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!