Sunday, May 27, 2012

PET scan

I got this off of Wikipedia - just cut and paste.  The link is http://en.wikipedia.org/wiki/Positron_emission_tomography

Positron emission tomography (PET) [1] is a nuclear medicine imaging technique that produces a three-dimensional image or picture of functional processes in the body. The system detects pairs of gamma rays emitted indirectly by a positron-emitting radionuclide (tracer), which is introduced into the body on a biologically active molecule. Three-dimensional images of tracer concentration within the body are then constructed by computer analysis. In modern scanners, three dimensional imaging is often accomplished with the aid of a CT X-ray scan performed on the patient during the same session, in the same machine.
If the biologically active molecule chosen for PET is FDG, an analogue of glucose, the concentrations of tracer imaged then give tissue metabolic activity, in terms of regional glucose uptake. Use of this tracer to explore the possibility of cancer metastasis (i.e., spreading to other sites) results in the most common type of PET scan in standard medical care (90% of current scans). However, on a minority basis, many other radiotracers are used in PET to image the tissue concentration of many other types of molecules of interest.

To conduct the scan, a short-lived radioactive tracer isotope is injected into the living subject (usually into blood circulation). The tracer is chemically incorporated into a biologically active molecule. There is a waiting period while the active molecule becomes concentrated in tissues of interest; then the subject is placed in the imaging scanner. The molecule most commonly used for this purpose is fluorodeoxyglucose (FDG), a sugar, for which the waiting period is typically an hour. During the scan a record of tissue concentration is made as the tracer decays.
Schema of a PET acquisition process
As the radioisotope undergoes positron emission decay (also known as positive beta decay), it emits a positron, an antiparticle of the electron with opposite charge. The emitted positron travels in tissue for a short distance (typically less than 1 mm, but dependent on the isotope[11]), during which time it loses kinetic energy, until it decelerates to a point where it can interact with an electron.[12] The encounter annihilates both electron and positron, producing a pair of annihilation (gamma) photons moving in approximately opposite directions. These are detected when they reach a scintillator in the scanning device, creating a burst of light which is detected by photomultiplier tubes or silicon avalanche photodiodes (Si APD). The technique depends on simultaneous or coincident detection of the pair of photons moving in approximately opposite direction (it would be exactly opposite in their center of mass frame, but the scanner has no way to know this, and so has a built-in slight direction-error tolerance). Photons that do not arrive in temporal "pairs" (i.e. within a timing-window of a few nanoseconds) are ignored.

PET scan youtube video

http://www.youtube.com/watch?v=QYYWs58IvE8

This gives easier explanation of PET scan.

Saturday, May 26, 2012

And the pathologist says...

It is Histiocytosis or more correctly Langerhans cell Histiocytosis (LCH).  There are actually many varieties of Histiocytosis, this is just one that appears in childhood, usually before age 10.  There are many different ways to treat this, it just depends on if he has more lesions (tumors) and where they are located.  Andrew should be getting a PET scan next week with follow up with a histiocytosis specialist.  I am not sure if we will be meeting with THE specialist, or one of the other specialists that work with him.  Evidentially he is world renowned doctor for Histiocytosis.   (Arizona scores again for being the perfect, although hotter than normal, state to raise my family in).  If my research is on target, Dr Michael Henry will be our doctor (ok, I googled Phoenix Children's Hospital and Histiocytosis and his was the name to pop up), then our pediatrician has already noted his credentials to us, although at the time she could not recall his name.

Anyway, I think we are categorized as cancer and blood disorders, falling into the latter category.  They put these together because they use the same types of treatments.  Hopefully in two weeks we will understand not only if and how pervasive this is, but also possible treatments.

So just as a recap, the tumor was removed, has been biopsied, identified, and now we are seeing if there is any more. 

I don't know what treatment will be if he has more tumors, but I did find out that if the does not have any more tumors at this time, he will have PET scans every three months for the next year, and then every six months after that (for at least 5 years). 

I did not know what a PET scan was, so I had to check that out (Wikipedia definition to follow on next entry).

