For those who have been reading my blog, I know you follow the ups and downs in the life of my niece, Angel. When she was about four, she went through her first kidney transplant. When complications set in, we were worried, no, we were scared. When we lost something very special to Angel, we were afraid it was a bad omen. But after weeks and weeks in the PICU, she made it to the floor. Unbeknownst to her, because she was in a medically induced coma, many people came together to bring that something special back to Angel. Frankly, it was just the magic we all needed. Shortly after, things began to turn around and Angel made it home. That something special was a stuffed bear. For years, we have wanted to bring that bear to life, for Angel. Now, we hope to bring that bear to life for all kids who are seriously ill and face long stretches in the hospital. So here I share how it all came together, this very special project for a very special girl. Please click on the link below to see how it all began, and where this project is going. I am really exited to share that we have published my first Children’s Book and there is a whole White Bear’s World to come.
My sister has been away from her blog for a while. Normally I would never ask people the world over for a favor. But this is a special circumstance. I know some of you follow my niece’s journey. She is 12 now, and things are not going well. Worse yet, she is starting to understand things I guess I always hoped she wouldn’t have to. I am going to link my sister’s latest update. All I ask is that you please read it and send some positive vibes out to the universe on behalf of Angel, her sister and brother and my sister. We could use the support and I thank you.
Below the text is the link
We finally got to the source of Angels pain and fevers. Her native kidney is covered in cysts and is very infected. It would seem easy to want to just take the kidney out ,but as Dr C explained is not that simple. First off infection needs to be under control secondly it would be an extremely complicated surgery. Her native kidney was not exactly in her back area like usual but slightly more in the middle of her body. This is why it was so easily believed to be a stomach or bowel issue.
In addition to being in horrible pain and high fevers on and off she is feeling terrible emotionally. She is missing school which although she has made it to a few classes ,she was truly looking forward to school this year. She is feeling sad that her body doesn’t work properly, she is feeling sad that she doesn’t know if she will ever be able to have children and a family of her own, she is feeling sad that she doesn’t have her comfort zone and support from years of seeing her dialysis family three times a week, her Dad being gone and her life has just undergone so much change in the last few years.
Seeing my daughter crying in pain for as many days as I have is totally overwhelming and if it wasn’t for the support from my Dad and sisters and my children I would really be a basket case. I have been blessed with a few friends who check on us regularly and I am totally thankful for that.
Please keep Angel in your thoughts as she will be in the hospital for a while,the pain will continue for a while and honestly we have no idea how much this will affect her transplanted kidney and her overall health.
Tomorrow morning she goes in to have her stent in her new kidney replaced. I can only hope for her to feel better and know she is truly an amazing little girl who is a true inspiration
Back to the place she knows so well, and welcomed by those who are dedicated to help, but have become family. Tampa General Hospital, where everybody knows her name. It was a simple gesture, saying welcome back on the board in Angel’s room. To a casual observer it may not even be noticed. To me, as aunt of one of the most amazing people I know, that gesture was symbolic of the many years of love, heartache, triumph and hope that we have all shared in the amazing 12 years of Angel’s life.
Angel came into the world at St. Joseph’s Women’s Hospital, but soon found a second home at Tampa General. She was born with Vater Syndrome, a relatively rare set of congenital anomalies requiring life saving and life preserving surgeries, medications, an amazing and dedicated set of physicians, ARNP’s, nurses, hospital employees and the super hero (thank you for the words my beautiful friend across the pond) mom whose dedication and love help Angel thrive in ways no one could have predicted.
Back in the hospital after only a few days home, I had time again to reflect on how lucky a chronically ill child is to have an envelope of love and dedication surround him or her in an environment that us foreign to most people.
After just a few minutes in the room, it was time for shift change. A nurse that had never met Angel came in. This is rare. Meanwhile a nurse from The IV team came in put a new sonogram guided IV into her left arm because the one in her right arm was no longer useful. That nurse had cared for Angel in the ICU many times before. Another nurse stopped by to sit on the bed, hug Angel a few times, talk with the new nurse and reminisce. Even though she
had cared for Angel only a few days before she said, “I remember when you used to make me call you Princess Fiona.”
I had forgotten Angel’s Shrek period, but it did remind me of the day that Angel was dressed in a beautiful dress for her hospital wedding to Diego, a cartoon character she loved so well.
