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!
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!
Tuesday, September 4, 2012
Thoughts for now..
Tomorrow...September 5 is another milestone!! For both kiddos! I have SOOO much I'd like to post but haven't seemed to find time to do it. I want to post a billion pictures of Tyson he is so darn cute! He will be 13 months tomorrow! Sometimes I still can't believe he's 1 and now he's a month past! He's BUSY! He climbs, he loves to bother his sister (only he doesn't think he's bothering just wants to be with her all the time and do EVERYTHING she does). He's taken many steps but still not really walking, I'm ready when he is:) He fell last week and chipped his tooth! Front tooth of course so he got his first dental visit. He's not going to be shown up by his Dr crazy sister he'll do a few things before she does. He beat her to the dentist and I think I'm finally going to brave it and take her end of the month. She still makes him laugh harder and more than anyone else and I seriously am blown away by how handsome often! Of course he does look a lot like his Daddy so I guess I shouldn't be too surprised.
Tomorrow is also a big day for Gracie she will have 10 months of treatment left. This week I've been thinking a lot about the last 16 months. I've thought about it in many different aspects. The last week or two I've felt very upbeat and honestly in awe many times. In 10 months we will likely be able to say our family has conquered cancer. Wow. I mean I never really knew cancer, I didn't empathize like I should have. I didn't feel I knew anyone very closely that had cancer. Then one day my little baby did. And 16 months later she's less than a year from beating cancer. She will have battled and won cancer before she turns the ripe age of 4. Seriously? I'm sure I thought my tonsillectomy at 4 was a bad deal. Holy smokes what a blessed, nieve child I was. Thank heavens for every child that gets the blessing of hanging onto that innocence. I feel so proud of her. So honored to be her mother. She's been super defiant and incredibly difficult I may say lately. But when I take the time I still find my "perfect moments" with her. She can be so sweet and loving. She worries about other kids when they have an owie and always offers a bandaid. She asks hours later about kids who have gone to the dr. Today we met a mom with two kids at the park. She showed them her port several times...gotta show your battle wounds right? The 2 month old had shots after they left and multiple times during the day she mentioned it. "Baby go to Dr" "Her be ok?" Hurts that is affects her so much, but I can see how much sympathy and compassion she already has and know she will be that way forever blessing so many others who suffer just as she has. I read through some emails and different things from April 2011. The day April 28 strikes a special chord and as a looked back and saw April 27, then April 26 an email of some trivial thing...I had never looked it. I didn't care...that day my life changed forever. Then I saw April 24 and realized how different my life was. She was starting to get sick then...but little did I know it was much more than her first ear infection. I'm sure I will reflect over the years many times on that period in time. But for today I want to reflect on it more as the beginning of a journey that will take us to the most beautiful mountain peak where we can look back down and there will be other mountains to climb but we will always remain on the top of that mountain and use the pain it took to get to the top to encourage and help and cheer for every other person that crosses our path as they make a similar journey.
Cancer. It's just a word right? Not anymore. It's a life.
God has greatly blessed us in saving her precious life. Other's have not been as fortunate. Far too many. So tonight my prayer is of great gratitude for the blessings we have received in this incredible battle. The miracles. The angels. The Hand of God. And my heart has a piece that will forever be reserved for those parents, siblings, family and friends who's angels have been given wings. And for those who are still fighting, I pray they will win! And for those who have won, I pray all your dreams come true. Far too many children die of cancer. I need to do more. I hope we can do so much more in our lifetime. Of course I do recognize this is not the only "trial or hard thing". It will always be dear to my heart because it's been ours just as everyone's trials are close to their heart. Can't help but think of my dear friend Julie. You are a true inspiration. Every step you take, every breath you breathe tells a story of strength. I can't help but think of the reunion you will have with your perfect angel boys. I can't think of anything more joyous! Or anyone that deserves it more!
