Yesterday, Emmy and I headed up to Madison for her monthly appointment with her transplant team.  She also had an appointment with a dermatologist that the transplant team wanted her to go visit because of a rash around her nose.  We started our day at 8:00 getting her blood drawn.  Whoever invented lidocaine is an awesome person.  It has made her blood draws a 100% better.  Then we headed to her 8:30 doctor’s appointment.  At the appointment, many things were discussed.  Emmy has lost some weight so she is going on a high protein diet.  Emmy’s medications were reviewed.  She will be getting off cyclosporine in about a week, but will have to continue all of her other medications until January.  We were under the impression that when she stopped the cyclosporine all the medications would stop, but she needs to continue to take her medications that will help her fight off infections.  This means Emmy will continue her timed medications and fasting throughout the day. The team was also concerned that Emmy’s eyes continue to look red and irritated so Emmy was referred to Ophthalmology to determine the possible cause (i.e chemotherapy).  Emmy’s blood counts were good.  Overall, Emmy is making good progress! Overall, the team says she looks healthy, blood count numbers are good, and she is on track with treatment.  

The next appointment was at 10:45 and took us to dermatology.  The dermatologist determined that Emmy has a type of infection  that can be taken care of with a topical medication.  However, Emmy’s rash is already looking better from when we first made her appointment so the doctor is going to have us wait to use the medication.  The doctor wants us to monitor the rash and if it doesn’t continue to get better then we use the medication for a month.  The dermatologist also told me that Emmy should stay out of the sun between 11:00 and 1:00 because the voriconazole (medication) can age her skin by 30 years.  We knew she had to stay out of the sun or be covered, but we didn’t know how severe the side effects were to her well being. 

Emmy’s next appointment is a big one, which is July 28th.  It’s her 6 month appointment!  Dr. Hoffman has ordered two blood tests for that appointment.  One will look at how much of Parker’s bone marrow is present in Emmy.  The other test looks at Emmy’s T cells.  Emmy needs to be above 200 to be heading in the right direction.  However, it maybe lower at first and then they keep retesting to monitor the level until it reaches 200.  This magic number can open many doors for Emmy….school, fast food:), and starting to go back to a normal life.  The problem is if the pandemic gets worse Emmy’s hopes of going back to school decreases.  However, Emmy has said she feels positive she will hit her 200 count so she can return to school and eat her fast food! 

Emmy has been doing great this summer and had a great attitude even when she has had to miss so many activities and has missed not seeing her family and friends.  The doctor’s appointment reminded me that she is still ill and we are still in this battle against aplastic anemia.  My wish for her is to have the doctors tell her “Emmy you did it!”  However, for now we will take “She looks good and is on the right track!”.  #fighter