So then began the trip down memory lane. Remember when Angel had the sign on her hospital door saying that all who enter must put money in her bank? Remember when we used to spend every Saturday snuggled on the big blue chair watching movies till we fell asleep? Remember when Angel would say, “be right back,” and walk to the other side of her crib to pretend she was going to the potty?”
How about all the Halloween parades and the Christmas parties? Or what about last month when the cashier in the cafeteria told Angel she was sorry they didn’t have donuts anymore? Or the time we sat for hours watching her sleep after the takedown of her colostomy or when she sat in her doorway crying, “water” when she was on fluid restrictions and none of the nurses wanted to walk by her room?
Most people can go their whole lives not entering a hospital. Some go occasionally and don’t give it much thought. For some, hospital is a home with extended family who come to know and love each other, know spouses, children, uncles, aunts, cousins and grandparents. For those people, I hope they have a place to go to like TGH. A place where doctors and nurses stay, and care, and keep giving.
“Be glad there’s one place in the world
Where everybody knows your name,
And they’re always glad you came;
You want to go where people know,
People are all the same;
You want to go where everybody knows your name.”
Welcome back, welcome back, welcome back.
Love you, Angel.
Although the world is full of suffering,
it is full also of the overcoming of it.
– Helen Keller
My niece, Angel, is my sunshine, my inspiration, and one of the smartest and bravest people I know and she is far wiser than her eleven years. She was born with Vater Association, a group of congenital deformities, among them only one barely working kidney. She had her first major surgery when she was only hours old. From the time she was very little she was on strict dietary restrictions, underwent hundreds of diagnostic tests, several reconstructive and spinal surgeries, long hospitalizations and required a complicated regimen of medicines several times a day.
She began dialysis at age four and was listed for transplant by six. Angel was on dialysis for eight years when it became medically necessary to move her to the top of the transplant list. Not too long ago, she underwent a successful kidney transplant and her entire life has changed in ways not many people could imagine.
How things have changed
Angel used to spend at least four hours in the dialysis unit three times a week. Everything she did revolved around her dialysis schedule and her medical procedures done once an evening at 6:00 pm. When I asked her how it feels not to have to go to dialysis any more she said it feels “weird and boring.” She finds it hard to fill all that extra time, except for binge watching Netflix. She said food tastes saltier now and she can drink as much as she wants. Her diet is only restricted by raw foods and grapefruits and she is not allowed to eat at buffet restaurants. She has had chocolate for the first time and found out that she loves peanut butter cups.
Now that she has recovered from the actual transplant surgery, she is feeling much better. She has more energy than she had before and she is looking forward to traveling outside Tampa to amusement parks, fairs and Disney World. She still visits her friends and the nurses in the dialysis unit when she goes to the hospital for labs and for school. Her biggest goal right now is to go to “real school.” She has been going to home-bound school at Tampa General since Kindergarten!
Angel is an inspiration to me every day. She has a bigger heart than anyone I know. In 2010 Angel was a spokesperson for Tampa General Children’s Medical Center for Christmas.
Angel is also past winner of the American Kidney Fund Art Contest and was the was the guest at the Ribbon Cutting Ceremony at the Kidney Walk in Atlanta, GeorgIa in 2012.
Once she recovered from her surgery, the first public gathering she attended was a walk for Colon Cancer at the Al Lopez Park in Tampa. Truly her heart and her love for life knows no bounds.
When she is out in public and wearing her mask, she wishes no one would ask her any questions. However, she knows that is not realistic so she has created some helpful hints which you can read about in Part Two.
Looking towards the future
Angel plans to become a doctor in the future. For now,though, she enjoys watching Grays Anatomy, Super Natural and How I Met Your Mother. She is busy learning to sew so she can make quilts for the children in the hospital and learning how to play the guitar. The future is bright and that is no surprise as she remains my only sunshine.
Don’t let this article make you believe that this is all a walk in the park. It is a testimonial to Angel’s personality that this all seems so easy. For the second time in as many weeks, Angel again is in Tampa General Hospital, waiting for a sonogram. Her urine output has been less than expected and she is swollen and a bit uncomfortable. As her mom, Lisa, reminds us, transplant is just another type of treatment, not a cure.
Part 1 My daughter is almost 12. She was born with a condition called VACTERL/VATER or Sacral Agenesis or Caudal Regression. They all basically mean the same thing. They basically mean that …