Our first "long trip" to clinic

So we officially made our first long 5 hour each way drive to clinic. Gracie did really well. I was proud as I always am. Grandpa drove us and Daddy stayed home to work monday even though he doesn't like having to miss appointments. And Grandma and Julie stayed home with Tyson. She took over a two hour nap on the way up and when we got to the hotel she even pullled the suitcase herself:) Cute girl!  We acted on Sunday like we were on a mini trip and just for fun.  So we took her swimming that night and had a little fun in the room that night.  She slept great!  Went down a little after 11 and i woke her the next morning about 7:30 to get ready to go.  She wasnt as thrilled about that...but seriously she was AMAZING at clinic!  I didn't even give her valium because I was worried about giving it on her empty stomach.  She did however get either car sick (which she gets sometimes) or an anticipatory nausea on the way to clinic because she was wretching and a little clear stuff came out but there wasn't much since she hadn't eaten for long.  It was so sad when after she said "I not throw up Mommy" and was very proud of herself for "not throwing" up which she basically did just had nothing to throw up.  Only someone as awesome as her things that way. 

Here she is gearing up for the big day with Grandpa and Grace doing the usual. 

Clinic Stats:

Height: 3' 2.6" (WOW, that's like 2 1/2 inches in 12 weeks)

Weight: 38 lbs 12.5 oz

WBC: 1.5

ANC: 550 ( i was pretty bummed about that one-we just keep playing with a low ANC at 500 they stop chemo) She was so borderline Dr L decided she would play with the protocol and lower her oral chemo dose to 75% I said please don't send us back home to go back in for a fever and low anc so we get admitted like last time.  She blamed it on our new home (of course she wants to see Gracie all the time...who doesn't she's so cute and wonderful!) 

Hemoglobin: 11.7

Platelets: over 200,000

She rocked her port getting accessed.  No crying just sheer bravery.  She watched her movie and played with the animals we had found in the playroom.  She even held onto my very special necklace that says "one day closer" from my amazing friend Ashlie (Thanks Ashlie, you are the best).  It was so sweet when she held onto it...b/c that was one day closer i really wanted to have over.  She just did well.  She did well with sedation and spinal tap and even gave Dr L some good luck stickers on her "blue dress with stars".  Had to write that in every time she goes in for a spinal tap we talk about Dr L's blue dress with stars on it and Gracie decorates it with some stickers the anesthesia nurse gives her.  This time it was 2 tinkerbell and 2 jasmine stickers.  She talked with us about them until the propophol put her out and for I think the 15th time I laid her on the table and walked out of the room with empty arms.  As always I go back in to find her well thank the heavens above for these wonderful Dr's and nurses that take such good care of her.  She was pretty funny for a bit after and wanted to eat and drink and I could tell she could see straight because she was swiping trying to grab the graham crackers poor thing.  She wanted to get up and walk and scared me a few times trying to take off while wobbling.  But what would clinic be without a few good scares?  One of the best things was that while she waited for sedation she got to go see our friends Jack, Hannah and Ashlie!  So lucky they could schedule their appt to be there at the same time!  It made it so much better:)  After we even went to a little park behind the hospital and the kids played!



 

Of course the drive home wasn't quite as fun for Gracie after getting her IV and intrathecal chemo (spinal tap) but she was a trooper and got through it pretty well.  Sadly that night at home was pretty brutal.  she was up most the night so so were we she ended up with croup and wakes up totally hysterical b/c she gets so scared.  I can't decide for sure what scares her most I think she's scared she has a hard time breathing, but also prob scared b/c she knows when she gets "sick" she goes to the hospital and every ER trip has been unbelievably traumatic for her.  Twice she's gone to the hospital with croup and it hasn't  been fun that's for sure.  So the pictures below aren't accurate for the amount of sleep we've been getting but we finally upped her dose of valium at night and started giving it to her before bed and that helped last night.  She slept much better last night.

Gracie and Daddy napping the next  day....she was exhausted and so was he!

Gracie sleeping with mommy the next day...again both exhausted however Mommy is a miserable sleeper while holding anyone.  But I do enjoy so much cuddling and holding my little loves while they sleep.  We are half way through steroids as of this morning and hope the rest of the week flies!  Sadly poor little Tyson boy landed himself a cold today...hmmm I'm pretty sure he picked up Gracie's but she just happens to be a croup girl and he happens to get fevers not croup.  So we'll see how the week pans out!  Hoping we get some sleep tonight! 

