Fall break or fall fun?

This is one of the many pictures that I could have taken over fall break.  My kids had so much fun playing together.  I think this vacation is the one that bridged the gap for me.  It was lovely to see my kids play independent of me and my negotiating, refereeing, and judging.  It was so great to see the creative juices flow.  I think this one they were writing a play of sorts and JJ was using our backgammon game as a briefcase and Anna looks like she, MaggieMae, and RosiLee are all dressed up to do some serious shopping.  William I think was trying to hide behind his hands, but missed his face as he ran off right after I clicked this and never came back.  Andrew is diving into the picture although I am not sure he was actually directly playing with his siblings at that time.

The Bubble Master

My kids love both of their parents, however, there is one place that dad by far outshines mom - the bathtub. Rosi and William love when daddy washes them up because they get bubbles.  Well, they actually get bubbles with Momma too because I rub bubbles all over their bodies to get them clean.  Daddy makes bubbles - just for popping, watching, but mostly for giggling.  The kids just get such a delight out of these huge bubbles.  This bubble is about 15 inches long.  It starts at his right hand and goes all the way down to the edge of the upper bath tub rim.  The twins just love these huge bubbles and beg, plead, and giggle for more.  Jeff always willing to put on a good show, willingly agrees to making more.  Unfortunately it is often let to mom to be the clock-cop and tell them they need to hurry up and get out and dressed as we are late for church.

Even MaggieMae's need piano lessons too...and recitals!

MaggieMae has wanted to take piano lesson's for about a year now.  I have relented and taught her a few lesson's myself.  When she realized that we were having a recital, she wanted her own as well.  So she got one on her own.  I am happy to report that unlike her mother, she played her pieces perfectly.  She knows two or three songs and enjoys playing them.

Piano recital Oct 2012

Andrew playing Mr Brahms famous lullaby and Green Frog Hop. 

Anna playing Away in a Manger and Elves Silver Hammer.

Kristina playing Ooga Booga Boogie and Be Thou Humble.

What or who is a princess anyway?

This is RosiLee's favorite costume to wear.  She calls it a princess costume.  Obviously it is Minnie Mouse, who while she may be as rich as a princess, to my knowledge has no royal blood.  It got me thinking after hearing Rosi call this her princess costume about how she really doesn't know what a princess is.  So much of what our kids learn is not based in fact or reality but rather on trust and love for parents.  It could be very overwhelming if you let it be.  I guess I realized that we as parents are responsible to teach our children so much, it made me wonder if we really stop to think about how we evaluate what we see in the world around us and how we share it with our kids.

William's surgery

This is William after he recovered from the anesthesia of his surgery.  He has a sippy cup full of ice water, an apple juice box, a hamburger, and a chicken wrap.  He just alternates between these four and falling asleep.  As I drove home I would check up on him every 30 seconds or so (probably should have found someone to drive for me) but the poor guy was just all over the place.  He would literally go from drinking his water, to his juice and then back again without stopping for more than a breath.  Then a bit of the hamburger and more drinking.  I had grabbed a chicken wrap to help with my hunger.  I did not get more than a bite before he sequestered that from me and added it to his feast.  What causes a guy to be so hungry?  Well, this was about 2:30 in the afternoon.  He was not able to eat before surgery so he had not eaten since the night before.  It took him almost 2 hours to come out of the anesthesia and even then he kept falling asleep all afternoon.

About two weeks ago he had a surgery was for a hydroseal.  It is basically a pocket of water that is formed in his scrotum when  it leaks out from his abdominal cavity.  It is along the same lines as a hernia.  He has had it for a year or so and we have watched it to see if it would go away, get worse, etc.  We decided we have not paid enough our our deductible yet this year, so we decided he needed it.

Church party - trunk-r-treat 2012

Andrew - Soviet Army guy - famous quote for this Halloween,

 "The problem with all this chili is that they put beans in them."

Anna dressed up as a gypsy girl.

William's "costume" - he was a three year old boy who loves candy.

JJ is in the background wearing his Lego "Max" (the mascot for Lego).

RosiLee and MaggieMae decided to both dress up as ballerinas.

In monsoon rains you don't try to stay dry

I love standing in the rain during a monsoon rain.  It is like someone is taking a bathtub of water and dumping it on your head...continuously.  I don't try to stay dry during these storms, usually the child within me escapes and I enjoy running around and getting wet for a few minutes.  You don't try to stay dry in weather like that.  You enjoy it while it lasts (Arizona has over 300 sunny days a year - that is completely sunny, not a cloud in the sunny sky.  It helps one appreciate the rain and especially a good storm.)

