We have heard from one of Casey's doctors-
Her iron level is not where it should be after her 6 infusions, (although it is a decimal point, or two, above what it was in May before she'd begun those infusions). At that point, her iron was less than 4% of what is normal.
Those infusions alone damn near killed her.
The headaches she has experienced afterward- and the pain along her mid~right side is ever increasing too. Grrrrr....
Her GP, (general practitioner) will be contacting the hematologist/oncologist, and I hope Dr. Sutherland as well. (She would much rather be in Minnesota. I know how much she trusts Dr. Sutherland). But those 3, talking to each other, are a good team.
They expect to know more by tonight or tomorrow.
Offered as one possibility is that she might have an intestinal bleed somewhere along the line. Which of course means more surgery-
I hope Dr. Sutherland might be able to do this also, (if it comes down to it).
The rest of her tests are not back yet.
She is still very much looking forward to starting school once more- her vet tech courses, this Fall. Time will tell.
As always, her health is vastly more important than either the sciences, or the mathematics, which she loves so much-
There are times I think this is just as hard on me, mentally- than on her, physically. How selfish of me to feel that way! My apologies.
Does that somehow make sense to you?
Casey has more resolute Faith, and class, in her little finger than most of us have in our entire lives! She is honorable; accepting and always strong, taking most everything in stride- (Even/especially when she can barely stand or walk herself). While I know that is exactly what his best for her psyche, there are times that I don't muster "the right stuff" to be so damned brave. (Yes. I always find it; especially as I reach for it).
I know at times I lack much- God only knows that I don't measure up to her own level of courage.
Yet, from the sidelines, (even as her mother), I can only imagine how she feels- and what she is going through.
I am there, HERE, anywhere, for her -always.
Sue and Glenn came for the fruits and veggies for their deer yesterday- I swear they were angels- their timing was so perfect. I was just hanging up from speaking to Casey when they had arrived.
I will post numbers etc as those results become available to us.
I will also update here what the doctors say.
Love to all.
XOXO
Casey's Mom
photo from scientificamerican.com
hugs :)
ReplyDeleteI will surely keep Casey in my prayers as well as her mother...God can do anything, we have to carry that faith in our hearts and that belief to remember that very thing!
ReplyDeleteActually Anna -
ReplyDelete"There are times I think this is just as hard on me, mentally- than on her, physically. How selfish of me to feel that way!"
Makes perfect sense... you're her Mom ;)
Best wishes to Casey
ReplyDeleteI know exactly what you mean, without going too deep, Ive been through something with my son, where he's now happy go lucky and moved on with his life, I'm still mentally suffering from the whole experience, Oh I hope ,hope , hope , wish wish, pray pray that those Drs. figure out how to cure Casey. xoxoxoxoxoxoxox
ReplyDeletehoping for the best
ReplyDeleteI just hope she feels better real soon...hugs :)
ReplyDeleteYou know it is easy to be strong when it is YOU who has whatever going on and therefore has no "choice"... When it is someone on the outside of your skin who is looking on, it is more difficult.
ReplyDeleteBeing the caretaker is always harder than being the patient.
Trust me on this, I know first hand from both sides of the coin. It was much much much more difficult to be calm, objective, and rational when it was The Man's life at risk than when it is my own.
*hugs* to you both.....
XOXOXOOXOX
Casey's Mom's other kid.....
Knowing where you are coming from ..no its not selfish.
ReplyDeleteCaretakers/givers whatever it is people want to call us have a job that most people wouldn't take on in a million years for anyone..we are a special breed of folks! I know people who would walk away from these types of situations(walk...hell they'd run). It one of those things...you have the "gene" or you don't.
I hope Casey doesn't require any more surgeries. I'm sure Dr Sutherland will be right there for her if she does.
Keep us informed as you can...our prayers are with all of you..
Hugs ..me
Prayers for you and for Caseyface. It IS curious that her iron stays so low after all the infusions. I pray they find a reason without more surgery.
