Dear Gracie

Well I haven't blogged in a while for many reasons.  It has been a major emotional rollercoaster here and we are just trying to hang on many days.  In many ways we feel so isolated from the outside world and lately I haven't felt like sharing my innermost feelings except with the one who is living and breathing it with me along with our kids.  So this post is for GRACIE!!

Dear Gracie,

I don't know how old you will be when I'm finally brave enough to remind you all you have experienced...i don't know if you will be grateful or want to put it in the past.  I will try my very best to respect whatever your wish will be.  But as your mother I have felt it very important to record this journey as it has been remarkable in good and awful ways.  The last month has been a very tough one for our family.  I'm not sure if you even realize it...I sure hope you don't most the time.  Ever since we have moved to Klamath Falls your counts have given us all a scare over and over.  It started a couple weeks after we moved here and your ANC was 360 when we when to your first appt with Dr W.  She was surprised, we were suprised and of course even more surprised when you ended up in the ER two nights later with a low grade fever and an ANC of 0 for a week.  We survived it and hoped once they recovered it would be the end but it wasn't.  Our next appt at Doernbecher your counts were low again..but borderline at an ANC of 550.  So Dr L decided to cut yoru dose to 75% hoping it would allow us to ride it out.  Two weeks later we were disappointed to find your ANC was 480 (disappointed in the counts not in you,  you are always the bravest most amazing little girl).  So we did counts again the next week and your ANC had dropped to 315.  Our hearts were hurting and we wished so badly we could just take this cancer away from you.  It has been the most heartwrecnching thing we have ever had to bear to watch you suffer from this awful disease that no one should suffer but especially not a child.  You haven't even gotten a chance to live life you but you face without fear and show us the way most the time.  We prayed like crazy and struggled to get by each day as our emotions were so fiercely wanting you to just be healed and since we knew we have to endure the next 9 months of treatment we pleaded with our Father in Heaven to help your counts raise.  The Dr's seemed sure after 2 weeks of no chemo they would be up and at our monthly clinit visit with  Dr W she told me what your dose would be for 50% chemo assuming your counts were up and we waited as they ordered the flu shot for you.  You and I played with the toys and the wagons and cars and really had some fun despite the pit in my stomach.  We walked by the Dr's and nurses and I could tell right away they were still low.  Your ANC was 322.  Dr W called DR L but we waited a while for response as she was in doing a procedure for some other poor child suffering from cancer.  Finally we decided it best to just get ready for home as Julie was home with Tyson and who knows when we would hear back.  As we ate our lunch in the car the new oncologist Dr P came running out and said Dr L wanted to try IV pentamidine instead of the septra you have been taking on weekends for the past almost 18 months every weekend because it can cause increased suppression of the marrow.  We decided to go ahead with it and went back in for you to be reaccessed.  You werent too thrilled when the nurse brought more cream for your port.  I couldn't blame you...I didnt' want you to have to either.  I took you into a corner alone so you weren't scared and you let me put the cream on then we went out to the park to play while the cream worked.  It was a long day for us and a  long day for Dad...and I think Julie and tyson too.  Dad worried about you and I all day as he worked.  We left home at 8:15 and got home just before 7pm.  The pharmacy had some holdups and we waited a while for the med but you were amazing and we watched "Elmosizing" they had at the hospital and you took a nap.  As I lay next to you in the bed and prayed...my heart and body feeling so heavy Heavenly Father reminded me that you are His daughter and He is always aware of you and aware of me as His daughter as well.  I cried silent tears in our pillow and treasured that moment with you holding you close as you slept so peacefully.  You are truly my little angel given to me by the grace of God maybe thats why your name was to be Gracie.  A sweet angel nurse came and talked with me and said the pediatric cancer patients hold a special place in her heart.  If she can't take it away and she knows she can't she wants to make it as good as possible and do everything she can to help you sweet kids.  I was grateful to her for sharing that with me.  And grateful for nurses like her. 
We made it home and celebrated life with an ice cream cake.  The next week we prayed and prayed and put your name in the temple and asked our families to fast with us on Sunday.  Your Dad gave you a Priesthood Blessing and as you sat on the chair in your room on his lap the image is still vivid in my mind.  I couldn't close my eyes as he began the blessing your tender almost 3 year old arms folded and your eyes closed as you recognized the sacredness of what was occuring.  Again I was reminded we have a very choice daughter of God, we have been blessed to care for and call ours.  And that the Priesthood is so very real especially for a child your age to recognize it.  We hoped like we'd never hoped they would be up...but didn't dare hope completely b/c we couldn't bear to be let down.  We planned to celebrate if they were good by going swimming as a family.  We waited for counts after you had your blood draw.  We called and the WBC had doubled to 4.4 but the differential wasn't back.  Hemoglobing was 13.1 the highest I ever remember and platelets had come up again to about 206,000.  We waited and waited for the differential.  Called again....no differential.  Finally they called and we were so thrilled when your ANC was 2156.  We all prayed and thanked Heavenly Father for another little miracle.  We went swimming and you and Tyson had a great time.  Thanks to our wonderful friends Sara and Matt.  We were very grateful to be able to have you taking chemo again after a 3 week hold.  A very ironic feeling. 
We got out that week and enjoyed a playdate with Miles, a night at the park, a couple trips to the store and even  a music play group.  Things that sound terribly ordinary to most kids but are a genuine pleasure for you, and for me to watch you.  At the store you noticed all kinds of things including pointing out a big bag of ice.."look mommy, ice" and you even got to pick out a strawberry cake mix for your 3rd birthday coming up and some birthday blast ice cream. 
Yesterday you woke up with a runny nose...we had promised we would take you to the trains/pumpkin patch and had all been looking forward to it.  So we went, and that night as we expected the croup came on.  Tyson slept poorly and we were all so tired again.  Not that we ever stopped being tired but the full fledged exhaustion was back.  We gave you a little steroid at about 4 am and it seemed to help quite a bit.  you and dad slept til about 9.  Today we went for a walk outside at a park and all enjoyed getting out for a bit. 
We are learning to treasure the little things in life, but of course are still not perfect in this.  We still wish we could make things a little less tough for you.  But we are working very hard to align our will with God's will becaus we know only He knows the beginning from the end and has the power to take this from you.  So we are doing absolutely everything in our power and TRYING with our imperfect selves to leave the burden at His feet.  Someday we dream of taking you places and doing normal things other kids do and many things really.   Our hearts are full of dreams for you and your brother.  You have become our life and we live each day for you two.  We love you sweet Gracie, keep being your brave beautiful self.  Mom and Dad love you and always will. 

