December 13

December 13, 2009

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.

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 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.

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

Pictures from Triliium Lake...

Day 124

Natalee is still getting stronger and feeling better. Before her surgery she had a lot of pain in her back due to what later we found out was the tumor that was pushing on her spine, then later it was the bone cancer which has constantly caused her discomfort. Exciting news: the past four days she has had no pain on her spine. That is a good indication that she has to be getting better. To what extent we don’t know for they didn’t do all the testing that they did at the end of her first round. That will happen at the end of this 3rd round which began this past Thursday. They did do an EKG and an Ultra Sound on her heart plus a Thyroid test.

Some of you may be wondering about schooling. Every day Natalee has a tutor who comes to the home and teaches her for an hour on Math and Language Arts. Then the last two hours of school 5th & 6th period she attends Science and History. The school has been so accommodating and wants to help Natalee be a part of the school experience. They are taking in the account that there will be times she will be missing her classes and will be lenient when it comes to her homework.

To celebrate the first week of school a friend invited her over for a sleepover. I told them she would not be able to make it through the night. Much to our surprise she stayed through the night and did so well. That is progress!

I would like to share one thought. The emotional and physical storms that our family has experienced from the beginning have settled. We have adjusted and learned to handle what comes our way. Part of this journey is seeing the tender mercies in the daily events of our lives. I feel God has given us comfort when we’ve needed comfort, opened doors and lightened our paths when we have had to make difficult choices. Our eyes have been opened to a clearer understanding, and I feel His grace upon us. We have been attended with so many kind-hearted people that have reached out to us. We are not free from worry but our burdens have been lightened, that I could say, we have peace. Natalee ceases to amaze us with her calmness and inner strength that she carries.

Day 111 - No News is Good News

I am sure that many of you are wondering and worrying about Natalee since I haven’t posted any updates for several weeks. With the adage, ‘no news is good news’ that is true is this case. Just to give you a little window, sometimes with me coping as the mother of a cancer child, I chose to let this area go.

Natalee is done with her 2nd round. It has been 3 ½ months since all this has begun. We were given a wonderful gift from John and Patrice Parsons who have a mountain home at Government Camp, thank you my angels. We were able to stay there for almost a week, it was a wonderful retreat for our family. Nat's sisters, Janna and Britanee were able to stay there before they took off for college. They have been a real life saver during this time and have lifted our spirits so much, as also Nicole (our senior at Southridge HS). Natalee has not been as sick this time around but has experienced a lot of fatigue. Last round she always felt like she was going to throw up and hurt all the time. The doctors have said that because of the cells constantly changing, each round she will react differently, so we don’t know how she will be from round to round.

Tomorrow we are meeting with the teachers, principal and A house counselor to discuss how Natalee can hopefully attend a few classes. It is all an experiment at this stage, but the intent is for her to attend 2 classes at the end of the school day mainly for connections and then be tutored at home for the other required classes.

Check in a few more days and we hope to have some pictures from our beach and mountain trips!

There are many people that are reading Natalee's blog, to all of you, you are our friends, thanks for caring.

Day 84 - Tuesday Aug 5

On Tues, Aug 5, Natalee went for her weekly visit with the doctors. They were surprised and excited to see how well she is doing compared to her first round. In fact, she has had three amazing weeks of feeling good, she has been able to walk and has had so much more energy to do things.

This past weekend we went to Oceanside and stayed at a friend's beach house, she said that helped her feel normal and was the best medicine just to be able to get away from being confined to the house. It was nice to see her laugh and be happy. Thanks Tim and Dana.

Natalee has put on enough weight to not be on the NG tube. Her appetite has improved and she is determined to eat even if she doesn't feel like it. I think having a tube down your nose is motivation enough, even if the food tastes like cardboard. Her favorites are still Orange Chicken and Taquito's.

One of the main reasons Natalee is feeling so much better is because she is now on thyroid medication (Levothyroxine). It is not unusual for someone on chemo to have their thyroid affected. Because of this Natalee will always be needing this medication even after she is over this journey.

Natalee's hair is changing colors, at first I noticed the part in her hair was getting wider, thinking she is losing her hair. Her sister Britanee was braiding her hair, and she noticed her hair is going white, giving the illusion that her hair was thinning.