There are a lot of storms in one's life.  The most thought of but probably least common (at least in Arizona) is the weather type.  There are other types - storms in relationships, families, work, personally, etc.  Lately our family is enduring another not often talked about and probably not even noticed by most -a storm of blessings.  In the last few months we have had a child go "into remission" from a disease that causes tumors, a great promotion for my husband (and a raise!), money sent from family we were not expecting, the opportunity to spend a few weeks visiting most of our extended family, a great vacation, a new king size bed, an opportunity for me to have a temporary job and still be able to be at home most of that time, opportunity to see one of our siblings get married, cars that are older than our children continue to run well, a brand new sectional couch that is large enough for our eight person family given to us, twins currently potty training, and I am sure the list goes on.  There have been a few times in my life where I have experienced the "window of heaven open and pour out a blessing so great there is not room enough to receive it".  This is one of those times.  I am indeed grateful and appreciate that this is not suppose to be the normal flow of life, but rather an occasional burst of joy and blessings.  I appreciate such a wonderful outpouring for our family.  We truly feel like we have been blessed a hundred fold of anything we could have possibly done.

In monsoon rains you don't stay dry, but that is ok.  Rain is good for many things, especially for getting you wet.  I like being soaked and I am.

When I grow up...

Jeff made a wonderful stew for dinner tonight.  MaggieMae complimented Jeff on it and told him, "When you grow up, you should be a chef."

What does the President (of the USA) do?

Tonight at dinner we were discussing with the kids why we support Mitt Romney for President (more on that later).  MaggieMae asked a follow up questions, "Since the President's job is to protect us, does that mean that his job is to tell Captain Righteousness (think Captain Kangaroo crossed with Green Lantern that appears monthly during Sunday School to teach the children about choosing the right) to get all the bad guys?".   Sigh, if only it were that easy Maggie.  Of course my initial reaction (besides laughing) was isn't that a conflict of what a lot of people interpret of "separation of church and state", probably violates many defense contract laws, civil liberties groups, etc.

Potty training twins is more than 2 times the fun!

Our kids are mildly interested in potty training.  We are leaving for a three week vacation soon, so I have no desire to push them in this area.  I am politely supporting them and letting them sit on the potty when they want or if I happen to notice them looking like they need to go.  Rosi is not as successful as William in this area.  She seems to be enjoying he opportunity to sit with mom in the bathroom and have a chat, read a story, or just enjoy a gentle breeze on her backside.  She has an unusual stance when on the toilet.  She has unusual flexibility for a 2 year old and can do sideways splits with her legs.  This is even more comical when she is sitting on the potty, with her "splits" posture pushing her feet against the two sidewalls in that bathroom.  She will occasionally throw in her arms to make it look like she is in the trash compactor of Star Wars.  Well, she is sitting in this normal position for her and she looks down at the water (a typical past time in this position) when she takes her hand and points down.  I am thinking, "well, I did not notice she did any 'business' " but I take a look.  That is when I notice she is dipping her one finger into the water.  I ease my mind by reminding myself that it is a clean toilet that even has the bleach tablets in it.  It is about this time that I see her bring her finger up to her face and stick it in her mouth.  


"Water!", she tells me.  

Vertigo....

I thought we had had enough excitement for our summer, but last Tuesday I had to call Jeff home from work.  I was not feeling good (at first I thought it was the Mango I was sharing with the kids, just because it was a new thing for us) and lay down for a few minutes.  After 10 minutes of the room spinning I called Jeff at work.  We decided to give it 15 more minutes in which I did not improve.  Jeff graciously took a sick day and came home to rescue me.  Clutching my head, I struggled to find the hallway.  Jeff held my free hand and walked me upstairs to our room to lay down.  I added my second hand to my desperate attempt to keep my head still, yet the room continued to spin.  This went on for about 4 more hours.  The next day Jeff stayed home to drive me to the doctor.  The spinning was much less, but after sitting on the toilet and having to brace myself between the two walls while still experiencing a roller coaster affect, I knew getting behind the wheel of our car was not a good idea.

