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.
I'm so sorry this is happening to your granddaughter and to your family.
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.
anyone could ! Sending good thoughts to the family...
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.
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!
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.
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!
The Warrior Princess will PREVAIL!
Wasn't there a gofundme, or the like?
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.
Take care of yourself so that you and Cassandra can dance together!
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.
Thanks. And yes, I have danced with Cassandra. My only problem is keeping up with her. LOL.
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.💕
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.
I will hope and pray that your granddaughter pulls through this challenging time.
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.
Thanks for adding more to my basket which was pretty empty last night.
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.
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.
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.
I cannot imagine what this must be like. I am a grandmother too. Hang in there as best you can.
Yeah, this is when being a Nan is challenging, to say the least. Thanks for the support!
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.
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.
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!
All you need is one serious illness or injury to understand how screwed up the whole system is.
Appreciate the support!
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.
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.
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!
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.
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.
You and your granddaughter have touched the hearts of many and we all feel your angst and distress ((((((hugs))))))
I can see the hospital from my bedroom window. We are in town visiting my son who lives just down the street from Childrens.
Shes in good hands. I think she will be fine.
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!