A Deeper Explanation

I often use this blog to either express humor or emotion and Melissa's Caring Bridge site generally shares the day-to-day, less emotional and matter-of-fact facts about what is going on with Harper.

But today, I want to just share a bit more detail on what Harper is currently going through, so people have an appreciation of her experience.  Some of this may duplicate things I've shared before, on different posts at different times, but I'm trying to put it all in one spot.

Harper is undergoing what is called a Tandem Autologous Stem Cell Transplant.  That's a long name, I know - but it basically means that she is getting 2 stem cell transplants, both times receiving her own stem cells.  The decision was made to do a "tandem" transplant in order to be as aggressive as we can be against her particularly aggressive cancer (as it showed signs of getting even MORE aggressive based on the most recent pathology).

In July 2013 Harper underwent a stem cell "harvest."  A temporary central line was placed, in her neck.  She was given high doses of Neupogen to stimulate her bone marrow to produce "extra" stem cells which were then present in her circulating blood.  Her blood was then taken out through the temporary central line, filtered through a centrifuge, the stem cells (and some platelets) removed, and then the blood was returned to her through the same temporary central line.  All in all they collected enough stem cells for her to go through transplant 7 or 8 times.  Since harvest, her stem cells have been sitting in cold storage awaiting the time they are needed.

In order to do a stem cell transplant, the body has to be "conditioned."  This works out to mean that high dose chemotherapy (or radiation - or potentially both, I suppose) must be administered to kill off the existing bone marrow.  The drugs used can be some of the same drugs that are used in "regular" chemotherapy, or different.  In Harper's case, the first set of drugs included both types.  She first received thiotepa (which she had never gotten) and then received cyclophosphamide (which she had received previously).  The thiotepa is generally reserved (especially in the doses used for Harper) for transplant situations because the drug completely kills the bone marrow.  If you didn't administer stem cells, the patient's bone marrow would take a long time to recover, if it recovered at all.

The thiotepa is only produced in Italy and is incredibly expensive.  It also has a pretty harsh set of side effects.  The drug "burns" healthy tissue and is eliminated from the body through excretions like sweat and tears.  This is important because if the excretion containing the drug sits on the skin (or any tissue) is can cause significant burning.  In order to protect from this, they administer water baths multiple times per day.  Still, they can't protect her completely, and so after receiving this drug Harper has burns over a lot of her body, especially in areas where she has skin folds, like under her arm or between her legs.  She also has some on her face where tears or saliva would have been when she cried or drooled in her sleep. 

The burns from the thiotepa extend to more than just her skin, but also are present where any secretion might be - including her mouth, throat and the entirety of her gastrointestinal tract.  This manifests in mucositis - or sores in her mouth, throat and GI tract.  The pain from this is pretty excruciating, requiring strong opioid pain medication given through a Patient Controlled Analgesia (PCA) pump.  Just like after surgery, she is receiving constant pain meds with the option to "hit the button" when the pain is not controlled. (Harper doesn't like pain meds and resists pushing the button - so we have to do it for her, especially when she is moaning in her sleep)

Once the bone marrow has been killed off, and the chemo has a chance to start leaving her system, then the stem cells are infused.  It's a pretty simple process.  They are thawed and then administered directly into her blood stream through her Central Line.  The only real "issue" is the preservative used when freezing them - DMSO - can cause a reaction, so they monitor her very closely after administration.  The DMSO is them excreted through her breath - filling her room with the distinct aroma of creamed corn for several days.

Once the stem cells are in her body - we just wait.  The stem cells are supposed to find their way into her bones and begin to repopulate her bone marrow.  In the mean time blood cells that are produced by the bone marrow are then in short supply.  These include red blood cells, white blood cells and platelets.  The red blood cells and platelets can be supplemented through transfusions, but the white blood cells cannot.  So, while we wait, Harper essentially has no immune system.  Until her white counts recover, she is not allowed to leave her room, visitors are pretty strongly discouraged, and the nurses and doctors use precautions like gowns and sometimes masks (depending on the situation) to protect Harper from anything they might have or might have picked up while caring for another patient or patient's family.

The pain associated with the mucositis also prevents eating and swallowing.  In preparation, the day after her stem cell infusion, but before the mucositis really set in, they inserted an NJ tube (naso-jejunal).  This tube goes through her nose, down her throat, through her stomach and into her small intestines.  This allows her to receive nutrition and oral medications without having to swallow.  It also reduces the likelihood of vomiting from these oral meds and food (though it doesn't eliminate the vomiting completely.  Harper hates it, didn't want it put in, and had to be completely sedated in order to have it inserted.

Once the stem cells "graft" (the term used for repopulating the bone marrow) her counts will slowly rebound as the bone marrow grows.  Her counts will see-saw for awhile, going up, then down again.  Once she reaches an ANC of 500 consistently (several day) and assuming no other complications she will be allowed to go home, with severe limitations on what she can do, where she can go and who she can see.  She will be seen daily at the hospital for weeks to monitor her recovery.

For most stem cell transplants, the recovery would go from there.  However, because of the tandem, after a few weeks at home (we're hoping will overlap with Christmas so she can home for the holiday) she will be re-admitted to the hospital and the entire process will happen again.  The second time they will use a different set of drugs, but they will come with their own complications, will kill of the newly grown bone marrow, and we will have to wait for the second infusions of stem cells to repopulate and rebuild in order for her to finally come home to stay.

All of this is intended to give her the BEST chance of eliminating ALL the cancer cells in her body.  It is excruciating, and it is so very hard to separate the family for such an extended time, but it gives her best chance at long-term survival.

If you made it all the way through to this point, you hopefully have a better appreciation for what Harper is experiencing and what the next few months hold.  If all goes smoothly, Harper will be home and recovering by February.