GRANDADDY CHECKS OUT ST. JUDE
|by John Niolon|
I wrote this article several years ago when my grandson was a patient at St. Jude.. he had a cancerous brain tumor that was removed at a hospital in Mobile… he then went to St. Jude to receive his follow up radiation and chemotherapy. This is a story of a grandparent’s visit to the hospital.
The first things you notice at St. Jude are wagons and tricycles. You start noticing them when you turn in the gate and from that point forward, you never stop seeing them. There are hundreds, if not thousands of them. Some are empty..left in the parking lot after a long day with some combination of radiation, chemo and physical therapy at St. Jude . The wagons are emptied as the kids are loaded in the cars or shuttles by Mom and Dad for the return trip to Ronald McDonald or Target House. Magically the next morning the wagons and trikes are lined up neatly at the door for another long day. Each wagon is brightly painted and many are signed by their passengers. All have a plaque on the back that quietly states that this wagon was donated by…or in memory of Jimmy or Stacy or Dominique or one of a hundred other names..one on each wagon.
I followed my daughter, son-in-law and precious grandson Cole through a few days of what has become their life routine at least for the next six months or so. As you enter the building your overwhelmed with color and shape and movement. The walls are covered literally with painting and murals. Zoo scenes with nearly life sized elephants and bears. Monkeys swing from a painted tree and a huge purple and green snake smiles down while coiled around another limb on the monkey tree. A turn of the corner and you see a hundred feet of white picket fence with flowers as large as your head peeking between the pickets. A smiling sun six feet across warms you from the opposite wall. On one wall of a clinic is a world map with lettering above it that says where we are from. There is at least one name by every populated continent and wiggly arrows that point to their country or state or region.
This is without a doubt the most cheerful place I’ve been in a long time, and considering what these walls witness every day, that is quite a statement. The halls are alive with movement... doctors, nurses, technicians, parents, kids and school tours all team together.. with a destination, all with a schedule.
The day starts with registration. You sign in and they verify your numbers. Cole is four years old and can readily tell the registration nurse his 6 digit number by heart as he holds up his pant leg to have his new daily bracelet (or anklet) attached. Then the printer hums and out pops his schedule. The schedule is your roadmap for the day. Every parent has one close at hand usually IN hand. The schedule lists the appointments for the day. Anywhere from one to five or six, depending on what treatment is needed today and who needs to be seen by whom.
Now of course, the idea of a schedule is to have certain things happen at certain times.. but this is a hospital… a hospital for sick children and things happen. Sedation takes longer to wear off. Exams take a little longer than expected because someone is crying or sad or just having a bad day and the staff patiently does what has to be done no matter how long it takes, so, sometimes you wait.
I’m not implying that things aren’t done right. This hospital is efficient and precise and well operated…it has to be to treat several thousand kids a year. It’s operating budget is one million dollars a day.. 365 million a year, and the majority of it is donated. A family is never charged more than their insurance will pay and if they have no insurance there is no charge.. nothing ! it’s all free. The same is true for the Memphis Grizzly house, the Ronald McDonald and the Target houses that give the families a place to stay for months at a time.
The first day I witnessed all this was Cole’s first day of 3d conformal radiation. He had finished 13 sessions of general cranial/spinal radiation. This new round is a super whiz-bang kind of pinpoint radiation therapy that concentrates only on the tumor bed and one centimeter around it. Cole’s was at the base of his brain above the stem and three beams focused at this precise point. Little tattoos behind each ear and one from the very back (or top since he’s laying face down) mark the path for the beams. This procedure should only take about 30 minutes, but the first time takes longer with new x-rays and set up and procedures to be followed. It took well over an hour but Cole was sedated and had no idea about any of this. Mom, Dad, Grammy and me waited and watched the clock and the others in the waiting area.
This waiting and watching was the best teacher I could have had about St. Jude’s and what goes on inside the brightly colored walls. Tours will give you the once over and impress you with the physical plant, but sitting and watching the staff, the parents and the kids gives you the real story. My favorite hobby is watching people….you can learn so much just sitting quietly and looking around.
