Journal

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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Journal entry by Caroline Florom

The Tank truly amazes me everyday with just who he is . As we sit here doing his home bound online he truly knows all of this end of sixth grade stuff . Makes me wonder if he should of been doing virtual for a long time - and then he could go at his pace and be challenged ? Things that make one go hmmm .. 
 We have a crazy busy week ahead with lots of answers I hope . I can literally watch his levels go up every night as he turns crispy pink and grumpy . I’ve learne that chocolate and bananas are not even close to good for him the hard way !( they both have higher levels of catecholamines )

Ash has end of year testing the next few weeks - so  I’m doing my best to keep everyone calm and tank out of er - Ash knows my philosophy on tests verses learning. Why not just teach to learn ? Hmm 

Tank has the endocrine super doc who I just adore this week and his oncologist so let’s pray they have fixes and cures .


Please keep the boy in your thoughts as this weeks testing is painful and exhausting. 


You are are our village and my strength in all ways . 

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Journal entry by Caroline Florom

As we make big decisions for the next path and treatment ( good times .. ) I sit watching what increases dopamine levels do to our Tank .. he flushed all over now .. and gets cranky ( thankfully he didn’t have a hot temper before so one would think it’s typical preteen stuff) and well .. it’s alot. I’m so thankful to all my “ village “ that make sure we are ok.... I have seen  a lot of true perspective lately on well life .. and I Appreciate all of you .. 

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Journal entry by Caroline Florom

Sorry all for the lack of updates - 


 


It’s been crazy and not that much fun the last few weeks. Last week alone we had three ER visits - and honestly with the kind of pain he was in last night probably could of had five . 


 


His spleen has increased again in size so when he eats or walks or does much of anything it is causing ridiculously bad pain . 


 


A normal 12 year old spleen size is 11cm 


Tanks is now 16.1 it was 14.0 two weeks ago. 


 


The bump you see in the picture is his spleen. We did see the oncologist and our endocrine and of course the GI( and another cardiologist has cleared him again even though when he is “flaring “ and turns red his bp is going up to 180/100 . ) 



There’s more going on otherwise that I will update on as soon as I get an okay ( for reasons that you will understand later)


 


I’m sure I’ll think of more soon to fill you in on-


 


Thank you all for being our village . And the wind beneath our wings .. 


 


Sigh .. 


 


Namaste

Journal entry by Caroline Florom

I promise I have literally wanted to post daily im one of those people who just can’t stop writing and well just know I will share as soon as I can and it is pertinent to how Tank got so ill .


Our tank did go to cardiologist this week and thankfully he didn’t fire her and again he passed an echocardiogram. And has a holter monitor on just in case so they have their own records . We are pretty happy that Dr Diamond Apple with our rock star Dr Cassio endo extraordinaire called and are actually working together . I love it !

Tank has stayed Casein free and I think he is using this as a way to go to any specialty or grocery and get goat or some sort of pricey low Casein cheese . It cracks me up - but if it’s healthier .. 

The plan is oncology this coming up week - and then further testing or as we were told a light him up test to find where this is . 


He is officially on Hospital Homebound after today’s phone call! When Isaac and Rachel did his website I didn’t realize he’s wearing a Franklin School shirt - lol he’s like the Franklin poster child ! At some point I am going to ask his teachers to have his buddies write an email or something as he has a tribe he hangs with and misses them greatly!  Talking with the Homebound peeps today I feel so blessed that they are there and hearing he will still go to 7th grade at this time ! Tank loves school and although it hasn’t been exactly the curriculum he has been finding new things to learn unsolicited and not just reading them, quoting them and when bored lol perseverating Sheldon( ish ) and seeing what my knowledge base is ( of course there’s nothing like a trivia pursuit war with a child who has memorized obscure medical knowledge to test me for fun).  At this point he can probably teach labs and probably sub for me as a Nursing clinical instructor .. and the newest is right now he is able to follow me around quoting verbatim Florida statues and laws about rights and well - we get to that another time...


Although we all know I’m pretty much an open book about most things - I promise you all a fact update and know crazy things have been happening and the kind that I keep looking around to see if there is a candid camera and someone is trying to prank me . Trust me .. when you hear this .. you will get it .. you can’t make this stuff up ...

;) I have a full story and dissertation ready for when I can just type send .. it explains so much of why he’s sick ... right now I have to go do a quick bp on him and know we so appreciate your support and sharing our Tanks Journey ...... you are our wind beneath our wings and our village ... and I can’t thank you enough ! Love you life hard but always love harder 

- Carrie ( Caroline )

#aaroneffect

Journal entry by Caroline Florom

Happy Good Friday my friends ! Happy Passover ! (I always hate saying “ Happy Good Friday - as I remember very well how the story of Christ being crucified for our sins scared the crap out of me growing up , or was it how they covered the Church’s windows on Good Friday that made it surreal and dark and dank ?) 
And again I digress .. sorry Tanks Team - update following ...

