Missing Puzzle Pieces

The title of this post is what we feel like with Tag's tumor diagnosis.  Today, we drove back up to Primary's and were 45 minutes late for our appointment because of a nasty accident in the Orem area that had traffic backed up for miles.  Arrrrgh.

Waiting for the doctor visit.

Anyway, Dr. Siddiqi was his usual friendly self as he examined Tag's stitches and said that he needed another week or so to heal before taking them out.  So, really no need to be there.  Arrrrgh.

Tag's friend, Dr. Saddiqi

Then we looked at the final pathology from the skin resection they did two weeks ago.  There was no sign of Triton Tumor cells (good news), but they did find benign neurofriboma cells.  So, here's a recap:

• 1 week old:  They do a biopsy of the tumor and the expert requests another one.
• 1.5 weeks old:  They do a 2nd biopsy and the experts concur that the tumor is a benign infantile myofibroma.  A non-dangerous tumor.  So they tell us we should wait until he's 5 months old to take off the tumor, and no worries because there's no cancer.
• 6 months old: They remove the tumor and all seems well.  We return to take out stitches and they inform us they have found cancer in the tumor and we wait for another month for them to tell us it is a "Triton Tumor" -- very dangerous, cancerous tumor -- so we put Tag through 4 difficult tests to make sure there's not any cancer in other parts of this body.  He passes those tests.
• 8 months old:  They do yet another surgery and remove more of the skin off his little head to test for remaining Triton cells in the skin.  This turns a relatively small scar into a large one.
• 9 months old (today): The pathology from the skin shows no cancerous Triton tumor cells in his head, but cells of "Neurofibroma" -- or something we have never been told.

Dr. Siddiqi commented, "It seems like you guys get a different diagnosis every time you come in here."  To which I said "No Kidding!"  Anyway, we will have to call the oncologist to get her most recent take on the situation, but as of right now we understand Tag is clear.

Go Broncos!

Meanwhile, Tag is growing like a wildfire.  Joann has him on a pretty strict diet of healthy, organic stuff in order to boost his immune system to its max and as luck would have it, he'll eat almost anything, and a lot of it!  Some of his favorites are cooked zucchini and also avocados.

This afternoon, we took him to visit Grandpa Brinton, and while the adults were talking, we looked over to the blanket he was sitting on to find that he'd shimmied to the cabinet, pulled himself up, and was checking out all the fun frames and other items in the shelf.

Yep, I can stand up on my own, Dad.  Look out below!

Grandpa Brinton and Tag had a great time playing "Climb the Mountain".

Wow, Grandpa, you've got quite a mountain to climb!

The other night, Tag was not wanting to go to sleep and was wailing his determination to stay awake.  Then it got quiet and as Joann went in to check on him she noticed he had fallen asleep with both legs sticking out of the crib and his body in some sort of Houdini-like contortion.  Yeah, yeah, we know, they make bumpers for cribs to help avoid this issue, but we lost our key to our storage unit and our bumpers are safe and sound locked away.  We couldn't stop laughing as we took him out of this position.

Don't try this at home.

Time For A Drive

It's been an eventful couple of weeks, what with summer winding down.  Tomorrow, we head back up to Primary's to get Tag's stitches out and talk about what might be next.  By the looks of the picture below, Tag seems ready to head north once again!

PS. Tag pulled himself up on the steering wheel all by himself.  Just one of his many new talents.

In the Clear

Dear Tag,

You came home from the hospital Monday night and your Mom and I were so grateful to have you home.  The next morning we took off your bandages to reveal a scar that we weren't expecting.

Joann gasped when she first saw it and I must admit it caused me to hold my breath a bit.  The doctor had said, "The scar's a little bigger now" -- the understatement of the year.  But no worries, it'll heal and you'll be as good as new soon enough.

The next day (yesterday), I had to leave for Salt Lake for two days of meetings to slay some dragons and make a living.  I thought of you often.  Everywhere I went, someone asked me how you were doing and I had to tell the story of the last few days over and over to interested friends.  Each time I mustered up the energy to tell the story of you I found myself getting more and more homesick to just see you.  One of my friends asked, "So, are you in the clear?"