It doesn’t take long to see this group of people who minister to these children (and their families) are professional. They are efficient, they are confident and they are well qualified to handle whatever may come their way.
Each patient follows his schedule and their chart follows them. Cole has been here about three weeks and his chart fills a red three ring binder nearly four inches thick. Every procedure, medication, order, assessment, test result resides in that binder and it’s Cole’s history and probably a lot of his future here at the hospital. The movement of paperwork is as efficient as the staff. There were very few times we had to wait on his chart to catch up with us as we traveled around the facility.
The one thing that impressed me about St. Jude’s staff was their attitude toward and attention to the children. Doctors, nurses and staff will stop in the hall and talk to families, play with the kids, make them laugh and smile and more times than not have a toy or trinket to give them. Everyone there is totally at ease with the kids and the kids are with them.. I’ve never seen a hospital where a child can walk down the hall and high five a doctor or nurse, shout down the hall to someone just to say hi and wave, it’s truly a remarkable sight. I’ve never seen so much hugging in a hospital ! I’ve never seen nurses and technicians that know so many children by name.
A little while in the waiting room listening to parents and watching the kids makes you realize that while everyone tries to be happy and forces a smile they’re dealing with some serious life and death situations here. Then when you consider the number of children in that building, all with some form of pediatric cancer, well, the enormity of it is overwhelming. You’re almost brought to tears watching a young mother cradle her infant daughter waiting for radiation time…staring into space, rocking slowly comforting her baby. There is a look that you recognize with little practice. It’s more intense than most expressions you see in a crowd. It’s a blank emotionless expression but in their eyes you can see a fear..no, it’s more than a fear, it’s a controlled terror. It’s held tightly inside but it shows in their eyes. You can see the mother searching for a reason, searching for an answer, searching for her daughter’s future.
You can see it in an older mother who’s brought her high school aged daughter. She’s been diagnosed with Hodgkin’s Lymphoma. She will start her schedule today..with radiation. It’s easy to see in the eyes of a young mother with a four year old in treatment while she tries to entertain her eight year old in the waiting room.
The parents sit in small groups while waiting for their child’s treatment to end. They talk quietly about where they are from and how they got there and how long they have to go. Uncommon words are heard in their conversations… words like medullo, pnet, ganglio and lymphoma. Words that these parents had probably never heard a year ago, now they know them..now they understand what they mean, especially what they mean to their children. It seems that the conversations never properly end. Someone’s name is called and they have to gather up the toys and sweaters and wagons and head off to the next line on the sheet of paper. Quick goodbyes and sometimes a hug, an encouraging phrase and an offer of prayers are said and they part ways..but not for long, tomorrow brings a new schedule and familiar faces back together again.
The kids are amazing. The veterans are busy playing with toys or puzzles or making pictures with the baskets of crayons that are everywhere. Some are riding their trikes down the hall and others are just bored with it all and sit quietly reading a book or talking to a parent…playing with a game boy or Nintendo or listening through headphones to music on their mp3 players. Another sure sign of a veteran is the hair…or lack of hair. Beautiful little faces smiling at you from under a completely hairless head. Some wear bold colorful hats or toboggans while others just let it all hang out not giving a thought to it. My daughter told me of one young girl..a teenager who had a beautiful head of hair and in anticipation of her treatment, shaved it off completely. And as the radiation took the rest, she painted her head !! The nurses and staff couldn’t wait to see what design she might bring in that day. Decorated for holidays or just random shapes and colors. This young lady knew what to do with lemons !! Some of us vain adults could learn a lesson here.
