Progress

Hi everyone.  Sorry we have been a little lacking with updates and information. Things had been very tough but finally they are starting to get better. There has not been much change or new medically to report on, just trying to heal.  Sam spends most of her time in bed, still weak recovering from her surgeries and procedures. So to make up for it I’ll kind of do a recap of where we are. I’m sure it will end up way too long…sorry.

Sam underwent a multi-visceral transplant on October 1, which removed her pancreas, liver, gallbladder, spleen, stomach, both large, and small intestine.  A five-organ single donor graft, consisting of a pancreas, liver, stomach and the small and large intestines, replaced the removed organs. The new organs were still all connected to each other as one large graft. The spleen and gallbladder, which do not transplant well, were eliminated, as the body does not need those organs anyways, to survive.  Multi-visceral transplants are relatively new.  One of the pioneers and possibly the worlds leading expert on the procedure is the doctor here in Miami, who performed the surgery on Sam.  He is surrounded by a wonderful staff whom we deal with on a daily basis. 

Sam came to Miami for the procedure after 10 rounds of chemotherapy in nine months which failed to eliminate the pancreatic cancer, which also had metastasized to her liver.  The chemo appeared to have slowed or stopped the growth in the pancreas but the liver tumor(s) kept growing at an alarming rate.  The plan then was to do the Whipple procedure on the pancreas, and then eventually transplant the liver.  Twice that procedure was scheduled then aborted at the last minute due to complications. After the second failed attempted we were contacted through this blog from a mother who was following Sam journey after she found it by googling “pancreatoblastoma.”  Her daughter had contracted this rare disease and she came across Sam’s blog in her research.  Her daughter’s story is very similar to Sam’s but with different surgical complications.  Her team reached out across the country and some of the top doctors at the top facilities came to the conclusion that her best option was the work that was being done in Miami by Dr. Tzakis.  We contacted Doctor Tzakis who was willing to see us right away.  After several long months of paperwork and numerous tests and procedures, the doctors and insurance company all agreed that Sam’s only hope medically was through this multi-visceral transplant.

By this time Sam was not eating and in a lot of pain.  She was too weak to travel, but with a nice little send-off by the staff at Comer Children’s Hospital in Chicago, Sam was medevaced by jet to Dr. Tzakis at Jackson Memorial Hospital in Miami.  After a few more weeks of adjustment and tests, Sam was found to be a transplant candidate and placed on the top of the donor list.  A few hours later a donor graft became available and Sam had the surgery.  All the visible cancer was removed.  Some of the doctors on the surgical team stated that they were amazed and surprised at the size of the liver/tumor that was removed from such a small child.  They wondered how she was able to function with the pain it must have been causing. 

Because of the growth of the tumor extending out of the liver, the doctors decided they needed to go back in and clean out that area for cross contamination. Unfortunately this had to be done two days after they just went back in to do a routine surgical (5 hour) procedure due to expected complications from such a major surgery.  These three surgeries in these first weeks of October literally took everything out of Sam and left her already weakened body extremely fragile.  However, the doctors stated that considering there is no larger surgery a person can have, she was doing very well.  As the weeks went by Sam got even weaker.  With all the surgical pains, ongoing procedures, all the different complications, not being able to eat, her new ostomy’s, draining tubes, feeding tubes, central lines, ports, difficulty breathing, and a few scares, Sam was understandably left bed-ridden and not quite herself. The usually communicative, upbeat girl has remained loveable and sweet, but has given up interest in her cell phone, computer and almost everything else.  So to all of you who Sam usually communicates with regularly, it’s not you.  Give her a little more time to start functioning again on her own.

Sam has now been out of the hospital for about three weeks.  Even though she still needs constant care, the doctors felt they needed to get her out of the hospital for both her physical and mental well being. She has been hospitalized since September 2 with the exception of a few times for a few days. 