Neutropenia

o I know this world probably means nothing to many people...neutropenia!  It meant nothing to me prior to April 26, 2011 but it has meant a lot since.  It has meant a lot since we moved to our lovely new home far from oncologists:)  For some reason sweet Gracie has been battling a low ANC(otherwise called neutropenia) which means her "absolute neutrophil count" is below 500.  Which is what happened when he was in the hospital for a week which I still am meaning to post about.  That was a long hard week and her ANC was 0 day after day after day.   She got home July 26...i only remember b/c it was the day after my birthday.  We were so thrilled to all be at home she danced and played and it was heaven for a few minutes to watch her at home before unpacking and all the other stuff that had to be done.  Of course I feel all those "things" can wait.  But enjoying those precious moments with my daughter who i'm so grateful and lucky to still have by my side cannot.  they will pass and never return. 
Since her first clinic visit at the new hospital, she keeps going low.  Both her oncologists think it is due to to back to back viruses...possible, and we will never know for sure. That's the beauty of it all:)  It's a guessing/waiting game.  Something I'm not sure anyone is good at, nor enjoys.  But I do feel we have tried to handle it the best we could and feel very grateful we have made it through so many days and I don't dare say what I'm thinking next...for fear it will happen.  But 2 mondays ago we had a recheck of her counts and she had been at a 75% dose for the 2 weeks prior because she had been just on the border of stopping chemo.  We thought it would do the trick...but we were pretty suprised when her ANC came back 480.  The rest of her counts looked good which is a huge relief as it means they aren't worried the leukemia is coming back, but probably some other issue is causing the supression such as chemo or viruses.  Of course 500 is the magic number for a chemo hold so they don't get to low as below 500 is considered neutropenia...the beloved word mentioned above.  We waited out the week and of course discussed it a lot and talked to the oncologists about it.  We figured/hoped it would be up but instead after our brave girl (no really she is sooooooooo brave it would blow your  mind....i think it did blow the people in the waiting rooms mind as she sat their calmly waiting for her blood draw saying "their just take a little blood, mommy"  "sometimes I get chemo in my port but their just take a little blood".  Broke my heart a little to hear her saying all these words that most kids wouldn't even understand, but at the same heart swelled with love and how proud I am of her.  She is a true warrior, battling and winning!) got her port accessed and blood drawn and after 4+ hrs of waiting and me making probably 6 or more phone calls we got counts back...  ANC: 315.  Bummer.  Continue chemo hold.  Check in one week...which is tomorrow.  WBC: 2.1,  HGB: 12.1, Platelets: 220,000.  So again everything good but ANC...in some ways phew that the rest were good but still we were bummed and felt weighed down as always with her low anc.  She has now been 4 weeks without entering a stoor/or other building other than our house, the hospital and of course going outside in the open air, but no parks.  We have bought a few fun toys that the kids loved and that has helped a lot.  It is so hard when she asks to go to the store or to church or other things, and I have to say no, maybe another day.    We have fasted and prayed a lot and are really hoping that it will be up tomorrow...but if not we will continue to have as much fun as is  humanly possible in our "isolation".  And keep praying for whatever Heavenly Father's will is and our ability to accept it. 
Luckily,  Aunt julie has been here to help and keep us entertained while we have been stuck home. 
The kids are both currently playing in their new "tidy cottage" haha it's not so tidy anymore but they love it!!!  And they have loved especially Gracie the new bouncy house! 
Saturday was Todd's birthday and we got a little actual absoroption of conference while our crazy kids begged for dad's attention all day as usual.  They both can't get enough of the world's "funnest" Dad.  I know it's most fun Dad...but funnest sounds funner!  We had some pie and ice cream and lots of balloon fun after the priesthood session and of course during priesthood my amazing sister gave birth to twin boys that are so adorable!  I hope I get to see them before they are too old:)  Of course many family members still haven't seen Tyson since we haven't felt it is safe for Gracie to travel to Utah....or really anywhere but where we have had to for moving/clinic. 
October 5 marked a big day for both kids....
