What's life about?

What is life all about?  This year the Lord won't let me go very long without asking myself this question.  Before I even seem to get somewhat comfortable with anything a wake up call comes screaming in every direction it seems.  Sunday night was one of those.  My heart feels broken every since.  Sunday night around 8 pm the doorbell rang as we were in our nightly mess of trying to get both kids in bed (or down for a million short naps all night long...)  Wait...the doorbell?  We are always terribly curious who is at the door when we aren't expecting anyone it's pretty rare in our continued seeming isolation.  The man and woman asked if we knew the Olsen's somewhat excitedly we both said yeah we're renting from them ( I couldn't help but be excited to talk about them...I just love that family).  Then came the bomb.  They suddenly realized we didn't know what had happened.  So they told us....my dear friend Julie was alone.  Sheldon was missing and Jace was found...drowned.  My heart fell into my feet maybe even lower.  How can that be...How can the sweet Jace that Gracie and I used to swim with every week before they moved for rotations be gone.  Every time I saw him I couldn't believe how handsome, cute and fun he was.  He was just a few months older than Gracie.  Julie was always taking him for fun adventures...we joined on a few with the swimming and went to the childrens museum, had their pictures taken together one day.  Played in their backyard and he slept at our house while they packed to move out of the house we now live in.  It's so unexpected and so tragic, so heartbreaking.  I know we have the gospel and thank the Lord they are sealed together for eternity and will be rejoined after this life FOREVER. But my heart just hurts to think how long she will be missing them in this life.  How quickly life can change.  Julie will forever be one of those women I admire in every single way!  I can't think of a SINGLE thing that she isn't.  She's kind, loving, faith-filled, outgoing, beautiful, and was hands down the best Mom Jace could have EVER even imagined and best wife around.  I believe for the rest of my life in my moments of difficulty I will think of her and draw strength.  I just couldn't not remember this as a life changing experience for our family.   
For anyone interested there is a blog started where you can donate to help her with funeral costs and anything else she needs at this extremely difficult and time for her.  It's http://jaceandsheldon.blogspot.com/ .

My heart just aches for her.  My only comfort is the gospel of Jesus Christ and the knowledge we have that they will be together forever in the eternities and that our Savior Jesus Christ has suffered all things and has fully felt the depths of the pain she is experiencing.  And knowing that Julie is a woman that knows that.  We love you Julie, Jace and Sheldon and always will.  Thanks for the beautiful times we shared together.  What a blessing to have known Jace and Sheldon and to share a friendship with Julie. 

7 months/16 months

Yesterday was the magical day of the month for our home!  You got it the 5th!  Our SWEET little Tyson is now 7 months old...somewhat mind boggling even though some days have seemed to last forever the overall  7 months has gone quickly.  He has been a great napper the last few months but yesterday and today he's decided to switch things up!  I'm pretty sure he's teething.  He's been having numerous dirty diapers daily and always includes one during the middle of the night...since he's up half the night anyway why not right?  Last night he was up seems every hour or two but I wasn't too fantastic at checking the clock so who knows for sure.  I'm hoping his teeth pop soon...but the good things I've learned through all of the hoopla of life is that every phase comes to an end!  I don't remember worryign much about putting Gracie in her crib and wondering if she'll be safe...Tyson on the other hand I worry like crazy.  He's all over the place and STRONG!  I will wrap him tight as can be (he loves to be swaddled) and he'll roll over and get his legs caught between the slats or end up in some awkward position right next to the wood slats...this afternoon he was wrapped all crazy his face right next to the crib slats chewing on the crib.  He gets his arms stuck in between them all the time.  He has the cutest little giggle and Gracie brings it out more than anyone on Sunday he could not even begin to contain himself with his delightful giggle and squeals as Gracie entertained him while she was in the bath.  It was one of those "perfect moments" we get every once in a while in life! 

Well onto Gracie she officially has 16 months of treatment left!!  WOOHOO!  One more month down!

