Tuesday, April 22, 2014

Two Weeks Until We Resume the Pre-Transplant Workup

When we go back to Seattle Cancer Care Alliance (SCCA) on May 6th, we will basically pick up where we left off.  I am assuming there will be some activities that we will not have to repeat (such as the dental consult, lung CT, heart echocardiogram, and classes about how to care for a transplant patient).  We will likely have to repeat things like the extensive virus screen and a massive amount of blood tests.

Ryan will also have a new central line placed, some reproductive tissue cryopreserved and banked at the University of Washington for his future use, and one final bone marrow biopsy before transplant.  I really don’t know what to expect from the bone marrow biopsy at this point.  There could be proof in his marrow this time of the Myelodysplastic Syndrome (MDS) that the doctors suspect, there could be a re-confirmation of his original Aplastic Anemia diagnosis, or he could remain a medical mystery.  Whatever it is, I suspect his bone marrow will look different than it did two months ago at the last biopsy, and I am very anxious for the results.

When we left SCCA in February, the doctors had us stop Ryan’s immunosuppressant medication, Prograf (tacrolimus).  They said that nothing in the many tests Ryan has had indicates his bone marrow failure is due to an immune process.  So, in theory, the medication should not have been helping him.  What’s interesting is that once his medication was stopped, his neutrophil/ANC (type of white blood cell) and platelet counts tanked.  He has been burning through platelets almost as fast as when he was first diagnosed, and his ANC has been hovering just over 200, which puts him at high risk for infection.

Here is the very strange part… He hasn’t needed a red blood transfusion since early February.  That is nearly three times as long as he normally goes in between transfusions.  His red blood cell count is still low, but his hematocrit has been bouncing up and down in the 23 to 25 range. (20-22 is his normal threshold for transfusions.) I am not sure what to make of this and will be curious to hear any new theories that the transplant doctors may have.

Even though his red cell count has remained somewhat stable, there are components of his blood tests that have been steadily increasing and are now outside the normal range.  For example, his MCV is now 100.8 (normal is 75-87) and his MCH is 36.3 (normal is 25-31). His RDW is now above normal as well. I have found information that indicates these elevated counts may be consistent with MDS.

If all of this sounds like a foreign language, it really is.  Before Ryan’s diagnosis, I never realized how complex our blood is.  Look at your lab results the next time you get a complete blood count (CBC) at your annual physical.  These numbers are all there, but most of us never have to figure out what the heck they mean.  I include these mind-bending acronyms and counts in my posts mainly to keep a record of them for myself.  I also know there are some fellow Aplastic Anemia families following my posts that, like me, have had a crash course in hematology/oncology and most likely know exactly what I am talking about.  I think all of us that have gone through this deserve honorary medical degrees.  I have definitely put in my time studying this topic!

Ryan at Clinic Yesterday Waiting for His Lab Results

A relative of one of the nurses comes in as each season/holiday changes and paints scenes on the glass doors of each patient room.

Saturday, April 19, 2014

This Easter is Different

Every year, Ryan’s Grandparents host Easter.  The highlight for all of the kids is a garage filled with hay that is laden with treasures.  The kids pile in and dig for eggs full of candy, money, and toys.

Ryan can’t participate this year.  In fact, he isn’t even supposed to go in the garage tomorrow because there is a fungus in hay that can be very dangerous for immune compromised people.  I feel so bad for him.  We are constantly having to tell him “no.”  He can’t go to school, can’t see his friends right now, can’t go to birthday parties, can’t go out in public, isn’t supposed to dig in the dirt outside (same reason as the hay), can’t climb up in his fort (because a fall could cause him to hemorrhage), the list goes on.

He is disappointed and even asked if he could stay home tomorrow.  However, I am going to try to make the day fun for him.  I have wrapped up treasures in orange tissue paper (his favorite color) and I plan to stash them around Grandma and Grandpa’s house so that he can have a scavenger hunt indoors while the other kids are out in the hay.  Hopefully he will enjoy that.

The picture of him above is from last year’s hay pile – about 3 months before he was diagnosed.  I have noticed that last year’s Easter pictures are the last pictures we have before he started to look pale and get bruises and petechiae (red dots on the skin from low platelets).