Journal entry by Caroline Florom

I don’t think anyone can prepare you as a parent for seeing your child in intractable pain. I haven’t been sharing this part of Tanks journey much because wowsa.. it has been uncomprehensible even to me . As many of you know, I have done my time working Hospice care .. and still nothing has prepared me for being so helpless when Tanks pain lasts for hours on end . Today was sadly again , one of those days.  I’ve noticed that they have been increasing some ending us up in ER . Sometimes it’s epigastric. Sometimes it’s literally in his left upper quadrant where his spleen and liver are . ( it’s crazy how I can see them protruding at times ) Today started with us dashing off to drop off Ash at school for Fsa ( ya know that test that scares all of schools in Florida ) and then to JD for yet another abdominal ultrasound with Doppler and since we had labs ordered by endo some labs for catecholamines ( lol and jug in tow to collect any last urine for Tanks 24 urine test for catecholamines) As a nurse , I saw that Tanks urine is crazy frothy and bubbling but again preferred to not see a zebra but a horse . 
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 


xoxo
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