Monday, January 21, 2013
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!
Thursday, January 17, 2013
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:)Tuesday, January 15, 2013
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.
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!
Wednesday, January 9, 2013
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.
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!
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!
Sunday, October 21, 2012
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.
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.
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!
Thursday, September 13, 2012
Our first "long trip" to clinic
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!
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