Tyson is now 14 months and incredibly cute,, fun and active.  He walks like a champ binky and blankie in tow.  I just have binky and blankie babies.  They both love them!  truly LOVE them.  Sometimes i like them...half the time i hate them...because I spend what feels like half my day washing them and my hands are already raw with several cuts all over them from so much washinghands and they are so dry they crack so it stings every time i wash binkies/wash hands...you get the picture.  But I haven't had the heart to take gracie's away for good b/c they really comfort her at times esp at clinic and she has endured sooo much.  Anyways more important info  he is really starting to talk and saying mama, dada, ball, drink (gook), go, uh-oh and a few more i can't think of right now.  We love his spikey hair and he is starting to cry when daddy goes to work.  Boy it's hard to be married to the world's "funnest" dad.  The kids are always crying for daddy whether he's here or not.  Gracie woke up sooo unhappy this morning after a weekend with  daddy that he was gone.  It's usually all throughout the day I hear "I want Daddy" and now it appears Tyson feels the same way.  He tells me they will like me best when they are older b/c they'll want to talk to Mom, I guess we'll see.  I have a feeling it will stick.  He is just so fun with them.  But I suppose I may be better for a serious conversation/listening ear but he definately has more energy than I do on almost any given day. 
Gracie as of October 5 has a "pregnancy" of treatment left.  No she is certainly not pregnant but has nine months of cancer treatment left.  Think of it?  I know I complained about pregnancy being so long at some point with Gracie especially ( I didnt' really have the ability with Tyson once Gracie was diagnosed I had to pull up my boot straps and show Gracie I was at least a little bit brave, although not as brave as her, anytime I had to do something I didn't want to or felt lousy...I just thought if she can do it I can and her sweet face came to my mind and it really wasn't so bad.)
Our dear Gracie has endured already almost 2 pregnancies of cancer treatment.  Whew, blows my mind a little...but I'm grateful that time is turning and she has made it so far.  As I looked at Tyson this last week my mind could almost not comprehend the reality that we was ahead of us when Gracie was 14 months old.  I was about 2 months pregnant with Tyson and Gracie was only 4 months from being diagnosed...for all we know...i wish i knew more that first cell had already gone awry and was just waiting to wreak crazy havoc in her innocent little body.  I do feel nervous at times that we only have 4 months or so left of healthy Tyson, but have prayed hard that he will stay healthy and we will get the real blessing of experiencing raising a healthy 18 month old, 2 year old and 3 year old.  With any luck he will stay healthy for longer.  We pray so hard that in 9 months all the chemo will have done its job and other than monthly blood draws Gracie will be able to resume being a "normal" child.  That the cancer will be gone. 
Other BIG news!  I decided to take advantage of Gracie being off chemo and our fear of chemo pee on the floor for Tyson...as we don't want to risk even a tiny bit him getting the same best Gracie is fighting.  So last week we set to potty training and I should have expected she would rock it since she is naturally a rock star...but I have learned I suppose to prepare for the worst most the time and then be thrilled when it turns out better.  So I was of course thrilled with how well she did after thinking the whole first day would be accidents.  She had pretty good bladder control and all she needed was for her mommy to put some big girl panties on and put the ball in her court.  I loved that the method I read about was all about giving her control b/c i think there is much power in that and much less frustration for all.  Maybe she was dying for the control, maybe she was ready, maybe both but she did great and is now wearing big girl panties all day...after her first accident at night we decided to hold off and use pull ups for now.  but she woke up dry today...so maybe she'll be night trained before long. 
So grateful for my kids and feel so lucky to have them.  Grateful we are home and for "poison" that is saving her life...and hope with all my heart a better cure comes in time for the children that come after her and for all the other types of cancers and every ailment that causes children to suffer.  I hope to spend much effort in this direction during our lifetime.  Currently our battle seems to be so focused on winning her battle, but i hope we can help in some way many other fight their own battles in the future!  Thanks for all the prayers and support.  We truly are so grateful!