Clinic and a 2nd ER trip

So for once I'm going to be quick in detail about an event. the Monday after our ER trip for Gracie's concussion she was difficult to arouse and long story short we weren't get response from onc's b/c of the holiday and must have had lots of calls so as she started vomiting again after her deep sleep and only waking to say "tired"  a panic stricken Dad called 911 and they went by ambulance to the ER and I followed only to wait for hours and come home with nothing but a nasty port access saying her counts WBC and ANC were high...ANC was over 4000 super rare for her and we all attribute it to the stress and vomiting.  Kept her on zofran and oxycodone off and on for a few days and now we seem to be back to "normal" whatever that means.

This last Tuesday was clinic and she made her Mom and Dad very proud even though he wasn't there.  I got some ideas from other cancer moms I tried, and  we went a little early and on the way I explained everything that was going to happen.  We waited til we arrived to put the numbing cream on her port and even though she was NOT thrilled to go back when they called her back she sat on the chair by herself for the VERY FIRST time to get her blood pressure. She weighed herself 3 times and insisted on her height twice and of course putting the thermometer back in after her temp:)  I had told her on the drive if she was SOO brave at clinic she could choose a NEW balloon-we got her one for Valentine's day and it was a real prize in her mind.  As we started the access I feared things would never improve as she kicked screamed, cried and I had to lay her on the table instead of holding her on my lap b/c of her fighting.  She was screaming Daddy...yes even though he wasn't there so we used Daddy as a prize along with the balloon...I told her "if you are brave we will tell how Daddy how brave you are" and pulled out the big guns of the flexing G says guh (not sure how to write the sound a G makes) from the Letter Factory since they flex together at home and make the G sounds and her name starts with G....many more such incentives were given in desperation!  But...it actually worked.  Sometimes in the heat of the battle the tears stopped for a few seconds off and on and she would hold still and just look at me.  She did indeed get to see Daddy right after and tell him how brave she was since he happened to be getting out of a mtg in the same hall about the time we left.  The whole way home until she fell asleep I heard Dad..brave over and over.  She did in fact get a balloon from Dad that night although it was very hard to be patient so long!  Well deserved in my mind.  I might as well admit I most definately got teary eyed with how proud I was of her on the drive home. 
Her counts were perfect...

Clinic stats

ANC: 1400

Hemoglobin:n 12.7

Platelets: over 400,000

Weight: said 15.8 kg but I think she was wearing heavier clothing that day

Now hopefully we're really home free for the next 3 1/2 weeks with no hospital/clinic visits but boredom isn't a commodity we enjoy here other than the boredom of seeing the same walls in our home all the time which is outweighed by the other option of the hospital walls so we're grateful to see these walls!  

Glad to be home again...

I should be folding my giant stack of laundry I've been washing since last night...but at least it's clean right?  And I have another load in the washer/Tyson's sleeping so technically I'm multi-tasking right?  But...