Not surprisingly we received the Ct Scan results which said the exact same thing as December’s ( except in December he also had an ileus ) Now just a big ole liver and spleen . Please note the clinical person in me is kinda asking why we didn’t do it with dye time or an MRI ? From what I’ve read these pesky things are pretty well hidden a lot of times- and well come Monday the fight for the right testing and treatment will begin again. 
 Tanks blood pressure has been up again the last few days - and we are seeing a cardiologist again next week . Not the same one as usual as our Tank really really didn’t like her ( the giant beanstalk I think is what he called her ). He remains on blood pressure medicine at Night which is not my favorite thing in the world ( because of this type of growth it will never really work 100 percent as this not a cardiac condition  - his endo and I agree on that btw ) but maybe it’s keeping his bp at bay instead of a stroke ?

And yes Mayo and Boston are still a maybe .. but we have to get these next tests done ( we want to light the child up wherever there are bad cells ) 

Hope all of you know how much I appreciate each and everyone of you ... 

You are our village and the wind beneath our wings .. 

Happy Easter ! He has Risen!

Happy Passover ! 
Pesach Sameach!
or Just good juju sent ! 

Love 

Carrie 

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Journal entry by Caroline Florom

Ever feel like a hamster in wheel going round and round and round ? (memo to self to be grateful always )

We sit here waiting for yesterday’s Ct scan of Tanks Abdomen and pelvis to be reviewed by our endocrinologist . And yes , I’m beyond blessed and grateful that she is part of our team. Yesterday’s exam was the third ct of Tanks tummy that has been done , I can’t help but wonder what the purpose is ? What has changed since December?

Again , reminding my soul and brain to feel grateful for these remarkable tests and having knowledgeable physicians.

If anything new occurs today I’ll make sure to update - but for now we are just doing some housekeeping and making appts . The hardest one being the one our endocrine said to make asap to hematology/oncology- this one makes my heart skip a beat and lose my breath . 

Namaste my friends 

MacNCheese 

Journal entry by Caroline Florom

We went to our closest ER ( west side or as I still call it “ Humana Bennett”) TBH - I was impressed . The ER Md knew his crap and said nope he’s going to a pediatric speciality ER and then admission. The Ct scan of his abdomen showed a very large spleen, a very large liver and ileus . ( an ileus is a part of your bowel that is not working af all- it’s a medical emergency to get the parastalsis of the bowel going before it becomes necrotic( dead ) ) For those of you who don’t know Tank well eating and  enjoying food have never been a problem!
. He loved Crab Cakes at 7 months old ! He has never had bowel problems in his life !( and right about here is where I got the gnawing in my tummy - Tank looked at me and said in a weird voice .. it’s my head mommy my head is just not stopping it hurts so bad .) Now as far  as headaches go , Ash and I get really bad ones .  It’s related to this weird mutant gene we have inherited called mthfr. It can cause autoimmune diseases ( I have a few I can name and Ash has my stupid migraines and psoriasis) but once you know what you are dealing with you can cope or learn to anticipate flare ups. In the scheme of life it’s not too bad - and because of growing up in Plantation it’s not as rare here as in other places in the world . ( it’s for people with Eastern European descent ). Needless to say ..  again.   Tank is not a headache guy .. my slightly strawberry freckled boy with skin so fair even his hands freckle never has had headaches . Ever. At most seasonal allergies . Tank is true mix of my Danish Viking blood and his dad 100 percent Armenian blood. 
 The Er they insisted we go to was Plantation General for admission- I won’t say much about the 4 1/2 days there except I did find one or two nurses fairly knowledgeable ( of course they were traveling nurses on contract ) and they discharged my child after 4 1/2 days with an a
ileus after two rounds of golytely, miralax, clear liquid diets and enemy’s.. ( Tank
cried pretty hard about the whole clear liquid thing .. not when they missed his veins 11 times .. he couldn’t believe they were going to “ starve “ him )
I truly still can’t believe that they tried telling me his poop ( he hadn’t pooped by that time for well over a week ) has simply miraculously vanished , liquified. I calmly ( ish ) told them that Saturday night after hearing this that I was a Nurse Educator and when speaking to the shift supervisor ,” oh my lanta honey I would love to come and do a freebie inservice on constipation, ileus and why we never allow patient with an ileus to leave especially if we are monitoring their bowel movements and there hasn’t been one . Cause ya know .. well little things like perforation are real “. 
Oh the look on her face when she said “ You never told us you were a nurse “ 

I said then what I will alway say.. this is my son .. I am
his mom that’s my real job my side gig is I’m a Nurse 

We took our boy home and went to Joe DiMaggio on Sunday where they did an X-ray and this Rounding ER Dr said well he has a lot of poop in there . And we all explained his constant headache to constipation and good old Joe DiMaggio got the boy pooping again. Looking back how silly I was to think this was just random and my gut must of been telling me otherwise because I had our pediatrician do tests to see if we have a thyroid problem or gastro and we barely got through the holidays . Another visit or two to Joe DiMaggio Er happened before the month was over one with high bp and another when I hit a speed bump driving and his seatbelt almost ruptured his spleen . 

