We ventured a very slow tube ride too!Tenley Foundation.
Some of the moms of local cancer fighters...we love to hate cancer together.
I forgot to make posters about the Tenley Foundation so the people on our side didn't know what our float was for but that was okay, we had fun being patriotic anyway.
Last summer we missed most get togethers and reunions so it has been so much fun this year to have a 'normal' summer. I find myself worrying about fevers, germs, and hospital stays less, I even unpacked the clothes from the hospital 'to go' bag, though the hospital activity bag and toiletries still ride in the van with us wherever we go. I have everything we will need next time he ends up staying in the hospital in that bag (including Lucky Charms and his very awesome 'I Spy' blanket) so that means that now that I am totally prepared we won't end up having to go right? So far so good, the last two times he has fevered he has had a high enough ANC to be able to go home and it has been over 3 weeks since he fevered! It is strange to be normal, its almost like we are holding our breath waiting for the next bad thing to happen but the longer we go with nothing bad happening the less we 'hold our breath'.
We go to his monthly Primary Children's appointment on Tuesday. He won't be getting a CT scan of his lungs that we know of, so I think that means he will be on his voriconazole (antifungal) at least until his August appointment. Darn fungus is hard to get rid of! We got the statements back from insurance for what they paid (we get some kind of medical statement in the mail, usually multiple ones almost every day) for the voriconazole...guess how much that stuff is...about $900 a bottle!! One bottle lasts Tyson about 6 days because he is taking 240 milligrams twice a day, we just have a copay because our insurance is awesome and our case manager who deals with treatments associated with clinical trials has been very good...we are very very very very very very thankful for good insurance!
Anyway..his appointment should be a normal one with an IV (yes pokie prize is ready), a methotrexate back poke (he gets sedated for that), vincristine, and a CBC. I'm curious as to what his blood counts are and what that will mean in regards to his chemo pills dosage. We will find out Tuesday! I'm guessing they will be holding off on the steroids again since fungus likes steroids. We will also be finding out that day if it will be safe to head to another family reunion. We have made plans so that it will work out either way, hoping to go, but if some of us need to stay home to keep Tyson safe we are okay with that too. We'll see how things go.
Whew! Thanks for reading! That was a long one!
Praying for Timmie, Boo, Lillie, Millie, Tenley, and so many others. We are so thankful there are great doctors and nurses and researchers out there trying to help these kids!