Four months today, my Natalee past from this life, oh how hard this is to comprehend. Usually when I post a blog I wait for the time when I am more in control of my emotions. These past five days have been hard, I have missed Natalee so much it is all consuming. I will be sharing what is more raw and tender. It feels like I take two steps forward and then I will fall backwards. Sometimes the ground is so slippery that I slide backwards. There are days when I feel OK and it surprises me that I am fine, and then the next day I can be hit down so hard that I can't even hardly breathe. That is where I am at right now. It is still hard to believe that she is not here, and there will alway be a void in my life without her. Nothing can take away the aching loss of a child. Nothing.
Has life gotten better? Oh yes. There was a time when my whole day was consumed with anguish and tears. No actually weeks not days. I felt like I was unable to turn off the faucet to my emotions. Sometime when you get all wrapped up emotionally it is so consumming that it seems impossible to get out. You can't breathe; think; feel; or do anything. I was in this for 2 solid months and it is miserably horrible. I may slip in that mode but I am able to climb out. To let go so I am not consumed. Now I will cry for an hour or two than I am OK, and then I will fall apart again several times in the day. It usually takes about 5 days or so, but at least I can turn off the faucet, and that, I am grateful for.
There is one part of my walk through this horrible life that I want to share.. I am not comfortable to share this but I have several people that have told me that they have someone close to them that has lost a child and they have told them to read Natalee's blog. For anyone that has grieved so greatly that you can't ever imagine a way out from this hell, I am so, so sorry that you have to go through this. There is no way out of it, you have to go through it. Some will take months,others my take years. There is no patented answer except that you have to want to get out or you will not. When I was in this state of feeling so consumed that I felt I could not breathe, the hardest part was I couldn't feel. How could a God of love, take my beautiful daughter from me. The miserable struggle is when you don't feel that God loves you; it is such an empty, dark and hopeless feeling. I couldn't feel any sweetness of the spirit, I felt so alone, even though I had love ones around me. It is in that depth that is so scary, that all I can say to you is, don't give up. When all hope is lost and you don't care to even try, you've got to want to get better. I no longer feel that way, I feel like I am back home in my beliefs, my faith, and it feels good.
Some of the things that have helped me:
My Family: I am so grateful that my daughters stayed home this summer. Many days all we could do was watch a movie and just cuddle up under a blanket. My husband Kent has been and anchor, we all talked, cried, and laughed together. The most amazing part is going up to Nats grave site. We have literally sat up there for hours and just talked, it is so serene and sacred. If you don't have a family adopt one.
My Friends: just doing something to get you out of the house. My house is my refuge and my chamber. There were many times I didn't want to go, but I did. There were days I just couldn't. I am so grateful for all the hugs, the letters, the listening ear and not trying to give advice. I have gained so much wisdom in your words and kindness.
My Scriptures: Even when I felt so empty, I kept reading my scriptures and I kept praying. For a long time it was empty, but I didn't quit. For me Scriptures have alway been a passion so it was an escape. Every moring at 7: I still read to Natalee. I don't know if I would have had the strength to start something new, or stay focused, so for others this may not work. The main objective is to eventually feel the spirit. There are other ways like listening to uplifting music or speeches.
My journaling: I have never kept a journal faithfully till Nat was diagnosed with Cancer. It has been therapy for me. Once in a while a write a letter to my daughter to share how I feel. Sometime I ask her questions about what she is doing, what it is like there, my sorrows, my happy feelings, my good memories of her. This has been powerful for me.
Lastly remembering: When I could not see, feel, when I could not feel Gods love or his Spirit, when every memory of my daughter brought me to cry, making it hard to think about her. I had to dig deep and remembered the times when I felt His sweet spirit, the times in my life when I had peace that touched my heart and soul. I remember reading His words and knowing without a doubt that it was true. I remember so many times in my life when the Holy Spirit touched my spirit that gave me peace and understanding; a hope; a faith; a knowledge of truth. It was remembering these past feelings, when I could not feel that helped me want to see and feel again.
Knowing Natalee, would not be happy with me being in such a pathetic state. And she would not hesitate to tell me. She is still my hero, my strength, my example. Just remembering her strength, her courage, her will, her grace in how she handled her chemo and cancer has kept me going forward. I am still amazed by her.
I feel like I am off the boat and I was getting pretty sea sick, so I am glad to be on solid ground. Truthfully I have not missed a day that I have not cried over Natalee. But that is my normal life now. If you see me I will look normal, please don't be afraid to come up and talk or get a hug from me. I am OK. I am just trying to live with a new life, and a new normal.
Thursday, October 7, 2010
Monday, August 30, 2010
Daydawn is breaking
Grief has kept me from writing this long time. I have attempted many times but words cannot justify what I have been going through.
Since I have used the boat as my parable, I will continue the same. After Natalee passed away, my grief became so great I felt swallowed up in a ragging storm at sea. Just fighting the swells of emotions I had no time to relax or laugh or feel peace. I felt like I was put in the hull of the boat, where the trap door was opened to let me in then shut closed. No light was able to penetrate to give warmth or to see. Since I could not see, doubt, fear, and a loss of hope was playing on my mind and my heart. Reading JOB (Old Testament) after loosing your child has totally changed my perspective of the book. He felt the same feelings that I have been going through. My sorrows escalted at Natalee's 2 month mark, to where I felt so consumed with grief. Job lost his 10 children all in one day; uncomprehendable! In chapter 6 he said " my grief was heavier than the sand of the sea... for the arrows of the Almighty are within me, the poison drinketh up my spirit: the terrors of God do set themselves in array against me. 7:4 When I lie down..the light be gone and I am full of tossing's to and fro..the day spend without hope..Later he expressed a doubt in the resurrection and questioned that there was life after the body was laid in the ground.
The beauty and hope in Job, is he did find his way out. I have alway told myself I will not allow this to ruin my life. It is not as easy as I thought. Actually since I had a full year to prepare for Natalee's passing I thought it would lessen the blows, plus the last 7 weeks were so painful and difficult for her it was a sweet release. But all that didnt matter when she is so greatly missed. I felt robbed from my little girl. It is hard to understand and all reason and logic was on the other side of that door. Now almost 3 months I feel like the trap door has been opened and I can feel the suns warmth and it feels good. I have felt a peace these past two days that I was craving for. Will it stay I dont know but it gives me an understanding that my life will not alway be in the storm.
"For tis sorrow that works our pondering, and grief that teaches us to feel" (auther unknown)
As I sat at Natalee's grave site on Sunday, I felt a renewed hope in Christ and of the Resurrection. Because he was able to break the bands of death, He has given that as a gift to us all. When I was 6 years old, I lost a brother (he was 9), then in 2003 I lost another brother and a sister. I never questiond that they went to a peaceful place. With Natalee things changed, I have worried about her happiness on the other side. With all her sisters and brother and parents still here, all together, I thought how she must be feeling, robbed of the spearation of her family. How it must be harder on her than us. Even though she is with my 3 siblings and other loved ones. Worring about her well-being has troubled me so much that I have stayed down in that hole miserably. I finally realized that my fears and worries were natural because it is what mothers do 'worry about their childrens happiness and safety' Instead of fighting, I am learning to 'let go' and again trust in Gods word and his eternal plan.
I would like to share a scripture that helped me get on the right perspective and that she is happy. It is in the Book of Mormon Alma 40:11-12 "Now, concerning that state of the soul between death and resurrection - Behold, it has been made known unto me by an angel that the spirits of all men, as soon as they are departed from this mortal body, yea, the spirits of all men, weather they be good or evil, are taken home to that God who gave them life. 12, And then shall it come to pass, that the spirits of those who are righteous are received into a state of happiness, which is called paradises, a state of rest, a state of peace, where they shall rest from all their troubles and from all care, and sorrow. (vs. 13 doesnt give a good account for those that are wicked) Alma 40, Alma 41, Alma 42 are excellent read just google it.
The poet Sennaca said "The day which we fear as our last is but the birthday of eternity"
Do I have answers for the toubled soul to find peace? I think we all have to find our own course but this I know you cant do it alone. I think the thing that help jolt me was when my son Ryan and his wife were coming up for a week. I was forced to get out of my pit to get things going for when they came. The Gonzalez family (who we don't really know) kindly offered their beach house. So I was pulled out of the pit and was able to relax and enjoy all of my family. Yes I thought about Natalee and quietly cried. But I didnt feel so absorbed. I have alway read the scriptures and it is a fabric of my life, that I have continued to do. I was mad at God, so I told him that for a while I was going to guit talking with him. OK I still prayed every day but my heart was not there. I am no longer mad at him and it feels good to be back on speaking terms. One of my highlights is several weeks ago at Church I had 10 of Natalees friends come up and each gave me a hug. We all cried, it was so powerful, it is the closest I can get to hugging Natalee. I was talking with Hannah and Riley on Sunday and they shared how all of Natalee's friend have gotten together this summer to share stories about her. It warms my heart that she is not forgotten by others. This brings me peace.