His headache never stopped . And I noticed he started being active for shorter lengths of time .

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Journal entry by Caroline Florom

If you got bored reading my mini novel and prefer the nuts and bolts  I hope you skip ahead to here :)
so Tanks 24 urine from Joe D shows everything is elevated ( see below )
his Tsh went a little higher so we just started synthroid
His Bp and redness is still crap 
Hes pretty lethargic and somehow gaining weight 
His darn spleen and liver are still Enlarged
and he has now had a headache that hasn’t stopes a high bp and a tummyache ( spleen/liver esophagitis,gastritis, duodenitis) and we are still waiting on auth for another abdominal ct , radioactive test to see where and what kind of darn growths these are and some specialty auths. 

As a working educated adult that is usually on the other side of medicine having a chronically and horrifically sick kid has opened my eyes in so many ways. Thank you all for walking the journey with us I covet all your prayers and thoughts ... 

know that each and everyone of you reading this are an important person to us so please live your life’s hard but love even harder ❤️❤️❤️

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Journal entry by Caroline Florom

March has come in fast and hard. We have already done two er and one five day admission. One Er at Coral Springs after seeing pediatrician that Saturday Tanks was almost swollen completely shut when I got home from work - we bendryled ran to oncall pediatrician and by the time we got seen the boy was sleepy and I was bathing in Purell to avoid us catching whatever nasty bug all those sneezing kids had in the waiting room . Pediatrician said usual which was she couldn’t do much it’s an ER visit . So come around 930-10 at night his bp started to fly up .. chest pain yada yada and Ash who knows the drill says” We better go take him in” This was a big mommy blunder . I love this endocrine enough I thought Coral Springs er Joe DiMaggio- it’s still medicine - potato potatoe right ? Um im here to tell you there is a difference . If your child has a rare( ish ) disease and you find the one night you can’t get your endocrine on her bat phone - you will be in a form of purgatory. And after 5.2 hours gladly say of course you will keep an eye on him
and yes you are a nurse .. and why thank you Dr in charge you are sooooo smart . And run fast . They are afraid of your rare disease kiddo . Let . Them. Off . The . Hook 

The Sunday after I watched the boy start turning bright pink and had his and my bags packed and grabbed some snacks for little man Tate ( Ashton ) and headed to Joe DiMaggio. The boys bp wasn’t crazy high but it had literally been an entire week without sleep for him . The headache gnaws when he jostles his head and his chest hurts . And darn it - I was exasperated as was he . We got there . Now they do like us there we are almost a comic relief , I’m not big believer in bullying the Er staff - they are like the gatekeepers to emergent health I am totally on their team - we go in and super cool emt was intrigued . ( btw no I am not into people who use the ER as a dr office this was the gateway with our endocrine waiting for direct admit without her having privileges). 
So the admitting EMT was all sorts of into Tanks case , the ER nurse got the full Tank story of how he was stuck 11 times and don’t worry he will guide her through it and a younger ( ish ) attending  comes in and looks startled almost scolding us saying “ Now parents , his Bp is a little high but he looks ok”
i swear a pin could drop / and as southerners who are controlling their words know .. we talk slower and lower to get our point FIRMLY across as I gave him our Dr Cell. Lawd have mercy I have never seen an admission so fast to a floor from the Er . And wow the floor has the nicest biggest rooms ever ! And Ashtonlee kept saying it had an amazing view . And our Tank was in heaven with 24/7 as much as you want whenever you want room service . It all would of been great but Tank still has weird bp and all the labs except a few were ok. And as we got ready to leave one of those omg moments were when the nurse and Rounding Dr came in and said “ We have no problem
with him staying for five or so more days because you are a nurse but it will be at least five more days until we get the labs back ”
I was like what ? They said yes of course because my child still isn’t 100 percent stable he could stay on this the oncology floor . 
No it’s not the end of the world but this is where a little knowledge sucks . I’ve never seen insurance let you stay just to stay in patient . And my gut still was saying wow he is really sick

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Journal entry by Caroline Florom

This started in December on the way home from Sea World and a boy saying “ mommy my tummy hurts “ the boy who hadn’t called me mommy since he was 6. The one who doesn’t get headaches who has only been on an antibiotic once in 12 years. The one who I laughingly say I made a giant and who I once jokingly said “ I miss you when you are at school to but the next time you make that poor school nurse wheel you out in a wheelchair because you tripped in gym class you better have a limb sticking out “ ( we both still laugh at that but he does more than me because part of me wants to cry thinking for simpler times )
I think now we both knew he was really sick even though we blamed it on all you can eat Sea World food .

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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

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