Scans, tests and more scans

Gracie's scans were not clean, so to say, but it was not all bad, her lymph nodes keep lighting up on the PET scan, which can be quite concerning, but she has been not feeling well at the time of both of her PET scans, being this latest one and the one prior (when we are sick even with a cold our lymph nodes will enlarge).  So we don't really know what to do with these results.  The consciences has been that we will do nothing, we will not biopsy in other words.  We also believe that maybe the PET scans are not working for us anymore and we will have to rely on another diagnostic tool.  That being said we are waiting to see when we will schedule a CT Scan or ultrasound or both. 

In the meantime, Gracie really hasn't been feeling well so after a long political battle with ACH (Some of the Dr.'s up there feel that we should be transferred out to short term and back to the care of our family Doctor as Gracie is a year post transplant, however her Oncologist does not want to do this yet as we have not had clean scans, so we are often met with a "what are you doing here" attitude from the rest of the Oncology team - it is  frustrating and confusing for us as well as a little humiliating, but we are getting used to navigating the political mine field of our health care system), so finally, thanks to one of our favourite Doc's up there she was seen last Monday only to be diagnosed yet again with pneumonia.  It is crazy whet you get grateful for and I was grateful that I was able to get her seen by someone who cared and that the pneumonia had not advanced as much as it did this time last year so it was only high doses of antibiotics and not another five days on the ICU ward.

She is coming around, but has gone back to taking a nap and the dreaded su-su (soother) is back, much to our chagrin as we had worked so hard to get her to give it up finally.  Probably not a big deal to alot of people reading this, but it is a good feeling when you have something that can be in your control.

It is also with such sadness that we had to say yet another round of good-byes to two amazing kids from our journey, they have definitely earned their wings and I hope they soar high, free from pain and suffering and endless hospital stays.  Ty Sparks and Jacey Uphill you will forever be etched in our hearts and in our minds. 

Its disconcerting that a place I found so comforting and safe has now become so depressing and sad.  ACH represents to me, now, a place of loss and sadness, there is no longer anyone there that I know, staff has changed and most of the children we were close to have passed on, it leaves me with such a heavy heavy heart.

I am sorry for not being more prompt in my posts, I will try to be better.

Take care...

Scans

Tailspin it was.  I was asked once if a brand new diagnosis was more devastating than a relapse and having been through both, I can say they are equal in so many ways but different in the way your heart wrenches.  Maybe if it is a new diagnosis there is so much hope or despair, or fear of the unknown.  But with a relapse I can honestly say, it rips your heart out because you know what lies ahead.  You don't know that with the beginning.

So once you get to the "remission" stage, which I will say with clarity every cancer patient young or old, hates this term, so much so they have phased it out of all medical lingo, you live in limbo.  If I had 5$ for every time some said to me "arent you glad its over?"  I would be a rich woman, what these people don"t undestand, which was stated in my blog of _______________ it is never over, it will never be over.   The only time it is over is when it is truly over and they have gone to Gramma in Heaven.  She wants to visit her Gramma in Heaven she says it repeatedly, maybe she is trying to say something to sus.

Signs of lymphma:

Restlesness;
undecidenness
weakness
nught sweats
high lhl levls

 and  I really dont blame her, so would I, but I am not r
ady yet.  I need to see her first, it is the way it is supposed to be, and in some way I will make sure that is the way.  It is my job to