Hold The Phone!

Joann and I took little Tag back to Primary's for a what we thought was going to be a quick follow-up after his surgery.  Everything seemed to be fine with him, as he doesn't seem to even notice it was there and he's so happy.

Dr. Bruggers (our oncologist) came in and informed us that to their shock they discovered that Tag's tumor was what they call a "Rhabdomyosarcoma" which is a malignant form of cancer!  Joann and I just sat there in what can only be described as shock.  Dr. Bruggers explained that somehow the two biopsies they took when Tag was a month old showed no signs of cancer, but that upon testing more of the tissue it was apparent the diagnosis had changed.

So, the adventure continues!  What happens next are multiple tests to determine if the cancer is localized to that spot on his head or if the cells have moved anywhere in his body.  These tests will be done sooner than later (probably early next week) and include: A lung CT Scan, a neck and back MRI, a bone scan and a bone marrow aspiration biopsy.  This will include another stay at the hospital and more poking and prodding on our little man.

Rather than speculating on anything, including treatments and alternatives, we have decided to remain calm and simply wait for more information resulting from these tests.  Joann and I seemed calm as we left the hospital, but later that evening we stopped in to grab some items for and upcoming family reunion this weekend, and I left Joann in the running car with Tag.  A few minutes later I saw her in the store and she told me she had locked the keys in the car.  When I asked her about how this could have happened, she said she didn't even remember turning the car off, let alone getting out of the car and locking it.  This aptly described the numb shock we both were experiencing yesterday.

I believe all will be well and I am just trying my best to breathe and play with Tag.  Yesterday, Tag's cousins were in town and fighting for a chance to hold him.  Here's a few photos with Adele (my sister Darcie's daughter) playing with Tag:

Summertime

Tag's ready for Summer.  He's been smiling and growing.  Jo and I think he changes every other day!  I hope everyone's having a great summer.

Proud Father on Father's Day

 I'm sorry it has been a week since giving an update.  Many have called to see how Tag's doing.  The first of the week was a blur as Joann and I slept in and tried our best to get back to normal after little sleep and much drama.  It has been so good to just be home and see Tag smiling and playing.

Tag really is doing better than fine.  We all comment each day how lucky we are to get to share his smiles and funny sounds.  His windmill wound doesn't bother him a bit.  In fact, I haven't seen him touch it or grab at it even once.  He rolls to that side of his head as if the bump was never there and he seems more willing to have some tummy time, now that his head is easier to lift up.  From my viewpoint this is a gift and Joann and I are just so happy to still have our son.

On Wednesday morning Tag was wide awake at 6:30 AM, and Joann wanted to sleep, so I decided to break out the walking stroller and take him for a walk.  It was quite chilly (about 45 degrees) up on the mountain where we live, so I had to bundle Tag up to keep him warm.  We walked the hills where we live for 45 minutes and he didn't make a sound.  I stopped a few times to see if he was asleep, but when I walked around to the front of the stroller to check on him he just looked quietly at me with a tentative "I think I like this adventure" look on his face, then upon seeing me would give me a little smile.  It was so classic.

As my first Father's Day approaches tomorrow, I am so excited for this honor.  I've waited a long, long time to be a father and I hope Tag will always know how much I love him.  His constant smile and courage truly inspire me and if he ever reads this someday I want him to know how proud I am to be his father.  Good to have you home, son.

The Windmill

The photo below is not for the faint of heart, so viewer beware.  As you can imagine, when the doctors resected Tag's tumor, it was very large and had stretched the skin on his little scalp almost to its maximum.  So, to take it off without leaving a large vertical scar, Dr. Sadiki employed a strategy to fold the skin in a windmill fashion and stitched Tag up in the middle.  Thus, when he heals only a small, round scar will be what's left.

It just shocks Joann and I that in less than 48 hours from the time little Tag came out of such an unknown surgery, we walked him out of the hospital without even a bandage covering the wound.  And what a gnarly, impressive wound it is!  Here's Tag's new look for the next few months:

This was taken Sunday morning just before the doctor removed the little drainage tube at the base of his head.  When he removed it, it kind of freaked me out, as the tube was about 6 inches long and went way up into the area of the wound.  Yikes!

Anyway, as the wound heals, the skin is supposed to tighten and pull the skin folds away, leaving just a small round scar in the middle.  Tag doesn't seem to be too bugged by the wound and we even bathed him last night and cleaned things off.