I have taken the trellis with a photo, up to her grave site. We are not ready to put up a marker; it is too final.
Since I have used the boat as my parable, I will continue the same. After Natalee passed away, my grief became so great I felt swallowed up in a ragging storm at sea. Just fighting the swells of emotions I had no time to relax or laugh or feel peace. I felt like I was put in the hull of the boat, where the trap door was opened to let me in then shut closed. No light was able to penetrate to give warmth or to see. Since I could not see, doubt, fear, and a loss of hope was playing on my mind and my heart. Reading JOB (Old Testament) after loosing your child has totally changed my perspective of the book. He felt the same feelings that I have been going through. My sorrows escalted at Natalee's 2 month mark, to where I felt so consumed with grief. Job lost his 10 children all in one day; uncomprehendable! In chapter 6 he said " my grief was heavier than the sand of the sea... for the arrows of the Almighty are within me, the poison drinketh up my spirit: the terrors of God do set themselves in array against me. 7:4 When I lie down..the light be gone and I am full of tossing's to and fro..the day spend without hope..Later he expressed a doubt in the resurrection and questioned that there was life after the body was laid in the ground.
The beauty and hope in Job, is he did find his way out. I have alway told myself I will not allow this to ruin my life. It is not as easy as I thought. Actually since I had a full year to prepare for Natalee's passing I thought it would lessen the blows, plus the last 7 weeks were so painful and difficult for her it was a sweet release. But all that didnt matter when she is so greatly missed. I felt robbed from my little girl. It is hard to understand and all reason and logic was on the other side of that door. Now almost 3 months I feel like the trap door has been opened and I can feel the suns warmth and it feels good. I have felt a peace these past two days that I was craving for. Will it stay I dont know but it gives me an understanding that my life will not alway be in the storm.
"For tis sorrow that works our pondering, and grief that teaches us to feel" (auther unknown)
As I sat at Natalee's grave site on Sunday, I felt a renewed hope in Christ and of the Resurrection. Because he was able to break the bands of death, He has given that as a gift to us all. When I was 6 years old, I lost a brother (he was 9), then in 2003 I lost another brother and a sister. I never questiond that they went to a peaceful place. With Natalee things changed, I have worried about her happiness on the other side. With all her sisters and brother and parents still here, all together, I thought how she must be feeling, robbed of the spearation of her family. How it must be harder on her than us. Even though she is with my 3 siblings and other loved ones. Worring about her well-being has troubled me so much that I have stayed down in that hole miserably. I finally realized that my fears and worries were natural because it is what mothers do 'worry about their childrens happiness and safety' Instead of fighting, I am learning to 'let go' and again trust in Gods word and his eternal plan.
I would like to share a scripture that helped me get on the right perspective and that she is happy. It is in the Book of Mormon Alma 40:11-12 "Now, concerning that state of the soul between death and resurrection - Behold, it has been made known unto me by an angel that the spirits of all men, as soon as they are departed from this mortal body, yea, the spirits of all men, weather they be good or evil, are taken home to that God who gave them life. 12, And then shall it come to pass, that the spirits of those who are righteous are received into a state of happiness, which is called paradises, a state of rest, a state of peace, where they shall rest from all their troubles and from all care, and sorrow. (vs. 13 doesnt give a good account for those that are wicked) Alma 40, Alma 41, Alma 42 are excellent read just google it.
The poet Sennaca said "The day which we fear as our last is but the birthday of eternity"
Do I have answers for the toubled soul to find peace? I think we all have to find our own course but this I know you cant do it alone. I think the thing that help jolt me was when my son Ryan and his wife were coming up for a week. I was forced to get out of my pit to get things going for when they came. The Gonzalez family (who we don't really know) kindly offered their beach house. So I was pulled out of the pit and was able to relax and enjoy all of my family. Yes I thought about Natalee and quietly cried. But I didnt feel so absorbed. I have alway read the scriptures and it is a fabric of my life, that I have continued to do. I was mad at God, so I told him that for a while I was going to guit talking with him. OK I still prayed every day but my heart was not there. I am no longer mad at him and it feels good to be back on speaking terms. One of my highlights is several weeks ago at Church I had 10 of Natalees friends come up and each gave me a hug. We all cried, it was so powerful, it is the closest I can get to hugging Natalee. I was talking with Hannah and Riley on Sunday and they shared how all of Natalee's friend have gotten together this summer to share stories about her. It warms my heart that she is not forgotten by others. This brings me peace.
I have taken the trellis with a photo, up to her grave site. We are not ready to put up a marker; it is too final.
Saturday, August 7, 2010
two months
I thought after two months, life would get a little easier. The fact is it has become worse. The reality of my Natalee passing is starting to hit harder and has become more consuming. I feel like I am the main character in 'Alice in Wonderland' when she fell in the hole; at times I don't know what is up or down. Just when I think I am starting to settle, I am turned upside down and everything falls apart. There are days where I can't hardly function without crying and every little thing can set me off. The only thing I can say to myself is I am going to get over this. I know that we will come out on top and not let it destroy us. Kent and the girls still have hard days, this is not just a mothers journey.
It is hard for me to go places, since Natalee wasnt able to do much, the one thing she loved to do was go grocery shopping with me. I would put her behind the shopping cart in her wheel chair, hooking her foot into the cart, then pull both. So when I go shopping it grieves me to not be taking her along. So many things remind me of her that I am constantly being reminded of her.
One thing I am so grateful for is my daughters. They are all home for the summer and just having them around fills a void that I know would be there. We actually have 4 children in college now and one of my fears is being an empty nester 5 years before my time. So my daughter Janna has taken an deferment from BYU this fall to stay home with me. Honestly when she told me of her plan I felt a relief. In a way she is mommy sitting me. Last year I had two daughters at home, this year was a drastic change.
Good change. Not getting out of the house much it has not been the healthiest for us all. So the girls and I went to Utah for a good friends wedding (our sons, sister-in-law). The one security was thinking that I was free from all the sympathy looks, cause not many would know us. Wrong, so many people came up to me and gave me a hug telling me that they had followed Natalee's blog. The hugs and well wishes felt really good, I was amazed of how far spread our life has been.
When I returned home I asked Kent to give me a Priesthood blessing. That has given me a lot of comfort. This last week was the first week where I have recalled some funny moments with our Natalee. One recollection was her last day, my good friend Stephanie and I were getting her situated on the recliner and she looked at me and said 'get the chickens out of here!' I had to reaffirm her comment to which we said we would. It was a day that I laughed and cried at the same time because she would say such unusual things. To me this is good because it has been hard to think of the memories of her without crying. I know being able to think of good memories will replace the sad thoughts, and in time will fill my life more with the good times.
Monday, June 28, 2010
Natalee's Memorial Fund
I know there are some who have asked if there was a fund to donate for Natalee. Our good friend Suzi Dyches has opened an account at Wells Fargo bank. You can go to any branch and tell them that you would like to make a donation to the 'Natalee Walton Memorial Fund'.
On the last day of school, Conestoga M.S. had a fund raiser where the children brought in loose change. The youth donated close to $2,000, thank you for your amazing hearts. We were shocked at the cost of her burial needs and we're so grateful for all your generosity.
My heart is so touched at the turnout of all the youth that came to Natalee's funeral service. I know that she saw all of you there and I am sure that she was aware of each of you personally. I truly believe she was there. Thank you. Also we want to thank all those who came to support our family on that very difficult but special day. I would like to share something that the person we worked with at the cemetery told us. She said that all day it was cloudy and windy (Natalee's resting place is on top of a hill that over looks the valley, very peaceful and serene) By the time we arrived, all of the sudden the sun came out, the cold winds stopped and she knew without a doubt that heaven was smiling down on our special day. After everyone left we stayed behind and I saw for myself how all the sudden a cold wind came down the hill. It was significant. It was a witness to us that God stilled peace to all of us.
