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!