Doctor asked me tons of questions mostly linked to other conditions (high blood pressure, diabetes, violent throwing up, etc) which all the answers were no.  He diagnosed me with simple "benign vertigo".  He said that it is probably a virus, etc in my inner ear that is causing this.  Usually people don't get it more than once in a lifetime unless there is an underlying cause (tumor, diabetes, high blood pressure, etc), hence all the previous questions.  Just as a side note, I have had vertigo at least two other times, but now close to this "severe".

He told me that there were three things I needed to do:

1. Drink lots of fluid
2. take Rx - Antivert
3. Get rest

When he mentioned the 3rd one, I asked him to elaborate what he meant.  He seemed befuddled by the question and said, "Well, you still have to function and you are a mother of 6, so I don't expect you will be in bed all day..."

So we drove home, picked up the Rx, and I went to bed for the rest of the day.  Sort of nice in the laying in bed sense, not good in the spinning room, and my family having to get a long without me sense.  First night I slept 8 hours, next day I took a 2 hour nap.  Second night slept 11 hours, took a two hour nap.  Third night slept 11 hours, took a three hour nap.  Are you seeing a pattern here?  I was getting between 10 and 14 hours of sleep every day.  And with all this bed time you would think I would be rested and alert.  Nope!  All I thought about was taking a nap.  I had to literally drag/guilt myself out of bed each time.  I knew I was spending way too much time sleeping.  By Sunday evening I had enough.  I ended up coming home early from church (leaving my Primary responsibilities to the Presidency) and going straight to bed.  I slept around 3-4 hours on Sunday too.  I stopped my Rx Sunday night and called my doctor Monday morning.  They got back to me later that day to tell me it was OK to stop taking the medicine, but that if the vertigo came back, I would need to come back in before starting on medication again.  It took 18 hours for that medicine to leave my body.  I literally felt a physical difference, emotional difference, as well as an intillecutal difference.  My mind was no longer clouded.  Thinking complete thoughts came easy to me again.  I felt wonderful.  

Now lest you think that I am exaggerating this in the smallest degree (which I am not) I will relate a conversation my husband and I had a few days ago.  I commented how exhausted and fragile I felt when Jeff agreed that it was really tough.  I responded by asking if it was as tough as pregnancies are.  He said it was worse, that when I had rough patches during pregnancy it only lasted a couple of days.  This was almost a week long.  Poor guy!

No tumors!!!!

Good news!!! No tumors found in the PET scan. Andrew is (currently) tumor free. He will have to get CT scans every 3 months for the next year, and every 6 months after that for follow up! What a great way to start the weekend/summer!!!

He will have to do follow ups for probably 5 years to make sure he is tumor free.  I will probably know more after our next visit in three months.

Just for general information, Andrew does currently have two lumps behind his right ear.  The doctor felt that they were simply from his lymph nodes and not a tumor.  Andrew still has them even after a round of antibiotics, so we are watching them for the next two weeks.  If they do not go away and/or they grow in size, then we will be going back in to the Oncologist to have a follow up on that, but it is the doctor's opinion that these are not tumors but something else if they do not resolve away on their own.  At this point he would check Andrew's other lymph nodes, but this does not seem to be a worrisome problem.

Awesome Readers!!!

Our kids do a great job of reading books.  Anna did double the amount of reading for the last quarter that she did the other quarters.  Andrew and JJ both met their goals for the 4th quarter as well.  We had promised them a dinner out, one of their favorite awards to achieve, so we all went to Village Inn (also one of their favorite places to eat).  We had lots of fun, and their behavior is improving when eating out.  We had lots of fun.

I don't feel like I am doing this memory justice, but I am tired and am really feeling the laps at the pool in my upper arms right now, so I am done.

Post PET scan

Andrew is all done with his PET scan.  He took his knew friend "Harpy" a stuffed Harp Seal (ain't we creative on names?) that his wonderful cousins sent with him.  We joked with the nurse that he brought his stuffed "pet" for the PET scan.  They put him under using laughing gas.  It was a little bit different than other times they have seduated him.  I guess I should really be keeping track of which type they use, how he reacts, etc.  Today he chatted with us for a couple of minutes.  I held the mask in place and watched as his eyes went blood shot within about 10 seconds.  The nurses and the anesthesiology made some jokes and then one of the nurses comes over and places her hands on his abdomen.  Two seconds later he was almost gone and she calls the other two over, Andrew starts fighting and tries to get up and then just sags back down onto the table.  She comments that happens often just as they slip off.  I guess it just shows how thick my skin is that I just said, "Huh" and walked off.  Afterward I wondered why I did not get more of a heads up, but no big deal.