Tomorrow is also a big day for Gracie she will have 10 months of treatment left. This week I've been thinking a lot about the last 16 months. I've thought about it in many different aspects. The last week or two I've felt very upbeat and honestly in awe many times. In 10 months we will likely be able to say our family has conquered cancer. Wow. I mean I never really knew cancer, I didn't empathize like I should have. I didn't feel I knew anyone very closely that had cancer. Then one day my little baby did. And 16 months later she's less than a year from beating cancer. She will have battled and won cancer before she turns the ripe age of 4. Seriously? I'm sure I thought my tonsillectomy at 4 was a bad deal. Holy smokes what a blessed, nieve child I was. Thank heavens for every child that gets the blessing of hanging onto that innocence. I feel so proud of her. So honored to be her mother. She's been super defiant and incredibly difficult I may say lately. But when I take the time I still find my "perfect moments" with her. She can be so sweet and loving. She worries about other kids when they have an owie and always offers a bandaid. She asks hours later about kids who have gone to the dr. Today we met a mom with two kids at the park. She showed them her port several times...gotta show your battle wounds right? The 2 month old had shots after they left and multiple times during the day she mentioned it. "Baby go to Dr" "Her be ok?" Hurts that is affects her so much, but I can see how much sympathy and compassion she already has and know she will be that way forever blessing so many others who suffer just as she has. I read through some emails and different things from April 2011. The day April 28 strikes a special chord and as a looked back and saw April 27, then April 26 an email of some trivial thing...I had never looked it. I didn't care...that day my life changed forever. Then I saw April 24 and realized how different my life was. She was starting to get sick then...but little did I know it was much more than her first ear infection. I'm sure I will reflect over the years many times on that period in time. But for today I want to reflect on it more as the beginning of a journey that will take us to the most beautiful mountain peak where we can look back down and there will be other mountains to climb but we will always remain on the top of that mountain and use the pain it took to get to the top to encourage and help and cheer for every other person that crosses our path as they make a similar journey.
Cancer. It's just a word right? Not anymore. It's a life.
God has greatly blessed us in saving her precious life. Other's have not been as fortunate. Far too many. So tonight my prayer is of great gratitude for the blessings we have received in this incredible battle. The miracles. The angels. The Hand of God. And my heart has a piece that will forever be reserved for those parents, siblings, family and friends who's angels have been given wings. And for those who are still fighting, I pray they will win! And for those who have won, I pray all your dreams come true. Far too many children die of cancer. I need to do more. I hope we can do so much more in our lifetime. Of course I do recognize this is not the only "trial or hard thing". It will always be dear to my heart because it's been ours just as everyone's trials are close to their heart. Can't help but think of my dear friend Julie. You are a true inspiration. Every step you take, every breath you breathe tells a story of strength. I can't help but think of the reunion you will have with your perfect angel boys. I can't think of anything more joyous! Or anyone that deserves it more!
Sunday, August 19, 2012
Wow!!
Tonight we had one of those moments....where heaven and earth seem to mix. Where the child that once grew inside of me taught me, inspired me and lifted me to a higher level of faith. We were having a little lesson about happiness and wanting to work on finding more positive and happy things as a family. Cancer has a way of bringing people down and overtaking life at times. We then told Gracie that one day when she was done fighting cancer Mommy and Daddy wanted to take her and our family on a fun trip and described what it could possibly be like. She said "wow that's lots of things" very happily. After we talked for a minute she said "Heavenly Father take my cancer from me" and we both just stared at her. WOW, what faith. My sweet little girl is a true angel from heaven on this earth with great faith, greater than mine I think. She knows that Heavenly Father will take her cancer from her. I believe He will. I can't wait for that day, but today I'm undeniable grateful for the blessing of being her mother. For learning from her sweet mouth that YES, Heavenly Father will take her cancer from her...and most certainly our Lord and Savior Jesus Christ has already suffered for her cancer and has been with her and each of us on this journey. Of course seconds later she was coloring on the couch:) Out of the mouth of babes.
Saturday, August 18, 2012
Another day
I have considered going private...and may still...but seems like to much work at the moment. My reasoning being that I share so many feelings that are so personal and so real to me...but maybe not to the readers. Another being I don't even know who reads this...may not be many but hard to share such feelings with the unknown at times. But I just remind myself its really for me and for my family. And most of all for Gracie, maybe she won't want to know as she gets older. Maybe she'll want to forget cancer was part of her life...and most the time I hope it will be just a passing thought in our future...but I hope she, and all of us remember the strength we gained and pay it forward to others who are also in need as we have been. It's been extremely hard for me to face many days knowing we haven't been able to make it on our own. I guess it's a lesson that is good for me to learn, but continues to be hard for me at the end of every day when we are so thread bare worn out and wondering how we'll face another day. When the emotions are so heavy we feel like we can't move for the weight on our shoulders. Daddy and Gracie just got home from getting counts...we'll see what they are. We've been worrying she's trending down...but to everyone else it's just a number. To us it's our life. It's what happens today and tomorrow, it's whether we get to stay home or live another moment in the hospital. It's hearing our daughter cry and knowing by the little morning happenings that she's going to the hospital or clinic. She's so smart it hurts sometimes. Today is another day...counts are taken we'll await the magic "number" that will determine the weeks events. THANK you to the wonderful people that donate time talent and coloring books and crayons and Belle barbies to bring a smile to my angels face and a smile to mine...is anyone else married to man that puts hand sanitizer all over their daughters new crayon box?? haha welcome to my life! That's what you get when you combine cancer and a germaphobe! But a great Daddy to have! He gives his life every day for her and all of us.