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.

BIG ANNOUNCEMENT!

No I'm not pregnant and thank the high heavens for now:)  Todd passed the NAPLEX and that is big news, but it feels even bigger than I ever thought it would!  I got the letter in the mail today...of course he's at work so I called and told him!  But after I didn't expect the HUGE wave of emotion that came over me.  It's real.  Is it real?  It is real!  He graduated with his PharmD, he passed the Naplex and soon I'm sure he will have passed the law test and be a licensed pharmacist.  They say the harder you work for something the more it means, I don't think we could have worked any harder than we have and I guess I'm feeling that right now.  This last year and a half especially have been bitterly hard, and I thought things would be oh so much easier when we got down here but every day has been a test of my strength as I've tried to keep things under control so he could work and study, study more and go away to take tests as the kids and I sit in this hot, unorganized and dirty house which is now mostly clean:)  I can't believe the obstacles that have been ours from the start of this journey.  Todd has been in school spring, summer, fall, winter since the day I met him. I can hardly make a list of the things that have tested our stamina and endurance, but today the only thing that matters is that we perservered and we suceeded.  I am so incredibly proud of him.  The endless days of studying and frustrating rotations as he worried like crazy about the 3 of us whatever we may be doing whether it was cancer related, pregancy related or just normal every day stuff (imagine that).  He studied and worked at it and even regularly this last 2 weeks held Gracie in one arm as she watched a movie and he studied for hours. 
So proud of him!  So proud of our little family!  Can't wait for him to come home tonight and not study...almost sounds like a dream not reality.  Now if only we can keep the kids from getting injured or something for one day!  Gracie got hit in the lip by the swing last night after his law test and was gushing blood!  Yikes...she still is not loving eating but doing much better today. 
In other news I took the kiddos swimming this week to escape the house/heat and we all enjoyed it even thought it wiped all 3 of us out!  Maybe we'll go again next week! 

We're Here!

Well, we're here!  We've moved, at least our stuff is in boxes all over the place in our new house that I am now trying to clean so I can unpack boxes:)  At least packing and getting out of the other house and unloading the truck is over.  Our new ward was here by 7:45 am and had the truck unloaded in a flash!  Seriously seemed like half hour.  Maybe 45 minutes.  All very friendly and nice.  So I'm sure we'll like it here, but in all honestly I am a little bit homesick tonight (or maybe more than a little) for both Forest Grove and Utah.  I guess I have two homes now...soon to be three.  Right now our new house is a house but soon it will be a home I'm sure and I won't want to leave all the friends I will make here,
The weekend was rough to say the least.  Our kiddos didn't much like all the packing (or rather I should say boredom for them) and cleaning and driving and on and on.  You know whats even better than moving with young kids?  Having to worry about getting the 2 1/2 year old full about an hour before you get to new home because she's already behind on her chemo schedule even though both kids have had it from six plus hours of car(of course including stops).  Sometimes it seems all we're doing is trying to force Gracie to eat so she'll get full so we can not let her eat and force her to eat again 3 hours before bed.  Manageable on a schedule but of course both kids have been way off.  Just over a year and we'll be done with our nightly chemo!  Oh and luck of all luck (I'm sure just my body telling me it's done) I ended up sick last night.  So I'm happily sitting here with a mask to protect my kiddos.  Let's hope they don't get it.  All we need is a trip to the ER with a fever our first week here! 
Anyways hopefully I'll post some pictures in the future of the house as for now it's in no way picture ready!
Here's to a good week! 

Well, I'm WAY behind but before I pack up counts for clinic I'll do a quick recap on clinic which was last Tuesday!  Let me just say Gracie was SERIOUSLY a rockstar.  She was amazing, couldn't have done better.  We gave her zofran before we left and thankfully she didn't throw up this time.  When we got to the hospital and I got ready to put her numbing cream on her port she let me pull up her shirt with no fight and not one tear or crying, she just looked at grandpa and even gave a little smile/laugh.  And of course she was a big girl for her height/weight/blood pressure and temp!  And she got her stickers as usual!  Then she seriously rocked the access I couldn't believe my eyes.  Not a single tear just a big, brave beautiful girl.  My friend whose son is undergoing treatment for leukemia as well (3 years old) told me this quote and I love it because its so true, "many people never meet their heroes, I gave birth to mine".  I mean holy smokes she is 1 million times braver than me.  She literally sat there and watched them poke her with a needle and draw blood after 14 months of tough treatment.  She did great for her back poke, i've lost count and played while she got her Vincristine (chemo) through her port.  I just love that girl.  We started steroids that night and blessing of all blessings she did unbelievably well compared to our last pulse.  No clue why, but I'm grateful, so grateful.  She of course had her moments and the last 2 days we had to use valium a couple times, but she did great.  We were all geared up for an awful, awful time and even thought we were going to give her an antipsychotic (until we tried it the first night and she woke up 2 hours later freaking out like she was on steroids, so we thought and worried about it and in the end we decided to bag it and I'm so glad we did.  Of course on the way home for being so brave Grandpa treated Gracie to a Tinkerbell balloon (they were out of Ariel-silly helium shortage) and an ice cream treat.  Tyson was well cared for by Grandma at home.  Of course he must have felt left out b/c he had some real separation anxiety after Mom got home. 

