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!
Thursday, February 25, 2010
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.*
Friday, December 18, 2009
December 13
It’s the most wonderful time of the year! We love the holidays and more than ever, it has meant so much to our family. I now really appreciate the holidays being stuck right in the middle of the dead of winter, what a way to lift the spirits.
Natalee ended her round a week before Thanksgiving so by the time of the event, she was feeling more her self. November’s round of chemo was more difficult for Natalee; she spent more time lying down and very tired. For Thanksgiving, all of the family was home for the whole week, and I have to give a lot of thanks to the Gwynn family for bringing that about (Ryan’s in-laws). We went to our friend’s beach house on the Tuesday before and enjoyed our Thanksgiving there. On Wednesday we were able to go down to the beach with the most perfect fall weather you can ask for. No wind, the sun was out, and it was in the low 60’s. We just relaxed, played football and laughed together. It is a day that was a picture perfect memory for all of us. Thanksgiving day it rained all day, but who cares when you’re stuffing yourself all day, watching football, playing games etc. We came home to Tigard, to have our Christmas on the weekend, since Ryan and Lindsay will be spending it with her family. It was a wonderful week!!!
With the Thanksgiving month just past, our hearts have been filled with so much gratitude. I am amazed at the beautiful people that we have been graced with. THANK YOU SO MUCH!! There are too many people that have carried us that it would take about 5 pages to write them all down. There is one group that I feel I have not personally thanked. Starting way back from the beginning, (seven months) our hearts were filled with the compassion that the Conestoga students, parents and staff, extended to us. Thank you for your generous gift by way of a financial contribution, your prayers, and words of comfort, the youth rallied behind Natalee, and we felt the spirit of all your prayers and concerns for her. You really lifted her up.
Update on Natalee; she has gained 20 pounds!! Who would ever think we would be delighted to gain that much. At the end of this round she will be scanned to see if there are any changes.
December’s round she is doing great!! She started this round on Dec. 1st , the first 11 days, she was doing so well and able get up and be normal, feeling a little fatigued and dizzy, This is a first for her to be on it that long and not have her to where she is unable to get up from her bed. Usually day 4 is where we see a major change. Such a marvelous thing!!! The great thing is since she was doing so great she was able to go with the youth from our church to the Temple; she came home so elated!
Currently Natalee is not feeling well but she is already half way through this round. She will finish on Dec. 28 just in time before school starts up, to which we are planning on starting up again.
Monday, November 2, 2009
One little dot makes all the difference
This is GREAT news all because of one little dot ! I decided to send you my journal entry of that day. Natalee has had a couple hard days but is doing well now. Day 4 on her chemo alway seems to hit her hard so she was down till Wednesday. :-)
October 28, 2009 Wednesday
Today was our visit with the doctors, we saw Dr. Norwood; Natalee’s blood counts looked good. I wanted to know his opinion as to whether she should go to school with the swine flu being a concern. His reply was that usually he is for kids attending school as much as they can, but with the concerns of the swine flu, he felt it would be a good idea not to go. Since Nat is being tutored and it is more for the social needs she would rather stay home. So Friday will be her last day, which might be until the springtime.
I asked him if I could get the reports on what the sizes of the tumors are. So at the end of our visit, he printed out the report. He copied what was at the beginning and then last week's results. Way back when we had our first MRI and Dr. Olsen gave us the results, she gave us the measurements of 23 cm, 35 cm, 36 cm and 12 cm. With Natalee standing right there I didn’t want to emphasize the size by blurting out "Really 35 CMs?" I was shocked and could not figure out how this possibly could be. We were looking on the monitor, which showed the numbers. They were rather small to read but I still questioned her about them being centimeters not milimeters, and how they possibly fit in her lungs without causing some difficulty. So still back in my head I could not absorb this fact so I wanted to see it written on paper. This was the main reason for the request. Well, as I got in the car and started to look over the report I was totally amazed with what I read. The tumors were 2.3 cm and 3.5 cm and 3.6 cm and 1.2 cm - what a significant difference a digit can make. This means that her largest tumor which we thought was 35 cm (almost 14 inches) is actually 3.5 cm (with the decimal in there) it is just over 1 inch (1.18 inches). I was elated! I immediately called Kent to inform him, I could not hold back my emotions, this makes a world of difference on how my baby can have a quality of life. Everything became silent and it was obvious that Kent was also crying. This is the best news I have had for a long time, and it really changes my hope. I am grateful for that unsettled feeling I had just to make sure. I know God wanted me to have peace in my heart during this unsettled time and I felt it today in a magnificent way. This has been a heavy burden that has been hanging over me since we were told back in August.