This has to be the sweetest looking Halloween wound I've ever seen!  Oh, how I wish it was October.  Tag would for sure win any Halloween costume contest he entered.

 As you can see above, his little ear actually looks pretty good.  And look, NO BUMP!  I'm very proud of my son for his courage and amazing capacity to be happy.

Thanks to everyone for all the prayers and good vibes on our behalf.  We feel very blessed and lucky to have Tag back home again.

We are home! Tag got discharged at 11:30. Crazy how fast we got out after such a surgery. As we drove home, I felt pretty alert, but as we drove south on I-15, my eyes got heavy at about 90th South.  So, we pulled off in Draper to visit Grandpa Brinton.  I went in to catch a quick 20 minute nap and slept for about 90 minutes!

Will post some photos of Tag's new bump-free head soon! It's wild!

Sunday Morning Update

I stayed in the hospital with Joann and Tag last night.  They had the bed and I had the chair.  Surprisingly, we all slept pretty well.  We are awaiting the arrival of Dr. Sadiki so that he can check out the wound and hopefully give us clearance to leave today.  Tag woke up with nothing but smiles and the nursing staff said they are going to try to keep finding reasons for us to stay so that Tag doesn't have to leave.

We had some visitors yesterday and it was good to see everyone.  Here are some photos:

Grandma Julie Brinton

Aunt Liz and her son, Elijah

Tag's brother Jordan (center), Elijah and Nikki (cousins)

Tag's brother, Michael (center)

Naptime, Tag and Dad

Wagon Ride

We hope to be released today, bump free!

Make a Break For It, Dad!

We all had some nice naps this afternoon.  When Tag woke up, it seemed to me that he could use a little fresh air, so I got permission from the nurse to take him for a little walk down the halls of the unit we're in.  Then, another nurse who caught my vision of adventure, introduced me to a little wagon she had in a back room.  We loaded it with blankets and Tag enjoyed his first wagon ride!  I would make sounds like we were slamming on the breaks and he would laugh out loud.  Then we grabbed Joann and made a break for it and drove around the halls of the hospital.  I'm not sure, but it looks like Tag enjoyed himself. What do you think?

12 Noon, Saturday June 12

Last night was pretty much a nightmare for Joann.  The hospital had given us a little sleeping chamber with a single bed, so I went to my bro-in-law's to try and get some sleep, while Joann stayed at the hospital.  I told her to call me if I was needed, but she never called.

She went to try and get some sleep at midnight, and thanks to Melatonin was able to fall asleep.  Well, about 2am they brought a teenage girl into the other "suite" next to Tag with only a curtain separating the two.  She was very loud and awoke the sleeping babe.  The nurses came and got her as he was really upset and they were occupied with this high maintenance teen.  Joann spent the next 5 hours in a rocker nursing him and holding him so he could sleep.  For the first hour she got to listen to "Can I have ice? Please? Please? Please? Please? (these were spaced out at 2, 5 and sometimes even 10 second intervals. Any wonder that Tag was only happy when being held.  This girl had diabetes and with her yelling for ice cubes, her own room, the doctor; along with sitting up in an uncomfortable rocker without any place for her legs managed to keep her awake the rest of the night.  Nice.  At least Tag was comfy.

Meanwhile, at my bro-in-laws, they arrived home from a month long trip in Asia and Europe while I was asleep.  They met some random guy in the airport who was without a place to stay.  The reason I know this is because from 3AM to 7AM I enjoyed his snoring as he was on a couch in the same room I was in.  Nice.

I got back to the hospital at about 8AM and Tag was breast feeding.  Joann left to try and sleep while I held the little man.  He gave me a smile or two when I arrived, which was great to see.  I took a good look at all the tubes and wires coming off his little body and I noticed that he had something coming off of every appendage, including:

• Right arm: an arterial line
• Right foot: I.V. catheter
• Left arm: 4 wires connected to the machine that monitors blood pressure, pulse, etc.
• Left Foot: some random wire that I still don't know what it does
• Middle leg: Bladder catheter
• Neck: Drainage tube from the bump

I rocked him to sleep for about 45 minutes and then the nurse had to wake him to check his vitals.  I about told her that his vitals were fine and that he needed his sleep, but I held my tongue. 