CLINIC STATS

Weight: 38 lbs 12 oz ( a big jump-enough to raise her chemo dose a little)

Height: 3' 1 1/2"

WBC: 2.9

ANC: 1700

Hemoglobin:  11.9

Platelets: 324,000

I snuck in the first two doses of steroids through some juice gracie loves I'd sneak the pill in the tip of a straw and she would swallow the pill without knowing it...she always figures me out though.  Back to crushing but I sure enjoyed those two doses of no crushing and I was proud of my 2 year old for swallowing a pill!  What am I saying I'm proud of her for everything she does!  She's done with this pulse of steroids and starting to act a little more like herself , however tonight she ate a TON of food so we know the effects are still in force and she's not totally Gracie yet. 

Oh and BIG NEWS!!  Todd finished school officially last Thursday!!  WOOHHOOOOOO!!  He started his job today.  So he is officially working and completed his first day of work!  We move down on Friday.  Off to pack somemore!!

Just a plug for Tyson I'll post some pictures soon I got some SUPER cute ones of him and he is almost 11 months.  WOW!  A big strong active boy.  He always wants to be doing what Gracie is now and finally broke his two top teeth, they were pretty brutal.  UP and down and up and down.  Hope they are down to stay.  He gnawed through the tissue with his bottom two and had a bruise before that.  He is so super cute though and getting around EVERYWHERE.  He may be walking before long.  Love my kids!!  I am one lucky Mom and wife!!

Pain and gratitude

Tonight as Todd and Gracie were out shopping and Tyson was asleep as I worked in the kitchen cooking/cleaning my mind and mostly my heart went out into the realm of close friends/family I have that are currently suffering and enduring much pain and hardship.  I of course thought of a sweet boy who has the same type of leukemia Gracie does and today had the longest/most chemo intensive day we had a clinic in all of her treatment.  He had to fast from 9-3 spending almost all of that time at the hospital.  He’s 3.  He’s amazing, he’s a fighter, a hero.  He’s battling the beast and I pray every day he will win and Gracie too.  I pray for other little cancer cuties fighting the same thing to.  He heart hurts and aches for the kids and their siblings and of course their parents as I know exactly how they feel, or mostly.  I’m sure we  all process it a little different.  I thought of sweet Jace who has passed on.  He would be 3 tomorrow.  He’s amazing and he’s another hero of mine, so is his Mom.  They teach people every day what matters and what doesn’t and how to be strong and have faith and rely on the Lord.  I thought of my best friend growing up, my cousin who has been through many difficult things but recently lost his son he had waited years for after being chosen to adopt and the baby didn’t make it.  We got married within a few months of each other our trials have been very different but maybe similar in some ways.  I was blessed with two children quickly and have watched my baby suffer and feared I might lose her, he has longed for a baby in his arms and my fear is his reality.  I hope they will be blessed with a baby soon.  Please check out their adoption blog here and pass it on to anyone you know considering adoption.  They will make amazing parents and I look forward to the day when I see him tenderly loving his child along with his sweet wife (who will never be seen without a smile on her face, seriously what better trait than that for a mother).  

The list goes on of course, it seems each person has their own trials and many so painful and heart breaking.  But of course soul building, bringing us down to our knees so the Lord can raise us up into when He knows we can become.  As much as it hurts to think of the pain each of these friends and others suffer, I felt a sense of gratitude.  I have been blessed to have such strength to surround me.  To have friends with great courage and strength; faith and hope.  Who suffer and don’t deny God, but turn to him for succor.  They drop to their knees and in moments of desperation and great pain, plead for God’s help, and he gives them strength to take one more step, and sometimes take one more breath. 

And gratitude most of all that we have a Heavenly Father who loves me and all of us.  He listens to every word we pray and answers those prayers in the timing that is best for us, and in a way that will help us most in become what He knows we can become. 

Gracie dancing!

Whew...a catch up!