OK, maybe my research methods are not the most detailed right now, but I seriously don't have time (or emotional strength) to research things unless they are certain.  This is why I am taking this a lot slower than some of you might.  We are trying hard to keep the kids schedules as normal as always, so that takes an immense amount of time.  Things are going well over all.

Tuesday, May 22, 2012

Mid-life crisis or teaching an *gasp* old dog new tricks

Well, today was my first piano lesson.  My children take piano lessons and one of their teachers agreed to teach me lessons.  I take them right after JJ is done his lessons.

I have taught myself quite a bit over the years.  As a child I had a couple of piano lessons, but my strength in music was the clarinet.  I started taking lessons after 3rd grade and did lessons for 9 years.  I don't think I was ever better than mediocre, although I learned the notes real well.

As I started playing notes my teacher told me that I had a natural knack for organ style playing because of the way I glide one note into the next.  (Boy this guy has my number, tell me I am good and I 'll pay attention).  He also asked me how I was counting my timing.  I told him honestly I was not counting because I had heard my children play these songs so much, I can just hear it correctly in my head.

So last week he assigns me 12 pages (about 1/4 the book) and I "mastered them all".  Today I got about 15 more pages, so I will be finishing the book next week.  Yes, that is 1/4 + 1/4 = 1 whole, but that is because I skipped the first half of the book.  So next week I start on book two...so maybe I can handle it.

For those who are finding the timing odd, this was something I set up a couple weeks back, but had to cancel last week because of doctor's appointments for Andrew.  I am excited to be starting today.  Playing the piano for me calms me down, now if I had to play for others that may very well change.

Oh, my goal for piano?  I explained to my teacher - want to be good enough to play in my house, but not so good they would ask me to play for church. :)

Friday, May 18, 2012

We are home from the hospital.  Andrew had surgery and the surgeon said it could not have been any better of a surgery.  He got everything, he is fairly sure it is Histiocytosis, but told us to wait for the official pathology report (probably Wed/Thurs).

Andrew is doing well.  His body does not like Demoral, but it did a good job taking the pain away.  Hard for a momma to see him point to the sad face crying picture on the 1-10 pain scale.  He is up in bed and I am hoping he will sleep well through the night.

We told him on the way home about how dangerous the tumor was and that he could have possibly died from it if we had not had it removed.  Not much of a consolation for missing swim lessons this summer, but he seemed to understand.  He is not allowed to do much exercise for 6 weeks.  Sounds like he might get a lot of video game playing this summer.

A huge weight is off of our shoulders, but there is still an unknown path ahead of us.

We will be getting the pathology report next week (probably from the Oncology doctor).  If the pathology report confirms the diagnosis of Histiocytosis, than he will probably have to do a full body bone scan and an organ scan to check for other tumors.  This would be a disease that he could have to watch for the rest of his life.

We check back with the surgeon the week after that.  The surgeon said that it looked like Histiocytosis to him.  He said that a lot of these kids get one tumor removed and he never sees them again.  Other kids have to come back multiple times.

Thursday, May 17, 2012

not brain surgery

Usually I start a post with a picture, but lately the pictures I have found to go with my blog, well...they turn my stomach, so hopefully in a few more posts I can get back to pictures.

Today we met with the Neuro-surgeon.  We looked at pictures of Andrew's brain, skull, eyes, everything above his neck...well we actually saw parts of his neck too!  Anyway Dr. Shafron is chatting with us and explaining how simple this procedure is, it's not too close to any blood vessels, etc and he turns to us and says, "You know, it's not brain surgery...it is skull and scalp surgery.  I do brain surgery (usually) and this is not it".  I just busted out laughing in my...brain.  It is so funny to me to hear that quote actually used correctly.

Andrew has skull and scalp surgery tomorrow.  It will start around 2 and hopefully end around 3:00.  They could use a "paste" to fill in the whole (which is 18.7 mm) which would help the bone to grow back.  So Andrew will not have a metal plate in his head.  They might forgo the paste if the hole is small enough (like the size of a dime) because he feels it would grow back on it's own.  It will probably be out-patient.