Great question.  Are we ever really in the clear?  It seems like problems are the salt of life and you and I have had a spicy couple of months!

Tonight, though, I came home and just lay on the floor next to you as you grabbed at toys and laughed, as if to show me which ones you liked.  Or maybe you laughed because you can pick them up.  Then you climbed on me (without any help) and laughed as you did so.  As I write down this memory, my eyes tear up because despite all our spice, we still have each other and the chance to play.

I hope you're in the clear, cancer-wise, because we have so much playing yet to do.  Thank you for smiling at me tonight and helping me feel that everything is all right with you.  Everything's all right with me too.

I love you, Tag.

Battle Worthy

Tag slept nearly 12 hours in total last night and awoke with the scars of battle.  He has a headband covering where they cut skin out of his scalp.  His face remains swollen, but since waking he only tries to smile.  No crying.  Typical Tag attitude and action.  So good to have him home.  Both Joann and I waited anxiously for him to wake up so we good get a good dose of a Tag smile.  He did not disappoint.

Dick Butkus vs. Al Capone

We took Tag home tonight at about 7PM.  All he wanted to do was nurse and be with his Mom.  Before leaving Salt Lake, we enjoyed some sushi with our good friends, Tom and Jake Stringham.  While there, Tag was starting to want solid food, but mostly he was quiet and enjoying the Loritab.  His face was swollen and head wrapped.  He kept making these funny faces that looked like the famous Chicago Bear, Dick Butkus, or he would tilt his head back and glare down at me, like Al Capone.  It was so funny, but I only had my cell phone to take a photo.  Enjoy.

Whatchu Lookin At, PUNK?!

One Cut and Done!

Dr. Sadiqi just came out of surgery and announced that he only had to make one cut because the test came back negative (a good thing) and the sample was clear of any cancer.  Woohoo!  They still want to test it further, which will take 1-2 weeks, but he says that's very rare to have it show positive after initial testing.  I smiled and nodded with the good news, but kind of laughed inside, because I've learned that anything is possible (both good news and bad).

Still, we are very excited and even better, because they didn't have do any skin grafts, we don't have to stay overnight and are able to go home!  Tag's coming out in 10 minutes and will no doubt have an exciting reunion with Joann's breasts.

We hope and pray that this will be the last visit to Primary's.  Thank you so much for everyone's prayers and good vibes coming our way.  Tag has passed another test.

Nurse called and Tag's stable, they are waiting on first and hopefully only skin results now.

Nark

I forgot to mention this little story from this morning.

I dropped Jo and Tag off at the door and parked the car.  On the way to the surgery checkin, I bought a Dr. Pepper from the cafe and did an admirable job sneaking it past 2 security guards and about 3 nurses en route to the waiting area... then just as I was scot free, I walked into the surgery waiting area and Jo and tag were right by the check in desk, where four nurses sat.  The first words out of Joann's mouth were, (and quite loud), "You're NOT supposed to have that drink in here!"

I'm still laughing that my own wife ratted me out.

Joann here...Just to clarify beyond the fact that I'm generally a rule keeper and naturally bossy- the reason there are signs posted all over in surgery that food and drinks aren't allowed is that babies and children all come in fasting for their procedures. So in this instance I was feeling more for the kiddos and didn't want to make the experience any more unpleasant for them.  I love my husband dearly despite this infraction ha ha.

Re-Open The Wound

Tag just got taken into surgery that is scheduled for 3 hours.  Dr. Sadiki said he was hopeful they won't find any cancer in Tag's skin and they will close him up, but we'll have to wait and see.  The anesthesiologist said they have matched Tag's blood and have some on hand in case there is a lot of bleeding.  I really don't know how these doctors open up little kids day after day with all that blood and carnage.  I'm amazed and grateful for their hard work, study, and mastery.