So it turns out I'm WAY behind on blogging...but I have spent a lot of wonderful time with my kids this week:)  So I guess its' a fair trade!  I'll bag the real catch up b/c with all that's going on I know I'll never catch up before we move, and there's a lot going on before that so here's a quick list of updates!
1. Todd graduated!!!!!!!!!!  Ok well, he walked!!!  And he will graduate in 4 weeks officially!  It's seems totally surreal and unbelievable!  I've spent my entire life in school!  He has worked so hard and earned every piece of this degree.  Introducing our new (almost...but only b/c he put his family first) pharmacist!

We are very proud of you Todd!  I am still hoping to get a family picture with both kids...Tyson was asleep during each picture session or not present, but both kids have been with us through this process and I really want to document it:)  However I'm thinking of doing some pictur es when my parents are here (the week he's actually done)then we can get one with them to.  Of course our families and friends have been a major support this year particularly in allowing us to complete this major accomplishment.  So thank you to both sets of parents and everyone else who has helped us. 

2.Tyson turned 9 months old (yes, now almost 10)-he's turning into a big handsome boy right before me very eyes and I have loved this last week with him.  Yes, he's busy and into EVERYTHING:)  But this past week has been a great one with the kids and I've loved watching learn so much this week.  On monday he said "mama" for the first time  I remember when I went in to go get him after a nap.  When Todd went in the next morning he said "dada" he doesn't always get it right but it's very cute when he does.  He's also saying "nana" often.  He has gotten up on his knees with his crawling instead of army crawling as he has been and is now pulling himself up, on everything:) Yes, he's had many falls and bonks.  I have to watch him close b/c he loves cords and putting his hands in the electric heat vents (yikes) we try to barracade him into an area and he typically uses the barracades and stands up on them and often pulls them onto himself (like the racecar track).  One of his favorite toys now is Gracie's doll house which he loves to pull himself up on and stand up.  She of course runs over and says "no, tyson, no buddy" hmm...I wonder where she's heard that?  Or "no bubba", yes I admit I say that I'm not sure why it just comes out.  He has slept through the night (last night from 8 pm to 7:15 am) and he is just incredibly handsome and totally fascinated by everything around him.  He absolutely loves Gracie's "I Am a Child of God" movie and I read him an animal book before each nap and bedtime and help him feel the fuzzy fur, he always lets out a little laugh with the first page, a kitten.  At his 9 month appt he was 31 inches tall (off the charts, no surprise there and 22 lbs 13 oz.  And best of all...HEALTHY!!   I am so, so grateful he's healthy and happy.  In fact most the time when he climbs up on things I can hardly feel tired or frustrated that I have to move him again or stop him from getting hurt b/c I'm so grateful he's healthy and growing and developing well, it is such an incredible blessing. 

First bike ride...both both kids I think!

Climbing Gracie's doll house.

3. For the very first time in OVER a year our whole family has a shedule/routine. I know right who knew a person could be so grateful for a schedule. It involves me running nonstop from morning to night but feels SO good. Seriously it's amazing. The whole deal from wake up, to breakfast, nap, laundry, lunch, cleaning, play time, more naps, snacks, chemo, dinner, bedtime:) Yes we eat dinner now at 8 or 8:30 pm but I LOVE IT!! It means no more pre bed time snack and family dinner...minus Tyson who is in bed minutes before we eat. So even though we love him so much, we can actually kind of sit and eat and talk. Last night he slept from 8 pm to 7:15 am. Amazing and a big deal for him and all of us. And we even have some exercise scheduled in...plus we're sleeping more, or at least I am:)