It took a couple of hours (an hour or so longer than I thought it would) but they called me back.  When I got back to recovery I was surprised to see how "with it" he was only to realize he was not very with it yet.  We chatted a bit while we waited for him to feel up to dressing.  The nurse went over his "after-care" instructions.  She was telling us how he should go home and lay down, not eat greasy foods, etc.  I chuckled and told her this was the third time in the last month he had been sedated and I knew he wanted to go straight for the cafeteria and have a slice of pepperoni pizza.  She continued to go over how gentle we should be with him.  I continued to smile and tell her that we follow his lead.  She stopped at that point.  We asked them to not give him any anti-nausea medicine (Zofran) as it seemed to precipitate the vomiting last time.  They did not give him any and he did great!

Right now he is just hanging out playing video games.  He did fall asleep on the way home, so next time I need to make him more comfortable and hook up the familiar music faster.  I did not think of that until we were half way home (he was looking a bit sleepy) so I turned on some Reba and off he went!

JJism's

I have a friend who loves to hear stories about JJ.  It always gives here a good giggle.  Here is another one.

Two Sunday's ago JJ stayed in bed until a short while before 9:00 am church.  I woke him up and scooted him along as quickly as I could.  There was no time for breakfast, so I threw some cereal in a bad and grabbed a bottle of water for him.  JJ normally eats his cereal dry, so this isn't much of a change for him.  Usually our older children do not get a snack during Sacrament meeting.  It lasts a little bit longer than an hour.  JJ was enjoying the opportunity to munch away.  The sacrament is passed about 20 minutes into the service.  In our church they bring it around on plates with broken bread and then followed by trays of tiny cups of water.  JJ continued to munch away and when the water was brought.  The young man tried to pass the tray of cups to JJ but he declined holding up his bottle of water and telling him, "I brought my own".  Daddy tried to gently persuade JJ to take the blessed water, JJ being the ever stubborn pragmatist replied, "I have my own water dad!".

current update

Andrew was suppose to get a PET scan this week, but we found two lumps behind his left ear.  The doctor thinks Andrew has an infection and that they are possibly swollen lymph nodes.  He put Andrew on anti-biotics for a week and postponed the PET scan, rescheduling it for next Tuesday.  They needed to put it off if there is a suspected infection because in the scan an infection and tumor would both look the same.  The PET scan measures the rate of (radioactive) metabolizing sugar.  Both tumors and infections consume a lot of calories, so they "look the same" on a scan.

Today our family is fasting that if Andrew has anymore tumors that we will be able to find them and "get them taken care of", however we'd prefer that he not have any more tumors.

Got to run!

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.

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.

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. :)

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.

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.

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.

tweener's and dating

JJ would probably kill me for this picture, but this was from his 7th birthday.  He wanted a 1,000 donuts.  I guess I win again for ingenuity.

On a different point, JJ informed me today that he has a girlfriend.  Yes, she tried to hold his hand in church  yesterday and there was reports of a possible kiss.  Hmm, how do I feel about this?  I have to chuckle as I think back to growing up, this was about the age I met my "high school sweetheart" and we grew up a few miles from each other, started dating our senior year of high school and our freshman year of college.  Obviously it did not work out for us, but that is fine with me because I have my perfect match.  

So back to JJ.  We talked about dating and that I felt he needed to wait until he was 16 before he was ready to start thinking about holding girls hands and giving a girl a kiss good night.  Until he was 16 he needed to be focused on developing friendships with boys and girls and figuring out what types of people he liked and would be a good match for him.  

I am sure I sound old fashioned, but as I look back on my personal experience (I started dating when I was 14) and the experience of friends and then later of young woman in my church I was an advisor for, I really feel that waiting until a young woman/man is 16 is wise.  I use to tell the 13 year old young woman that I worked with, it is ok not to date right now.  All the girls I know that got pregnant before they were married started dating before they were 16.  Now I am not trying to suggest this is a magic bullet for all the world's social problems, but rather to let them know that they really need to think about where the choices they are making are going to/could lead.

As a side note, many of the young woman I was a councilor/advisor to did wait until they were 16 or older to date.  In general, they had a lot less drama, chose more stable young men and seemed to better understand themselves within relationships.

