at which she needed a screening colonoscopy. As to the transplant, there will be rejection scares - particularly until all of the medications get properly adjusted. But it won't stop her from living a full life.

If you (or your kids) are on facebook, and are interested, there is a support group for parents of children with liver diseases/transplants. If you're interested, send me a message here and I can invite you to the group. (I'm not very active there, since my daughter was an early teen when she started having symptoms, but was 18 when she was diagnosed. Most of the active folks have little ones.) And if you just want to talk to someone else who is dealing with the anxiety around this process - feel free to reach out.


(10,484 posts)
56. What a generous offer, Ms. Toad
Wed Jul 26, 2023, 11:44 PM
Jul 2023

And a wealth of information.

I don't do facebook myself but my daughter-in-law is a devotee. Could you send me the address/name via DU's direct messaging board? I'll pass it along because information and personal experience with these complicated issues is so important, a light in a very dark room.

When my son was brain injured, I had the good fortune of meeting a nurse/physical therapist who'd spent years working with TBI patients. She gave me scads of information on traumatic brain injury, books to read, therapies to consider. It really helped. She also gave me hope. I'd love to pay that forward for my daughter-in-law's sake.

Thanks so much!

Trueblue Texan

(2,217 posts)
49. Praying...
Wed Jul 26, 2023, 09:34 PM
Jul 2023

I'm not a Christian and I don't pray much. But when I do, I pray to the loving and benevolent forces of the Universe, because I KNOW they exist. I am praying for healing of that precious baby girl and for you. I believe in the miracles that are delivered by professionals that have a passion for saving lives and I believe in the life force that lives within all of us. It is in that dance...keep dancing, even if you are afraid and unsure of the steps.


(10,484 posts)
59. We pray to the same spirits, Trueblue
Thu Jul 27, 2023, 10:53 AM
Jul 2023

However, for my devout friends and family members, I'm quite willing to get on my knees and repeat the prayers of my childhood. It's not hard because these events quickly bring you to your knees.

But I think you're right. There's something about the dancing, the celebration of the moment.

I'm working on it.


(51,129 posts)
50. I am so very sorry ...
Wed Jul 26, 2023, 10:04 PM
Jul 2023

You and your granddaughter have touched the hearts of many … and we all feel your angst and distress … ((((((hugs))))))


(15,752 posts)
54. Sending good vibes in her direction
Wed Jul 26, 2023, 10:52 PM
Jul 2023

I can see the hospital from my bedroom window. We are in town visiting my son who lives just down the street from Children’s.

She’s in good hands. I think she will be fine.


(10,484 posts)
61. Wow!
Thu Jul 27, 2023, 11:12 AM
Jul 2023

My daughter-in-law sent a picture from her room at the Ronald McDonald House (another small miracle that she actually nabbed a space). She might have captured your son's place in the process. LOL.

She and my son are very impressed with the staff and surgical team at Children's, all of whom have kept the family updated with every test, consideration and decision. Communication is critical when something like this is going on.

Thanks for the positive vibes!

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