4. Clinic and Gracie passed her mark of only having 14 months left of treatment.  Now we are close to 13.  She is growing up big time...and look at her hair!  We love it...and as always she got more comments on clinic, they all love her cute hair and everything else about her.  She is talking up a storm, knows her alphabet and counts from 1-12 then skips to 18:)  She can sing several songs.  I think today she sang almost all of I am a Child of God, and knows most of the Itsy Bitsy Spider-both favorites of hers.  She has really liked Little Miss Muffet lately and her comments make us laugh EVERY day.  She is funny.  Today at church (we are enjoying taking the kids to church and goign together) she pointed to a member of the bishopric and said "prophet"  then she told Todd pointing to the Bishop on the stand "that mans the Bishop".  She wanted to go up on the stand so she convinced Todd to take her up and bear his testimony, it was cute.  She loves doing "cheers" with any cup/glass and when we pulled out our glasses with sparkling cider she insisted on having a  special glass, with milk.  We really enjoy talking with her at dinner.  She knows she is two and her first and last name.  She talks of different family members and friends often and still loves and needs to cuddle regularly.  In the morning, after nap and as soon as Dad gets home.  She takes her medicine like a champ.  Holds it herself sucks it out of the syringe then says "yay" and starts clapping as we all follow her cue and join in!  She loves to be outside and reading books especially "Bernstein Bears".  Every night when we read scriptures we pull out her child version of the Book of Mormon and try to read a new story, but to no avail she each night repeats "the brass plates" until we again read the story of the brass plates after laughing at how funny it is she wants to hear it again and how persistent in not being willing to hear another one.  When she wants something explained to her in a pictures she points to it and says "eh-eh-eh-eh" over and over until we tell her what it is.  We passed her 2 1/2 year mark in April and she is definately a sponge and repeats things we say every day. 
She was a ROCKSTAR at clinic!  The poor girl threw up...again right when we pulled into the parking stall the whole way I was glancing back in the mirror cause she looked green to me, I guess my mother's instincts were right this time, but I thought we were safe when we got there and after distracting the whole way when I was telling my friend where to park, she was so kind to come with us and hold Tyson and entertain him so I could focuse on Gracie she threw up.  But, she was the best yet with her port access.  I was in total awe.  She started a big fit initially then totally calmed down, I loved the nurse.  We've never had her before and she gave her pictures of her dog and kids, such a great idea so I asked Gracie questions about the pictures the whole time and she would answer them.  Yes she was answering questions (of course binky in mouth) while she was having her port touched and needle poked in it.  Usually it's a huge ordeal and she is totally angry the whole time...what can I say I'm proud of her, AGAIN!  She's amazing!  Her counts were right on track to stay on her same chemo dose in the range they want it.  Lower than last time, but it's normal to fluctuate.

Clinic Stats

WBC: 2.1 ( ithink)

Hemoglobin: 11.7

ANC: 900

Platelets: over 200,000

Weight 36 lbs 9 oz

Height 3' 1"

Now for some pictures:)



Her fun little bug catcher that she uses to "catch flowers", she loves picking flowers and playing at ther park.  Oh and climbing stairs.

Loves her sunglasses and her eyes seem sensitive to the sun, she often asks me for them and says it's bright.

Wish we had a piano, this girl LOVES pianos and music and dancing.  We went to the LDS temple visitors center and really enjoyed it.  They even let her play the piano:)

She found her swimsuit bottoms and came out wearing them on her top, I thought it was so funny!

She wants to wear the funniest combos sometimes, oh and always has to have a clean pair of socks after her bath at night and in the morning when she gets dressed.

Outside in the sprinklers!

I love these because they remind of her she loves them and her happy with them make me think wishes and dreams can come true.

Our pretty princess on graduation day!

• 5.  We went to a carnival sponsored by the CCA and it was such a fabulous event.  I was a little worried when we got there she turned and hid in me and then Tyson started crying.  But by the end she was the happiest I'd seen her in maybe ever.  She danced her little heart out, seriously with no regard for anyone else around her.  I got a few videos but never have luck posting videos so we'll see if we get them up.  It was a night of joy for me watching her dance and be happy and live life like a normal healthy child:)
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Month 5 of Maintenance- clinic

Well of course clinic was this week...and due to my 1 year post it got put off.  We went to see Dr. L on Tuesday and sadly little Gracie threw up on the way.  Seems to be a new thing she does with more frequency than she or we like.  The poor girl, as we were driving on the freeway and it was just Gracie and I and our last event of pulling over was AWFUL I used my calmest, sweetest most comforting voice and told her it was ok and she didnt' have to throw up anymore and many other such attempts to avoid pulling over before our arrival.  She was amazing and made it without throwing up more than once. 
Her counts were PERFECT!  I'm so thankful.  I think she's never going to just endure the port access without at least a little fight, but I can't blame her I'm 25 and still hate it!  And i have had nowhere near the trauma she has.  Maybe it's more of a good thing than bad, hopefully she'll always stand up for herself and what's important to her and not just get walked all over :)  Either way she's amazing, beautiful and as always I can't express what an honor it is to be her mother. 

Clinic Stats

WBC: 2400

ANC: 1200

Hemoglobin:12.1

Platelets: 274,000

Weight: 36 lbs (a few oz)

Height: 3 ft 1 and 1/8 inches according to the nurse :)  As they said she's starting to grow in height in maintenance even though she only grew maybe an inch or less through all of front line treatment.

Of  course I had my nice list of questions for the Dr to answer, which she did.  It's our new routine... a month is a long time to go without seeing the Dr for us, but I personally love it.  Even though we love our oncologist. 





A year ago...

