Tyson passed D-day (aka 18 months)

Our sweet little boy is 18 months...well now a little over, I'm forever behind on blogging!  So we of course had to celebrate since the little Miss Gracie spent her 18 month birthday in the hospital getting chemo and steroids right after a cancer diagnosis, so this was a HUGE day for us and one honestly I had been terrified for and dreading for a while.  As it got closer the reality (or idea) that we may actually experience a healthy 18 month old filled me with joy!!  And my wish came true!  So i (with some help from the kids) made him a cake and enjoyed a little celebration that night!! Dad surprised both kids  with the perfect gifts.  A little basketball for Tyson (which Daddy helps him dunk all the time) and a Dora coloring book with stickers for Gracie!  He knows them well!

 

He is such a boy! Wild, busy and FULL of energy!  He is always climbing which for me is easy to appreciate I constantly remind myself I am thrilled he's standing on the table or has climbed into the high chair or is attempting to climb into his crib from the arm on the rocking chair because it means he's HEALTHY!!!  I'd take a healthy climbing baby anyday over the pain of cancer and no walking.  He has been such a blessing to our family and Gracie just loves her brother, and he loves her too!  She always asks when we're going somewhere "and Tyson come too?" even though they fight and don't know how to share perfectly yet (haha) I think the Lord knew what he was doing sending him when he did and we couldn't be more thankful he's here with us healthy and making us smile every day!  He's talking a lot and learning new words every day.  He says juice, milk, drink, hungry, ball, nana (banana), dance (and does a super cute dance bouncing up and down), mom, dad, tries to say gracie and repeats just about everything we say.  He weighed in about 27 lbs (big boy) not sure on his height his well check is in April that's when his next shot is so we opted to wait til then.  He's had a fever the last few days and hopefully will be feeling better soon.  He loves Baby Signing Time and I Am A Child of God (movie)  just like his sister did (we got your money's worth out of those grandma:)) and of course his Daddy!  When he sees Daddy after work he goes RUNNING down the hall yelling "dad dad" into his arms!  He loves anything sweet, literally goes crazy for treats, cookies, ice cream...sugar really any of it.  Much more of a sweet tooth than sister.  He loves books too!  He'll sit down and readwith us for a while.  He is incredibly determined and HAS to be doing anything his sister is doing.  When he's feeling good he eats pretty well.  Loves bananas, strawberries and most fruit and macaroni and cheese.  He also loves babies and other kids.  He walks right up to them and tried to grab their faces or hit their head... a little bit aggressive at times but I don't think he knows it!  Maybe a bit like his Daddy he loves so much in his determination and unintentionlly not gentle:)  We love you Tyson!  So proud to call you our boy!

Skinned his nose at the park and pulled the bar stool on his face the next day!

He can do everything himself!

Loves pointing out his head, nose, eyes and parts of his face!  And hats!

Sweet tooth!

Climbed in by himself!

No gloves for me thanks:)

Standing on a chair

 

Park time!

 

Brrrrr

our heater went out a couple weeks ago for 2 nights and 3 days we took advantage the first night and had a staycation at the hotel down the street!  It was nice to relax together and the kids got to swim twice even if the water was freezing cold:)  Luckily it's up and running again!

The same week my kindle broke, the speaker on my phone wouldn't work so I had to replace it.  I had to return something else we got that was broken and my phone had just recovered from he bad microsd card that had deleted all my files/pictures/apps. 

I was frustrated a bit, but felt kind of like heaven was telling me loud and clear  "all these things shall fail thee, but I will not"

Good lesson to learn even though its hard at times!  Grateful for all the good blessings we have!

Temple/Clinic

 

Clinic was yesterday, it was an extra long day but worth it. We decided to hit the road by 7:30 so Todd could go to the temple its been a while and we both felt it was a good thing, he was anxious leaving me with the 2 kids out there while he was inside and so far from home but things went well.  The kids and I survived as I had assured him we even found out there's a waiting room inside we played in for a little bit.  I could tell the kids were feeling the Spirit when we first got in there and Gracie was telling Tyson to be quiet, not so loud or rough.  Of course they are still kids so after the initial feeling wore off they got wild and we spent the last part running out in the field across the parking lot. 
Gracie did great at clinic and her counts were good!  Yay!!!  Have i mentioned how grateful and relieved we feel that her counts have been so good and finally recovered!  Such a blessing!!