Tuesday, August 14, 2012
Clinic...
Just the word clinic causes increased anxiety for any cancer mom/dad I'm pretty sure. At least I know it does at this house. In order to make it to the 10:00 appt which is the latest they have been willing to give us we should leave by 8:20, difficult when the patient rarely awakes before 8:30 and does not like to be bothered for quite some time after waking. And she knows by now just exactly where she is headed and repeats over and over "I not want to go to hospital", " I not want to be brabe" yes she says brabe, it's pretty cute and "I not want a prize". So as is no surprise by the description she was not out the door much before 9:00 despite our best efforts to wake her...I'm seeing a challenge when she starts school :) So her counts were high enough to continue chemo tonight...but low enough to have us worried and trying to prevent another repeat of her last week long hospital stay. She seems to be trending down again and long story short we are thinking the chemo dose is a little too high for her little body or her marrow is slowing down possibly making the chemo dose too high etc. So the Dr told us to definately have her counts checked in two weeks and gave us a prescription for counts to have them taken any time we feel we want them. So we'll probably have them taken in a week. It's always so hard for me to make these decisions b/c she hates getting accessed. She did well today Todd says, he took her and sounds like it went well but of course we gave her zofran and valium before she left which seems to help her.
However, we FINALLY got her playing outside with the water table etc and bathing with her shirt off... and its back to the same old game crying, screaming terrified sweet girl who wants to "cober up her owie" and get a new shirt on. She showered unhappilly with Todd with her shirt on and I had to have a new shirt ready to immediately put on to switch with the soaking wet one. Hurts to think about...I wonder what her little brain and body is going through to be so terrified around her own parents to not even take her shirt off to shower. How afraid she must feel. I pray she will forget most of this but feel she's now old enough to remember. She has now made herself a "new bed" on the couch where she has a large heavy quilt that she puts over her as well as her "white blanket from grandma". She didn't even want to go out and play outside tonight we pretty much had to force her out.
Her ANC was 760 today, and hemoglobin was 11.6 I believe. Low on exact details since I was home with Tyson and getting our garage fixed finally. I guess another clinic visit down and closer to the day we dont have to do this anymore and maybe we'll actually feel comfortable taking her on a trip or to go visit family. Gets hard missing out on so many events and her not seeing any of her cousins and us not seeing many family members, but I don't dare take her to Utah every time we visited she got sick, and a vacation isn't a vacation in a hospital. Plus crazy old mom has some terribly irrational emotions about going back to utah since the last time was so rough and right before she was diagnosed. All her cancer symptoms started then and I was so oblivious to what was coming. Some day...one step at a time. One day closer...my new motto! Every day we are one day closer! Until then I pray every day for heavens help!
However, we FINALLY got her playing outside with the water table etc and bathing with her shirt off... and its back to the same old game crying, screaming terrified sweet girl who wants to "cober up her owie" and get a new shirt on. She showered unhappilly with Todd with her shirt on and I had to have a new shirt ready to immediately put on to switch with the soaking wet one. Hurts to think about...I wonder what her little brain and body is going through to be so terrified around her own parents to not even take her shirt off to shower. How afraid she must feel. I pray she will forget most of this but feel she's now old enough to remember. She has now made herself a "new bed" on the couch where she has a large heavy quilt that she puts over her as well as her "white blanket from grandma". She didn't even want to go out and play outside tonight we pretty much had to force her out.
Her ANC was 760 today, and hemoglobin was 11.6 I believe. Low on exact details since I was home with Tyson and getting our garage fixed finally. I guess another clinic visit down and closer to the day we dont have to do this anymore and maybe we'll actually feel comfortable taking her on a trip or to go visit family. Gets hard missing out on so many events and her not seeing any of her cousins and us not seeing many family members, but I don't dare take her to Utah every time we visited she got sick, and a vacation isn't a vacation in a hospital. Plus crazy old mom has some terribly irrational emotions about going back to utah since the last time was so rough and right before she was diagnosed. All her cancer symptoms started then and I was so oblivious to what was coming. Some day...one step at a time. One day closer...my new motto! Every day we are one day closer! Until then I pray every day for heavens help!
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