Will my kids start dating when they are 16 maybe, we will see.  One of their parents did not date much until their mid 20's.  I guess we will see how reality unfolds our future, but for now, 7 is definitely too young and 16 is not really that far away.

Being a mom without the guilt

There is a philosophy often spouted by older woman or I should say woman who have older children.  The scene almost always looks the same, my kids being a handful in some public place and me counting to ten under my breath and usually to three out loud to my children.  Then some kind lady (occasionally a nice man) will mention to me out of the blue, "Treasure this, they grow up too fast".  So with that mind-set, in November I started trying to enjoy the snuggles a little bit more than I had in the past, did not worry about laundry or clean bathrooms, etc.  If my kids were having difficulty with sleeping I would snuggle with them to help them fall asleep.  After all, isn't a child "sleeping enough" one of my most important responsibilites? The effects of a well rested child lay the foundation for much of the teaching I am responsible for.  Well, this went on for a few weeks (which is in part why I forgot my blog) and I really enjoyed it.  I got to help a stubborn little girl (Rosi) up the stairs by her elbows while she insisted on carrying the towels upstairs to put them away in the bathroom without being capable of balancing herself up the stairs with an armful of clean, folded towels.  Spent a lot of time snuggling with William when he was suppose to be sleeping.  It was all delightful.

I can truly say I have much enjoyed this time with my children.  I have definitely enjoyed the extra snuggles, and playtime, etc that I have had.  Unfortunately there is a down side, when you are enjoying all this extra child time, you might not realize that your "baby" is really sick.  Well, not feverishly sick, but walking around with "walking pneumonia".  But don't worry, he will soon share it with you (or vice versa) and siblings.  So during this time I came down with it as well and endured a month and a half of feeling run down, but maybe I was just learning to enjoy a slower pace in life or I really was "over the hill".  I would struggled out of bed at the last possible minute, but wasn't that normal for a mom who was up with a sick kid again?  I struggled with feeling warm enough.  I really felt cold all the time unless I was under many blankets in bed.  In the morning my eyes hurt to open.  I am thinking I really don't like getting old, it is as bad as they joke about.

When my two sons were diagnosed with "walking pneumonia" which evidently has one symptom - a cough that won't go away - and could resemble allergies to many of us medically uneducated, it was a relief and a clarion call.  I realized I needed to go in right away and get checked out and that all this lethargic, freezing was probably not related to age or sleep deprivation.  Yep, a week later after antibiotics/steroids I feel amazing.  I feel the need to clean toilets as well as cuddle with a little boy who still struggles with sleep but hopefully now it is as a result of having a bad habit of not sleeping well, instead of struggling to breath.  So while I still hear those sweet people reminding me to enjoy my sweet time with my young ones, I can't help but think...I don't mind the handfuls and maybe I can enjoy that too.

PS I am not sure why we were having these donuts in the picture, but that is another thing we have learned to enjoy a little more often than necessary.

Tattoo's

Well, today my oldest (10 years old) came home from school with a "temporary tattoo".  While harmless in nature, I wanted to make sure she was thinking about her choices she makes.  I asked her if she knew why her dad and I chose not to have tattoos.
She sighed, "It is only temporary, I can wash it off."
I responded, "I know.  But that wasn't the question.  Why do you think we don't choose to have tattoos?"
She said, "I don't know."
Exactly my point, I think to myself.  I reply, "Well, mom and dad feel our body is a gift from God and it is beautiful.  If you gave me a beautiful dress for a gift, how would you feel if I took a marker to it to change it or make it look more interesting?"
Shocked look on her face, "I would be really sad about that."
The conversation was enough.  She sat down and did her homework.  She came to me after she finished, with a wet arm and said, "I tried to wash it off, I even used soap and it won't come off."
"Hmmm, maybe try a dish towel."
"I thought you'd say that."  She takes the dishtowel I hand her and she scrubs.  It comes off after a few good minutes of scrubbing.  Her arm is red.
Being a mom who tries to be in the moment and teaching where I can, I point out, "It did not hurt going on, but it looks like it hurt coming off."
She says, "Yeah"
"Sometimes that's how it is.  When we make choices we don't really think about they are easy to get into, but getting out of them is a lot more difficult.  A lot of times our choices leave marks behind.  A real tattoo you can't get rid of that easily."