The residents came by on their rounds and it was so interesting to hear them report Tag's status to the main doctor.  They seemed to use the most technical words they knew in an effort to show their stuff. They were all very nice and explained to me that they don't like to do blood transfusions but Tag's heart rate was pretty high, CRIT (?) rate was low and he was quite pale, so they decided to give him some extra blood.  I raised my hand and the doctor gave me the floor.  I told them that Tag was a Ute fan and I was pretty sure his heart rate was high because he was upset at having this blue turban on his head.  Everyone laughed.

The main doctor gave us clearance to remove most of the wires and tubes, so I held Tag and distracted him while the nurse peeled off tape and pulled out catheters.  He fussed but handled it better than I would have. We just moved out of ICU and into a nicer room on the 4th floor. Tag is napping while being held by his grandmother Marina Spence.  His face is quite puffy and he is really wanting to be held. The staff thinks we'll be able to take him home on Monday. 

9:00 PM - Where AM I?

Joann and I have been hanging bedside with Tag tonight.  Earlier our cousins, Andy and Tausha Brinton, brought us some dinner and it was a relief to see some smiling faces and munch on some homemade orange rolls.

It really pulls at your heart strings to see all the tubes and wires coming out of Tag.  His red blood cell count was a bit down so they are doing a little blood transfusion right now.  I was holding his hand and singing to him a bit ago and he looked at me with glazy eyes but held my gaze.  He had a "What is happening?" look in his eyes, but he's all there.  He held my finger tight until he dozed off into a little nap.

He drank 2 full bottles of Jo's milk while we were down eating dinner, said the nurse.  Poor little dude was famished!  Right now he's behind the curtain with Joann and he's crying.  It's not his regular cry.  It's more of a "Where AM I?" cry.  They gave him a super small dose of morphine about 2 hours ago, to help with any pain, but the nurse said its effect may be wearing off.  I informed her about Tag's amazing ability to be happy, and so if he's crying something is really wrong.  She was glad to hear that and jumps to his aid whenever he's fussing.

I think Joann's going to stay here with Tag tonight.  She scored a little room with a single "bed" that she can use.  I forgot to mention that the doctor said Tag's skull is a little flat where the tumor was and so it will be interesting to find out if they are going to want him to wear one of those shaping helmets for a little while.

We for sure know that we'll be here all weekend and have lots of conversations with the staff.  Not sure if anyone's reading this, but if you are, thank you for all the support.  

Interesting day.  I felt mostly calm and collected the whole time, but after meeting with the doctor, getting the good news, I was walking alone down the hall and my eyes welled up and I had a huge surge of positive energy.  I pounded my fist against the wall a few times and breathed deep.  What a great experience this all has been.  Crazy the love I feel for my little boy.  Gives me a small, but important glimpse into how the Lord must feel about me. How grateful I am for all the prayers and good vibes from friends.  What a story Tag will have to tell as he moves down the path of his life.

Good night, son.  Tomorrow is a new day.

7:00 PM - Just left PICU where we saw a very groggy Tag. He drank a huge bottle of Jo's magic elixer. Tubes on every arm and leg. Turbin-like wrap on his head. 

5:27 PM - Meeting with Dr. Sadiki

Just met with the doctor.  He reported that the surgery only took 1 hour 20 minutes.  They found two veins that they cauterized and so Tag barely bled at all.  The removal of the tumor was "pretty standard" according to Sadiki.  He said that Tag will be in the intensive care for tonight and can probably go home on Monday.

He said that he closed the skin in a way that looks like a coin purse, where you pull the two strings together.  He said that for a few months it will look like the puckered closure of a coin purse while the stretched skin tightens.  When it heals, the scar will be like a dot, rather than any long scars of any kind.

He reported that Tag's ear has been pushed forward for so long that it didn't go back into place... YET.  He said that we can easily fix it to look completely normal when he's 4 or 5 years old.  So, it looks like we'll be on the lookout for some ball caps!  He also said that after 48 hours, Tag shouldn't have any pain at all so that's good news!

Anyway, all the grandparents and Joann and I gathered in a little room after the doctor left (and I gave him a bear hug!) we put our hands into the middle and did a family yelp, "Tag man!"

Thanks to all our friends and family who had us in their thoughts and prayers.  There were prayers answered today.

We haven't seen Tag yet.  He's still in post op and they said we'd see him in about 30 minutes.  I can't wait.

4:44 PM - Update from Surgery

Just got word from the nurse in surgery with Tag.  Apparently the tumor was being fed by two arteries and they isolated them and shut them down.  Then the tumor was taken out with relative ease and they have already finished and are closing it up already!  They reported no problems or issues and said they should be done soon.  If you add up the time, that's only an hour and 20 minutes once they started cutting.  That's miracle fast!