Stats

Height: almost 3' 4"  (101.5 cm)

Weight: almost 40 lbs (above but with clothes on)

WBC:3.3

ANC:1880

HGB:12.7
Platelets:260,00

 

She of course had to have a prize for Tyson again and chose him a little bear with a rose for his valentine:) She is just so sweet!  And chose some little figures of princesses/princes/wizards/dragons etc which she loves.  Once we realized there were several cases of the real flu hospitalized there we were definately more anxious and tried to stay in our room after that.  So far so good. Oh yeah and a little boy wandering around the hall that told the nurse he had a sore throat/headache so he wasn't at school she told him he should go back to his siblings room then.  But we just stayed in our room and wiped hands like crazy and it seems to have worked because it's now been 5 days and we're all still healthy and grateful.  Since her ANC was about 1500 again Dr P upped her dose of chemo I guess her BSA (body surface area) has increased enough to up her to 7.5 pills of 6MP a week from 6.5 and her methotrexate is now at 6 pills a week.  She is a total rockstar at swallowing now and swallows every pill not always totally willingly but I don't blame her a bit. Especially on methotrexate days when it's like here open up i have 6 pills for you...she usually does 2 at a time and only because my gloved hands can't pick up more at a time and at 3 they don't hold them there long without swallowing or spitting them out.  I actually think she could do all 6.  

She got her pentamidine and Tyson of course hasn't been to clinic for a long time other than the quick blood draws in town for counts and was very interested in her iv pole and everything he shouldn't be haha (and TIRED).  But in all honesty he handled the day like a champ for his age.  He's a great little guy at the end Dad took him out to the car and he fell asleep immediately while Gracie and I finished up.  I should have snagged a pic of tyson in the crib in her room haha it kept him contained for a few minutes:)  Next month is another spinal tap/steroid/vincristine(IV chemo) month...after that we'll be down to 1 more! 

 

Friday Gracie got to take another link off the chain!  21 weeks left!!!  And flipped a page in the countdown calendar!!  Farewell January!  And welcome february with so far enough warmth to bundle up and hit the park every day!!  We have loved it especially Gracie...swimming, parks, princesses, dancing and dresses are a few of her VERY favorites for now!  And she is loving puzzles, playing with her little people buses, houses and any figure/doll/accessory/stuffed animal she can get a hold of and make a pile with.  SHe transfers them from her big doll house to the bus to the small doll house into a tote and more:)  Good thing i'm not a crazy perfectionist with toys and order because I think it would destroy her fun and that's pretty important to me so the piles usually stay and transform day after day.  A constant reminder that I'm blessed enough to spend another day with her!  Thank you Father for each blessed day!!  Park play date today and she's been making lots of valentines!  She's turning into a very kind/sharing (often, she is a kid still ;) )and inclusive person.  When I told her Jon was going to play with us at the park tomorrow last night she immediately told her daddy and Landon and Jaylee and named all the friends she has been playing with.  She's constantly such a good example for us as her parents. Again, I feel truly blessed!  Oh and sweet little Gracie's favorite song to sing is the ABC song and the 5 little monkeys, she takes after her quiet/shy/reserved parents as kids and when we ask her to she gets really shy/embarassed and says she can't.  But she sings it all the time when she doesn't know i'm listening!  Keep on fighting sis,  you're going to make it!!  And we're behind you every step of the way and so many others most especially our loving Father in Heaven!

A day in the sun!

Just read a quote that summarized the truth of motherhood.  "you can never be ready, you can only be wiling"  I'm grateful now despite the challenges that although I would have never deemed myself ready for what was ahead almost 4 years ago when I got pregnant with Gracie, I was willing.  And moments like last Friday are the payoff for being willing!  We got two adorable, wonderful children we wouldn't trade for the world and after a long time of really not going anywhere we decided it was time to start to slowly remind ourselves what normal life is and took a day trip to redding.  We had a great time in the beautiful, sunny warm weather! It was at least high 60's so heaven compared to the cold we were used to.  Truly the ideal weather! We were even tempted to stay once we got there but hadn't come prepared for it.  We spent the day outside doing what kids love to do!  First we took them to sundial bridge they loved walking across it and running on the paths then we went down to the Sacramento river and they had a great time throwing rocks into the water.  There was a cute little boy that was nearby most the time and he kept talking about a grumpy troll under the bridge it was pretty funny and Gracie kept asking about the troll.  His grandma suggested kids kingdom a very fun park the kids loved when I asked if she knew of a good park.  So we stopped for a potty break and pizza then headed to the park.  They loved playing around and Gracie while standing on top of a rock in a pretend waterfall area put her hands on the sides of her mouth and yelled "stop being so rough" to some older boys on the other end over and over.  Maybe i should have stopped her but I was far to busy laughing and enjoying the moment.  She then put her hands on her hips and said to us "hmmm, maybe they can't hear me, I better get closer".  She has gotten so funny and makes funny comments like this multiple times every day I'm trying to remember the good ones.  We went for a walk up the hill then had a race Tyson on Todd's shoulders and Gracie on my back down to the car and had a picnic before her 3 hours of no food for chemo.  Then when Dad was ready to go (he probably knew the kids would get tired and grumpy) he was kind enough to stay and enjoy some soccer the kids loved it and I wasn't ready to leave the warmth until the sun started to come down.  It was a wonderful day and in my opinion well worth the 5 hours of driving in one day.  In fact we just might do it again a time or two.  I'll have to add pictures later.  Sure love my little family!