Here's a few pictures taken this morning before the surgery.  Here's Tag's scar on July 19th, 2010:

And here it is today, August 16th:

Tag was pretty hungry this morning, but once we got him out of the car, he was his normal happy self.  We just played until they took him into the operating room.

Are those bubbles Dad?  Keep 'em coming!

Cute Mom, handsome son.

Nothing like a little cheek for breakfast.

Tag, living in the moment.

I DARE you to take that knife away from me, Tag!

Aww, you got it!

Just got to hospital. Tag rarely cries so 30 minutes with a hungry boy crying just tears my heart out. He fell asleep just as we arrived. Sigh.

Pin Cushion

We just got word that another surgery has been set this Monday, August 16th for Tag.  We will be going to Primary's on Sunday to do some initial blood work as well.  The purpose of this surgery is to go back into the scalp where the tumor used to be and scrape the inside of the skin to make sure there are no more cancer cells present.  Making certain the tumor is fully removed is the best strategy used on this type of tumor.

What they do is re-open the wound (that was almost healed!), and scrape a little bit.  Then, while Tag is still asleep, they rush the cells to the lab where they test for cancer cells.  If they find any, they keep scraping until they find no more.

The surgeon is hopeful that he won't find any and there will be enough skin to sew back up.  However, there is a possibility that they may have to take all the skin off and would have to perform a temporary skin graft until he is old enough to do yet another surgery where they put skin expanders in the other side of his head and stretch enough that would suffice to use as a patch over the other side.  UGH, we hope this worst-case scenario doesn't have to be so.

We understand that Tag will be staying the night on Monday, as will his parents.  While we are grateful for the staff and expertise up at Primary's, we certainly are not excited about another night at the hospital.  However, it's just part of Tag's grand adventure, so hang on for the ride!

Tag had his first run in with a pen yesterday and Joann sent the picture of his self-made "mustache" to my phone.

Then, this morning Tag was up and ready to play at 6 AM so I took him outside to help me water the plants while Joann tried to sleep.  Tag loves to put his fingers into the stream of the hose.  He also loves to be outside.  There is so much to see from the eyes of an 8 month old.  I remain inspired at how he lives in the present and I try to do the same the more I am with him.

He was quite fussy around 8:30, even while Joann was feeding him.  I heard her upstairs on the phone telling someone that he didn't seem himself.  Then, it was quiet.  I heard her laughing and she brought me down this photo.  I guess he was breast feeding and fell asleep mid-feed.

On a side note, I have a nephew who just turned 5 named Niki Kriser.  He's a great kid and I promised him I'd take him miniature golfing, so last night he and I cruised up to the old Trafalga in Orem, Utah.  We played 18 holes and Niki scored two completely legitimate hole-in-ones.  It was so funny because he could barely hold the putter and his stroke was unconventional to say the least.  But I'll be damned if he didn't smack two amazing shots against the wall that banked right in the hole.  He also managed to hit into two bushes and the lake, where Uncle Mitch had to use his ball retrieving skills.  Good thing I've hit a lake or two in my day.

Hole In ONE, baby!

We also rode the go carts and played some video games.  We tried our best to win as many tickets we could so he could get a prize.  We found one game where you try and drop your token through the machine into some plastic footballs that were rotating in a circle with little holes cut into the top.  You could see hundreds of tokens by the wayside where the machine had taken its victims.  We mastered it and won nearly 400 tickets!

I thought for sure that meant a great prize for Niki, but that only qualified him for a Pixie Stix candy stick.  What a racket!  We also watched a pretty cool roller coaster movie in 4D, where the seat moved and shook and wind blew on you to create the sensation you were actually on the coaster.  I thought it was pretty cool.  I asked Niki if he liked the ride and he said, "Yeah".  Then I asked, "Would you do it again?" and he frankly said, "No."  You gotta love the honesty.

These glasses don't fit my head, Uncle Mitch...

It was fun to spend the evening with a 5 year old and imagine all the adventures I hope to have with Tag as he grows.  Thanks for the good time, Niki, and Happy Birthday buddy!