This little angel gave us ANOTHER scare...it must be in her nature I'm waiting to find out if it's always going to be her or if Tyson is going to join in on the fun soon.  She fell yesterday when we were out playing/walking/running at Pacific on a ramp and I guess it was a little too wet (around 11:30 am).  I walked around the corner and found a little relaxation type walkway...odd dont' you think as soon as I started walking the pathway and trying to relax for a few min (somethng I'm terrible at now...surprise surprise) Todd somes around the corner holding a SCREAMING Gracie...she seemed to be in shock.  He turned for a second and missed her fall but she must have slid under the side railing and off the ramp (only about a 2 ft fall) and with no real bump on her head that we can see ended up with a concussion.  (Thank heavens it was only that)  We finally calmed her down and assessed her and everything seemed ok no broken bones etc she had  a nap then lunch.  And I finally dragged my tired little body off the grocery store (around 4:15 pm).  When I was about half through my shopping I get a call....of course she's now vomiting.  So for the 2nd time I left my cart and ran as fast as I could out of the store and headed home for another delightful trip to the ER.  Thankfully my good friend came to the rescue and was there to watch tyson within about 10 min of getting my call...not far behind me.  Let me tell you our 45 min drive to the ER is not a favorite past time for us and gives us plenty of flashbacks of times past.  Then of course we got stuck in the tunnel as she's crying and vomiting again.  Todd gave her a Priesthood blessing before we left and felt she would be ok once again.  I am so incredibly thankful for the power of the Priesthood.  We finally made it and in the waiting room she was ok for few min then she started crying and such again we knew she was going to throw up again.  We had 4 blankets to catch it with and the filled room seemed to be starting at us.  As we waited a family walked out and the mom covered her nose as she walked by and said "ewww gross it smells like vomit, yuck".  We called the nursing station after waiting a while and they said they'd send the nurse right out of course we waited for another 5-10 min.  Another reason why we HATE weekends at the ER.  She was of course fearful the whole time and hated the blood pressure and everything else.  The poor girl was constantly covering her port and saying hurt hurt.  Makes me so sad she's had so much  trauma and she's only 2.  We added a CT scan to her enormous list of medical things she's had done at the young age of 2 that her Mother, Father and most adults have never had done.  We both sat there watching wishing for once it could be us instead of her.  We were able to get some zofran in her and opted for some nasal Versed prior to the CT scan she's proven over and over what a fighter she is and we knew there was no way she's lay still and didn't want to have to redo it and double the radiation and trauma.  Thank God it came back negative there was no bleeding and it was just a concussion we came home just after 10 pm and were so glad to be home and not staying another night in the hospital.  Todd slept with her just to be safe and said she slept great and woke up and crawled off the bed by hersel and came out to play.  May sound normal to most of you with a 2 year old but that's not our sweet Gracie...she's missed a developmental transition or 2 and almost always wakes up crying and waiting for someone to come hold her and comfort her.  She's been happy and active today.  So glad to have her back to herself again...now add to the list of worries for this Mama dont' let her hit her head again for the next few weeks and try not to make her think to much it might give her a bigger headache:)  But she's the sweetest little girl in the whole world and of course we wouldn't trade all the worry in the world for her.  I spent the last 3 hours laying with Tyson and playing with him want to make sure I don't miss out on him b/c I'm too busy worrying about Gracie.  Of all the worries that have come one thing we have to come to appreciate is the simple joys we experience including singing songs with her and doing This Little Piggy... at the hospital with her last night. 

6 mo appt for Tyson

No surprise our big boy measured big at his 6 month appt yesterday morning.  He just keeps growing!e

Stats

Weight: 20 lbs 13 oz (92%tile)

Height: 29 1/4 inches (off the charts)

Head: I think it was just over 17 and 80th percentile

Cute Tyson dressed up on a Sunday recently.

Lucky I caught him before he rolled again:)

Just doing his crunches at the Dr...I belive we're going to have a very handsome, strong boy on our hands:)  I better be careful and treat him well so we're always on the same team!  I love this little guy more every day and am SOOOO incredibly thankful for his good health (although my cancer Mom crazy mind naturally thinks when he turns 18 months the same thing will happen to him...or something else around that time...sound crazy well it probably is but I just might be a little crazier than I used to be.  YES I know for all of you wondering the chances are extremely low that a sibling would end up with ALL but does it happen sure heard of a mother with 2 boys both with ALL the other day.  And since the odds of Gracie ending up with Leukemia are also extremely low...lets just say statistics don't mean a heck of a lot to this mother its either 100% change or 0% when it my child either they have it or they don't. )

He got 4 shots and the rotavirus to drink.  He got a flu shot just to be safe for Gracie and him.  He's had a low grade fever today and I'm telling myself just to assume it's the vaccines (I'm sure it is) and not be a major worry wort cause Gracie can't get that.  He's been fussy and didn't sleep well last night but hopefully another day and he'll be happier and feeling better.  As we now know...it could be worse. 
He's looking so much older to me these days.  And cute as a button! 

6 months/17 months

Confused?  I think about the 5th of the month often it indicates the month mark for Tyson's first year and the months left for Gracie's treatment.
Tyson is 6 months old today!  What a sweet little boy he is.  We LOVE him so much.  He had his first taste of rice cereal about 2 1/2 weeks ago and loved it when it was mixed with breastmilk.  Liked it ok with formula (who wants to pump every day for cereal) and really seems to like the squash/sweet potatoes he's had.  He no longer wants rice cereal unless it's mixed with the vegetables. 
He is extremely vocal.  Often I have to wait for a time before I can explain something to Todd or even Gracie because he's just looking at us and cooing soo loudly.  It's kind of funny but it seriously is loud.  Cute boy.  He's starting to scooch his feet forward and push his bum in the air.  He rolls all over and seems to have a strong connection with Mom.  He sees me everywhere I go and typically wants to be held. 