23 weeks

Tyson at the hospital on tuesday..yes that thing in his mouth gives me anxiety.

Gracie after getting counts yuo can se her cotton ball/bandaid on her port if you look closely.

Sweet boy after baths

Just wanted to post that tomorrow will be 23 weeks left of treatment!  We are doing 5.5 pills of methotrexate starting next week instead of 6 (rounding down from her other onc).  This week has been a long week with the freezing cold/snowy ground outside and all the sickness we pretty well stay home and it is wearing since daddy's been gone from 8-7:30 ish each day.  But it's the last day this week!  Welcome 3 day weekend!  The kids have had cute moments and rough moments...sleep hasn't been as good this week with tysons molars coming in and gracie was pretty restless last night so I got lots of kicks since todd was sleeping in the chair with tyson when she woke up first.  Grateful he's soo good to help with the kids especially at night and grateful to have these little darlings even when im going borderling crazy:)

Counts and more

I never mentioned it before but Gracie has less than 6 months of treatment left.  As of last friday she has 24 weeks left...but who's counting?  Well, we are for sure and every friday she gets to take a new link off the chain it's pretty fun! 
This morning i took both kids to the hospital in kfalls for counts.  Gracie declared that she wasn't brave several times (meaning she didn't want to be brave or go to the hospital).  I don't blame her a tiny bit whenever she says that and wish she didn't have to be so brave, but I suppose that is exactly what makes her so brave.  It's doing the hard things we really dont want to do that make us brave, so she's a champ at that by now.  She was of course brave and true to tradition when they brought out the little prize basket she said "I want to choose a prize for Tyson" before she thought of herself.  Love that girl.  They can never turn her down for two prizes probably for a number of reasons but mostly b/c the 1st one isn't for her.  Counts were good which we are very grateful for especially after her last chemo increase. 

WBC: 2.7

ANC: 1242

Hemoglobin:12.8

Platelets: 271,000

Well i was shocked to get the text from her oncologist saying she thought we should increase her to 100% on both chemos.  That is a big jump!  That would bump her to 6 pills of methotrexate a week instead of 5 and 6 whole pills and 1 half pill of 6mp a week instead of 4 whole and 3 half.  that would be the biggest jump i remember.  We did 6 pills tonight or MTX and half pill 6mp and will do whole pills the rest of the week.  Hopefully she does ok with it.  I emailed her other oncologist but haven't heard back, hopefully we will soon just to make sure all are on the same page and she things that big of an increase will be ok.

Well had some cute moments today I didn't want to forget so this is for my memory so I don't forget.

Dear Gracie,

Today while you were going potty you made me sit on the edge of the bathtub as you always do and hold your shirt and you gave me a big hug and said "I love you Mom" and gave me a kiss on both cheeks.  So I asked if I could give you kisses on your cheeks and you said yes than said "you can give me a hug too"  So of course I did and it was a very special moment for Mom because you love your Daddy so much which I'm grateful for but don't always show how much you love me, I always know though.  Thanks sweet girl!

Love, Mom

And another was tonight when todd was going to run and I was going to make bread he asked Gracie do you want to run with Dad (which means sit on the bed and watch Dad run and read or watch a movie) or make bread with Mom.  Gracie said, "I want to do something with Mom" and looked at me and said we're going to make bread.  So grateful for the sweet moments with our wonderful kids.  Tyson was very cute at times today too smiling and laughing.  He is starting to say lots of words he says "nana" for banana when I took him to the store last week he held the bananas the whole time and said "nana" over and over everyone thought he was soo cute.  He says mom, dad, truck, drink, ball, and lots more but my mind is drawing a blank, he tries to copy us all the time now.  He signs milk, more and sometimes all done.  He is a CLIMBER!  He climbed up onto the kitchen counter multiple times today, stands on the chairs, tables, climbs and sits in Gracie's doll house (which is not sturdy enough for his 26 lbs), coffee table, tv...pretty much everything that can be climbed he will climb.  He definately wears us out but we are ever so grateful to be worn out by a healthy, busy body and to have him so healthy.  He got his first molar this last week and is working on a 2nd so he isn't sleeping the best, but it could be much worse so I'm not complaining just documenting. 

