This week-happy reminders admist suffering

These pictures are such treasures to me today!  Look how happy she is.  I treasured every second of walking to the park this day hand in hand with Gracie while we pushed our sleepy Tyson in the stroller.  And so did she.  She LOVES outside and the park...at least as long as the medicine doesn't overtake her body turning her into someone other than our Gracie girl.  This week has been quite a week.  No words could ever do justice.  We are two worn out, completely emotionally spent parents.  We were just saying I don't think anyone that doesn't do these steroids with their own young kids can get how hard they are.  By raise of hands how many of you have had a Dr tell you your child has steroid psychosis?  Maybe a few of you cancer mom's out there.  It is completely heartbreaking...but of course not as heartbreaking as watching her in the middle of her roid rage psychosis where Todd is literally holding her in a straight jacket hold just to keep her from hurting herself.  Can't count the number of times that's happened this week.  There have been a few times where we're literally praying out loud and I'm crying just hoping somehow she can calm down.  The nurses suggested tylenol or benadryl...haha fat chance that would ever do anything.  We've been giving valium around the clock and adding oxycodone to the mix when necessary.  The Dr last night said if she gets to bad and we can't handle her anymore we can bring her in to the ER and they'll give her IV valium.  That thought of that is almost ridiculous...in a fit of rage if we even tried to put her in the car let alone for a 45 min drive she would totally LOSE it.  Then once we got to the hospital she would be completely hysterical and probably throwing up as she's almost done several times b/c she's so mad we're giving her medicine.  She's anxious anytime I'm in the kitchen doing dishes or any noise that sounds like crushing her medicine and starts panicking and saying "no more medicine, no medicine, I don't like it" and such while she works herself up.  Needless to say I actually have anxiety about doing the dishes and cleaning for fear she will lose it.  We have to whisper when it's diaper change time to get both of us ready and Tyson of course if on his own then as he seems to be often when we both have to try to keep her under control.  She freaks about diaper changes and has had one shower (straight jacket hold with Todd) and one super short not very good bath with Tyson tonight.  Otherwise TOTALLY refuses and so we do sponge baths.  Why because she'll flail her body so wildly she will definately get hurt...with the older age comes greater ability to express the anger she feels with steroids.  This is hands down the quickest onset I have ever seen.  It seemed to start immediately.  Eating gives us both HIGH high anxiety b/c nothing is ever right no matter how hard we try to do exactly as she asks.  Everything seems to break....then it turns into a total meltdown of crying, screaming "broken, broken" over and over and "fix it"...but she's never ever ever satisified with the fixing or even getting a new one...and the crabbiness continues b/c she's hungry but can't eat b/c it's so upsetting.  You know it's bad when you can't even remember how many meds you've had to give and it's 10 pm and your still trying to plan out how to give the daily dose of chemo that requires no food for 3 hours and the steroids cause hunger.  I do know she's had over 8 meds today possibly over 10 but I seriously have lost track and dont even want to think through it.  Tonight we had used up our last mac and cheese early this week when she requested it and then ate a little and didn't want it anymore and out of nowhere she demanded it and once she wanted it there was no persuading her of anything else even noodles with cheese.  So Todd said he' go get some from the store she firmly refused and said "daddy, no go to store" so I said I would go and same story so I took a very long trip to the garage (aka safeway) to get some easy mac which she ate a few bites of and then got mad and didn't want it anymore.  Todd got all dressed up to go to priest hood and I thought it would be a good break for him which  he needs he's been here most the week and shes' glued to his hip day and night.  He's mostly tried to study while layign or sitting with her watching her portable DVD player(lots of Barney) or the computer.  Of course she was asleep when he was getting ready then woke up crazy mad and never calmed down much and Tyson woke up hungry and she needed Daddy.  Yes I've been pushed off the bed and caused her to be angry just by being present many times.  Hurts but I just remind myself its the drug not her. 

