The part that’s hard to share
We ran into Tanks hematologist/oncologist strangely while checking in - she chatted me up for a second and somehow has been leaving messages on a cell that she thought she was leaving for me . Nice eh ? Can’t make this crap up ;) seems that our Tank might also have spherocytosis ? ( yup I know what it is but totally out of my realm) and I told her about the labs tests today for endo and how bad the nights and some days and how Tanks pain is just horrible and lasting hours on end . She is pretty darn cool and said maybe gastric and spleen etc - I did my mhm I dunno thing and we will see her next week . She is kind of like most of my medical peeps and intrigued but at least I’m sensing a team player here .
Tanks labs should finalize exactly what some of the other stuff is . Which kind of crazy abnormal cell is growing erratically .
Needless to say , this is not coming a moment too soon . After the abdominal ultrasound I took our guy for a lunch date - noting how he looking so tired .. big circles . But we tried to keep it fun and light and he started crying . Like at 1230 crying . Hysterically . Bright red his flushing . Nothing calming him . Again . Saying his back hurt so bad he can’t stand it anymore . Well after so many er visits we called our fave pediatrician and got an appt at 4:10. Got Ash picked up by 230 but Tank stayed home with me . Crying inconsolably . Tried the stupid Motrin and then two hour later Tylenol routine . Nope . Literally no relief . This from a kid who never had even a headache in life before all of this . And here we were - as we have been lately for over 3 1/2 hours almost daily of such bad pain he can’t sit still .
By the time we got the pediatrician his bp was so high the wrote unable to get . And yeah . Sigh his kidneys are now also enlarged and there’s blood in his urine .
And now we hope a strong medicine will make sleep ok tonight and hope and pray tomorrow will simply be a better day - and the new ultrasound will be in
ok lol vent over - love you our village
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