ReplyDeleteoxox,
snotball
Hello Casey's Mom...just wanted to tell you that i have you guys in my prayers and i do
ReplyDeleterealize how hard it is, especially when it's your own child. No you are not selfish, none of those
bones in your body!! :)
I sincerely hope and pray there won't be anymore surgeries.
Falling OUT of the bath tub was very easy!!! lol I got one foot out and i started to slip and slide
with the leg that was in the tub. Being very wet and the tub was wet too, so every time i tried
to catch myself i would slip more until i finally ended up with one leg caught between the tub
and the vanity and my arm, shoulder and head between the tub and the toilet!!!! What a scene
Dave had to see when he came in. lol Thanks to all the physio I had taken, and the prayers
that instantly came to mind, i was able to get my head out and while holding on the the toilet,
my new found strength got my legs up and i stood by myself!!!! Praise God.
Hugs & blessings,
Bev xo
Has anyone explained why she has pain along her mid~right side?
ReplyDelete"...she might have an intestinal bleed somewhere along the line. Which of course means more surgery-" I hope she won't need surgery, but the most important thing is to find the cause.
You said: "There are times I think this is just as hard on me, mentally- than on her, physically... .
Does that somehow make sense to you?"
It does. "Just" is the operative word. I don't feel it's any harder on caretaker or patient, it's 'just' different.
I was the only caretaker for my husband when he was diagnosed with mycosis fungoides modular lymphoma, (yes, a very rare disease), & was on call 24/7. The diagnoses was too late to save him; he died within three & a half months. I've never been so calm or competent, but in addition to my emotions that I kept inside...for his sake...I lost fifteen pounds & got walking pneumonia yet continued on. He didn't have 'courage' because he didn't realize he was dying until near the end when he was hospitalized for the last (of many) times, & his humane oncologist ordered additional morphine at my urging, to stop his pain. This was illegal, but she did it.
I've been close to death five times & was very stoic about it. BUT. Casey is so young, & this whole thing about breaks my heart. I'll be thinking about her with all the good energy I've got, & YOU, too.
Great big HUGS!
Her health is vastly more important,
ReplyDeleteThere are times I think this is just as hard on me, How selfish of me to feel that way!
Yes it does make sense to me and No Anna you are not selfish my friend because it is very hard and wearing for a mother like you to see someone you love so unwell, so basically you are expected to be exhausted. We all care very much for Casey and our thoughts are with her and you both. Hang in there girls you're both a team remember that ;-) Get well Casey mate
A little advice from an old one.
ReplyDeleteThink about the problem at hand and deal with the rest as they arrive.
This will give you more strength and staying power for the future.
Note:
ReplyDeleteI was misinformed when I wrote the 2 sentences above.
Her iron count is just over HALF of what it was when she began her infusions.
2.0 now, vs 3.8 then
'Normal' being 105.
Her ferritin levels are still within 'normal'
although marked at the very bottom of that allowance too.
Her thyroid count was also very low,
creating a questionable borderline hyperthyroid state.
I have a sandwich bag, full of her hair, from one single brushing.
~No damn wonder the girl has all of her energy within her spirit.
(And yes, she is spunky as ever)!
ReplyDeletethank you
ReplyDeleteThank you for your own Faith Lori.
ReplyDeleteCab- I am still not readily accepting of the selfish aspect, sense or not.
Yet at the same time your words mean so very much to me.
ReplyDeleteThank you
I am sorry that you know how I feel. Truly am. And yes, I am a changed person because of what she has lived through. I can't honestly say better or worse; but I do know I am changed.
ReplyDeleteCasey does have that healthy attitude- And it's a damn shame that her body refuses to cooperate.
Oh what I would give for a 'cure'.
That word is somehow magical to me.
ReplyDeleteI thank you also.
ReplyDeleteMe too!
;-)
Backatcha Pea.
ReplyDeleteI know too that you have worn both of these damned shoes. -And they suck.
You are correct Pea. What I wouldn't give for this all to be happening to me! But it isn't.
Caretaker/patient. What a freakin' crapshoot!
(But I would be willing to bet she would much rather be back by you again, than where she is right now).
XOXO
Mama D.
