Cari’s Blog #18

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Cari’s Blog Number…Something

I know you’re all waiting for an update….so I’m going to try to as best as I can.  The truth is, I’m at a loss for words.  My friends and family have kept my spirits up all day long but I’m honestly not sure what to say to all of this.  So I’m just going to give you the facts…

Eric was supposed to go to Daytona today.  I was supposed to take him to the airport, and then I was going to move home with my parents for ten days so that I could hang out with my nephew, and sisters more, see my sister in laws in TR for a lunch date, Eric was going to go see his Grandpa, and then go to Harley’s bike week down in Florida.

His doctor yesterday decided to do a brain MRI because of these terrible headaches he’s been having.  He just wanted to double check and make sure it was safe that he got on that plane.  It’s a darn good thing he checked because had Eric gotten on that plane, he may have lasted on adrenaline for a couple days, and then who knows if he’d have made it home.  (That’s a lot less blunt than his doctor put it)

His MRI showed something was up, his doctor said it could just be an infection in the brain, or it could be leukemia, but we had to get to froedtert ASAP.  I grabbed as much of Eric’s stuff as I could, and threw it into a suitcase we still had out from a Chicago trip we had gone on.  I got him in the car and off we went.  We sat in his doctor’s office for a bit waiting for instruction, and after what seemed like a lifetime some doctors walked in and told us they were going to do a spinal tap to figure out if it was cancer or not, and then to give him some chemotherapy, “just in case.” So off to another part of the hospital we went, called the day hospital because they didn’t even have a room for Eric ready.  We waited there, and were told they were going to do the procedure there, have him wait, and by the time they were done,  his room would be ready.  That wasn’t the case.  I got told that he had a room, I should move the car, get his stuff up there, and then I would be there for the procedure.  That wasn’t the case either.  I went straight to the room I was told to go to, and there was a man in there that wasn’t my husband.  We figured out his room wasn’t ready, and I got put into a palliative care room where they put families who know their loved ones are on their way out.

Finally they came in and told me Eric’s room was ready.  I went in, waited, waited, and waited some more, only to find out they did the procedure at the day hospital.  It’s ok, big hospital like this, those things happen.  I was just glad to see my husband.  The rest of the night didn’t go so well.  Eric threw up all night.  I slept in a make shift bed out of two chairs, and then at  5am moved back to the palliative room for three hours of sleep.  Weird how that happened because I woke up and something said “get back to Eric.”  I did.  No later than I walked into the room and sat in the chair-bed did his doctor come in to confirm the worst.   Eric’s Leukemia was in his brain.

We cried, we hugged, we cried some more and then Mary finally came down.  She was here for most of the doctor visits.  I was told we were meeting with the radiologist at 12:30pm so it was now 10 am and I rushed out to get back to Port Washington to quick shower and grab me some stuff.   I honestly made it back just as transport was there to take him down to his consultation.

We had originally thought he had the maximum amount of radiation a person could ever have in their lifetime.  We were told by the radiation technologist that’s not the case.  That’s for Total Body.  Since they were going straight to his brain and localizing it, they could do more. So he’ll be getting ten doses of radiation, and chemo twice a week until his spinal fluid comes back clear. His cerebral spinal fluid had 90% leukemia in it.  A Normal person would barely have ANY cells in their CSF…Eric somehow managed to get Leukemia in his.  The fitted him with a mask so they hit the same spots every time and then sent us back to his room.  We were told he was going back down at 4:30 for his first radiation treatment.

Tomorrow he goes in for another round of radiation, and then they’re going to do a spinal tap again and take some CSF to check for leukemia cells and give him some more chemo.  On Monday, they’ll put a port in his head, that will permanently leave him with a soft spot, kind of like when you have a newborn baby. That will make it easier for doctors to inject chemo straight to his brain, and also take some CSF out.

We’ll have to take this one day by day, but Eric’s doctor’s are saying that getting this stuff out of his brain is what we should be focusing on, and not the .02% of leukemia they found in his last biopsy.  These are TWO separate occurrences, so we have a long hard battle ahead of us…

We continue to thank you for all your love and support.  The outreach we have gotten today has been insane.   We love you guys!