So the wonderful news is the 4 largest tumors in her lungs are 1.1 cm, 1.7 cm, 3.1cm and 3.5 cm. She also had numerous fibrous tumors and nothing was mentioned in the report about them. Though this was not brought up by the doctors, in the report it stated that there is some activity in her spine on #1,#2 and #3 vertebrae but her spinal fluid still looks healthy.
Ok, MRI report for her abdomen area: the tumors have not grown! This was the area that showed some growing activity in our last report. I was expecting the worst today and that was a major relief to know it has been halted. So today is a marvelous, wonderful day. All because of one little decimal point, I love math!
October 28, 2009 Wednesday
Today was our visit with the doctors, we saw Dr. Norwood; Natalee’s blood counts looked good. I wanted to know his opinion as to whether she should go to school with the swine flu being a concern. His reply was that usually he is for kids attending school as much as they can, but with the concerns of the swine flu, he felt it would be a good idea not to go. Since Nat is being tutored and it is more for the social needs she would rather stay home. So Friday will be her last day, which might be until the springtime.
I asked him if I could get the reports on what the sizes of the tumors are. So at the end of our visit, he printed out the report. He copied what was at the beginning and then last week's results. Way back when we had our first MRI and Dr. Olsen gave us the results, she gave us the measurements of 23 cm, 35 cm, 36 cm and 12 cm. With Natalee standing right there I didn’t want to emphasize the size by blurting out "Really 35 CMs?" I was shocked and could not figure out how this possibly could be. We were looking on the monitor, which showed the numbers. They were rather small to read but I still questioned her about them being centimeters not milimeters, and how they possibly fit in her lungs without causing some difficulty. So still back in my head I could not absorb this fact so I wanted to see it written on paper. This was the main reason for the request. Well, as I got in the car and started to look over the report I was totally amazed with what I read. The tumors were 2.3 cm and 3.5 cm and 3.6 cm and 1.2 cm - what a significant difference a digit can make. This means that her largest tumor which we thought was 35 cm (almost 14 inches) is actually 3.5 cm (with the decimal in there) it is just over 1 inch (1.18 inches). I was elated! I immediately called Kent to inform him, I could not hold back my emotions, this makes a world of difference on how my baby can have a quality of life. Everything became silent and it was obvious that Kent was also crying. This is the best news I have had for a long time, and it really changes my hope. I am grateful for that unsettled feeling I had just to make sure. I know God wanted me to have peace in my heart during this unsettled time and I felt it today in a magnificent way. This has been a heavy burden that has been hanging over me since we were told back in August.
So the wonderful news is the 4 largest tumors in her lungs are 1.1 cm, 1.7 cm, 3.1cm and 3.5 cm. She also had numerous fibrous tumors and nothing was mentioned in the report about them. Though this was not brought up by the doctors, in the report it stated that there is some activity in her spine on #1,#2 and #3 vertebrae but her spinal fluid still looks healthy.
Ok, MRI report for her abdomen area: the tumors have not grown! This was the area that showed some growing activity in our last report. I was expecting the worst today and that was a major relief to know it has been halted. So today is a marvelous, wonderful day. All because of one little decimal point, I love math!
Monday, October 26, 2009
October 26, 2009
It has been short of a week since we received the results of Natalee’s scans. Though I wanted to do this sooner my emotions would not allow me. I have learned to take the information and put it on the shelf (so to speak) instead of internalizing it. But this time I took what was given and stored it in my heart and for that reason my heart has been heavy. The results we've received so far are from the CT Scan on the tumors in her lungs. We were told her tumors did not shrink. We were disappointed beyond all description. The Doctor emphasized that the purpose of this chemo was to halt the growth and this is great news! So good news is that they have not grown. It is our hope, and through much prayer that her tumors will be at bay until God's design can take place.
I know He who created all things and gave us our lives, is our architect. He has a grand design for each of us, if we seek for His help; it is just that I want what seems to be right to be done now. The truth is perfection takes time, and for Natalee to be healed and someday have a cure for this cancer is going to take time.
This coming Wednesday we will get the result from her MRI, which are the scans of her abdomen, back and pelvic area. Last time there was growth, so I will be thrilled to hear that they haven’t grown.
Natalee is on day 5 of this round. She seems to have a pattern where the first 3 days she does fine and then day 4 it hits her, which is the case. We decided to time our Girl Scouts Planning Party around her. Luck had it, on day 3 we made pizza, did some planning and watched a movie. She loved every moment of it, especially having her friends over. The next day, Sunday, Natalee woke up feeling nauseas, dizzy and very weak. It is reminding me of her first round though she said it is not as bad.
We believe in the power of prayer and ask that you continue to ask God to: #1 Inspire and direct those who are researching to find a cure for this type of Kidney Cancer. That the Spirit will help them be able to see with a clearer mind that which needs to be opened to their understanding. #2 That her doctors will take the right course of action, even if it means that she is sent to a specialty hospital for research. God is a God of miracles, and prayer is a big part of that process.