So wish us luck and keep us in your prayers.

Hystiocytosis


I've done a little bit of research, thankfully our pediatrician printed off some information from the internet so we did not have to try and find it ourselves.  My sister-in-law looked it up on her own and did not have a positive experience.  When she told me of her experience, it reminded me of looking up Autism on the internet 7 years ago.  Since I think people should be saved from experiencing too much bad internet information, I will give a short synopsis of what I have gathered at this point.

Histiocytosis - is a disease that results from the over production of white blood cells which damage organs and cause tumors (they are called lesions).  It is a "spectrum disorder" so it could be anywhere from one tumor your whole life, or it could be many through out your body, through out your life.  It is considered an auto-immune disease and while not cancer is similar enough that it presents and receives diagnostic treatments like cancer.  You are never "cured" of this disease but it is considered "probably beaten if you go for 5 years with it in 'remission' ".

When we met with our Pediatrician she called this a very rare disease, something you read about in a text book.  Somehow we did not feel very "special" by this.  She explained that it was a 'black box' disease ( a quick way to explain they don't know a lot about it).  It is a spectrum disease, and that there fortunately was a Histiocytosis center at Phoenix Children's hospital with a world renowned physician.  She already set up an appointment for us the next day at 8:00 in the morning with one of the doctors that worked in fellowship with the really famous one.

As far as the disease goes, it can cause rashes as well as tumors.  It looks like at times these tumors can be open sores as well.  This does look like it can get really nasty if the case is a severe one.  It is considered an "Orphan disease" which is measured by it's occurrence rate.  For Histiocytosis it occurs 1 in 1500 people.  I believe the reason it is called an Orphan disease is because it is not common enough to have a lot of common knowledge (I have yet to meet anyone who knows what it is, other that a few of the doctors) also it receives no major funding, probably because of it's obscurity.

We asked if our other children were at risk for it.  She said that truthfully she did not know because they really don't know what causes it, but that she understood that they do not think it has a genetic link and that our other children were probably not at risk at all for it.


Blood work

On Tuesday they took some blood and a urine sample from Andrew.  It was not a pleasant experience, even weighing in that in general giving a blood sample is not a pleasant experience.  Andrew hid himself behind me, dodged, etc to get away from the needle.  We explained it very calmly and rationally, but that did not help much.  Unfortunately because of the stressful situation, the nurse missed the vein and had to "fish for it".  So that made Andrew stress and hurt more.  Today we are doing the surgery blood work.  Great - it gives me so much to look forward to.  We are trying some strategies, mostly distraction to help with the situation.  If Andrew has Histiocytosis, it will more than likely involve a lot of blood work through out his life.


Tuesday, May 15, 2012

Our current state of mind...



In a perfect world I could call all of you and have this conversation, but this is not that perfect world.  Our son Andrew has had a lump on his head for a few weeks.  We have had an ultrasound and MRIs that show that this is not your average bump on the head.  We had an appointment with an Oncologist this morning and are scheduled Friday for surgery at Phoenix Children's Hospital.  The doctor's suspect it is a disease called Histiocytosis.  It is an auto immune disease that functions a lot like cancer and is treated like cancer.  It is a life long disease that hopefully would go into remission.

It is possible that it is "only" a tumor.

We do know that he currently has a 1.7 cm hole in his skull and that this lesion is sitting on top of his brain.  We believe that it is not in his brain or the protective covering his brain has.  He will eventually need to have a metal plate put in his head.

We would appreciate all prayers.  It has been amazing this last week with just the few friends and family that have been praying, we have really felt it.  In general we feel calm and peaceful, but also feel like this is an issue that is going to be something big.

We would appreciate you all joining us in praying for peace, blessings on the nurses/doctors to be guided well and for our family in general.

Our family has been blessed in so many ways.  We suspect that when we are through this we will be able to see that this too has been one of the many blessings  we have received.