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)

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.

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.

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.