About August | Dad Update

August came with a lot of events.  The good, the bad, the ugly.

The last week of July, my parents left to live at Hope Lodge while dad underwent treatment for his second bone morrow stem cell transplant.  (He had his first one on October 14, 2010.)  Hope Lodge is a place where patients can stay for free while getting treatment for cancer.  You live in a room with 2 twin beds, a small closet and dresser, and a bathroom.  You share a kitchen with all the other patients who are getting a bone morrow transplant and you get a small cubby in the fridge, the freezer, and in the pantry to house all of your food during your stay.  You live on the honor system that no one steals your food, however, that does happen sometimes.  It is like living in a college dorm, except half the people there are bald and there are various types of sanitation rules you must follow for the safety of the patents and you pray to God that everyone is doing their part to keep the place clean. 

It is rough living.

Instead of having treatment done at a hospital, it is done in a separate building called the cancer center.  It is white and clean, and every door has a sink and sanitation dispensers.  Before you enter the BMT (bone morrow transplant) section you must wash or sanitize your hands before entering.  The reason for all of this is because BMT patients do not have an immune system.  For us regular folk, you get a cold, you feel miserable for a day, your back to normal the next day.  BMT patients can’t fight a cold.  It has the potential to become something severe and they can’t fight it and win.  This is the main reason BMT patients don’t have their treatment done at a hospital.  Hospitals are covered in germs and have just about everything imaginable floating around their halls.  Not a good place for BMT patients. 

The transplant process looks something like this.  2-5 days to harvest cells, 2 days of chemo, 1 day off, transplant day, 28 days to engraft your own cells, 100 days (from transplant day) to recover fully from the transplant. 

Confusing, right?

On July 23^rd, mom and dad went to KC to harvest more cells.  (Mom went too because dad has to have a 24 hour care giver during this process.)  For this particular transplant they don’t use a donor.  Patients have a much greater, positive, outcome from using their own cells rather than someone else’s.  Because of this, they must harvest their own cells.  Patients are hooked up to a machine that looks like a dialysis machine and they sit there for a few hours while harvesting.   This process can take 2-5 days depending on how many cells the can get from your body each day.  Before dad’s first transplant back in 2010, dad harvested cells and got enough for 2 transplants.  Even though he had enough for this transplant, he was healthy enough to try again for a potential third transplant.  (New advancements have shown some people can undergo 3 in their life…this wasn’t true 2 years ago.)  Dad harvested for 2 days and they got more than they needed (enough for almost 2 additional transplants.)  He got to come back home for the rest of the week before the transplant actually took place.

Then the following Sunday they left again, but this time for a much longer period of time.  On July 30th and 31st, dad had chemo.  This isn’t just any kind of chemo, it is the kind that takes you as close to death as possible without actually killing you.  (Some people aren’t so lucky…)  These days actually aren’t too bad because it takes about 5 days to feel the side effects. 

Then he got a day off to relax and let is his body have a break.

And then the big day came.  On August 2^nd, dad walked into a secluded part of the hospital to receive his cells.  This must be done in the hospital in case something goes wrong and then after a few hours he is released and goes back to Hope Lodge.  There is no surgery involved.  They just push his cells back into his body through his central line. 

After this he usually sleeps most of the day.  Each day he goes to the cancer center to have his blood checked.  There was a set of days where his potassium got low and he would have a few bags of potassium…one day he got 4!

For about 2-3 weeks after the transplant he got really sick.  He tired to eat but he couldn’t keep any of it down (or in).  (This is the complete opposite from his first transplant.  During that one he refused to eat and never got sick.  It is important that he eats because he needs the nutrients from the food to help him get healthy.)  There was one day where his temperature reached 100.5 and he had to go to the hospital.  Thankfully the doctors didn’t see this as too alarming and he was only there a few hours and got to come back to Hope Lodge.  (You have to call the doctor if you get a temperature of 100.5 of higher just to make sure you don’t have or are getting an infection.

They check various things in his blood before they declare him healthy enough to go home.  White count, platelets, ANC, among other things.  The biggest number they are concerned with is the ANC.  It shows if his cells have engrafted and if his body is starting to produce good healthy cells on his own.  Once that hits 20, they let you go home (as long as everything else is going well.)  This time it took him a little longer for his blood work to be ‘good.’  On the 21^st his ANC was at 15 and by the 23^rd it only got to 16.  Dad was anxious to go home and the doctor said if he gets to 17 or 18 by Saturday then he would let him go home….even though he wasn’t at 20.  On August 25^th, he had his blood checked and he was at 17.  And guess what!  They let him come home! 

He has been doing really well since he got home.  He is pretty much confined to his bedroom (except doing to the doctor).  He sleeps most of the day, but that is normal.  While he might not agree with me (or anyone else), he is doing better than the first transplant. 

In 2010 he wouldn’t eat.  It was hard to get even 2 bites down.  He couldn’t get out of bed and had to use a urinal.  He could barely walk and used a walker in the house (when leaving to go to the doctor) and used a wheelchair at the cancer center.

In 2012 he is eating.  Not hefty amounts, but enough.  (He can eat a whole hotdog or hamburger and a few cookies or peanut butter cups.)  He can get up to shower, go to the bathroom, and walk around.  He can walk into the cancer center without any help. 

It is a major accomplishment. 

His numbers in his blood work might be a little bit slower to respond but his overall daily life is much better.  I mean, how he is doing now could be compared to how he was doing after the 100 days was up.  We are only 33 days in.  Major difference.

However, we still have a long way to go.  Dad is confined to his bed until the middle of November.  Then he will go back to the KC cancer center and be reevaluated.  We will find out how/if the transplant did any improvement.  And hopefully we will find out that it has sent him into remission!