Good news shoutout!

Maggie will be 19 in a couple of weeks. In those 19 years, I have been fortunate enough to learn what amazing things happen in children's hospitals. Maggie was born with body parts disconnected or connected incorrectly, with some things missing and with duplicates of others.  Little by little, step by step, the doctors fixed what then could and improvised elsewhere. A generation earlier she wouldn't have lived a single day and now she is about to graduate from high school. It is truly miraculous.

These miracles happen ever day in children's hospitals all over the country. Perhaps they seem somewhat less miraculous as they become routine. But the miracles continue every day, even if the awe has diminished.

One such miracle happened last night. Maggie's friend Justin received his lung transplant. Think about that: A LUNG TRANSPLANT. Talk about miraculous!

Through the wonders of social media and the generosity of his parents, I know that he is out of surgery and likely back in the ICU as I write this. He still has a long road to recovery, of course, but the surgery is done and went well.

 Please send prayers/good vibes for Justin and his family. Include the family of the donor as well because in order for this miracle to happen, someone had to lose their life.

Godspeed Justin. You have received the greatest gift imaginable. Get better and enjoy it!

This picture is part of a big facebook movement to get shoutouts to Justin from all over the place. Everyone is welcome and encouraged to join in.  If you want to send him your good wishes email a picture to shoutout4justin@gmail.com or go to shoutoutjustin on facebook.

Update on Justin

Justin's transplant did not happen.

The family gets the call and makes the trip from Vallejo to Stanford nervous and frightened. Justin is prepped for surgery which is going to begin about midnight and last 12 hours. There is another delay but they are all ready to go to the OR when the doctors determine the lungs may not be compatible after all and cancel the surgery.

The family headed back to Vallejo around 4AM.

We have been through a lot in all Maggie's medical experiences, but nothing like this. Please keep this family in your prayers.

Also pray for the family of the donor, whoever that is. The reality of organ donation is that someone has to lose a loved one for it to work. This particular person may not have worked as a donor for Justin, but several other patients were saved because he/she was an organ donor.

This donor didn't save Justin's life, but the next one will.

Justin

I just received some exciting news.

Scary, but exciting.

Maggie has folks she knows from all her hospital stays. One of those is her friend Justin who I've written about before.(Maggie World: My Heart Grew Three Sizes that Day) He is generous and sweet and has spent way way way too much time in the hospital battling cystic fibrosis.

This picture of Maggie and Justin is from a few years ago. He is much more teen aged now and will probably cringe when he sees this old picture (but your mom said it was OK, J.) That was from a barbecue following a walk to raise money to fight cystic fibrosis because this family quite literally walks the walk.

Justin just  received the call they've been waiting for and right now he is on his way to Lucille Packard Children's hospital for a lung transplant. I started to cry when I read that.

If you pray, toss a few his way and add in a few for his parents Tina and Rob too, because they need support too.  If you don't pray, send some positive thoughts. This is a very big deal and can be life changing for him.

Godspeed Justin.

My Heart Grew Three Sizes that Day

How is it that I spent Tuesday afternoon at UCSF Benihoff Children’s Hospital spreading Holiday cheer and came home with gifts for Maggie, who is not even a patient? How is it that I came away more in awe of the brave children in the hospital and the tired families who support them?

Mostly it’s due to my young friend Justin, who is stuck in the hospital for Christmas. I met Justin because his mom and I are both on the Family Advisory Council for UCSF. Both of our kids are “frequent flyers” or regular patients at UCSF. Now that we have everything set up at home, we are able to keep Maggie out of the hospital more than in past years. We are up there a lot, but it is mostly as an out patient.  Justin totally wins the frequent flyer miles, and he can HAVE them. Apparently he is now donating some of those points he’s racked up and giving away his swag. What a kid!

Like many kids in the hospital at this time of year, Justin is receiving gifts from several sources; he is benefiting from the kindness of various groups and individuals who remember the sick kids at Christmas.  One of those gifts was a stuffed Grinch, which is pretty cool. He insisted I take the Grinch and give it to Maggie because she would enjoy it more than he would. Wow. That’s some kind of generosity.

Justin has cystic fibrosis and he has been in the hospital more than he has been out this year. He had an opportunity to go home on Tuesday, but this very mature 14 year old boy opted to stick with the original plan, finish the regimen he’s on and try to avoid (yet another) return trip to the hospital in a week or so. That means he will be there over Christmas, but it doesn’t matter. He wants to get better and do everything to make that happen. His parents Tina and Rob hang out with him as much as possible taking shifts away from their business and do what they can to make it work.

The three of them are a team fighting this disease with all their might. They fight for Justin specifically and raise money for research to cure cystic fibrosis (CF), which is a gruesome disease. There is a lot of progress and advances in fighting CF and this family won’t stop until there’s a cure. In addition to the cool Grinch, Maggie got a t-shirt with “Climb for the Cure” to fight CF, one of dozens they were giving away.  This family is tireless in their fight. This picture was taken when we stopped in for a visit after the CF walk that took place at Crissy Field in May. Justin's family was barbecuing and about half the nurses from UCSF were part of Team Justin helping to raise money.  