Gracie loves to help with EVERYTHING and loves Tyson!

Gracie has 17 months of treatment left today...the countdown continues. 

This is what happens when you work on a sleep schedule that stops at 18 months old and doesn't start again for 9 months...haha jokes on us she doesn't remember EVER having one.  But I'm happy to report things are MONUMENTALLY better than they were for those 9 months.  It's taken me LOTS of work and LOTS of keeping her awake for MANY hours and waking her up etc but she now sleeps typically from 10-4 or even longer without waking up yes we usually lay by her til she falls asleep but we'll take it.  At least she doesnt' think its a nap and wake up 2 hours later for several hours in the middle of the night. 

Gracie found her old car seat and decided to put it next to him and lay in it while I was packing for the park.  Those cute little kids melt my  heart....I love them to pieces.  We spent every sunny day at the park this week, and all enjoyed it!!  Hoping for more park time this week!  Tyson even had his first try at the swing at the park on Saturday and both Tyson and Gracie enjoyed it!

My thought for the week by Elder Maxwell

"Trials and tribulations tend to squeeze the artificiality out of us, leaving the essence of what we really are and clarifying what we really yearn for."

Clinic (month 2 of maintenance)

Yesterday was LONG.  I felt like I'd lived 2 days in a few hours.  We got up and were getting ready...I fed Tyson, showered and got ready, pumped so I could leave him home with Grandma B and was getting the diaper bag ready and saw Todd's lunch on the table ran to give it to him hoping he hadn't pulled out yet and he was heading for the door but said no it's not my lunch the car won't start.  Spend time with that then came back in to finish packing...realized my wallet was missing!  Searched and searched and finally Lesli found in on top of the fridge...ay yay yay how did it get there?  Get settled into the car and head to clinic...get to clinic and there is ONE  I repeat ONE parking spot that I think I'm going to take but a car that passed it decides they really want it so they refuse to move until I back up so that can pull into it.  Head over to the parking garage pass in hand and...NO PARKING.  Seriously none call the oncology clinic and they say sorry wish we could help you but there's nothing we can do.  I drove up and down the 6 level garage probably 2-3 times then finally found one tiny little spot between a large van and an explorer.  I'm thinking is it really only 11:15?  Seems like bedtime to me.  We made it to clinic and back without too much else. 
Gracie SCREAMED and cried while they accessed her port of course she detests it and refused to really even look at the dr and nurses.  We didn't even have to do the dressing b/c it was just a count check since she's on study and didn't get chemo through her port.  But she's getting older and smarter and knows for sure, absolutely 100% she does not like her port bothered or being even so much as looked at by a dr or nurse.  To avoid the awfulness after getting accessed and screaming herself to exhaustion..she fell asleep on mommy's lap while mommy asked the Dr her long list of questions to make sure no tiny detail is missed and everything is done as well as possible to ensure a good, long quality life for her Gracie.  (many of the questions courtesy of Dad who is more knowlegeable than Mom on many things).  The Dr said they've had several fathers of children who were Dr's and that can be difficult for the Dad's but she thinks being a pharmacist would be the worst because they have a much deeper understanding of the drugs than the Dr's, they understand how they work on a deeper level... I agree.  Not that it matters to anyone else reading this...but seriously I think about how much I worry about some of these things and boy I just have to say poor Todd sometimes ignorance is bliss.  There is no ignorance for that poor guy when it comes to the drugs he feels responsible to the very core to make sure nothing is missed that could give her a better life.  It can be extremely stressful but I'm deep down very grateful for his incredible love for his children and desire to give her a great life.

Clinic Stats

Weight: 33 ish lbs

Height 3'

ANC: 1200

Hemoglobin: 10.3

Platelets: around 300,000