Day +61

This is day +61. Sebastian is making a leap over what is hopefully his last hurdle. Tuesday he underwent tongue, lung and bone marrow biopsies as well as another lumbar puncture (l.p.). He could have waited another week for the l.p., but elected to get it all over with at once. Some of the test results are in and others will be in next week. Already we have enough information to understand why his tongue is sore, his lung nodules have grown and a fever surfaces every morning. The CMV virus is guilty on all charges. CMV is also in his bone marrow. Additionally, his old acquaintance, Epstein-Barr (Mono) virus has decided to visit his same organs. I am pleased it was not Graft vs. Host Disease in his lungs! To date, we have no definitive answer on why his ed blood cells are lysing (dying) off.


Why all the viruses? These are viruses that Sebastian already carried in his body prior to transplant. Having his immune suppressed has allowed them to resurface. It is very common to have CMV post transplant; 6 out of 10 transplant patients deal with it at some level. In Sebby’s case, the lungs need to be addressed in order to prevent pneumonia. As I write, the doctors have already increased the amount of Foscarnet, a medicine that addresses CMV. He just finished another med that targets the Epstein-Barr virus. Every drug has side effects. Foscarnet has kidney concerns, but his kidney dr. has already been in to see him and will be monitoring closely. His other medicine options have harsher kidney or bone marrow suppression side effects. So Foscarnet is the choice for his situation at this time.


Mostly, he wants the drain tubes out of his lung! His lung doctor has to do the procedure, so we are waiting for him to stop in this evening or tomorrow, depending on fluid levels, etc. It is uncomfortable to say the least. The viruses are not causing him pain and we are grateful for that.


In summary, he is a fighter that has not given up his skating credo. He is staying strong and doing his part. He is eating even though food hurts his tongue. He even did an interview last week for the East Valley Tribune. Hopefully, it will inspire others to become bone marrow donors. Sebastian would not be dealing with such big CMV issues if he had obtained a ten out of ten match. But no donor was available. His match was nine out of ten. There are other issues surrounding the subject of research as well.  If you are interested in reading the article, it will appear in this Sunday’s edition. We will be reading it for the first time too.


2 Comments to “Day +61”

  1. Eloquently written Mama! You’re an inspiration! Love, Chantel

  2. Thank you for the update. Well wishes!

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