It is three week today since Natalee passed over to the next life, I am just starting to think. The best way to describe our life right now, is everything is intensified. Our feelings, our emotions, our sorrows are so vulnerable. It still hurts, and we are left to ask the questions 'WHY?' Why she had to be taken at only 13, why did she have to get cancer and suffer and many more questions. And for me personally I have told my Heavenly Father that I am so mad at him. One thing I know for sure, is in time the answers will come. Until then, I will search to know the truth. Truth, Christ taught will set us free, or give us peace. Truth is when we know without a doubt, what is in Gods mind, will and heart. It is a pure understanding of what he wants and truly feels. Essentially being able to see as God sees. What cripples us is when our hurts, confusion, and anger takes over and we allow it to consume us. That is how Satan is able to have power over our hearts and if we keep listening to our emotions and not sifting through, then our all consuming feeling can literally destroy us.
Our family is doing a lot of together time, we even started doing crossword puzzles together and every day we play either Skipbo, or Phase 10 two of Nats favorite card games.
Everynight at 11 o'clock I get out my 'Book of Mormon' and read a chapter with Natalee. I imagine that she is sitting there beside me as I read aloud to her. Even though I don't feel her beside me it still gives me comfort to imagine her leaning up against me as I read to her, something I haven't been able to do for some time, because she was hurting. I have always found peace in the word of God and during this unrested time it does calm my heart and soul.
We are keeping up Natalee's trellis in the front yard in case someone wants to write a note to Nat or the family.
Our address is: 12345 SW Millview Ct. / Tigard, Or. / 97223
On the last day of school, Conestoga M.S. had a fund raiser where the children brought in loose change. The youth donated close to $2,000, thank you for your amazing hearts. We were shocked at the cost of her burial needs and we're so grateful for all your generosity.
My heart is so touched at the turnout of all the youth that came to Natalee's funeral service. I know that she saw all of you there and I am sure that she was aware of each of you personally. I truly believe she was there. Thank you. Also we want to thank all those who came to support our family on that very difficult but special day. I would like to share something that the person we worked with at the cemetery told us. She said that all day it was cloudy and windy (Natalee's resting place is on top of a hill that over looks the valley, very peaceful and serene) By the time we arrived, all of the sudden the sun came out, the cold winds stopped and she knew without a doubt that heaven was smiling down on our special day. After everyone left we stayed behind and I saw for myself how all the sudden a cold wind came down the hill. It was significant. It was a witness to us that God stilled peace to all of us.
It is three week today since Natalee passed over to the next life, I am just starting to think. The best way to describe our life right now, is everything is intensified. Our feelings, our emotions, our sorrows are so vulnerable. It still hurts, and we are left to ask the questions 'WHY?' Why she had to be taken at only 13, why did she have to get cancer and suffer and many more questions. And for me personally I have told my Heavenly Father that I am so mad at him. One thing I know for sure, is in time the answers will come. Until then, I will search to know the truth. Truth, Christ taught will set us free, or give us peace. Truth is when we know without a doubt, what is in Gods mind, will and heart. It is a pure understanding of what he wants and truly feels. Essentially being able to see as God sees. What cripples us is when our hurts, confusion, and anger takes over and we allow it to consume us. That is how Satan is able to have power over our hearts and if we keep listening to our emotions and not sifting through, then our all consuming feeling can literally destroy us.
Our family is doing a lot of together time, we even started doing crossword puzzles together and every day we play either Skipbo, or Phase 10 two of Nats favorite card games.
Everynight at 11 o'clock I get out my 'Book of Mormon' and read a chapter with Natalee. I imagine that she is sitting there beside me as I read aloud to her. Even though I don't feel her beside me it still gives me comfort to imagine her leaning up against me as I read to her, something I haven't been able to do for some time, because she was hurting. I have always found peace in the word of God and during this unrested time it does calm my heart and soul.
We are keeping up Natalee's trellis in the front yard in case someone wants to write a note to Nat or the family.
Our address is: 12345 SW Millview Ct. / Tigard, Or. / 97223
Monday, June 14, 2010
I will keep on posting
I am surprised at the feelings I have been going through since our sweet Natalee has departed this life. The day after her funeral I was expecting horrendous pain and grief, but the morning after I felt calm as did the rest of the family. I thought of this past year how our family has had to endure a lot of sorrow, grieving over Natalee's hardships. It is something that has been so unbearable at times. Admidst all the lows in our lives, we have been carried to the top of the mountian and saw and understood some of God's tender mercies, It has been a journey where we have rarely seen the calm.
Through this past year, I feel like we have been in a boat that is in the middle of the ocean, the storms have been hitting us in harsh and intense ways, tossing us in directions we did not know. Sometimes the winds have settled but we have not been able the see the light break through the clouds. Just once in a while a hint of clearing but never clear skies that was needed to bring us back to shore.
Our boat for several days has been floating in still waters, still in the middle of the ocean, still not knowing which way to paddle. The calmness might be because our daughter Nicole had graduation on Sunday and it was important to us that she enjoyed her special day, and we felt we were being blessed. Today we have felt a change in the winds, and a new storm is coming. The worst of storms is over (cancer and Natalee's death), we now have oars in hand hoping to find our way to the harbor. Maybe even at times the wind may blow at our backs pushing us forward. I don't know how long it will take to find our way back. We might end up going in the wrong direction, me might need to experience heartache and pain for a while to help us better understand with clarity some of the important things. I know it will take a long time to heal, and as we drift in our boat I hope to share part of our journey. Part of what I want to share will be for Natalee's friends to help them find comfort and peace. I know it has been hard on all of you.
Natalee's chapter ended as did her book for this life. She is now starting a new book, and whole new life. One thing I wanted to express is that one of God's plan, is for us to alway grow and progress, learn and experience, to find peace and joy. Where Natalee is at, she is learning and experiencing new and greater things, more than what she understood here. A place where there are no dieseases or suffering. It is a whole new wonderful life, I know she is loving it, and is probably sitting on top of a mountian seeing new and wonderful things. No doubt she is missing us as well as we are missing her, but I know she is smiling now and she able to run for the first time since she was diagnosed with her cancer a year ago.
Through this past year, I feel like we have been in a boat that is in the middle of the ocean, the storms have been hitting us in harsh and intense ways, tossing us in directions we did not know. Sometimes the winds have settled but we have not been able the see the light break through the clouds. Just once in a while a hint of clearing but never clear skies that was needed to bring us back to shore.
Our boat for several days has been floating in still waters, still in the middle of the ocean, still not knowing which way to paddle. The calmness might be because our daughter Nicole had graduation on Sunday and it was important to us that she enjoyed her special day, and we felt we were being blessed. Today we have felt a change in the winds, and a new storm is coming. The worst of storms is over (cancer and Natalee's death), we now have oars in hand hoping to find our way to the harbor. Maybe even at times the wind may blow at our backs pushing us forward. I don't know how long it will take to find our way back. We might end up going in the wrong direction, me might need to experience heartache and pain for a while to help us better understand with clarity some of the important things. I know it will take a long time to heal, and as we drift in our boat I hope to share part of our journey. Part of what I want to share will be for Natalee's friends to help them find comfort and peace. I know it has been hard on all of you.
Natalee's chapter ended as did her book for this life. She is now starting a new book, and whole new life. One thing I wanted to express is that one of God's plan, is for us to alway grow and progress, learn and experience, to find peace and joy. Where Natalee is at, she is learning and experiencing new and greater things, more than what she understood here. A place where there are no dieseases or suffering. It is a whole new wonderful life, I know she is loving it, and is probably sitting on top of a mountian seeing new and wonderful things. No doubt she is missing us as well as we are missing her, but I know she is smiling now and she able to run for the first time since she was diagnosed with her cancer a year ago.
Wednesday, June 9, 2010
Service Details
Services for Natalee will be held Friday June 11, 2010 at the LDS Lake Oswego Stake Center. The address is 14903 Westlake Drive, Lake Oswego. The cross street is Kruse Way. Parking is somewhat limited so try to carpool.
Viewing will be held from 12:00 to 1:30 pm. Funeral service starts at 2:00 pm. Graveside service at Skyline Memorial Gardens at 4:00 pm.
The services are open to all faiths.
Viewing will be held from 12:00 to 1:30 pm. Funeral service starts at 2:00 pm. Graveside service at Skyline Memorial Gardens at 4:00 pm.
The services are open to all faiths.
Tuesday, June 8, 2010
Our sweetheart is in His loving arms
This past week Natalee made a major turn for the worse. It became obvious on Saturday that we were going to lose her soon.
We weren't expecting it this soon. Yesterday - June 7, 2010 at 3:00 PM, our little sweetheart got to run free without anymore pain. And I am sure she has a big smile where she is at. Her passing is hard but we are comforted to know she is now without cancer.