You know also- And I know you know. And it's an awful club to be in.
ReplyDeleteThe selfish aspect reverberates negative with me. Maybe there is a better word?
And maybe it goes all the way back to the fact that I 'am' her mother.
(As such, she got 1/2 of her defective genes from me).
Maybe I should just tell her that she is adopted?! hehehe
Her father 'ran' years ago- At times like these I truly hate him for that.
As did her eldest sister Zoe.
But that is all just more soap opera fodder. Not applicable by any other translation than this is Casey's family.
Now go get yourself better- I hope the chicken soup worked it's magic for you and Drew.
(Would that it could be that easy)!
XOXO
Me
ReplyDeleteI think their next move might be a colonoscopy- to determine where this bleed might be, if there is one.
And when I think back to the heaviness and rich coloring of the IV bags of those infusions I wonder where it all has gone to also?
Of course if I knew, there would be no need to be wondering which doctor gets her next either.
XOXO
Me
There's the story! (Finally too, I might add)!
ReplyDeleteHow awful. Like me, gravity is not your friend either.
I am sorry you had that terrible experience. How frightening for you and for David too.
As far as Casey goes, I cannot begin to tell you how frustrating and overwhelming it all is.
Seems as though she gets around one corner, and another curve comes up...
XOXO
me
To answer your first question. No.
ReplyDeleteYou will need to click on "Caseysick', or 'surgery' tags on my top page to put it all together.
I am also thinking that some of her pain may be coming from post op adhesions within.
Any of these procedures are capable of forming adhesions...
Casey's own words follow- (Surgeries only).
1998 – Tonsillectomy
Dec 2000 – Appendectomy due to chronic appendicitis
Oct 2005 – Pleurodesis with talc powder.
Spontaneous pneumothorax on the right side, 20% collapsed.
Did have one years earlier, but it was only 5% collapsed and it healed by itself.
April 2006 to Dec 2008 – DX'ed Chronic Pancreatitis.
Although Dr. Sutherland, who performed my Total Pancreatectomy with Auto-Islet Transplant (Dec 2008), believes that I’ve had it ever since I was young and having bouts of severe stomach problems.
We were always told it was 'just' the flu -or food poisoning-
no blood tests were ever done at that age.
May 2006 – ERCP
ReplyDeleteHow lucky for you to have found someone not only humane, but intelligent, compassionate- and capable- all rolled into one.
I can only hope when I get to that point in my own life that I am also able to find such a person for me.
Myself, only once or twice- (And yes, I maintained even my sense of humor)! hehehe
ReplyDeleteThere truly ARE chosen 'exit points'.
And it is within our power to accept or deny these as we go along.
What's a better word than selfish?
ReplyDeleteEspecially when it is happening to her and not to me?
I can't find the right words then. (Rare, I know).
We ARE a team-
Formidable at times too- Ask any nurse or doctor that thought their textbooks applied to Casey! Ha! (See tag 'medical rag' within my top page).
I have learned that knowledge is extremely valuable, and not so easily removed as textbook stuff can be- or whatever it is that appeared on their final medical exams...
I have also learned that some doctors are completely capable of repsect for an intelligent and informed patient.
It is these doctors that we have returned to time and time again.
Case in point- her doctor here was very ignorant of her case (of course) when she had first visited with him. They had exchanged questions and answers for over an hour that first visit alone.
Then he asked to have us come back, after the weekend. The difference in his own capabilities in a few days was amazing to say the least-
That man must have researched EVERY POSSIBLE THING and spoken to many other doctors over that weekend...
Both he and Casey can exchange these highly medical conversations now. (Proud I am of her- and of him). hehehe
He was never afraid to admit that he didn't know everything. But he made up for that in record time.
They respect each other. And that means so very much.
Herself and Dr. Sutherland also have that highly respectful relationship.
When I think of how many doctors tried to tell her she was drug seeking, or an alcoholic, and would just dismiss her with their noses in the air!
How dare they?!? (And yes, those bastards DID hear from me afterward).
My apologies to have blogged and ranted here within your comment.
XOXO
Me
ReplyDeleteThank you Bill!