The new kids are apprehensive and stick close to their parents.. close as their skin. They watch everyone with scrubs as they pass and wonder what will happen to them. But it doesn’t take long before they are in the routine and feel safe and secure there. Our young Cole, who once was terrified every time a white coat came in the room knowing it meant pain, the needle sticks and poking and prodding…now refers to his nurses and technicians as his girlfriends. He has seven now and knows each one by name. He will also do things for them that he would never do for his parents or even his granddaddy ! One more trip across the room with his walker for Ms. Kelly (physical therapy) he does with a smile on his face. Blood pressure cuffs and tongue depressors with Ms Valerie (nurse practitioner) no fear !! This young battle scarred (big scar!! 33 stitches up the back of his head !) veteran knows the drill !!
Some of the kids in the Chemo part of their routine are just too tired and too sick to play.. the small ones lay curled up in their wagons, resting or sleeping with pillows and blanket pallets to cushion them. Some lay on the couches with their heads in Mom’s lap as she strokes them and comforts them as best she can.
As the day moves ahead, you sneak in a lunch break between appointments.. Usually all you have time for is a trip to the cafeteria for a quick sandwich. It’s also decorated with bright shapes and colors and offers a wide variety of dishes, none of which really resemble hospital food. A full breakfast can be had or a donut or pastry in the morning. Deli sandwiches made on the spot or a meat and three for lunch or dinner. A respectable cheeseburger and fries is always available or Starbucks coffee and freshly made cookies. And four can eat for about the price of two in the outside world. The staff eat right next to or with the patients, no separate doctors dining room as far as I could tell. Tricycles scoot through the tables and lots of kids have their lunch in their wagon.
Normally ( for Cole anyway) the radiation session is early in the morning, usually starting before 8 am. After he’s fully recovered and gotten rid of the grumpys, it’s down the hall to either physical or occupational therapy. You might think occupational what occupational therapy could a four year old need Well his major occupation is dressing, eating and using his hands. The surgery left him weak on his whole left side and at the beginning he couldn’t use his left arm at all. He’s gotten much stronger but still wants to use his right hand only. A visit to one of his girlfriends for a session has him using that arm more and to him it’s all a game. Amanda (occupational therapy tech) uses things like building blocks and picking up things with his right hand, passing it to the left then putting it in a box…simple games to Cole but he’s building back the use of his left arm and hand while playing. Today was finger painting in the Picasso style ..very abstract…but excellent according to Granddaddy. Hi fives and hugs for his girlfriend and we’re off to p.t.
Physical Therapy is in another area and you work on things like walking, balance and hand/eye coordination. A big open room is filled with lots of equipment from tumbling mats to exercise equipment and treadmills. One patient, probably ten or twelve is playing floor hockey with a technician (and beating her). He’s had a surgery similar to Cole’s the scar gives it away and the game is strengthening his legs and working on his balance and coordination. Today Cole is playing a game where he takes a stuffed animal from a bucket and walks over to a net and throws it in. But, he has to use his scooter (actually his miniature walker) to help him walk. It’s teaching him first how to maneuver the walker and of course working on the strength in his left leg. Cole loves playing with this girlfriend, Ms Kelly and she really seems to enjoy working with him. She has to also teach him how to get up from a seated position on the floor.. it seems easy to think about it but things are difficult when you’re weak and balance eludes you. Sometimes it takes several attempts and he gets frustrated, but she’s patient and encouraging and he finally does it. It just about wipes him out and they take a break to rest on the mats
After the break they go fishing with magnetic tipped fishing poles for plastic fish with the same type tip in the nose. This is strengthening his left arm and tuning his coordination.
There are three patients in the room at one time and each one has one or two technicians working with them, depending on their level of need. The techs make it all a game and fun for the kids and each one truly seems to enjoy the kids and works hard with them for every little bit of progress. At the end of the session, Cole gives Ms. Kelly an Easter cookie that his Grammy made, hugs and hi-fives are exchanged and we’re done with therapy and only have a visit with the doctor and nurse practitioner to finish up for the day.