A friend of ours has put up a trellis in our front yard for those who would like to write notes to Natalee or her family.
When we have the time and date for her memorial service we will post it on this blog.
All your love and service to our family has carried us through this journey. Thank you so much.
We weren't expecting it this soon. Yesterday - June 7, 2010 at 3:00 PM, our little sweetheart got to run free without anymore pain. And I am sure she has a big smile where she is at. Her passing is hard but we are comforted to know she is now without cancer.
A friend of ours has put up a trellis in our front yard for those who would like to write notes to Natalee or her family.
When we have the time and date for her memorial service we will post it on this blog.
All your love and service to our family has carried us through this journey. Thank you so much.
Saturday, June 5, 2010
Letting go and putting our trust in God
This past month has been our most learning experience, and the most trying and hardest to handle. I commented previously that I had an experience that I wanted to share, but it was not the time. I feel now is the time. Back on May 10, three days after we put Natalee into Gods care, besides some of the things they told us to expect, I was told she had 2-4 weeks to live. I was in shock and horrific grief, so unimaginable was my anguish. I sat out in the parking lot, and told my Father in Heaven that I didn't think I could handle it anymore. That night I had Gods tender mercies come upon me. To try and explain this sacred experience I know that I will not do justice, but I will attempt. That night while talking with my Father in Heaven, my body went through a literal, physical experience. I felt likemy whole body was being filled up with air, literally, and as I was being filled my whole being was being filled with such peace and light. It is the most powerful experience that I have felt. A peace that surpasses all understanding. What followed in our family for the next three weeks is something that I thought was unattainable. We were being carried, and that blessing of the Holy Spirit was so great that our faith and hope became so empowering. Every morning when I woke up I felt so positive and knew she was going to make it, there was not a doubt in my mind or heart. When Kent would give her a Priesthood blessing it was so powerful, that no doubt the words given would be carried out, because the spirit was so strong. The spiritual feelings were so magnificent in our home, nothing seemed impossible. I will say that we have drawn on the powers of heaven and exercised a faith that has been pure and without doubt, that I know if God healed only on the merits of someones faith Natalee would be healed. Plus I know that thousands of people have been praying mightily right with us.
The previous weekend we have had to learn a new lesson and it is hard. First when we turned her over to Gods care, we still was asking God to do what we desired and being a big part of the process. There is nothing wrong with that and we felt this was the right course of action. On Saturday May 29, Natalee went down so fast she came close to dying, her kidney was shutting down ( which is the first to go) she was so lifeless and no longer in pain. The nurse said she would most likely pass on, this week. She was given fluids that went directly by a needle into her stomach. With the re hydration also revealed that her kidney was ok. That is when we came to a new level of understanding; that we needed to let go completely and say to God, 'Thy will be done'. With no expectations just complete trust. This is harder to do than it appears. We have a greater appreciation for Abraham of old when he took his son Isaac to the alter to be sacrificed. He had no expectations that God would tell him to stop, he went with pure faith and a trust in Gods will. Amazing! (Later to be a lesson us of Christ's infinite sacrifice) So as we gave Natalee to God, we do not know whether she will have her life extended, or if God will take her home. A place Mormons call the Spirit World, where families still exist, where we are able to grow, learn and experience, a peaceful life, a place where Natalee would be free from her cancer.
One of the questions I had to ask and finally got an answer, is why did I feel so strong that she would be healed. It occurred to me during the three weeks when we were being carried by the Holy Spirit, that the spirit was so strong that it caused us to feel so good, that it most likely caused us misinterpret what was being conveyed. I hope that make sense, for God doesn't mislead we just understand it incorrectly.
Where we are at right now. First Natalee's kidney is working. She still won't eat and weighs about 60# (at 5'1") She is bound to the recliner downstairs and that is where she sleeps most of the day and night. She is unable to walk so the recliner is her life. There are times when she will sleeps for 2 whole days. So in truth it is not promising. She is in a lot of pain that can be controlled (when she takes her medication) Our family is doing OK, we feel like we are in a waiting room, waiting to see how God wants things to turn out. No expectations, a trust that God will do what is best. A quote I found this week " Faith is stepping into the unseen and trusting the light will follow" (Hafen) Our trust is knowing that Natalee will be where God intended her to be and we have peace with that.
The previous weekend we have had to learn a new lesson and it is hard. First when we turned her over to Gods care, we still was asking God to do what we desired and being a big part of the process. There is nothing wrong with that and we felt this was the right course of action. On Saturday May 29, Natalee went down so fast she came close to dying, her kidney was shutting down ( which is the first to go) she was so lifeless and no longer in pain. The nurse said she would most likely pass on, this week. She was given fluids that went directly by a needle into her stomach. With the re hydration also revealed that her kidney was ok. That is when we came to a new level of understanding; that we needed to let go completely and say to God, 'Thy will be done'. With no expectations just complete trust. This is harder to do than it appears. We have a greater appreciation for Abraham of old when he took his son Isaac to the alter to be sacrificed. He had no expectations that God would tell him to stop, he went with pure faith and a trust in Gods will. Amazing! (Later to be a lesson us of Christ's infinite sacrifice) So as we gave Natalee to God, we do not know whether she will have her life extended, or if God will take her home. A place Mormons call the Spirit World, where families still exist, where we are able to grow, learn and experience, a peaceful life, a place where Natalee would be free from her cancer.
One of the questions I had to ask and finally got an answer, is why did I feel so strong that she would be healed. It occurred to me during the three weeks when we were being carried by the Holy Spirit, that the spirit was so strong that it caused us to feel so good, that it most likely caused us misinterpret what was being conveyed. I hope that make sense, for God doesn't mislead we just understand it incorrectly.
Where we are at right now. First Natalee's kidney is working. She still won't eat and weighs about 60# (at 5'1") She is bound to the recliner downstairs and that is where she sleeps most of the day and night. She is unable to walk so the recliner is her life. There are times when she will sleeps for 2 whole days. So in truth it is not promising. She is in a lot of pain that can be controlled (when she takes her medication) Our family is doing OK, we feel like we are in a waiting room, waiting to see how God wants things to turn out. No expectations, a trust that God will do what is best. A quote I found this week " Faith is stepping into the unseen and trusting the light will follow" (Hafen) Our trust is knowing that Natalee will be where God intended her to be and we have peace with that.
Tuesday, May 18, 2010
update
There is so much I want to share, but feel that I need to hold off for the time.
Natalee is about the same. It has been 10 days from the last posting. I will say that she hasn't gotten better, but neither has she worsen. Three days after I had posted the previous blog, Natalee's doctor asked me to come in to talk. She wanted to prepare our family for some of the events that might happen to her. I cannot share what was told for it is too hard to even recount. From our conversation, we were expecting a rapid decline. So when I say she hasn't gotten worse, that is without a doubt amazing.
We are still having a hard time getting her to eat. She has 'thrush' which is a fungus that is in her mouth and digestive track. (chemo side effects) It is very uncomfortable for her to even swallow water, Her stomach hurts a lot from the thrush, being without food, and from coughing so much. It is a victory when she is able to eat. With the chemo being clean out of her body and the thrush medication starting to make some improvements, we are hoping by next week food will be appealing.
So many of you have asked what you can do? Right now, I would ask you to pray that Natalee's spirits can be lifted, that she can find peace and comfort, not to give up, and to have a desire to fight. Some of the greatest battles in life could have been won if we hadn't given up. Not knowing that while in the darkest hour there was a door waiting to be opened to find victory. It was 4 weeks ago that she was told the horrible news that nothing was working. This also was the first time she found out that she had terminal cancer. Can you imagine the shock, and horror that went through her mind, heart, and soul? It is unfathomable for me to comprehend. So for 3 weeks she gave up, quit eating, and quit trying to survive. So our good friends, we just ask you to pray.
Now one thing I want to express, when we said we turned her over to God, we weren't saying we gave up. She is in the greatest hands and care that can be given. The best was to say it is, she is on God's chemo, not man's chemo. So readers understand that our faith in God's healing powers have never been as strong as now. We have had some powerful experience that have lifted us up. Experiences in due time I want to share.
Natalee is about the same. It has been 10 days from the last posting. I will say that she hasn't gotten better, but neither has she worsen. Three days after I had posted the previous blog, Natalee's doctor asked me to come in to talk. She wanted to prepare our family for some of the events that might happen to her. I cannot share what was told for it is too hard to even recount. From our conversation, we were expecting a rapid decline. So when I say she hasn't gotten worse, that is without a doubt amazing.