 

Thoughts for now..

Tomorrow...September 5 is another milestone!!  For both kiddos!  I have SOOO much I'd like to post but haven't seemed to find time to do it.  I want to post a billion pictures of Tyson he is so darn cute!  He will be 13 months tomorrow!  Sometimes I still can't believe he's 1 and now he's a month past!  He's BUSY!  He climbs, he loves to bother his sister (only he doesn't think he's bothering just wants to be with her all the time and do EVERYTHING she does).  He's taken many steps but still not really walking, I'm ready when he is:)  He fell last week and chipped his tooth!  Front tooth of course so he got his first dental visit.  He's not going to be shown up by his Dr crazy sister he'll do a few things before she does.  He beat her to the dentist and I think I'm finally going to brave it and take her end of the month.  She still makes him laugh harder and more than anyone else and I seriously am blown away by how handsome often!  Of course he does look a lot like his Daddy so I guess I shouldn't be too surprised. 
Tomorrow is also a big day for Gracie she will have 10 months of treatment left.  This week I've been thinking a lot about the last 16 months.  I've thought about it in many different aspects.  The last week or two I've felt very upbeat and honestly in awe many times.  In 10 months we will likely be able to say our family has conquered cancer.  Wow.  I mean I never really knew cancer, I didn't empathize like I should have.  I didn't feel I knew anyone very closely that had cancer.  Then one day my little baby did.  And 16 months later she's less than a year from beating cancer.  She will have battled and won cancer before she turns the ripe age of 4.  Seriously?  I'm sure I thought my tonsillectomy at 4 was a bad deal.  Holy smokes what a blessed, nieve child I was.  Thank heavens for every child that gets the blessing of hanging onto that innocence.  I feel so proud of her.  So honored to be her mother.  She's been super defiant and incredibly difficult I may say lately.  But when I take the time I still find my "perfect moments" with her.  She can be so sweet and loving.  She worries about other kids when they have an owie and always offers a bandaid.  She asks hours later about kids who have gone to the dr.  Today we met a mom with two kids at the park.  She showed them her port several times...gotta show your battle wounds right?  The 2 month old had shots after they left and multiple times during the day she mentioned it. "Baby go to Dr" "Her be ok?"  Hurts that is affects her so much, but I can see how much sympathy and compassion she already has and know she will be that way forever blessing so many others who suffer just as she has.  I read through some emails and different things from April 2011.  The day April 28 strikes a special chord and as a looked back and saw April 27, then April 26 an email of some trivial thing...I had never looked it.  I didn't care...that day my life changed forever.  Then I saw April 24 and realized how different my life was.  She was starting to get sick then...but little did I know it was much more than her first ear infection.  I'm sure I will reflect over the years many times on that period in time.  But for today I want to reflect on it more as the beginning of a journey that will take us to the most beautiful mountain peak where we can look back down and there will be other mountains to climb but we will always remain on the top of that mountain and use the pain it took to get to the top to encourage and help and cheer for every other person that crosses our path as they make a similar journey.
Cancer.  It's just a word right?  Not anymore.  It's a life. 
God has greatly blessed us in saving her precious life.  Other's have not been as fortunate.  Far too many.  So tonight my prayer is of great gratitude for the blessings we have received in this incredible battle.  The miracles.  The angels.  The Hand of God.  And my heart has a piece that will forever be reserved for those parents, siblings, family and friends who's angels have been given wings.  And for those who are still fighting, I pray they will win!  And for those who have won,  I pray all your dreams come true.  Far too many children die of cancer.  I need to do more.  I hope we can do so much more in our lifetime.  Of course I do recognize this is not the only "trial or hard thing".  It will always be dear to my heart because it's been ours just as everyone's trials are close to their heart.  Can't help but think of my dear friend Julie.  You are a true  inspiration.  Every step you take, every breath you breathe tells a story of strength.  I can't help but think of the reunion you will have with your perfect angel boys.  I can't think of anything more joyous!  Or anyone that deserves it more!

Wow!!