In the hundreds of hospital admissions and stays Maggie has had in her life, we have never been in the hospital at Christmas. She spent her first Christmas Eve in the ER and I had to fight to take her home, (see Maggie World: No Admission), because after all she and her brothers had been through that first year, I was not going to have her in the hospital at Christmas unless she needed the ICU. I managed to talk them out of admitting her, went home for Christmas and I think she was admitted on the 26^th of December. Seeing all these families facing the Holiday in the hospital was surprisingly difficult for me. I know how it feels to be stuck in the hospital; you are exhausted, worried, tense etc. You want to make everything great for your child and you can’t. Top all of that off with missing the Christmas festivities and it is too much. 

As fun as it sounds, my attempt to spread Holiday cheer at the hospital was not just going into kids’ rooms and stealing their gifts. There was a cookie party planned for Tuesday afternoon. Many of us brought cookies to offer a short break to parents whose children are admitted to UCSF Benihoff Children’s Hospital for the Christmas Holiday.  It’s nice to offer something nice at what is such a low point for so many families.

 The cookies were great, but they turned out to be just the dessert. Brian Wilson, pitcher for the SF Giants (FEAR THE BEARD) took the whole party up several notches and donated an entire turkey dinner with all the trimmings for the families stuck in the hospital. A meal like that is an incredible gift at any time, but to do it now, at Christmas, is amazing.

 I have to tip my hat to Brian Wilson because unless you were at that party or you are reading this blog, no one is going to know he did that. Well, Brian, I know. And I think it’s very cool. Fear the beard? Pshaw! You’re just an old softie.  Oh and by the way, Bri, I know a certain Giants fan with the same generous spirit as you. His name is Justin. Pop in and say hello.

Team Justin

Both Maggie and I meet numerous people during our hospital stays. It is not unusual for us to know two or three other patients when Maggie is admitted. There are a number of “frequent flyers” (regular patients) at UCSF Children’s Hospital, and both parents and kids get to know each other.


On Saturday we went to Crissy Field to support one of those kids. Justin is 14 and has Cystic Fibrosis (CF) which is a crappy disease. He has to spend long stretches in the hospital but he makes the most of it. He is well known for the Wii competitions held in his room. Unless you saw him in the hospital though, you would NEVER know this kid has anything going on. He is an active 14 year old that has a ton of fun.

On Saturday, the “Great Strides” walk to benefit Cystic Fibrosis research was taking place at Crissy Field. This disease should be cured. Researchers are making "great strides” toward a cure and Justin’s family is very active in raising money for research. They recruited many walkers to participate and were having a barbecue afterward. It was a fantastic day, so Maggie and I headed down there. Dad was going to join us a bit later after giving his sister and her friends a whirlwind tour of San Francisco.

There were a gazillion people at Crissy Field. I looked around for “Team Justin,” pushing Maggie through the various awnings and parties set up for other walkers. There was a huge group or fraternity boys and sorority girls in one group. Just as I pushed Maggie through their group, the pizzas arrived and we were completely surrounded by frat boys. Note to self – never get between fraternity boys and free pizza. They quickly parted ways so we could pass, but it was a funny few minutes.

I found Team Justin when I saw a nurse from the UCSF PICU. She recognized Maggie and came to retrieve us. There were burgers, hot dogs grilling, and walkers returning for the feast. I spoke briefly with Tina, Justin’s mom (who serves on the Family Advisory Council with me and other parents). I caught up with Chriss, the nurse manager whose kids went to school with mine.

As I chatted, I started to suction Maggie and found the suction machine would not suck. Really? The machine has one function. I could not get it to work. I called to see if Steve was home and could grab the other, but he was still touring. We had to leave. Maggie was doing ok, but I had maybe 10 minutes to get to a working suction machine, which is just about how long it would take to get home. .

I said my goodbyes. Rob, Justin’s dad said,” Aren’t you going to eat.” I told him I couldn’t. I used to (jokingly) say that everything in my life sucked except my vacuum, so I quickly reformed that saying to fit the situation and took off.

We did get a picture of Justin and Maggie, though. Justin is holding his friends dog “Starbucks”

If you want to participate in the Great Strides Event on your area or get involved in the fight against Cystic Fibrosis, check out http://www.cff.org/great_strides/ 

Unrelated but important note: Today is my 24th wedding anniversary. I am a very lucky woman because I met and married the right person for me. As I waited for Maggie’s bus this morning at 7:00AM, chatting with the night nurse who was leaving and the school nurse who was arriving and trying to get the dog to stop barking I thought “who would have thought this would be my life 24 years later” And then I smiled. Better, worse, richer, poorer, sickness, health. We have had ‘em all. Happy Anniversary, dear.