We have a little time to kill and we continue with our tour. We walk through the clinic areas where the kids wait for their treatments. Large play areas with huge fish tanks and tables for coloring and computers with games are there to entertain them while they wait, and in every area (believe it or not) comfortable furniture for the parents ! The hospital has a very good library with lots of research material for the parents and families to use as well as computers and printers for Internet access. The hospital is divided into sections. The hard tumor patients use one set of clinics and doctors and the leukemia patients use another. Their treatments are very different and the kids with leukemia have different rules and procedures they have to follow. Infection is a BIG thing on that side since the kids have such low immune systems. Lots of them can mix with the others but have to wear a surgical mask to help keep the germs at bay.
The visit with the doctor is mainly to review and to discuss Cole’s problems with medication. The surgery left him with a very sensitive gag reflex and anything that taste bad or even causes him to burp will sometimes trigger it and up comes everything. We have a Catch 22 with meds. The medicine is to prevent nausea and vomiting but it taste so bad that it makes him do that very thing.. They decide that they can inject his meds straight into his central line and bypass the oral part. This seems to work better but Cole doesn’t particularly like it.. He’s still apprehensive about them messin with the central line.
A central line is a special intravenous line, called an IV. This type of IV is inserted through the chest and threaded into one of the large veins that lie close to the heart. A central line has multiple ports that can be used to: draw blood, inject fluids, and monitor central venous blood pressure. The good part is that it means no more needles in Cole’s arms, hands or feet. The bad news is that it’s a surgical procedure… hurts in the beginning and has to have daily care to prevent contamination and infection. It’s sutured into his chest and has two tubes that come out of the catheter.. all of this is covered with a sterile dressing and must be cleaned with a very exact procedure daily. It doesn’t hurt Cole now, (other than pulling the tape off !!) but he remembers when it did !. They let him help by pushing the plungers on the syringes to clean it so he’s involved and a big boy by helping. Anything that will make it easier for him.
Again the staff and doctors are very persistent about making all the procedures as pain free and easy on the kids as possible. It is so good to see them work with the children. It’s very VERY different from what he’s seen in other hospitals. I won’t say anymore about that. This hospital has spent decades perfecting their treatments and they have a success rate in the high 80 percentile. When they started…it was 4%!! But while they are a research hospital and must follow strict guidelines and protocols, they never forget they are treating children and the well being and comfort level of the children is a priority for everyone there, and it shows.
Finally the day is finished and we can go home, but not before we stop to see the sweet lady at the reception desk on the way out, she has a Hot Wheel car and she tells Cole that she’s been waiting all day to see you and give you this.Ԯ Just one more thing they do to make the little ones feel special. (this lady must have a wheelbarrow full of Hot Wheels in the closet ) It’s mid afternoon and the rest of the day and evening are free to do anything we want. Might be a trip to the zoo or maybe just to Wal-Mart for more toys…we always need more toys !! Most times we get him to take a nap with no problem, his routine is tiring…it was tiring for Granddaddy !!
Does it sound like I like St. Jude ? There hasn’t been one thing about this organization that I’ve been disappointed about, except of course the reason that WE HAVE TO BE HERE !!! The same is true of the Memphis Grizzly house and the Ronald McDonald House. They are all top drawer operations that make a very very difficult situation just about as good as it can be considering the circumstances.
I’ll make a suggestion to you…if you have a little charity money you need to donate or want to change up who gets what, or you know an organization that needs a charity to support… these organizations need your contributions. They do good things with your money. What could be better than helping a sick child You can research them on the Internet at the addresses below if you’re interested.
Visit St. Jude’s the web sites… their site is complete and gives you a very good view of the hospital, what it does and how it does it.
If you want to find ways to help … look here
Ronald McDonald house is an organization that provides housing for families in treatment…
Target House provides long term housing for families at St. Jude
Memphis Grizzlies House houses families for short term visits 1-7 days.
all of these facilities are charitable operations and depend on donation. Find one that you like and give to them… your dollars couldn’t be spent in a better place. They all supply safe comfortable accommodations and a strong support system for their families.