I don't know what the future holds, but I believe it holds more joy and happiness than I would have dreamed of a couple years ago.  I'm grateful for each day that my kids and family are healthy and here with me.  I'm grateful that no cancer cells were found today and every day since she has been in remission when they check her blood under a microscope (may sound silly, but it's an amazing and immense blessing each and every time it comes back clean...we know others who haven't been so lucky.  Doesn't mean the future is certain, but I want to be grateful each and every time there is no sign of cancer).  Just feeling thankful tonight, I have been very blessed!!

Oh and PS Todd and I got to go to his work Christmas party and won a TV!!

I planned on posting pictures...but can't get it to work tonight, so maybe next time!





Clinic-New Year's Day

So I'm really behind on blogging but mostly for wonderful reasons!  Like spending a little time in the evening with my husband instead of along blogging while he's with his little girl who just can't get enough of him. 
Our last clinic trip fell on New Year's Day...which worked out for us since Todd had the day off and with the roads to Medford it took Daddy and Gracie a good 2 hours I'd guess each way, but they did make it safely.  I was home with Tyson (who I think enjoyed the day and free reign with all the toys and one on one time with Mom) so I was there for all the details and although Daddy does a great job and if probably more thorough in some categories than me i don't know all of her stats.  She is likely about 40 lbs again though according to our new scale at home.  Her last visit to the ped the day after Christmas for fever/ear infection she was down to 38. 

ANC=1619

Other counts=good:)  I don't remember and can't find the paper

So her anc was good but a little high and they are wanting to be a little more aggressive in increasing her chemo anyways.  So they upped both chemos. Her 6MP went from 3 whole pills and 4 half pills a week to 4 whole pills and 3 half pills a week(74% of her recommended dose, up from 50%).  Her methotrexate went from 4 pills once a week (tuesdays) to 5 pills once a week (up to about 88% I believe of her recommended dose, also up from 50%).  We go back in for counts this coming Tuesday to see if we can increase more or what to do with her dose. She got her monthly IV pentamidine that she has been getting and we are soo grateful for Dr P and her being on top of things and calling the pharmacy down here to reserve all of it for Gracie since it is no longer being made.  Many of the kids up at Doernbecher are having to switch either back to septra or take a daily dose of dapson (i think that's right) which is less effective than the pentamidine.  Another blessing from our Father in Heaven.

One more thought that's been on my mind before I close.  I realized this past week that the first year mark from Gracie's diagnosis I viewed mostly as a day of mourning i did in some ways celebrate.  I was grateful she was still alive and for how far we had come.  But I had heard it mostly called a "crapiversary" which seemed terribly fitting and still does in many ways.  But then my dear friend Ashlie taught me a lesson and another mother who I haven't met yet but have gained much strength from.  And as I lay in bed a couple nights ago I couldn't sleep because my mind was filled with the beauty of celebrating.  "CELEBRATING LIFE"!  Why is there no holiday to celebrate life I thought?  Birthdays I suppose are for that very reason but I guess I've never looked at them too much for that,  so i decided we could have our own family holiday.  A yearly tradition where every year somewhere between April 26 (likely the worst day of our lives thus far, the day she entered the hospital with a questionable diagnoses of leukemia and was poked and miserable all night) to April 28 (the day she was originally diagnosed) we have a party whether big or small to celebrate her life and every life.  Each of us can be so grateful for the life we have been given whether we have fought and survived cancer to teach us the beauty of life and moments and the blessing of another day or we have never had to fight cancer or anything life threatening or lost a loved one or something life altering we can be grateful for the life we have had and th day in which we live. 

I stole this quote from the same mother who has inspired me by her courage and strength and positivity/faith in the midst of great trial. 

I'm trying to live my life this way. It is the truth, it's good to plan for tomorrow and learn from yesterday...but lets leave the living for TODAY!

So here comes my proposition...more of a dream I have really. I want all of our friends and family to celebrate with us on April 28 (or around then), but we don't currently live by sooo many of our family and friends! So....
PLEASE CELEBRATE LIFE WITH US ANYWAYS!!
THROW YOUR OWN PARTY, BIG OR SMALL! FAMILY OR FRIENDS!!! OR EVEN JUST HUSBAND AND WIFE...but CELEBRATE!
And after you celebrate I would love with all my heart if you could send me a letter, an email, some pictures or anything to document your celebration. I want to put together something or maybe just make a post about all the celebrations and show Gracie what her courage and bravery fighting cancer has taught all of us. It's not to mourn what we don't have because her sadness and frown never lasts long...she is the one that so often reminds me to smile and laugh because it's our choice to make and when tears come to my eyes or she can tell I'm sad each time she tenderly says "don't be sad mom, be happy". So be happy with us and CELEBRATE LIFE!
Hope today has been a day worth celebrating for all of you!
HAPPY NEW YEAR!! 2013 may be the best year yet for us! And I hope it is for you too!