Tonight we had one of those moments....where heaven and earth seem to mix.  Where the child that once grew inside of me taught me, inspired me and lifted me to a higher level of faith.  We were having a little lesson about happiness and wanting to work on finding more positive and happy things as a family.  Cancer has a way of bringing people down and overtaking life at times.  We then told Gracie that one day when she was done fighting cancer Mommy and Daddy wanted to take her and our family on a fun trip and described what it could possibly be like.  She said "wow that's lots of things" very happily.  After we talked for a minute she said "Heavenly Father take my cancer from me" and we both just stared at her.  WOW, what faith.  My sweet little girl is a true angel from heaven on this earth with great faith, greater than mine I think.  She knows that Heavenly Father will take her cancer from her.  I believe He will.  I can't wait for that day, but today I'm undeniable grateful for the blessing of being her mother.  For learning from her sweet mouth that YES, Heavenly Father will take her cancer from her...and most certainly our Lord and Savior Jesus Christ has already suffered for her cancer and has been with her and each of us on this journey.  Of course seconds later she was coloring on the couch:)  Out of the mouth of babes.

Another day

I have considered going private...and may still...but seems like to much work at the moment.  My reasoning being that I share so many feelings that are so personal and so real to me...but maybe not to the readers. Another being I don't even know who reads this...may not be many but hard to share such feelings with the unknown at times.  But I just remind myself its really for me and for my family.  And most of all for Gracie, maybe she won't want to know as she gets older.  Maybe she'll want to forget cancer was part of her life...and most the time I hope it will be just a passing thought in our future...but I hope she, and all of us remember the strength we gained and pay it forward to others who are also in need as we have been.  It's been extremely hard for me to face many days knowing we haven't been able to make it on our own.  I guess it's a lesson that is good for me to learn, but continues to be hard for me at the end of every day when we are so thread bare worn out and wondering how we'll face another day.  When the emotions are so heavy we feel like we can't move for the weight on our shoulders.  Daddy and Gracie just got home from getting counts...we'll see what they are.  We've been worrying she's trending down...but to everyone else it's just a number.  To us it's our life.  It's what happens today and tomorrow, it's whether we get to stay home or live another moment in the hospital.  It's hearing our daughter cry and knowing by the little morning happenings that she's going to the hospital or clinic.  She's so smart it hurts sometimes.  Today is another day...counts are taken we'll await the magic "number" that will determine the weeks events.  THANK you to the wonderful people that donate time talent and coloring books and crayons and Belle barbies to bring a smile to my angels face and a smile to mine...is anyone else married to man that puts hand sanitizer all over their daughters new crayon box?? haha welcome to my life!  That's what you get when you combine cancer and a germaphobe!  But a great Daddy to have!  He gives his life every day for her and all of us.

Clinic...

Just the word clinic causes increased anxiety for any cancer mom/dad I'm pretty sure. At least I know it does at this house.  In order to make it to the 10:00 appt which is the latest they have been willing to give us we should leave by 8:20, difficult when the patient rarely awakes before 8:30 and does not like to be bothered for quite some time after waking.  And she knows by now just exactly where she is headed and repeats over and over "I not want to go to hospital", " I not want to be brabe" yes she says brabe, it's pretty cute and "I not want a prize".  So as is no surprise by the description she was not out the door much before 9:00 despite our best efforts to wake her...I'm seeing a challenge when she starts school :) So her counts were high enough to continue chemo tonight...but low enough to have us worried and trying to prevent another repeat of her last week long hospital stay.  She seems to be trending down again and long story short we are thinking the chemo dose is a little too high for her little body or her marrow is slowing down possibly making the chemo dose too high etc.  So the Dr told us to definately have her counts checked in two weeks and gave us a prescription for counts to have them taken any time we feel we want them.  So we'll probably have them taken in a week.  It's always so hard for me to make these decisions b/c she hates getting accessed.  She did well today Todd says, he took her and sounds like it went well but of course we gave her zofran and valium before she left which seems to help her. 
However, we FINALLY got her playing outside with the water table etc and bathing with her shirt off... and its back to the same old game crying, screaming terrified sweet girl who wants to "cober up her owie" and get a new shirt on.  She showered unhappilly with Todd with her shirt on and I had to have a new shirt ready to immediately put on to switch with the soaking wet one.  Hurts to think about...I wonder what her little brain and body is going through to be so terrified around her own parents to not even take her shirt off to shower.  How afraid she must feel.  I pray she will forget most of this but feel she's now old enough to remember.  She has now made herself a "new bed" on the couch where she has a large heavy quilt that she puts over her as well as her "white blanket from grandma".  She didn't even want to go out and play outside tonight we pretty much had to force her out. 
Her ANC was 760 today, and hemoglobin was 11.6 I believe.  Low on exact details since I was home with Tyson and getting our garage fixed finally.  I guess another clinic visit down and closer to the day we dont have to do this anymore and maybe we'll actually feel comfortable taking her on a trip or to go visit family.  Gets hard missing out on so many events and her not seeing any of her cousins and us not seeing many family members, but I don't dare take her to Utah every time we visited she got sick, and a vacation isn't a vacation in a hospital.  Plus crazy old mom has some terribly irrational emotions about going back to utah since the last time was so rough and right before she was diagnosed.  All her cancer symptoms started then and I was so oblivious to what was coming.  Some day...one step at a time.  One day closer...my new motto!  Every day we are one day closer!  Until then I pray every day for heavens help!