8 Months

Dear Tag,

I hope and pray daily with all my heart you’ll be able to read this blog in your old age, after a long life filled with baseball, corn on the cob, 6-handed Rook, a posterity of your own to experience for yourself, and all the other things you enjoy in this life.

Today, I was reading a big stack of papers given to us by our pediatrician and neighbor, Mike Fullmer, regarding your tumor and the research that has been recorded as of 2010.  On the one hand, it’s interesting to read about the numbers and the observations.  On the other hand, it’s all so clinical and cold as if all these others who have had a tumor like yours are just some number in an experiment.  I can’t help but think of all the parents, siblings, friends, and other loved ones who experienced so much pain as each of these “statistics” did not survive their cancers.

Here's a few of the highlights:

FINAL DIAGNOSIS: SOFT TISSUE, POSTERIOR SCALP, EXCISION: MALIGNANT PERIPHERAL NERVE SHEATH TUMOR WITH RHABDOMYOBLASTIC DIFFERENTIATION (MALIGNANT TRITON TUMOR), COG GRADE 3, ARISING IN A NEUROFIBROMA. TUMOR IS FOCALLY PRESENT AT THE SUPERFICIAL SKIN/SOFT TISSUE MARGIN.

COMMENTS:  (excerpts)  The case was reviewed by David Parham from The Children's Hospital at Oklahoma Univ Medical Center and Christopher Fletcher from Brigham and Women's Hospital, Harvard School of Medicine.  Also Cheryl Coffin from Vanderbilt Univ Medical Center.  The first two specialists concurred that the tumor was a Triton tumor while Coffin favors a diagnosis of embryonal rhabdomyosarcoma with spindles cell features and possible associated neurofibroma.  All three agreed that "this infant should be evaluated for neurofibromatosis."

GROSS EXAMINATION: The specimen is received fresh in one container labeled with the patient's name "myofibroma of posterior scalp" and consists of an unoriented, 180.9 g, pink, nodular mass measuring 10.5 x 9.6 x 3.8 cm with attached tan-white skin oval (4.7 x 4.0 cm) with single well-healed linear scar. The entire specimen is ..sectioned to reveal two well-circumscribed (possibly encapsulated) nodules attached by a thin band of soft tissue. The cut surface is homogenous, firm, glistening, and tan-pink.
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How rare is this tumor?  The chances for a human being to get this type of tumor is .001% among the general population, and not a single one has been recorded among a newborn infant.  Quite a few hospitals have kept stats on patients with this tumor and the numbers aren't very good on survival, although none in those studies were below the age of 8. Surgical resection represents the best treatment and some think that post-operative radiotherapy has played some role in improving local control.  Although the "potential morbidity of irradiation should be taken into account, particularly when treating children."

At least once a day someone asks me how you are doing and how I am doing because of your situation.  So, whether I want to or not, I am constantly reminded that this issue facing us cannot be avoided or swept under a rug to deal with later.  It’s right here, in front of us, and we simply have to face it head on.  I choose to face it with a smile and simply hold you and play with you every chance I get.  I’m reminded of one of my favorite movies, “Finding Neverland” where Johnny Depp’s character comments to the mother of young boys jumping from bed to bed, “It’s such a shame to send little boys to bed, for they wake up a day older.”  How true this is.

Today in Church, I saw a newborn little girl being carried by her mother.  She was so tiny!  At times you still look like Baby Tag, but more and more you are looking like a little boy and I already miss that phase!  I really can’t imagine the pain I would feel if you were not to survive this cancer and left Joann and I early.  How unfair this would be!  I really just can’t allow my mind to go down such paths, and so each day I play with you and simply try and take you all in.

I remain so hopeful for you, son, and I am glad to know that no matter what happens with your physical body, we will always be together and always have a chance to play catch, sink a putt, swish a 3-pointer, raft a river, pop a wheelie, and so many other fun experiences.