Your advice is completely practical, and necessary as well.
That she has a future is what we have to be thankful for! She would not have even had these past few months/years had she not had her TP/AIT (transplant). Her Chronic pancreatitis was already wasting away at her organs and her muscles---
XOXO
Me
Special thanks to you ALL- For offering your own thoughts, prayers, and hopes, for my littlest baby girl.For just being there, for us both.I thank you again.XOXOAnne
ReplyDeletein the time that I have known you I just cannot believe how much your little girl (woman) has gone through, it's awful! :( it seems one step forward and two or three steps backwards.... I do hope that they can fix this for her and for once she will be done with all of this and 100% healthy! {{hugs}}
ReplyDelete
ReplyDeleteFrom your keyboard and heart to Gods ears Sweet Suzy!
And in the time that I have known you, you have been SO much there for us both.
I thank you so much for all of it!
XOXO
Me
As would I....
ReplyDeleteOr Even to change places with her.
XOXOOXOX
Wouldn't we all?!
ReplyDeleteThank you. I love you ya know.
*hugs*
ReplyDeleteI as well would rather it be ME going thru what Drew has...it's just not fair that the "whole" famlies herediatary genes gang up on my youngin'. Of course I wouldn't..and neither would Drew ...wish what he goes thorough onto any of the others in our family. We just try and give them information that may help them down the road ...should this also affect them. (Note to those that do not know..our oldest son and daughter both have the Protein S deficiency as well...althought neither have the Diabetes at this point....so far only 1 grandson has been tested and shown to have these same "genes".)
ReplyDeleteHope that all is well today..I'm now fighting a chest cold..its moved...and I will now attack with Mucinex..lol
Please please please spend that $500.00 Sweet Denise.
ReplyDeleteYour family's genetic makeup is definitely something to be concerned about. As is my own.
Drew IS relatively 'lucky' to not have to deal with the diabetes on top of everything else.
You? Not so lucky with that chest cold. Smart to get on the guaifenisin though! (I hate taking that, it drys out my throat something fierce in the middle of the night, and I wake up with my throat just hurting so bad- May I suggest keeping a glass of water at your bedside)?
XOXO
Me
"A bodily disease, which we look upon as whole and entire within itself, may, after all, be but a symptom of some ailment in the spiritual part."
ReplyDeleteWhile I will admit that spirit plays a highly important role in healing, Nathaniel Hawthorne was WAY WRONG about this!
Most especially where his theory might apply to children...
XOXO
Me
"Drew IS relatively 'lucky' to not have to deal with the diabetes on top of everything else."
ReplyDeleteAHHH...If he could only be so lucky...his Diabetes is right in there causing its own mischief. It sometimes just takes a back seat due to the clotting issue usually being more painful...there by being the "squeaky wheel".
They have classified him as a "brittle" diabetic..due to the fact he can't keep his blood sugar in control.
The Hemotologist,Dr. Nanfro agrees with me that his 2 conditions are "fighting" one another..one of the other reasons Dr Nanfro took Drew off the Coumadin and put him strictly on Lovenox injections twice daily. The main reason was that after being on Coumadin since he was 14yrs old...and never being therapuetic..it wasn't working for Drew.
Drew can have great blood sugar numbers and within hours sometimes he can be in DKA. Dr's immediately
unless he's throwing up because of some type virus...want to accuse Drew of not using his insulin before he eats
or not using it at all. I have to get ugly and point out that more than likely he has some underlying condition that
hasn't shown it's colors as of yet. Like a virus, kidney stone, infection of some sort, migraine and the accompanying pain, clot(s) somewhere in the body...or a multitude of possiblities. Not just the "pat" answer when they see a young person and jump to conclusions.
Hope all is well up that way. My cold seems to be some better. Still a slight cough but I can bend over without thinking my heads gonna explode..or having to tote a Kleenex box with me everywhere..lol
I do keep water beside the bed...I am notorious for sleeping with my mouth open unfortunately..lol
Ok..have a good day..I've hijack the blog long enough(but multiply lost my personal message I sent you..lol).
xo