Tyson Todd

The moment this sweet boy was born was perfect...it was everything I ever could have imagined it to be!  It was definately a moment where life is so good and you know miracles do still happen.  I didn't want to stop holding him...as a result we both ended up with the nasty meconium all over, I couldn't even do anything but laugh about it as gross as it was because he was so perfect, but I finally gave in and let them take him for a few minutes once we realized so he could get cleaned off.  But truly I didn't want to let him go.  He'd been through a war in the womb with me.  I almost couldn't believe he could come out so healthy and perfect after how difficult the last 3 months had been.  He was born strong though, I know that. 
On his birthday Sunday, my feelings were very tender.  It was a big day and milestone for all of us as a family I think, but I was literally awestruck that we had all survived the year together.  There were frustrations for me that day such as chemo and other cancer things that always alter our ideal plans and what I'd like to do, but I have tried to not focus on that and decided next year I want to take him out for his birthday (ok just part of it, we'll still have a family party) and spend some one on one time with me, maybe Todd will come too, but he so deserves it.  Hopefully I can do it a time or two before his second birthday, but somehow it made me feel better about things. 
This boy is a ball of energy...exhausting every day, but thanks to our challenges I thank God each day for his energy because it tells me he's healthy!  What a blessing!  He's tall and strong (seriously he pulled himself up on the edge of the table yesterday his feet were literally off the ground) and incredibly handsome...yes he takes after his Dad I think they look a lot a like and most everyone else does to.  Lucky he took his name then!  His eyes melt me, every time he looks into my eyes with his sweet brown eyes I fall totally in love with my little boy again.  I can't wait to watch him grown and learn and hopefully soon walk.  He's so close, but a little gun shy...it'll happen soon enough. 
I made sure to find a few of what I call "perfect moments" with him on his birthday!  My favorite was his rolling giggle at bath time his birthday night as we played peek-a-boo.  Just me and Tyson.  Gracie is normally the ONLY one that can make him laugh like that, it's a contagious uncontrollable laugh.  Every time I mentally chalk it up as a "perfect moment" nothing could be more perfect.  But this time was special, it was just us.  I imagine he'll grow up to be tall and handsome just like his father and probably have his father's same need to get out his energy.
Tyson LOVES when his Dad plays with him.  Every night when Dad gets home he cries til he gets to see him, so I recently started throwing him in the shower with Todd after he gets clean and he loves it.  He loves being thrown high in the air and hanging over dad's head.  He is into everything all the time and never wants to stop or be held.  He loves being outside and doing EVERYTHING big sis does to her dismay and great joy.  Every time he left that week in the hospital she would say "I want my brother".  He adores...seriously adores Gracie.  Like I said her silly nonsense makes him giggle uncontrollably and it is perfect, so perfect.  He is an AMAZING eater, he loves to eat and he eats well.  He'll eat just about anything.  Lately he loves blueberries and of course many other things.  He's hungry most the time...not uncommon around this house.  He loves bathtime and loves Gracie's bath time more he just laughs and laughs watching her take a bath.  He's loved swimming the few times we have gone. 
He has worn me out every single day of this year...except the few days I haven't spent with him in which Gracie has (usually cause i'm in the hospital with her and miss him like crazy when I don't get to see him) but I can't think of a day he hasn't made me smile.  I wondered how we would handle another child on top of cancer, but know that heaven above knew that we needed him to handle cancer.  To make Gracie smile, me smile and Todd smile.  To give us something positive to think about, not just dismal cancer.  11 months from Tyson's birthday Gracie will be off treatment.  I know right...almost sounds short.  And Tyson will have helped us get through with a smile on our faces.  Gracie as well, but we needed them both and I'm so thankful he is here with us even when I'm so tired my vision blurs and my head pounds. 
Thank you for being the best son a mother could have.  I truly look forward to every day and every year I get with you.  I hope it is many.  You are a true joy!!!!!   Happy 1st Birthday brother!
Pictures to come...

