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.
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