We are still having a hard time getting her to eat. She has 'thrush' which is a fungus that is in her mouth and digestive track. (chemo side effects) It is very uncomfortable for her to even swallow water, Her stomach hurts a lot from the thrush, being without food, and from coughing so much. It is a victory when she is able to eat. With the chemo being clean out of her body and the thrush medication starting to make some improvements, we are hoping by next week food will be appealing.
So many of you have asked what you can do? Right now, I would ask you to pray that Natalee's spirits can be lifted, that she can find peace and comfort, not to give up, and to have a desire to fight. Some of the greatest battles in life could have been won if we hadn't given up. Not knowing that while in the darkest hour there was a door waiting to be opened to find victory. It was 4 weeks ago that she was told the horrible news that nothing was working. This also was the first time she found out that she had terminal cancer. Can you imagine the shock, and horror that went through her mind, heart, and soul? It is unfathomable for me to comprehend. So for 3 weeks she gave up, quit eating, and quit trying to survive. So our good friends, we just ask you to pray.
Now one thing I want to express, when we said we turned her over to God, we weren't saying we gave up. She is in the greatest hands and care that can be given. The best was to say it is, she is on God's chemo, not man's chemo. So readers understand that our faith in God's healing powers have never been as strong as now. We have had some powerful experience that have lifted us up. Experiences in due time I want to share.
Saturday, May 8, 2010
It's in Gods Hands
This past Wednesday May 5th, we had a family fast. As a parent there becomes a burden that digs at our heart, wondering have we done all that we can, should we stop as the doctors have suggested, or should we try to find other options. Since this all began, we have been overwhelmed with others suggestions (some I have appreciated) but others that have made us wonder if we have fallen short. With these haunting emotions we decided to seek our answers in our Temple. Whenever I need answers, or need to feel Gods comfort and Love, I go to His Temple. We specifically went to know what
Gods will is. So we considered three options 1) to continue on with our doctors and try another drug. 2) To check out some other cancer clinics that are more holistic, 3) to stop the drugs and turn her over to God. We told our children to all pray at 7:00 during the time we were to pray. After an hour and half of Kent and I praying and talking together, we knew without a doubt that it is time to stop the chemo, and put our daughter Natalee into Gods hands. This has been the hardest burden we have ever had to make, but we know that this is Gods will. and feel peace in our decision.
God is the architect and we trust in his will and his mighty power. With all the hardships and pain that Natalee is going through, it is time for our little girls to be free from cancer. Natalee has gone down hill rapidly. She has no strength to walk, it is very difficult to get her to eat and has lost a lot of weight. But as miserable as she is, she still has it in her to make us laugh. The doctor and social worker at Emanuel both made a comment that Natalee has stood out more than any other kid with how well she handles her hardships. That she has never complained, they said that if there was a word to best describe her, it is that she has grace. That is true.
The doctor also told me that she has shared Natalee's case with many doctors and have shown them her scans, and all of them were amazed that she wasn't taking pain medications until this past month. They felt she should have been taking it all along. I am so grateful for your prayers for Natalee, I believe it has empowered Gods grace and tender mercies to carry her through this difficult time.
Gods will is. So we considered three options 1) to continue on with our doctors and try another drug. 2) To check out some other cancer clinics that are more holistic, 3) to stop the drugs and turn her over to God. We told our children to all pray at 7:00 during the time we were to pray. After an hour and half of Kent and I praying and talking together, we knew without a doubt that it is time to stop the chemo, and put our daughter Natalee into Gods hands. This has been the hardest burden we have ever had to make, but we know that this is Gods will. and feel peace in our decision.
God is the architect and we trust in his will and his mighty power. With all the hardships and pain that Natalee is going through, it is time for our little girls to be free from cancer. Natalee has gone down hill rapidly. She has no strength to walk, it is very difficult to get her to eat and has lost a lot of weight. But as miserable as she is, she still has it in her to make us laugh. The doctor and social worker at Emanuel both made a comment that Natalee has stood out more than any other kid with how well she handles her hardships. That she has never complained, they said that if there was a word to best describe her, it is that she has grace. That is true.
The doctor also told me that she has shared Natalee's case with many doctors and have shown them her scans, and all of them were amazed that she wasn't taking pain medications until this past month. They felt she should have been taking it all along. I am so grateful for your prayers for Natalee, I believe it has empowered Gods grace and tender mercies to carry her through this difficult time.
Thursday, April 29, 2010
Natalee is having a hard time
One of the opportunities of our human existence, is we are given, 'pen in hand' to write our own story of life. Sometimes without our control another author steps in to write on the pages of our history. This past year Natalee has had to let others do just that. As her mother, I have been so proud with how she has gracefully handled this chapter in her life.
I feel she is starting a new chapter. One that began with some wonderful experiences. Natalee was able to go two times in the month of March and stay at a beach house with some of her friends. This was the highlight of this past year. Looking back at this time, I now know it was a time of tender mercies where she felt good. It was a delightful time to warm her heart and soul. I am so grateful for that time and feel we were blessed.
Natalee has made a turn for the worse. Since December her tumors have been growing and she has new tumors. We don't know if this is her final chapter or if it is going to be the worse chapter of her life. In our meeting last week with the doctors, we were told it is time to quit using chemo. The tumors have learned to resist the drugs. From the beginning there was some information that we chose to withhold from Natalee and our readers. Back in May 2009, our first meeting with the Doctor, we were told that she had 5 months to live with a 10% chance to survive. We have only shared the information about the larger tumors, but she has always had clusters of tiny fibrous tumors in her lungs that number in the hundreds. That is horrible news when you are trying to fill your heart and soul with hope.
Natalee just doesn't feel good. Her body aches constantly, she has a hard time breathing and spends most of her time in bed or on the recliner. Today we are getting an oxygen machine ( it is a machine that makes its own oxygen) delivered to help her breathe better. I want you to know about this so if anyone wants to come over to see Natalee you wont be surprised. The one magical thing that really brightens her spirits, is when a friend comes over to hang out with her. (bring a movie to watch) There is such a change in her and I want to thank those that have remembered my sweetheart.
Currently we asked to stay on this new drug Afinitor and had the dosage increased to the adult level. Next week she will have her scans and we will decided what the next step is. We have not given up, but we have had to change our perspective.
Have I stopped believing in miracles? Miracles are all around us, every breath we take with our amazing, complicated human body is a miraculous gift. When I see a soul that has been broken, lost, where the clouds of darkness encompasses their lives, and then find a ray of light, of hope,that is a great miracle. I have thought about how I was told that she would be a miracle. I knew that she was going to be healed; miracles are attached to those words. I want your to know that I had to go down to the depths and question, is all that I have read and learned in the Holy Scriptures really true or is it just stories that was passed from generation to generation. Is it a myth or is it the living waters, springing from a well of hope. I had to wrestle to find the well of living waters, and I have drank from its sweet cup. I know that they are really His Words. There is only one person that has ever been recorded in the antiquities (historical writings) that was prophesied for centuries to come as a Savior of the world. He came to earth; lived a pure life. Just before he was crucified, he went into the Garden of Gethsemane and made an atonement for all mankind. Meaning he took all our burdens, our sins and sufferings, this account shares that he bleed from every pore for so painful was the event. Matthew 26:36-44. It is only He, Christ (meaning the anointed one) who had the power three days after his death to resurrect himself. Because he was able to do that, it opened the door for all of us to be resurrected. Meaning after we die our body and our spirit will be reunited again. Now that is the greatest miracle of all. I believe families are forever and that gives me eternal hope. I cant miss sharing the beautiful words of John 1 " In the beginning was the Word and the Word was with God, and the Word was God...And all things were made by him; and without him was not any thing made that was made. In him was life; and the life was the light of men. And the light shineth in darkness; and the darkness comprehended it not.... And the word was made flesh, and dwelt among us (and we beheld his glory, the glory as of the only begotten of the Father) full of grace and truth." Only they, who want to feel his light and not allow sorrow and darkness to get in the way, will be able to feel and see. I think darkness is when you become angry, hurt, consumed with fear, mislead, confused, have went against Gods laws, it gets in the way of seeing the greater picture. Hope is lost, Faith is lost, and no longer can you feel Charity ( the pure love of Christ)
I feel she is starting a new chapter. One that began with some wonderful experiences. Natalee was able to go two times in the month of March and stay at a beach house with some of her friends. This was the highlight of this past year. Looking back at this time, I now know it was a time of tender mercies where she felt good. It was a delightful time to warm her heart and soul. I am so grateful for that time and feel we were blessed.