Way to go, Tag!

4:00 PM - Just got a call from docs. Took a while to get Tag stabilized because he was so dehydrated. Started surgery at 3:30. Tick tock tick tock...

3:05 PM: They just got the tubes in Tag and him hydrated and sedated. Starting surgery now.

Waiting Game

2:20 PM:  Tag's in surgery.  Now we sit and wait for 2 hours.  Joann cried as the nurse took him away, but what Mother wouldn't?  Here's a few photos from the last 2 hours:

Waiting room: Tag watches the fishes

Getting a taste of the standard issue hospital gown.

Dad, I like the taste of the thumb, better!

Anything to distract Tag from remembering he's hungry!

Rear View: No butt crack present.

Supportive Grandparents hanging at the cafe.

Dad gets the Tag to sleep to the shock of everyone.

Dad's birds-eye view of Tag while walking the halls.

1:53 PM. Tag just went in. Dr. Sadiki looked alert and ready to go. Good luck little man! We (and so many others) are cheering for you! Love your Dad.

Just got the call. It's Tag's turn at the plate! Already the staff loves the dude. I've been walking the halls to keep his mind off his tummy.

Just got word that our surgeon got called into a trauma situation... delays... Tag is NOT happy as he is hungry. No word on how long the delay.

Heading up to Primary's at 11. Gave Tag a priesthood blessing with Jeff Gochnour and Andy Brinton this morning. We're ready. (Sent this post from my cell phone -- gotta love technology!)

Surgery Time Confirmed

Okay, here's what we know. 

Tag went up to Primary's today with Joann to get some blood work done.  This included a needle in the arm and a prick in the heel.  She said he handled with his normal casual attitude. We are supposed to be at the hospital at 11 AM tomorrow and Tag enters surgery at 12:30.  He's not allowed to eat anything after midnight tonight and his last drop of breast milk stops at 8 AM.  Although if I know Joann, he'll not be keeping that rule.

We have all of Tag's grandparents in town who will be awaiting his arrival into post op and we are grateful to have them all there.  Only Joann and I are allowed into the pre-surgery stuff, like weighing, anesthesia, etc.

Has it only been 6 months since this little boy was born?  With all the drama, it seems so much longer.  On the other hand, it's been the best 6 months of my life.

There are many others who have enjoyed their Tag time as well.  Here's Tag playing with his Grandpa Brinton:

6 Months Old, 4 Days to Surgery

The interest in Tag's well being is heating up as the surgery approaches this Friday.  Our church family in Woodland Hills, UT did a group fast and prayer effort for Tag (and us).  I was shocked and honored to have so many offering a handshake and well-wishing sentiments on Sunday.

I texted quite a few friends as well, reminding them to keep little Tag in their thoughts and prayers this week as we prepare to return to Primary Children's.  I received some great responses.  My friend Tom Stringham replied, "We're on board.  All hail The Tag!"  I loved that one.

So what's it like for a father to bring his first son into a completely foreign surgery where the procedure and possible outcomes (both positive and negative) are completely unknown?  Surreal.  There have been a lot of questions by friends and loved ones as we approach the day.  What do they do? How long does it take? What will Tag be going through? What is the recovery time? How are you feeling? Etc.

I am mostly calm, but my emotions are close to the surface. We are ready for the surgery. Tag's bump has grown with him, making it quite formidable.

That being said, for those of you who have had the chance to meet Tag you know how special this little guy is.  His smile is so contagious that those who meet him always comment on it, like they've never seen anything quite like his demeanor.  Really, how can I be nervous when he is so happy and calm? The tumor is large, but he has courage and heart that exceed the tumor's size. And I'm not just saying that. I keep joking with everyone who asks about the surgery that "Tag told me he's ready" ... but really I'm not joking.  He's so calm and happy and confident, which tells his father that he can handle what's coming.

In our quiet moments, Joann and I pray earnestly for the doctors -- that they will be on top of their game and that the Lord will hold Tag in his arms as he enters this mostly unknown surgery. We certainly hope for a positive outcome, but really we both feel that Tag has a special purpose here and we are the lucky recipients of his presence.

Please stay tuned this week, as I will be keeping everyone posted on what is happening and how we feel about it.  It should be a wild ride!