We love your visits and welcome your calls, our number is 503-590-4922.
It has been short of a week since we received the results of Natalee’s scans. Though I wanted to do this sooner my emotions would not allow me. I have learned to take the information and put it on the shelf (so to speak) instead of internalizing it. But this time I took what was given and stored it in my heart and for that reason my heart has been heavy. The results we've received so far are from the CT Scan on the tumors in her lungs. We were told her tumors did not shrink. We were disappointed beyond all description. The Doctor emphasized that the purpose of this chemo was to halt the growth and this is great news! So good news is that they have not grown. It is our hope, and through much prayer that her tumors will be at bay until God's design can take place.
I know He who created all things and gave us our lives, is our architect. He has a grand design for each of us, if we seek for His help; it is just that I want what seems to be right to be done now. The truth is perfection takes time, and for Natalee to be healed and someday have a cure for this cancer is going to take time.
This coming Wednesday we will get the result from her MRI, which are the scans of her abdomen, back and pelvic area. Last time there was growth, so I will be thrilled to hear that they haven’t grown.
Natalee is on day 5 of this round. She seems to have a pattern where the first 3 days she does fine and then day 4 it hits her, which is the case. We decided to time our Girl Scouts Planning Party around her. Luck had it, on day 3 we made pizza, did some planning and watched a movie. She loved every moment of it, especially having her friends over. The next day, Sunday, Natalee woke up feeling nauseas, dizzy and very weak. It is reminding me of her first round though she said it is not as bad.
We believe in the power of prayer and ask that you continue to ask God to: #1 Inspire and direct those who are researching to find a cure for this type of Kidney Cancer. That the Spirit will help them be able to see with a clearer mind that which needs to be opened to their understanding. #2 That her doctors will take the right course of action, even if it means that she is sent to a specialty hospital for research. God is a God of miracles, and prayer is a big part of that process.
We love your visits and welcome your calls, our number is 503-590-4922.
Friday, October 2, 2009
Day 142 - Would love more prayers
This is Natalee’s 3rd week on chemo and it is where her body starts taking a toll on her. The flip side, she has one week left and then she will be on her 2 week break - yay! This last visit to the doctor wasn’t too promising. Her platelet counts are very low, an average platelet count should be between 140 – 440; Natalee is at 42 units. The concerns are that she can bruise easily and bleed excessively. The doctors told us that if she starts to bleed out of her mouth or have blood in her stool, she needs to get in asap as this is a sign that she might be hemorrhaging internally. She needs to be careful because they don’t want her to get bumped or hit in the head. Natalee has several bruises on her arm and around her eyes and nose where she keeps rubbing, so if her count gets much lower they will do a platelet transfusion.
They are also concerned about her liver as all her readings were very high and that is a first for her. Her LDH is 481, usually her numbers are around 250 – 300 (the normal range is 100-275). If you can say a special prayer asking that her liver will not be affected we would be grateful. It is the liver that helps the tumors to respond to the chemo. Just one more week and then we can give her poor body a rest and give her blood cells time to rebuild.
The doctor asked Natalee how school was going and she had to say that she has only gone five times in the first four weeks. The doctor’s response was that she wasn’t expecting her to go that much since this specific chemo really makes the patient very tired. That was a relief to both Natalee and myself. It has been so hard for her because she really wants to go to school. Some days after she gets ready she is so exhausted that she can’t make it, but most of the time she is not feeling well. Most days her home tutor is able to come and teach her for one hour. Natalee is able to read a lot, she has read (the 7th grade reading) “The Lightning Thief” plus the other four books in that series. This summer she has also read a lot of books. There were several kids from school that gave her books to read, thank you; they have helped her through this time.
-Sherri
They are also concerned about her liver as all her readings were very high and that is a first for her. Her LDH is 481, usually her numbers are around 250 – 300 (the normal range is 100-275). If you can say a special prayer asking that her liver will not be affected we would be grateful. It is the liver that helps the tumors to respond to the chemo. Just one more week and then we can give her poor body a rest and give her blood cells time to rebuild.
The doctor asked Natalee how school was going and she had to say that she has only gone five times in the first four weeks. The doctor’s response was that she wasn’t expecting her to go that much since this specific chemo really makes the patient very tired. That was a relief to both Natalee and myself. It has been so hard for her because she really wants to go to school. Some days after she gets ready she is so exhausted that she can’t make it, but most of the time she is not feeling well. Most days her home tutor is able to come and teach her for one hour. Natalee is able to read a lot, she has read (the 7th grade reading) “The Lightning Thief” plus the other four books in that series. This summer she has also read a lot of books. There were several kids from school that gave her books to read, thank you; they have helped her through this time.
-Sherri
Subscribe to:
Posts (Atom)