Conference was very uplifting the little bit I heard today and hope we get the chance to rewatch all of it.  Poor Todd was glued to Gracie as usual and got to hear very little.  He's the official caretaker of Gracie and I'm the official caretaker of Tyson and errand girl for all needs.  I'm sure I'll never be as strong as I am now running around getting everything for them while carrying 22 lb Tyson and occasionally holding 36 I'm sure more than that currently from steroids, Gracie.  Everyone tells you how much you will love your kids before they are born...no one ever tells you how much you will hurt for them.  Now I know first hand. 

Todd had an interview in Salem this week...I actually made it most the day alone with both kids.  He was so scared to leave us alone...poor guy.  I don't think he was nervous at all for the interview just to leave us here.  Crazy, crazy time of life.  Can't wait to post on here in another year and a half and tell you all about our first month of no meds...and other incredibly exciting things!!! 

Gracie certainly deserves better days and I long to see them.  Hoping the steroids wear off soon.

Tyson boy has been my little ray of sunshine often this week when I needed it.  He's such a little sweetie (or rather big, handsome sweetie).  So grateful he's part of our family. He's moving around a LOT and super strong but still seems a little too top heavy to sit up well on his own and can turn aroudn in a circle and roll all over but no crawling yet.  He's been saying "dada" a lot and is a smiley happy boy for the most part.  Poor kid hope he's not too neglected from Gracie's special needs with cancer.  I found a sticker on the roof of his mouth last night when changing his pajamas.  Where was his mother when that happened?  So grateful Gracie is part of our family too of course, just wish she wasn't suffering so much. 

4th month of maintenance

Off to another long week...cancer comes but cancer never seems to really go.  Gracie had clinic yesterday and although we're glad to have another spinal tap/sedation over with the during and aftermath as usual haven't been too fun.  She was mostly miserable last night and this morning.  When they were ready for sedation we started walking in and for the first time she was walking she and I were following the nurse and Dr then she suddenly realized where we were going.  Yep 2 1/2 is definately old enough to be onto the hospital and what comes next.  She turned around half way down the hall and headed the other direction in a very pouty fashion.  Broke my heart right in half then I had to go pick her 35 lb 11 oz body up and carry her in  She buried her face in my chest and started rubbing her eyes as if she could feel the effects of the sedation already.  She was mostly very sad to be in there but true to Gracie form gave her elmo and dora stickers to Dr. L on her pretty blue "dress" with stars that she puts on before the LP.  We started steroids last night and she is just definately not herself since clinic yesterday.  Her eyes have dark circles under ( although I imagine many people would say she looks great....to me she doesn't, she's not my Gracie...she's chemo/steroid Gracie I can't wait til we stop these drugs and they don't take my girl from me anymore).  She was totally restless last night and I went and laid with her at midnight as she was still awake and at 12:40 I came out and switched with Todd for the night as she was just kicking and moving and no where near sleeping. 
We're trying our best to stay optomistic and just keep going but it seems almost minute by minute we sometimes have to redirect our minds.  Of course a year of very little sleep doesn't help, nor does the stress of the job hunt and all that entails.  However on the bright side after this week of steroids I think we only have 5 more spinal tap/sedation/steroid/Vinc weeks through treatment.  I know I shouldn't complain b/c the boys have a whole extra year... So for today I'm going to be thankful for that.  One thing I have learned is it will never, never, never get easy to watch my baby suffer or undergo sedation.  Every single time I have to try to put a lock on my heart to shield it from emotion and even then some still leaks in. 
Her counts were ok to keep chemo as is however her ANC is on the low end and only high enough because she's on study.  I always feel more comfortable when it's above 1000 for some reason it helps me have a little less anxiety when she is but it was 700 yesterday.  Guess the chemo's doing it's job. 

Clinic Stats

WBC: 2.2

ANC: 700

HGB: 12.7

Platelets: 272,000

Another "on the bright side"  is her hair is getting longer and she's looking like a  beautiful beautiful little girl instead of a big beautiful baby:)  Either way she's incredibly beautiful but she does look a little more grown up.  As well as acting more grown up her vocabulary is definately increasing proof by her statement last night as we started our med battle "I don't like it".  Yes she does not like the steroid we bribed her this morning with some My Little Pony fruit snacks.  Thanks heavens we don't do this every month.

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!