Tuesday, August 13, 2013

Banquet Presentation 2013


We had a fantastic day on the course yesterday; the weather was perfect, we had golfers aplenty, and after the games had been played, a banquet of steak and lobster awaited. But, before we attended to our hunger, we had the opportunity to hear from two very special guests.

Representing our "Heroes", 10 year old Luciano Quagliaroli very eloquently told the group listening about his experience with fighting and defeating his Leukemia. This is what he said:

Luciano Age 5
"My name is Luciano and I’m 10 years old.  When I was going to turn 5 years old I was diagnosed with Leukemia.  At first I didn’t know what it meant but my parents explained it to me and I thought I just had a little cold.  I remember spending a lot of time in the hospital and the clinic, getting lots of shots and IV medicine.  I don’t remember everything but I do remember the medicine making me feel sleepy and a lot of people visiting me.  Having cancer was hard for both my family and I.


Luciano Age 10
Today I am in remission. It’s been 3 years since I had to get chemo.  I’m going into 6th grade this year.  When I started school in 1st grade I did not know how to write, read or spell because I was in treatment and missed kindergarten. Before this summer started I was an honor student and in advanced math, my reading and language levels were at an 11th grade level.  I like to surf a lot now, play soccer and box. I feel energized all the time and I have a lot of fun with my family and my best friend who comes over a lot. Throughout my experience with Leukemia I learned to appreciate things more then I did before.
 
I hope that someday, no child has to fight cancer. I hope someday it is gone."
 
To represent "Hope" a video montage of Logan Hansen's fight against her childhood cancer played. For those of you unable to attend, the video is linked here followed by images of this year's participants.
 


This year's tournament is over, but your chance to support finding a cure for childhood cancers is not. You can still donate and continue making a difference in the lives of local children and their families.

DONATION ♥


Monday, August 5, 2013

Maggie's Story

Written by Chris Popper

I want you to meet my new hero… Lucas Rudnicki from Levant! Lucas is 7 years old, and most children that age are afraid of needles and doctors. Heck, I really don’t like doctors, and despite, or maybe because of numerous surgeries, I don’t like needles.
You see, Lucas is a bone marrow donor for his sister, Maggie.

This is their story as told by their Mom: "Maggie’s story started at 8:49 am on Tuesday August 19th, 2008. After a long 9 months full of ups and downs (including a cystic hygroma, a CVS test, and tons of ultrasounds and fetal echocardiograms) we welcomed our little girl into our lives and fell completely in love. She seemed perfectly healthy at birth, weighing in at 6 lbs, 5 oz and pink as could be. She was given a clean bill of health and 3 days later we came home to settle into a routine with Maggie and her 2 big brothers.

4 weeks later Maggie came down with a cold, I decided to call our pediatrician when almost a week had gone by and she still wasn’t better. I figured I was being overly paranoid, but better safe than sorry. We got to the doctor’s and realized she had hardly gained any weight, she had a heart murmor and her doctor thought she looked pretty pale. He decided to send us for bloodwork that night to be sure everything was okay and 2 hours later I got a phone call that changed everything. Her doctor told us that Maggie’s labs were pretty alarming and we needed to get her to the ER, we knew it was bad when he told us we needed to call 911 as she needed to go via ambulance. When we got to the hospital we found out she had a hemoglobin level of 3 (a normal hemoglobin starts around 11, a 3 is an extremely critical blood count). She was admitted to the PICU and a couple hours later received her first blood transfusion. She ended up getting 3 transfusions during her first stay in the hospital and now receives a blood transfusion about every 2-3 weeks.

Maggie was officially diagnosed with Diamond Blackfan Anemia after a bone marrow biopsy showed no red cells being made in her marrow. She also has tested positive for the RPS 19 gene mutation that is the most common gene mutation found thus far in DBA patients. Diamond Blackfan Anemia is a rare life threatening disorder, affecting only about 750 people in the world. People with Diamond Blackfan can not make enough red blood cells needed to survive. It is usually diagnosed in infancy and has no cure.

Lucas told his Mom “Mommy I’m so happy that my blood will help Maggie not need needles anymore, because I don’t like when she cries.” What a brave boy! Here he is the night before he went to donate his bone marrow, Tuesday, July 23, 2013


This is Lucas, yesterday, as he was waiting to go into the OR, for the donation


And this my friends is what a hero looks like, as Lucas recovers from his donation


At 1:06 PM, July 24th Lucas’ cells entered Maggie’s body. It will take about 2 hours for them all to infuse. The nurses and doctors are counting the drips. Amazing. Witnessing a miracle today!
And this is what’s going to give new life to little Maggie


Maggie and Lucas, a bond that will never be broken

The Rudnicki family has given us permission to use these pictures, and we'll keep you updated on the story. Needless to say, prayers are most welcome!


In transplant terminology, Day 0 is transplant day. Wednesday, July 24th was Day 0 for Maggie Rudnicki, thanks to the bone marrow that her brother, Lucas donated. Yesterday was Day +1 for Team Maggie and her family. And it really is a family journey. Here’s the update that Maggie’s and Lucas’ mom, Lauren posted
Day +1 has been great. Lucas was discharged around 2 and he is sore but doing awesome! Maggie feels good today and has had a lot of energy! Her blood counts are pretty much zero so the next few weeks will be critical as we pray for no infection. It will be about 2-3 weeks before she engrafts and her white counts start to go back up. She will be immune compromised for a long time..and we will support her with blood and platelet transfusions as needed. I have been told the next few weeks could be challenging and the next 100 days are very important. We still have a very long road ahead of us so please keep us in your thoughts and prayers over the weeks and months ahead. Thank you so much to everyone who has reached out over the past couple weeks. We appreciate it so much!
If you’d like to send a card, or a note of an encouragement, the address is
Tufts Medical Center -Bmt unit floating 6
Attention: Maggie Rudnicki
750 Washington St
Boston MA 02111

Here’s a double rainbow outside of Maggie’s room Friday.

You have to remember that double rainbows only occur because of rain. And that’s kind of symbolic of how things go when you’ve had a bone marrow transplant. Sometimes there are good days and sometimes not so good days, but you just have to remember that there’s a beautiful rainbow waiting when it’s over!
Here’s Lauren Rudnicki’s blog entry for Day +2, Friday July 26th, two days after Maggie received her bone marrow transplant from her brother Lucas.
Day +2 has been ehhhh. It seems the effects of chemotherapy are starting to show their ugly faces and Maggie was tired and had a lot of belly issues today. She’s also got a pretty bad rash everywhere. She had a consult with the kidney doctors today because we are dealing with some higher blood pressures and she also started TPN (iv nutrition) today because she’s just not eating enough. This is all to be expected but still not fun when she doesn’t feel well. She’s such a trooper! Her white counts are gone and they expect she will need a transfusion of platelets in the morning. Such a brave girl.
 
Some of the upcoming days are going to be a little tough. There may be rainstorms, and even thunder. That’s where the Team needs to pull together. You can be part of the team. A note of encouragement, stickers, coloring books, they go along way.

The address is
Tufts Medical Center -Bmt unit floating 6
Attention: Maggie Rudnicki
750 Washington st
Boston ma 02111

Stay Strong Team Maggie!




Children's Play Room 2013

The new children's playroom walls are wrapped in an enchanted forest theme full of fun animals to discover... and Ronald is there, too! ♥