His back and his hips were hurting, but he didn’t want to leave because he was enjoying the music so much. We had no idea that his body had been taken over with leukemia. His blood was actually 86% leukemia cells and he was dying that night. He was diagnosed with acute lymphoblastic leukemia the next day, May 25, 2009.
Here we are. Three years of making rooms for kids — putting smiles on their faces for as long as we can. Helping them forget that they’re sick, that they’re suffering as no child should, that they’re scared, that there is a whole world rushing by outside their hospital window not worrying a flip about blood-work, cell counts, spinal taps or dying.
As you recall, or if you’re new here, you might not recall, that Make Room for Kids started as a social media effort on this blog and has since become a program under Austin’s Playroom Project at the Mario Lemieux Foundation (MLF). MLF has served as the fiduciary agent since the very beginning and is responsible for coordinating the program’s efforts with various hospital personnel and departments to get gaming into the hands of the kids that need it the most.
Microsoft is another important partner in that the generous employees from the local office, coordinated by Luke Sossi, donate their own money, which is matched by Microsoft corporate, to provide us with all the XBOXes, controllers, KINECTS and more that we need for the program. Without their involvement, we would be hard pressed to provide as much as we are able to now.
This year is our most ambitious year ever because we’re not just raising funds for one hospital; we’re raising funds for TWO hospitals. With your help, we are completely overhauling the gaming in the cancer unit at Children’s Hospital, both inpatient and outpatient, AND we are outfitting the pediatric unit at Allegheny General Hospital. WE’RE TAKING CARE OF ALL THE KIDS.
(Genre holding onto his mother while being prepped for a spinal tap. Photos courtesy the Baker Family.)
Genre began his chemotherapy treatment today at 10:00. The whole thing was surreal. He received the first medicine with a ‘push’ to his port. The second drug was infused over a half hour. He is taking the steroids orally. The nausea meds don’t seem to be working too well … it is 1:43 am and he is still getting sick. He woke up a little bit ago and asked “Mom, is the medicine supposed to heal me or hurt me?”
Let’s start with Allegheny General Hospital, where the pediatric unit currently has eight beds treating children in ages that might range from infant on up to the late teens. Currently those children can pass time by watching movies on a TV that is wheeled into their room on an AV cart like we used to have in our classrooms in high school on those glorious movie days.
The hospital is upgrading the TVs in the pediatric rooms, and in April we will be installing an XBOX for each bed as well as a nice supply of games and movies.
Today was a lot harder than any of the other clinic visits for some reason. It just seemed like they were doing so much to his body. They were putting so much into him. Each time we were done with one thing we moved on to something else being injected into him. — July 1, 2009
As for the cancer unit on the 9th floor of Children’s Hospital of Pittsburgh, that’s where you’ll find Genre Baker‘s friends spending up to hundreds of days in the hospital, enduring treatment after treatment, losing their hair, learning difficult-to-pronounce medical terms they shouldn’t ever learn, praying and hoping they get to go home soon.
We are going to completely overhaul their gaming as what is in there right now is outdated and could use some TLC. That entire unit is currently sharing one iPad as well. That just won’t do.
With your help, we’ll be putting a brand new XBOX in each inpatient room and three KINECT systems in common areas, so the kids who are well enough can get up and get some exercise and gaming in with their other cancer patient friends.
The 19 inpatient beds will each have a designated iPad. No need to share, and of course we’ll give them a supply of games and movies and lots more that we’ll show you on install day in April. These kids will have LOTS of choices when they need a diversion from their cancer fight.
We’re not stopping there because the cancer unit also includes an important eight-bed transfusion unit and a two-bed phlebotomy unit that we hope to take care of.
(Genre receiving chemotherapy via his mediport)
When Genre’s blood work came back it showed that his red blood count was a little low. They expect his numbers to drop even more this week, so they transfused him with red blood cells. The transfusion takes two hours -just for the actual infusion. The nurse told me that we got ‘lucky’ today because the hospital had the blood that Genre needed. She told me that it can take hours for the blood to be delivered to the hospital if it needs to come from the Central Blood Bank. She said we could be there until 8 or 9 pm in those instances! — July 8, 2009
Kids can spend all day and into the night in the transfusion unit with only movies or their own handheld gaming systems to occupy them. When we’re done, they’ll each have an XBOX to help pass the hours of waiting as well as their choice of games, movies, radio stations and more.
All told, we’re looking at almost $35,000 in gaming and more being delivered to almost forty hospital beds in the city of Pittsburgh.
Genre is home. They let him leave at 8:30 last night. After he had an allergic reaction to the red blood he received, they gave him Benadryl. He reacted to the Benadryl with vomiting, nausea, dizziness, increased blood pressure, and shaking legs and arms. Once he was able to get out of the bed by himself, they let me bring him home. He had a really hard evening. He was really frightened by the way he was feeling. He kept asking why he felt so terrible and how they could make it stop. — August 17, 2009
But, relax! We have wonderful donors stepping in this year to help us out with such a huge undertaking.
— Ansys Corporation has generously donated $15,000 to this effort thanks to Noelle and David Conover, the parents of a cancer patient, Matt, who died at the age of 12 after a quite lengthy and courageous battle against childhood cancer. Knowing how much gaming helped Matt pass time at the hospital, after his death the Conovers established Matt’s Media 4 Kids With Cancer Fund to raise the funds for Matt’s Media Room and gaming in the cancer unit. Matt’s Media Room is the main playroom in the cancer unit where patients of all ages can go to play games, do activities, or use computers when they’re feeling well enough to do so.
— We still have our generous partners at the local Microsoft office who have donated, from their personal paychecks and corporate matches, enough to provide every XBOX we need for this phase. Incredible. This donation will bring the 100th XBOX donated by these folks since the first phase of MR4K.
— We’ll not need to provide any handheld gaming systems because Genre’s Kids With Cancer Fund already provides each cancer patient with a handheld system upon their diagnosis with cancer.
— That leaves us with over $10,000 that we still need to raise in order to close the gap to fund this year’s efforts under Make Room for Kids and that’s where you come in. Help us raise that $10,000 for these kids, please. If you can find it in your heart and wallet to virtually wrap your arms around these kids, I’ll be so grateful to you.
The donations button is up over there in the sidebar. Please click it. (We’re on manual update status of that bar for just a while longer. It should start updating live soon as Woy bitchslaps it good.) It will take you to the Mario Lemieux Foundation’s PayPal account. Donate two dollars. Donate ten. Donate whatever you can.
I’m going to share more of Genre’s story of fighting cancer with you as the next few days go by. In sharing his story, I can help you understand WHY it’s so important that these kids have distractions like the ones we’re giving them. It’s heavy stuff you might not be aware of. I wasn’t.
Your generosity will be rewarded. In smiles, and in knowing you gave some sick kids a few more options to pass their time while fighting cancer.
And you’ll be rewarded with this delicious picture that I recently found in a box in my basement. It’s from my junior prom in 1991 on the Gateway Clipper. It’s Something About Mary-tastic. I personally think it’s worth $10,000. I hope you do too.
Today is six months since we first heard, ‘Your son has leukemia.’ It’s strange…it seems like we’ve been doing this a lot longer than six months. It seems like we’ve been living childhood cancer so much longer than half a year. On the other hand…sometimes it seems like they just smacked me in the face with those words this morning. Sometimes I still lose my breath when I think about those first moments…I just can’t go back there. — November, 25 2009