I know this because of the knowledge I have of the power of the Priesthood and the sealing power that exists on the earth through the restored gospel of Christ that provides a way for you and I to be sealed together for the eternities.  So many do not have this knowledge and understanding, and I am humbled and grateful that I do…with you.

In the last few weeks, you’ve learned a few new games that we like to play.  If I roll a ball up to you while you are sitting, you smile and squeeze the ball, try to eat it for a bit, and then throw it back  toward me.  It’s so fun, although you tend to use your right hand more than your left and this is disconcerting, as both your Dad and Grandpa Brinton are southpaws.

Another game, I put on my baseball cap and lean forward so you can’t see my face below the brim.  You reach out and pull off the cap to reveal my hair, and I lift up and yell, “You got it!” and you smile and hand the hat back to me to do it again.

You love to reach out and grab at my face in the early morning hours and it feels to me like you are waking me up to play, so I do.

Yesterday, we helped your Uncle Mitch Spence move and I noticed one of those kid-sized remote control jeeps on their deck, so I took you outside and sat you in the seat and pushed you around while making car noises.  You weren't sure if you liked the sensation of moving fast in a car yet, but don't worry, you will! 

You love your grandma Momsie and she has an amazing talent for making you laugh, whether by making sounds or songs or movements.  I find myself being jealous of her unique abilities, but I’m also grateful for loving grandparents who love you and play with you.

You are a very curious, social fellow and you have no interest in taking naps whenever there is a crowd or activity within your view.  You are quick to smile, easily forgive, don't like to face inward when being carried, eat most anything (even the healthy, organic stuff your Mom keeps giving you), don't like beets (me neither!), already know how to slap 5, love the outdoors, roll to your left better than your right and are about to start crawling.

The other day you grabbed the side rails of your little baby bed and pulled yourself up to a standing position and stood there proudly with your chest out as if you had just climbed the Grand Tetons.

"Hey Dad, watch what I can do.."

"I'm Standing!"

Joann sadly put away the little side bed after witnessing this, and you barely fit on the changing table anymore.  Wow, a lot has happened in 8 months!  Remember when you have kids to soak in every little phase and take lots of pictures and videos, because I am shocked at how fast you have grown already.

As I write this, you are napping and I am anxious for you to wake up so we can find a new game to play.

Granddads

We have had a few conversations with our oncologist at Primary's.  There is quite an open debate about Tag's diagnosis and next steps.  The current thought is that the tumor was a nerve sheath tumor, also called a "Triton tumor".  She told us these are very rare (that's my boy!) and typically the treatment is to make sure and remove ALL of it.  This means they may have to remove more of the skin on his scalp which was fused with the tumor, but wasn't a concern at the time because they thought it was benign. 

Chemotherapy and radiation haven't had good results with this type of tumor which makes Joann and I very happy, because with all the reading we've been doing, we have been really opposed to these types of "treatments," especially on such a young patient. There is a monthly tumor board meeting tomorrow and Tag is a featured topic.  We're anxious to see what comes out of that meeting.

Meanwhile, Tag's been getting some quality Tag-time with his two Granddads, Howard and Charky.  Here's a few pictures of these precious moments.

You've got onion breath, Grandpa...

Another call for YOU, Tag.

Days away from getting wheels.

Who wants to break wind on Grandpa?  Me!

You think I'm funny, Papaw?

Mmmm, soft cheeks for dessert.

I'll take the thumb, thank you very much.

No caption needed.  Good times.

Shooting Star

I came back from a fun weekend in Bear Lake with the in-laws yesterday while Joann and Tag stayed behind to hang a little longer in the cool mountain air.  Tonight I was sitting on the deck overlooking the valley and it was a spectacular sunset.  As dusk neared, the sky was still quite light and I was admiring the sunset when all of sudden I witnessed the biggest, brightest shooting star I have ever seen.  It was even bright with a light sky and ran down the sky in "Apollo 13" fashion.

I made a wish on that star that my little Tagman would be cancer free and playing little league, tennis, and golf soon.

I miss you Jo and Tag.