It was a Tuesday evening one year ago...April 26 but a Tuesday so close enough that I received the very worst phone call of my life.  It was then I first heard the word leukemia used in relation to ANY child.  But of course that child was MY child.  My only child.  My 18 month old pure, innocent girl.  My Gracie girl, my life.  Someone asked me at the park on Monday in a random of all conversations if I cried when she was diagnosed.  The honest to goodness truth is no.  Every thing I would have thought I would have done in the situation I didn't do.  I didn't cry when the Dr told me on the phone.  I didn't cry that night in the hospital while they were drawing her blood for hours.  I didn't cry April 28, 2011 at 5:00 pm when the Dr and Resident came to give us the official diagnoses.  Yes, she did have leukemia.  I have thought at times...I wonder if people thought I was crazy.  I wonder if the Dr's and nurses are thinking why in the world is this pregnant woman not crying?  Don't pregnant women cry over everything?  Well surely a cancer diagnoses for a 1 year old warrants a few tears.  I didn't cry because I was numb.  In a sense.  It was utter shock.  I couldn't think about the reality.  I just lived on adrenaline, faith and the prayers of the hundreds of people praying for us.  My heart felt like it was bleeding, but I didn't cry.  I knew I had to be strong.  I had a half developed baby inside of me and an 18 month old fighting for her life.  I think I often felt I didn't have time to cry.  I never went into any other room that first week except a couple times to the fridge...which only lasted a day or two until the isolation excluded that to.  I didn't meet any other kids with cancer.  No other cancer moms.  I didn't cry on anyone's shoulder, not even my husbands.  There was no time, no thought for it.  No conscious thought for what I needed or wanted, only how I could help protect and care for these 2 sweet angels so dependant on me.  I remember feeling too young, I was 24.  But hard to complain, if anyone was too young it was Gracie.  18 months is far too young for cancer.  I grieve the loss of so much of her innocence and childhood.  I wish so often when she cries in pain that I could say "it's ok, mommy won't let anything or anyone hurt you".  Each time I try to say those words I can't, a piercing feeling comes into my heart and I think of the numerous times I've held her as her big beautiful eyes saw nurses, dr's, needles, and more coming at her.  Heard her scream Mommy, and Daddy as we held her in attempt to  save her life.  But she doesn't know that.  I wonder what her little mind thinks during and after these things.  I wonder how she can trust us at all.  Yet she does.  She still has some innocence and so many childlike traits.  Her smile and laughter turn my world rightside up.  We've weathered as a family in one year more than I ever expected to in 10.  I've learned SO much and it seems there must be so much more to learn, because our journey's not even half way over.
People refer to this as a marathon.  My most visual of our marathon is that we thought it was only a half marathon and feeling extremely well trained or ready to win the race.  We knew we had to run fast, there was NO choice.  So we sprinted.  And Todd and I each grabbed a child running as fast as we could.  We ran and ran and ran, sweating and feeling worn out each mile.  But we kept going, we had to.  The kids got heavier and harder to carry, but we had to finish together.  Along the way we had friends and family at every mile mark cheering us on and helping us make it one more mile.  We hit the 13th mile and thought thing would get easier...we were tired and hadn't expected the extra 13 miles.  We still have a long way to go to get there and at times we stop running, but we don't stop.  Sometimes we walk, and sometimes we crawl on our hands and knees.  But we will hit that finish line one of these days...and when we do we will arrive victorious even if our arms and legs are covered with scratches, bumps and bruises even some bleeding wounds.  And when we arrive our muscles with be sore, but STRONG.  Stronger than they've ever been. 
I wish I could thank each fan along the sidelines who has helped us keep going and get through the rough moments when we needed a boost yet again.  For each family member and friend.  We have been incredibly blessed.  The Lord is mindful of us even in our darkest hours.  Our children are our life, and lots of work.  But we love them more than our own lives and they are teaching us what no one else could.  I feel worn out, and often wish our marathon was over.  But, there will be bright spots along the way where we will appreciate the view we have obtained.  As I'm typing this sweet Gracie walked in and said "Mommy, sad",  yes I do cry.  Then she walked over and got a tissue and wiped my tears.  Is it worth it, the answer is an astonishing "YES"!  She is worth every tear, every pang in my broken heart...and of course so is our sweet Tyson.  Tomorrow ( or make that tonight...hard to distinguish between the two we still get very little sleep) we will take one more step in our marathon and every day after that.  And when I fall on my knees again to crawl I know my Heavenly Father will send someone to reach down their hand and help drag me to my feet one more time. 
A year has never been longer, or more difficult.  But I suppose that means we've never had greater reason to rejoice in another year because we have survived.  Which to me is my most notable accomplishment in my life so far.  And it won't be long before our sweet Daddy graduates and we start our first REAL job together...our family of four!  I'm grateful for the "health" we all have at this time.  And pray every day for even greater health in the future.  Thank you, thank you to all those who have helped us in any way on our journey and to those who continue to help and will help us through the remainder of it.  And most of all I'm grateful to a loving Heavenly Father who has given me peace that none other could at times I needed it most.