quick hospital update

so here we are in the hosp our stay began friday at 1230 am my anxiety began when her anc unexpectedly came back low 360 at the new clinic tues and we stopped chemo.  after which i bagged all trips to the store and only let the kids play at home and outside. despite that i knew thursday as boredom took us on a long exploratory walk in our new town as we hit a crowd still not sure what the event was but i immediately turned around for some reason i felt gracies forehead and it felt hotter than normal i was prob 1.5 milrs downhill away from home and had just told a friend how tired i was. hah so here kicks in the crazy adrenaline scared for my daughters life cancer mom in me as i ran uphill  really uphill not mildly home pushing 70 lbs. i stopped a couple times for fussy kids and to check on her always kicking my self for not having a thermometer in my bag. got home 98.6 normal but high for her norm. felt slightly crazy but my intuition told me something was off and my nerves felt it. i kept checking it went up to 99 then 99.6 then half hour after we lay down  about 1230 she wakes up miserable crying and we fight to get a temp of 100.7. BOO our awesome amazing 15 month fever free streak is up its off to the hospital. the night  was MISERY as i try to remember everything to have them do and not do while trying to comfort her. no dont take a rectal temp. yes we want to access her port not try a vein. no no tylenol. why dont we have an antibiotic. insert waiting crying two chest xrays awful catheter for urine sample after a major screaming port access and highly traumatized gracie who just hours b4 we had bathed with her shirt on bc she did not want her port exposed to anyone or anything cant blame her. here comes the swab shoved way up there then another the gag her in the throat. mommy i not want to be brave. im thinking i know honey me neither but i try to smile for her since she always tells me mommy dont cry or dont be sad be happy with a huge smile. we made it through the night she fell asleep after 5 am when we got to our room. her counts had dropped anc 88 definately admitted dr w called it profound neutropenia. next day we hoped it would be up. every morninr since its been 0. they want it showing a trend of increasing prob 200 at least before we leave could be tomorrow fingers crossed or several days to a week just a waiting game. fever is gone thank heavens shes had iv antibiotics every 6 hours since admit. hard to get her to eat and drink. shes getting bored and antsy of course cant leave her room.  cant blame her a bit. she keeps her port covered at all times with her blanket and say no touch my owie and machine is persons not mine cause it keeps beeping and they come fix it but i tell her they are just fixing the machine not touching her. she finds time to smile and laugh and always greets us with a smile when we show up and a hi mom hi dad or hi buddy. love her. love tyson. love todd hes spent the last three nights here with her. my parents and julie came out feiday and have been very helpful glad to know tyson is in good hands but i miss him. he popped his fifth tooth and his sixth is on its way. its almost his birthday. i cant  believe weve all almost survived this year and how big he is. heard from a few members in the ward/church we go to and they sound like they will be a great support its a comfort and look forward to meeting and getting to know them. hoping her anc goes up for those who dont know its the absolute neutrophil counts and neutrophils are the white blood cell that fight bacterial infections. hers are a bit fat 0 meaning not a single one to fight if she gets a bacterial infection. scary and stressful for us to see them so low. i dream of some normalcy for her and all of us going to the store the park playing with friends without worrying so much or wondering what her counts are and if she touched her face each second. shes a trooper hope she can go home soon and resume our cancer "norm" with higher counts and just being home. add her to your prayers if you will we know Heavenly Father hears each prayer and gives angels to watch over these kiddos.