The plan now is to try to get Sam’s strength back by eating and physical therapy, while keeping her infection-free and out of the hospital. Sam has lost 50 pounds since this all started and still does not have an appetite without the help of pills.  When feeling good enough, the pills will give her the munchies for a few hours during the day and we will feed her whatever she wants. As far as her physical strength Sam can only walk about 20 steps before she is winded and too tired to go on.  Until recently she was hooked up to her IV pole and oxygen all the time, which slowed us down.  Sam is starting to have a good day now and then, so progress is being made.  As she is now getting off the IV fluids and oxygen we are also hoping to eliminate her NG feeding tube this coming week.  That tube goes through her nose to her stomach and I think it is the cause of some of her ongoing nausea and dry heaves issues.  She also has been off her TPN (feeding directly to her liver) since Thanksgiving because that was casing problems.  So if we can keep her from getting dehydrated and malnourished by eating, we will be eliminating a few more tubes and connections.  Progress.

Sam also has pleural catheters in on both sides of her chest.  These go through her ribs (causing a lot of pain) allowing fluids which the body normally absorbs, to drain from her chest cavity.  The build-up of these fluids has caused her a lot of breathing problems including collapsing of her lungs.  The good news is the fluid appears to finally be slowing down to where she might be able to get those removed this week. But we’ve been fooled before. 

So if all goes well this week, Sam will only have three medical extensions left in her body: The two ostomys  and her port line.  Once we get to that point I think Sam will start bouncing back quickly.  The ostomy opening give the doctors access to check for rejection of her new organs.  These should be open for many more months.  Sam’s new organs have been functioning as good as can be.  Not once have they shown any signs of a problem. Her port will also remain for some time. They currently use it to draw blood.  Her daily medication varies depending on her blood draws, which she gets frequently. Also some medication and IV fluids are still administered through her port.  The port she currently has is not the same one she arrived with. When Sam was fighting an unknown infection they pulled her old UCH port as a possible site/source of the infection. She now has a new one inserted on the other side.  This port probably will be utilized for more chemo for Sam.  The plan down here has always been to remove the cancer, then once she has healed enough and gotten strong enough, to do another round or two of chemo.  The reason is to kill off any remaining cancerous cells still in her system. There are no visible signs of any tumors in her body, but everyone feels it that it would have been impossible to have pulled all cancer cells out of her.  So hopefully another dose of chemo will kill off any cancerous cells or at least keep them from growing or mutating. At the same time they don’t want to over do it and cause damage to her heart or new organs in her already weakened system. 

Sam’s doctors since the time of the transplant wouldn’t discuss the cancer issues until she is recovered from the transplant surgeries.  Well we are just starting to have those discussions now.  Last week Sam had a CT PET scan and based on those results I assume we will start discussing what’s next.  We have a long way to go but I think Sam is starting to turn a corner. Right now she still cannot function on her own and still needs the assistance of both Dolly and me.  Once she starts to be able to take care of herself a little bit, Dolly and I will try to split time between home and here. A decision has still not been made of where the chemo treatments will take place; if it is going to be back in Chicago or Houston. Sam will still have to be seen by her transplant team here, but now I am getting ahead of myself.  One step at a time.  I was going to update on life here in our little apartment and things back home, but since this grew so long I’ll save it for another time.

Last night after 24 hours of snow was Bob Frank’s Family Fundraiser at Hoffman School.  Where do we begin to explain or articulate our feelings of gratitude for not only the time and hard work put in by so many people but also how it affects us? People who have been long time, dear friends, and people we barely know or don’t know at all.  Thank you everyone who attended, volunteered, donated or contributed in all the different ways.  I have been hearing wonderful stories all morning that are really touching.  How do you thank schools?

We could not have accomplished everything to bring us to where we’re at now without all the help and support from everyone.  Sam would’t be here now if she didn’t get the transplant when she did.  She is enduring a lot to get her strength back to continue this fight. She is past a point where people, stat’s and the books said she would never go.  She is a pioneer hopefully opening doors for other people too.

Lots of love,

Chris