Clinic-2nd to last spinal tap

Pictures on the drive up...and my delicious omelet before we took off, thanks love!

Gracie is amazing!!  She has had I don't know how many spinal taps and part of me has liked not knowing somehow it makes the end seem closer...and every time I see those needle pokes in her back my heart sinks and I cringe.  So knowing she only has ONE more left feels so good!  Only thing that could be better is to have NO more left!  And in 12 weeks we will be singing that song!!!!  She did great at clinic as usual she is our brave little hero!  Her favorite part about going to the hospital she told me is going to a hotel and seeing Dr L.  She made Dr L a special picture to give her.  And the second Dr L walked in she was bursting for her to have it.  Dr L of course loved it and confirmed today that it is hanging on her wall in her office and makes her smile, which in turn made Gracie smile, then me:) isn't it great to see people happy!

 Tyson is at a super busy age and had his first trip with us,  he's a great kid however busy he may be we both think he handled the trip well.  We did have one moment I can now laugh at...wasn't so funny at the time when we then had to shower me and the kids again and were running late for clinic didn't want to miss her sedation time and Dad hadn't gotten any breakfast and...you get the picture but our little stinker pooped in the big bath tub while we were letting Gracie have one last swim in it.  But truly he did well and of course kept us very busy:) 

The kids loved swimming as usual and there's just something so fun about a hotel especially as a kid....and maybe even more especially as a child who has spent so much time isolated.  Thank heavens for a king since all 4 of us ended up in it by morning but we did get sleep thankfully:)
Gracie got her intrathecal methotrexate (chemo in her spinal fluid), IV vincristine (chemo), and IV pentamidine (antibiotic she gets every 4 weeks).  They always take a sample of their spinal fluid when giving the intrathecal chemo and I asked her Dr the results today and she said the pathology report showed no blasts which means no leukemia cells.  No matter how many times you ask this question and get a good response it never, ever, truly ever gets old!  She has never had a single blast in her spinal fluid so far which is great news yet because of their ability to hide in the spinal fluid they do ALL these spinal taps anyways.  Seems a little crazy that she's had somewhere around 15+ spinal taps and never had a single cancer cell in there found.  But we just pray whatever they are doing will work and cure her for life.  Her counts were great too!

Clinic Stats

Weight:42 lbs

Height: 3' 4.5 "

WBC:2.6

ANC: 1200

platelets: 301,000

Hemoglobin: 12.0

 

She was slightly increased again due to her body size.  She now takes 1.5 pills of 6mp twice a week and 1 whole pill 5 days.  Still 6 pills of methotrexate a week.  Today Dr L said for the first time in  8 months she recommends her going in for a check in 4 weeks instead of 1-2.  Wow, nice to hear.  Her body is tolerating the chemo well!  We hope it continues and she can sail through this last 18 (almost down to 17) weeks!

Our chain...its getting smaller!

Sweet worn out kids on the way home.  They were both wiped out. 

We are glad another trip/treatment day is over and can't wait until we come home from her very last spinal tap/chemo day and breathe a big huge sigh of relief! 

 



Counts and pics!

Counts were good this week.  Dad took Gracie to the infusion clinic and we were very happy that at her higher dose of chemo her counts had remained good.  They were in the perfect range!  We are sure hoping they stay that way as we wade throught the last few months of treatment! 
As of last friday we have 19 weeks left!  We are in the teens!!!!!  And in 2 days we'll be down to 18 weeks!  Oh I love letting her take a link off the chain each Friday!  Feels like we truly are getting closer!

ANC:1259

Other counts all great but I don't remember them off the top of my head.

Gracie HAD to type on the puter so below is her contribution to this blog:)
nmnnnnn/..///.,, bjnhhhhhhhhjjjiuuuujjjlkkoo9uiiijjhhhhhhhjjhhjjkiiiuhhhgghhyuuuuuiiuyuyuyyyyyyyyyyyyyyyymmjnnhjjjjjiii
';,mnnbvvvvgggggyhgnnnnnnhhujjmmkmmyyhbvvfrjjhhgkkkuyuyuu99oo9000--;p.jhggyyyuiiiuuuuuuuuuuuuuuuuuuuuyyyyymnnmmm,,kjjjmnbhp0iiiiiiiiiiiiiiiujhuuuuuuyyyyy  tvfgggggggggggggggggggfffffffffffffffff    f;;pp00iuuuyyyyu88899998yyytty7nhgggnnmmmjlllllllnnnnnnnnnnnnnnnnn

Mom and Gracie time at the park while Dad's home with Tyson

 

Putting up her valentine hearts from grandma

She HAD to make a cake one night so we made a marshmallow/chex one I was too tired for the real deal and it was too late!

 

Taking off the 20 week link off the chain!

Her first Valentine flower from her friend Jon!

Riding bikes with Tyson

A fashionista that loves to swim!

Crafts and tutus

 

She loves playing with her little people/figurines, my old aladdin toys and putting them all in the bus or a house and moving them around:)  And was on a kick where she HAD to wear a dress everyday! Which is fine by me but convincing her a sweater/leggins and or socks were necessary was another story!

Celebrating making it through another appt:)  Can you tell we like to celebrate yet??

"summer day" inside while tyson napped

Can't believe how big and grown up she is getting hard to believe how much has changed while she's been on treatment.  She is determined as well and full of faith!  Keep fighting brave girl!  I have a feeling you're going to WIN big and before you know it you'll be 3 AND CANCER FREE!!!!!  Still mind boggling to me that a little girl can have fought cancer and won by the age of 3!  the words still dont blend for me, but she's our littler hero!  If anyone can do it she can!

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!