Natalee has made a turn for the worse. Since December her tumors have been growing and she has new tumors. We don't know if this is her final chapter or if it is going to be the worse chapter of her life. In our meeting last week with the doctors, we were told it is time to quit using chemo. The tumors have learned to resist the drugs. From the beginning there was some information that we chose to withhold from Natalee and our readers. Back in May 2009, our first meeting with the Doctor, we were told that she had 5 months to live with a 10% chance to survive. We have only shared the information about the larger tumors, but she has always had clusters of tiny fibrous tumors in her lungs that number in the hundreds. That is horrible news when you are trying to fill your heart and soul with hope.
Natalee just doesn't feel good. Her body aches constantly, she has a hard time breathing and spends most of her time in bed or on the recliner. Today we are getting an oxygen machine ( it is a machine that makes its own oxygen) delivered to help her breathe better. I want you to know about this so if anyone wants to come over to see Natalee you wont be surprised. The one magical thing that really brightens her spirits, is when a friend comes over to hang out with her. (bring a movie to watch) There is such a change in her and I want to thank those that have remembered my sweetheart.
Currently we asked to stay on this new drug Afinitor and had the dosage increased to the adult level. Next week she will have her scans and we will decided what the next step is. We have not given up, but we have had to change our perspective.
Have I stopped believing in miracles? Miracles are all around us, every breath we take with our amazing, complicated human body is a miraculous gift. When I see a soul that has been broken, lost, where the clouds of darkness encompasses their lives, and then find a ray of light, of hope,that is a great miracle. I have thought about how I was told that she would be a miracle. I knew that she was going to be healed; miracles are attached to those words. I want your to know that I had to go down to the depths and question, is all that I have read and learned in the Holy Scriptures really true or is it just stories that was passed from generation to generation. Is it a myth or is it the living waters, springing from a well of hope. I had to wrestle to find the well of living waters, and I have drank from its sweet cup. I know that they are really His Words. There is only one person that has ever been recorded in the antiquities (historical writings) that was prophesied for centuries to come as a Savior of the world. He came to earth; lived a pure life. Just before he was crucified, he went into the Garden of Gethsemane and made an atonement for all mankind. Meaning he took all our burdens, our sins and sufferings, this account shares that he bleed from every pore for so painful was the event. Matthew 26:36-44. It is only He, Christ (meaning the anointed one) who had the power three days after his death to resurrect himself. Because he was able to do that, it opened the door for all of us to be resurrected. Meaning after we die our body and our spirit will be reunited again. Now that is the greatest miracle of all. I believe families are forever and that gives me eternal hope. I cant miss sharing the beautiful words of John 1 " In the beginning was the Word and the Word was with God, and the Word was God...And all things were made by him; and without him was not any thing made that was made. In him was life; and the life was the light of men. And the light shineth in darkness; and the darkness comprehended it not.... And the word was made flesh, and dwelt among us (and we beheld his glory, the glory as of the only begotten of the Father) full of grace and truth." Only they, who want to feel his light and not allow sorrow and darkness to get in the way, will be able to feel and see. I think darkness is when you become angry, hurt, consumed with fear, mislead, confused, have went against Gods laws, it gets in the way of seeing the greater picture. Hope is lost, Faith is lost, and no longer can you feel Charity ( the pure love of Christ)
Thursday, April 15, 2010
Scan results
This is going to be brief. I wanted all you caring people to know. The tumors have grown, the plus side they didn't grow as much as when she was on her previous chemo at Doernbechers. Natalee is taking a drug that has never been used on children, so the Doctor wanted us to start on a smaller dosage. So we are doubling, then next Wednesday we will sit down with Doctor Olsen to discuss new options. Doctor Olsen is doing more research on other opportunities out there. Again I ask for your prayers. I do want to note that we still feel the power of hope and that we are doing OK. Maybe it is because we have had so many people out there that has lifted us up getting us ready for the bad news.
Tuesday, April 13, 2010
Good times and good friends
WOW, the past few week have been unbelievable. Spring break started on March 20, which was also Natalee's 13th birthday!! Yes, that's right she is a teenier. So many kids sent her cards, the school made a board with comments and pictures also a parent made her a quilt where the kids signed it, and good friends brought gifts over. I was amazed at the good hearts of so many people. Thanks.
Natalee's pain. For the past two months, after her tumors had grown, she has had constant pain, both in her leg and back. She was prescribed 'Gabapentin' which has lessen the pain in her back, it is constantly there, but tolerable. As for her leg she is using the 'TENS unit', which stands for Transuctaneous Electrical Nerve Stimulation, essentially we put 4 electrode pads (very sticky) on specific muscles near her pain, then attach them to the unit which sends pulses, tricking the brain to pay attention, distracting it from the other pain. It works, it doesn't get rid of it but helps a lot. She can do that up to 4 times a day. The reason for the leg pain; during her surgery, as you may recall, she almost lost her leg because the tumor was wrapped around the nerve that runs down to her leg. When they removed the tumor, it caused nerve damage. From that she has a numb spot about 5"x7". The nerves compensate by becoming very active in that area, causing severe pain and that is why the TENS unit works well for that pain. There was a time when she was spending a lot of time in bed. So now less pain and more quality.
Spring break, Natalee was able to go to the beach with two friends, Makenna Bell and Ally Fulps. Part of the time it was stormy (loved it), then sunny, but cold. We were able to take short trips to the beach then come back and play games, watch movies, eat junk, and laugh a lot. We ran over to Tillamook cheese factory, and to Cape Mears lighthouse. Makenna's mom, Cathy also came with us, so it was also fun for me. I think the best part is seeing my girl laugh and be with friends. It was the best medicine. For that reason I am hoping that she can have more visits. Friday is an open door for anyone to walk on over after school.
This past weekend our Girl Scout Troop went to the beach (our last hurrah) we are dissolving the troop. Again it was an unbelievable time. We left at 4:30, right after we got on the road, Natalee had a surprise phone call from Taylor Swift. Even though she wasn't able to talk with her, she left a kind message that has been great to listen to. Thanks Taylor, to take the time to reach out, that meant a lot to Nat. Well with eight girls along with most the moms, we had a crazy time at the beach. While we were at the beach, some of the men (High Priests) from our Church came over and did some major yard work. They removed a large tree, 5 shrubs, repaired a broken fence from the windstorm and then the general pruning and cleaning up from ole winter. When I came home I was so amazed of the work that was done. I can't help but feel so blessed by so many caring people. You are all the wings that lift us up above the storms so that we can see. Thank you so much.
Tomorrow Natalee goes to the Doctors to find out the results of her scans. In a few days I will post the information, and hope to post some pictures from our beach trips.
Natalee's pain. For the past two months, after her tumors had grown, she has had constant pain, both in her leg and back. She was prescribed 'Gabapentin' which has lessen the pain in her back, it is constantly there, but tolerable. As for her leg she is using the 'TENS unit', which stands for Transuctaneous Electrical Nerve Stimulation, essentially we put 4 electrode pads (very sticky) on specific muscles near her pain, then attach them to the unit which sends pulses, tricking the brain to pay attention, distracting it from the other pain. It works, it doesn't get rid of it but helps a lot. She can do that up to 4 times a day. The reason for the leg pain; during her surgery, as you may recall, she almost lost her leg because the tumor was wrapped around the nerve that runs down to her leg. When they removed the tumor, it caused nerve damage. From that she has a numb spot about 5"x7". The nerves compensate by becoming very active in that area, causing severe pain and that is why the TENS unit works well for that pain. There was a time when she was spending a lot of time in bed. So now less pain and more quality.
Spring break, Natalee was able to go to the beach with two friends, Makenna Bell and Ally Fulps. Part of the time it was stormy (loved it), then sunny, but cold. We were able to take short trips to the beach then come back and play games, watch movies, eat junk, and laugh a lot. We ran over to Tillamook cheese factory, and to Cape Mears lighthouse. Makenna's mom, Cathy also came with us, so it was also fun for me. I think the best part is seeing my girl laugh and be with friends. It was the best medicine. For that reason I am hoping that she can have more visits. Friday is an open door for anyone to walk on over after school.
