Mason Gregory

Mommy gave me a Kidney !!! I've had it since Tuesday May 2nd, 2006!!! It has been working great! I feel good for the 1st time in my life!!

I have Prune Belly Syndrome and also had a Hepatoblastoma liver tumor. I am cancer-free as of May 2004. Both the liver tumor and Prune Belly Syndrome are rare diseases and are unrelated to each other.

I am 3 years old, and 2 years cancer free. My currect AFP level is 3.2, creatinine 0.4 and BUN 11.

Cancer: The hepatoblastoma liver tumor was diagnosed on Dec. 29, 2003, at 7 months old, and within a few days found out it was malignant (cancer). On Jan. 2, 2004 I had surgery to remove the tumor along with half of my liver. The Doctors felt they got all of the tumor, but still wanted me to undergo chemo to be sure they did get all the cancer and that it will not come back. I finished the 4th and last round of chemo on April 12, 2004. It was 3 VERY long months of chemo.

Prune Belly Syndrome (PBS): happens in-utero during fetal development. There is a blockage in the urethra and the bladder can not drain properly. So the urine is trapped in the bladder and the bladder balloons up. The urine then backs up to the kidney's, which causes kidney damage. Because the bladder is very big during fetal development other internal things can not grow properly like the lungs, abdominal muscles and testicals do not descend. The term Prune Belly Syndrome comes from the look of the stomach because of the lack of abdominal muscles. The stomach looks all wrinkled just like a prune.

Fetal surgery: Mason was diagnosed with Prune Belly Syndrome at 19 weeks gestation. One week later, at 20 weeks, he had fetal surgery in Philadelphia at Children's Hospital on Jan. 27, 2003 with Dr. Mark Johson. They put a shunt in his bladder to drain the urine. It was successful. Without this fetal surgery Mason would not have survived the pregnancy.

Birthday: I was born on May 7, 2003, which was 5 weeks premature, by natural childbirth. I stayed in the NICU (neonatal intensive care unit) for 24 days. I had my first surgery at 12 days old when I got a vesicostomy, which is a small hole in my abdomen where they attached my bladder so the urine could come out of his body. The vesicostomy was closed on July 13th, 2005 and then Mommy and Daddy started intermittent cathing daily. I will never be able to urinate completely "normal" and will need to cath for the rest of my life.

Kidney's: My kidney's are the most serious problem. I was on Peritoneal Dialysis from 11/14/05 until May 1, 2006. I had to wait until I was cancer-free for 2 years before I could have a kidney transplant.

Kidney Transplant: My kidney transplant was done May 2, 2006. Mommy was my kidney donor because she is a perfect match (meaning she is like an identical twin by blood). I now have 3 kidney's, 1 really small one that doesn't work, 1 that doesn't work very well, and then the new one from Mommy. My creatinine dropped from 4.6 to 0.4 after the transplant. Awesome!

Surgeries: I have had 9 surgeries. 1) Fetal surgery for the shunt, 2) vesicostomy, 3) bring down 1 testicle, 4) bring down other testicle, 5) remove the liver tumor and half of the liver, 6) a g-tube, 7)close vesicostomy, 8) peritoneal dialysis catheter 9) Kidney transplant.


Feeding problems: Mason has a g-tube, which is a feeding tube that is surgically inserted into his stomach through his abdomen. He has had a feeding tube since Jan. 2004. He does not know how to chew food due to the chemo and also the kidney failure when he would have learned to chew and eat food. He also had oral aversions due to the mouth sores he got from the chemo. The Feeding Team at Children's Hospital are helping with his eating. Since his kidney transplant he has made great progress. He finally feels like eating. He drinks 8 oz. of milk a day, eats 6 oz. yogurt by himself, eating pureed food about 3 oz., and now has been eating hotdogs, fishsticks, french fries, chicken noodle soup, ketchup, taco sauce, ham, beef, and he will try anything you give him. We have been able to cut back 1 out of 4 cans of formula already. YIPPEE!


Lack of abdominal muscles: I do not have my 2 oblique (side) abdominal muscles, which causes my abdomen to be larger than normal (like a pot belly) and it looks all wrinkled (like a prune). I wear an abdominal binder (Fabrifoam one) to help hold my tummy in. I have developmental delays due to lacking my abdominal muscles(sitting, crawling, walking). I started walking at 20 months old and there is no stopping me now. I received physical therapy to help learn "normal" skills a little differently. Overall I am doing good though. I can ride my bike and jeep with no problems.

Mason is truly a miracle boy. When he was 1st diagnosed with PBS they said he would probably never make it. Boy where they wrong!!! He is such a strong and brave boy, and is proving he is a fighter every day. Then cancer was thrown in his life and he is still fighting and fighting!! Mason had a successful kidney transplant on May 2, 2006. He is a happy and carefree boy who has been causing alot of trouble just like any 3 year old. He is always smiling. This page is for all of Mason's family and friends who love him so much. Thank you for all your love and support!!


One of our goals is to educate people about PBS. We are a member of www.prunebelly.org which is a not-for-profit organization that is dedicated to PBS education and support. If you or someone you know has PBS please visit the website.

Mason Grahl

Born: 5/7/03

Journal

Friday, January 5, 2007 3:00 PM CST

www.caringbridge.org/visit/masongrahl


NEW WEBSITE!!!! THIS ONE WILL NO LONGER BE USED!!!!!!!!!!

I will leave the new link on here

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Hospital Information:

Children's Hospital of Wisconsin
9000 W. Wisconsin Avenue
Milwaukee, WI 53201-1997
414-266-2000

Links:

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