Adrian’s Story

Site created on March 24, 2018

This is the story of my Tank and his journey with a rare neuroendocrine tumor and updates on how he is doing . Thank you all for joining our journey and we love each and everyone of you . Please feel free to share our journey and know we hope our story will bring more knowledge to another child with possibly the same obscure symptoms and possibly assist another child with this rare illness .  As always live your life hard but love harder




MacNCheese 


Carrie( Caroline )


#aaroneffect

Newest Update

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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