This past weekend our Girl Scout Troop went to the beach (our last hurrah) we are dissolving the troop. Again it was an unbelievable time. We left at 4:30, right after we got on the road, Natalee had a surprise phone call from Taylor Swift. Even though she wasn't able to talk with her, she left a kind message that has been great to listen to. Thanks Taylor, to take the time to reach out, that meant a lot to Nat. Well with eight girls along with most the moms, we had a crazy time at the beach. While we were at the beach, some of the men (High Priests) from our Church came over and did some major yard work. They removed a large tree, 5 shrubs, repaired a broken fence from the windstorm and then the general pruning and cleaning up from ole winter. When I came home I was so amazed of the work that was done. I can't help but feel so blessed by so many caring people. You are all the wings that lift us up above the storms so that we can see. Thank you so much.
Tomorrow Natalee goes to the Doctors to find out the results of her scans. In a few days I will post the information, and hope to post some pictures from our beach trips.
Thursday, April 8, 2010
Make a Wish shopping spree
Yesterday was the big scan day, we won't get the results for a few day. If you recall the past two scans came back with her tumors growing. With a new drug, we are hoping for some good news.
I would like to back up and share some events hat can't be skipped over. Back in February, Natalee was given a generous gift from 'Make-a-Wish' foundation. Nat chose to do a shopping spree. First we were taken by a limousine to shop at Best Buy where she got a large 52" TV along with a Blue Ray player, then we went over to Fred Meyers to get the TV stand, and a 'back massager', something she has wanted for a long time.
After the shopping spree, we all went out to eat; this included our chauffeur, and our wonderful volunteers form Make-a-Wish, Dixie and Karen. They have been with us form the beginning and still check on our well being. We are so grateful for their kindness, and the generosity of Make a Wish. They truly have gone above and beyond. Natalee had such a great time, and when she is not fleeling well, she can lie down and watch a movie on her BIG TV. She said that it is going with her when she gets out on her own.
Monday, March 8, 2010
We are going forward !
I want to thank all the wonderful people who have called, sent messages, came over to lift our spirits, and joined in our fast and prayer for Natalee. We have truly been blessed. Our friend, Gail Woller sent a note, which I feel conveys how through you, His tender mercies are picking up the pieces:
"I wanted to run right over and help you "glue" the pieces of the Hope jar back together... I realized that the Savior's grace and mercy are how He "glues" the
hope back togther again. He even can replace the jar with a bigger, stonger jar of Hope... I'm praying for His tender mercies to continue to be with you- Natalee, and the family- for your shattered jar to be replaced with a big, strong, light-filled jar of Hope to keep in view all the days ahead."
I had several people tell me that they had a strong impression to pray earnestly for our family, though they didn't know why. The first two days after the horrible news, our family just crawled in a cave. We were shocked that this new drug didn't work. I think from the beginning we felt this was the drug. Day three was a night and day difference, we felt His comfort and know your prayers were being answered. We felt His peace, and our minds were opened, thank you.
One of the others concerns we had, was Natalee's pain in her back and leg had increased so much that she was taking medication all day long just to ease it. She was using a Lidocaine patch on her back and taking Tylenol and Ty w/Codeine at night time. So you can imagine all the fears, that was wrestling in our minds. A week of sitting and waiting to find out the why's and what's were excruciating.
We are back at Emanuel; when we left, we had such a hard time saying goodbye to all the doctors and nurses, they have been there from the beginning. So it is good to be back home, and yes we fell in love with our doctor and nurse at Dorenbechers so again a sad goodbye. After meeting with Dr. Olsen, we felt hopeful about the new drug they want to try on her. This drug has a differant approach in attacking the tumors. The way she explained it was, before, we were trying to cut off the phone lines, (tumors seem to communicate to each other), and now we are attacking the Internet. OK, after I got home I tried to pick apart this analogy. I was somewhat confused so I will go back and ask for more clarification. This new drug is, Everolimus (e-ver-OH-li-mus), band name is Afinitor. Two side effects they are concerned about is she will have more sores in her mouth, and a high risk for infections. If Natalee even gets a fever we are to bring her right in.
About the pain in her back and leg. The back pain is from the tumor pressing on her sciatica nerve. She has been prescribed a medicine called, Gabepentin, an anti-depressant, which has proven to be successful for spinal problems, especially the sciatica nerve. As for her leg, they want her to do some physical therapy, one thought is they want to trick the brain by attaching some electrodes to the thigh , causing it to pulse which will send a message to the brain, hoping that it will put more energy on the new activity than the pain.
We have a new Hope-Jar ( it was too hard trying to piece it back together) and things are much better.
"I wanted to run right over and help you "glue" the pieces of the Hope jar back together... I realized that the Savior's grace and mercy are how He "glues" the
hope back togther again. He even can replace the jar with a bigger, stonger jar of Hope... I'm praying for His tender mercies to continue to be with you- Natalee, and the family- for your shattered jar to be replaced with a big, strong, light-filled jar of Hope to keep in view all the days ahead."
I had several people tell me that they had a strong impression to pray earnestly for our family, though they didn't know why. The first two days after the horrible news, our family just crawled in a cave. We were shocked that this new drug didn't work. I think from the beginning we felt this was the drug. Day three was a night and day difference, we felt His comfort and know your prayers were being answered. We felt His peace, and our minds were opened, thank you.
One of the others concerns we had, was Natalee's pain in her back and leg had increased so much that she was taking medication all day long just to ease it. She was using a Lidocaine patch on her back and taking Tylenol and Ty w/Codeine at night time. So you can imagine all the fears, that was wrestling in our minds. A week of sitting and waiting to find out the why's and what's were excruciating.
We are back at Emanuel; when we left, we had such a hard time saying goodbye to all the doctors and nurses, they have been there from the beginning. So it is good to be back home, and yes we fell in love with our doctor and nurse at Dorenbechers so again a sad goodbye. After meeting with Dr. Olsen, we felt hopeful about the new drug they want to try on her. This drug has a differant approach in attacking the tumors. The way she explained it was, before, we were trying to cut off the phone lines, (tumors seem to communicate to each other), and now we are attacking the Internet. OK, after I got home I tried to pick apart this analogy. I was somewhat confused so I will go back and ask for more clarification. This new drug is, Everolimus (e-ver-OH-li-mus), band name is Afinitor. Two side effects they are concerned about is she will have more sores in her mouth, and a high risk for infections. If Natalee even gets a fever we are to bring her right in.
About the pain in her back and leg. The back pain is from the tumor pressing on her sciatica nerve. She has been prescribed a medicine called, Gabepentin, an anti-depressant, which has proven to be successful for spinal problems, especially the sciatica nerve. As for her leg, they want her to do some physical therapy, one thought is they want to trick the brain by attaching some electrodes to the thigh , causing it to pulse which will send a message to the brain, hoping that it will put more energy on the new activity than the pain.
We have a new Hope-Jar ( it was too hard trying to piece it back together) and things are much better.
Thursday, February 25, 2010
starting all over again
February 25, 2010
Throughout this journey with Natalee, I have placed a jar called 'hope' high upon a shelf so that it has been in view at all times. At times the wind has blown hard and caused the door to slam shut, making it hard to see. After pulling ourselves together and making our way to the door, we have been able to open it, to let the light shine in. Letting us again see the 'hope' jar. Sometimes the storms have been so hard that the jar has been pushed into a dark corner, and after a lot of searching we have been able to put it in its right place. Today (Feb. 22) the winds have blown so hard that the jar fell to the ground and shattered in pieces. And with the door closed I am having a hard time pulling the pieces back together. Natalee had her scans today, and the results were horrible. The standard for this study was that if her tumors grew more than 20% they would have to take her off the drug. So today she was taken off the study and right now we have no avenue of what to do. They didnt tell us how much they have grown and truthfully I didn't want to know. They did mention that even though they didn't scan her abdomen area this time they could tell that the tumors in that location have grown. Both of the doctors from Emanuel and Doernbechers are trying to find the right option.
I usually wait for the storms to pass over where I can see the brighter picture before I write anything in the blog, but we are desperately seeking help through your prayers. Right now they don't know which direction to take and truthfull there isn't a drug out there that has been successful on Renal Cell Carcinoma. For some patients they have found success while others it just doesn't work. To help you understand, tumor cell consists of two types: clear cell and non-clear cell, Natalee has the non-clear cell which is rare (10-20%) and then to break that down she has two forms of the non-clear cell which are crystalline and oblong and it is rare to have two forms of cells. She is unique!
It is our hope and faith that through all your prayers, the doctors will be led to the right information out there. There are alway new doors being opened, new studies, sometimes it could be combining two different drugs etc. So the doctors are tying to find the best avenue. If you could ask Heavenly Father, to guide the doctors in finding the correct course to take it, would mean the world to our family. We, our family, and others are having a special fast for Natalee, and would welcome anyone to join in the fast this Saturday/Sunday. THANK YOU SO MUCH!
