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.
Sunday, October 21, 2012
Monday, October 8, 2012
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!
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!
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