Throughout this journey with Natalee, I have placed a jar called 'hope' high upon a shelf so that it has been in view at all times. At times the wind has blown hard and caused the door to slam shut, making it hard to see. After pulling ourselves together and making our way to the door, we have been able to open it, to let the light shine in. Letting us again see the 'hope' jar. Sometimes the storms have been so hard that the jar has been pushed into a dark corner, and after a lot of searching we have been able to put it in its right place. Today (Feb. 22) the winds have blown so hard that the jar fell to the ground and shattered in pieces. And with the door closed I am having a hard time pulling the pieces back together. Natalee had her scans today, and the results were horrible. The standard for this study was that if her tumors grew more than 20% they would have to take her off the drug. So today she was taken off the study and right now we have no avenue of what to do. They didnt tell us how much they have grown and truthfully I didn't want to know. They did mention that even though they didn't scan her abdomen area this time they could tell that the tumors in that location have grown. Both of the doctors from Emanuel and Doernbechers are trying to find the right option.
I usually wait for the storms to pass over where I can see the brighter picture before I write anything in the blog, but we are desperately seeking help through your prayers. Right now they don't know which direction to take and truthfull there isn't a drug out there that has been successful on Renal Cell Carcinoma. For some patients they have found success while others it just doesn't work. To help you understand, tumor cell consists of two types: clear cell and non-clear cell, Natalee has the non-clear cell which is rare (10-20%) and then to break that down she has two forms of the non-clear cell which are crystalline and oblong and it is rare to have two forms of cells. She is unique!
It is our hope and faith that through all your prayers, the doctors will be led to the right information out there. There are alway new doors being opened, new studies, sometimes it could be combining two different drugs etc. So the doctors are tying to find the best avenue. If you could ask Heavenly Father, to guide the doctors in finding the correct course to take it, would mean the world to our family. We, our family, and others are having a special fast for Natalee, and would welcome anyone to join in the fast this Saturday/Sunday. THANK YOU SO MUCH!
Friday, February 5, 2010
New beginnings with new drug
February 5, 2010
Natalee has been on her new chemo for 12 days, she seems to be handling this drug a little better. She was off chemotherapy for 4 weeks (scary) which gave time for the tumors to grow. This was necessary for the other drug to be purged from her body, before the new one was introduced. I thought that during this time she would bounce back, but instead she was worn out not feeling well for 26 days straight. Two days before she was to start her new treatment, she finally showed signs of her normal self.
The first day on this drug we had to be at the hospital from 8 AM till 8 PM for blood tests. The purpose was to see how active the drug was in her blood system. They drew blood the first half hour, then one hour, and then every two hours till 8:00. One of the downsides is she will be taking this drug for two years without any breaks. Yes that's no days off.
Actually they started this study on children in August of 2009 and is being tested in 27 locations throughout United States, Canada, and Australia. Natalee is the first accepted person here in Portland. All the clinics are on stage 3 of the dosage level (600 mg) They will increse the dosage if the patients are not responding to the drug, and as long as they are able to handle it.
Now for the update, Natalee feels better on this drug. Since she is a case study, her doctor wanted her to try the drug without using the anti-nausea pills to see her reaction. Gratefull she doesn't get nauseas from the chemo, this is exciting! She feels a bit nausea; but with the other drug she had to take an anit-nausea pill each time she took her chemo, and still felt like she was going to throw up. So far the side effects are; fatigue, migraines (daily), hiccups, and an upset system.
Some of you were aware that 'Make a Wish" was sending our family on a cruise to the Caribbean. We were to fly out tomorrow Feb. 6th, and be gone till the 14th. But with this new trial process we had to cancel our trip. "Make a wish", makes their schedules once a year for all 50 states, so we were lucky to get eccepted, their next scheduling won't be until November 2010, that is too far away. This was something that, daily, Natalee expressed her excitement for. It was the silver lining of her cloudy life. But as alway, Natalee accepts things really well and goes forward. Now the back up plan is for her to have a shopping spree!!!
As always PATIENCE is the agonizing pill; I want a normal life for my daughter right now! On the other side, Natalee is a pioneer for a drug that may prove to save others down the road. So though I want this over right now, I also want the integrity of this study to be accurate so that down the road they know what works best. We have to remind ourselves that some miracles are instant, while others take time, revealing itself one layer at a time.
Thank you for your prayers, concerns, and continuing on our journey.
Natalee has been on her new chemo for 12 days, she seems to be handling this drug a little better. She was off chemotherapy for 4 weeks (scary) which gave time for the tumors to grow. This was necessary for the other drug to be purged from her body, before the new one was introduced. I thought that during this time she would bounce back, but instead she was worn out not feeling well for 26 days straight. Two days before she was to start her new treatment, she finally showed signs of her normal self.
The first day on this drug we had to be at the hospital from 8 AM till 8 PM for blood tests. The purpose was to see how active the drug was in her blood system. They drew blood the first half hour, then one hour, and then every two hours till 8:00. One of the downsides is she will be taking this drug for two years without any breaks. Yes that's no days off.
Actually they started this study on children in August of 2009 and is being tested in 27 locations throughout United States, Canada, and Australia. Natalee is the first accepted person here in Portland. All the clinics are on stage 3 of the dosage level (600 mg) They will increse the dosage if the patients are not responding to the drug, and as long as they are able to handle it.
Now for the update, Natalee feels better on this drug. Since she is a case study, her doctor wanted her to try the drug without using the anti-nausea pills to see her reaction. Gratefull she doesn't get nauseas from the chemo, this is exciting! She feels a bit nausea; but with the other drug she had to take an anit-nausea pill each time she took her chemo, and still felt like she was going to throw up. So far the side effects are; fatigue, migraines (daily), hiccups, and an upset system.
Some of you were aware that 'Make a Wish" was sending our family on a cruise to the Caribbean. We were to fly out tomorrow Feb. 6th, and be gone till the 14th. But with this new trial process we had to cancel our trip. "Make a wish", makes their schedules once a year for all 50 states, so we were lucky to get eccepted, their next scheduling won't be until November 2010, that is too far away. This was something that, daily, Natalee expressed her excitement for. It was the silver lining of her cloudy life. But as alway, Natalee accepts things really well and goes forward. Now the back up plan is for her to have a shopping spree!!!
As always PATIENCE is the agonizing pill; I want a normal life for my daughter right now! On the other side, Natalee is a pioneer for a drug that may prove to save others down the road. So though I want this over right now, I also want the integrity of this study to be accurate so that down the road they know what works best. We have to remind ourselves that some miracles are instant, while others take time, revealing itself one layer at a time.
Thank you for your prayers, concerns, and continuing on our journey.
Monday, January 18, 2010
Door closes, but God opens a window...
This past Monday we received the results from Natalee’s, MRI and CT scans and it was heart breaking. Natalee’s tumors have grown, which also means that the chemo in no longer being effective. L Our first day with this news, we were in shock and felt like we had lost all hope. It was a bad, sad day at the Waltons. Since hope is what we rely on to keep us on the upside of life, I have anchored my hope and faith in the statement that ‘when a door is closed, God opens a window’. Sometimes we have to fall a little backward to go forward, and since that day of bad news, I have come to believe that this is the course. We have been informed of a new drug that was FDA approved in Oct. 2009 for advanced Renal Cell Carcinoma, (called Pazopanib Hydrochloride). It has been tested on adults (phases 1,2 & 3), but not on children. OHSU is now doing a clinical test (phase-1) on children with advanced carcinomas, where they cannot find a chemo that will help them. This makes Natalee a double qualified candidate. Monday Emmanuel called to try and get her in, but they were already full, so she is on a waiting list.
Three days later, today, Thursday Jan. 14, 2010, I have spent the day talking with Emmanuel and OHSU/Dornbechers. The great news, Natalee has been accepted into the program!! We are excited, nervous, and relieved but we really don’t know how this will affect her. It is a pill and has similar side effects as the one she previously was on, one concern is that it may cause high blood pressure. With blinders on, we cant see the picture our Heavenly Father has in store for us, but 3 months ago we didn’t have a backup plan if Sunitinib didn’t work and it worked long enough to keep her alive. Now amazingly we have a study right here in Portland. I will let you decide if this is a miracle, but no matter how you see it, it is great timing! As for our family we do believe in miracles.
*Prayer request: That the Doctors will speedily figure out the correct dosage for his patients (not just Natalee), with this new drug.*
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