Before Natalee started her chemotherapy Jenni Price came over and took some pictures of her. You can view here photos on her website: jennipricephotography.blogspot.com Click onto clients then scroll down to Walton. Then on the upper right corner you can click to view all 50 photos. If anyone can make me look good is a great photographer. You are awesome Jenni!

So many of you are telling me that you are still praying for Natalee. I can feel your prayers and know they are helping us so much. Thank you for your faith and prayers.

Day 76 - REVISED

NOTE: I had to edit this, because originally I listed all the tumor sizes in millimeters, which (sadly) is incorrect. Sherri confirmed that the measurements listed below should be in centimeters. :-(
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Today was the big meeting with our Doctor regarding their findings from the CT and MRI. Dr. Olsen said there is some good news; she never specifically said "the bad news is…" but you could figure that out on your own.

There are 4 large tumors that they were paying a lot of attention to. I was shocked at how large they are. The first one they showed us was 13 cm. OK, I can deal with that, especially since it is now down to 11 cm. The next one was 22 cm, down to 17 cm. There are two behind her heart and one was 36 cm, down to 31 cm. and the other was 35 cm, but had no change. So, the good news is that the chemo has shrunk the tumors in her lungs. This is great news in the long run, since this is the area that is the most life-threatening.

Natalee has some remaining tumors from her surgery that are in her pelvic and stomach area. They have actually grown a little. The Doctor felt it is probably because after the tumor was removed, the existing tumors got the information that there was now "room to grow." Since her tumor was large (the size of a football), it was only the outside that was actively growing. Additionally, in the area where the tumor was pushing on her spine we found out that it had invaded the bone and she does have a small amount of cancer in the bone.

Though some of this information is concerning, it is still hopeful knowing that the drug is being effective, especially in her lungs. One of the things the Doctor impressed upon us is that the Sunitinib (the drug) may not get rid of the cancer entirely, but in time it will be able to be maintained.

So with a little bit of a broken heart, we still know that there is good news, and that is what is important. I do have faith that Natalee will be cured completely of this cancer, it just will not be on my time. I do know that God has all power over every element, He created all things, even our bodies. Whether it is through God's hand personally, or Him divinely inspiring the Doctors and research teams, in time we will see the cure. There will be an end to all this.

We have had the most beautiful 1 ½ weeks. Natalee has been able to walk and eat, laugh and enjoy her friends and family, and to me that has been priceless. She will be starting her next round of chemo this Thursday. I am amazed at her strength and her constant willingness to endure what she has to endure. Nat never complains, she is truly a mighty angel.

Prayer requests:

1. That the chemo will affect the tumors in her stomach and pelvic area.
2. That the chemo will continue to shrink the tumors in her lungs.
3. That there will not be any cancer in her bones
4. That Natalee will be able to endure this round of her chemo.

Day 64

Exciting news, Natalee has gained 3 lbs., and is off her chemo for a two week break!!! I noticed a big difference in her after one day on the NG tube. Before she wasn't able to pull herself up, I was doing all the work, so it was really exciting for her to have the strength to do it on her own. I know she is feeling better because when we went to Target she was chasing me around in her Wheel Chair.

She has been able to walk a little and hopefully by next Tuesday's visit there will be some major improvements. The Doctors felt that much of her decline was due to her weight loss, as it compounded her illness. To help others understand, chemo makes the cells change, which in turn alters the taste buds. So for her, sweet things are too sweet, and other things are too salty, spicy foods burn and the rest of the foods are bland. Who would ever think a kid would not like Ice Cream? Nothing tastes good except Orange Chicken & Chow Mien from Panda Express. It doesn't make sense but I am glad she likes something.

On Thursday (today) Nat goes into the hospital; she will have an MRI, followed by a CT scan, X-rays and finally an EKG. They will put her out for the first two (the MRI last 1 1/2 hours so I am glad she will be asleep). We will be at the hospital from 11:30 and the last appointment is at 3:45 pm.

Next week our Church is having girls camp, the plan is for her to go see the doctors on Tuesday, where they will give us updates on what they saw in the films, and if the tumors are shrinking. They will take out the NG tube (temporarily) so that she can go up to camp for the last three days. We are so excited for her to have a little bit of a normal life. After she gets back from camp she will go in and they will put the NG tube back down her nose. The Doctors want her to have the nutritional supplement for several months.

Natalee's talk is nasal so I have fun with misinterpretations...we do have a lot of laughs!

Thank you for all your prayers and support.

Day 56

A note from Sherri:

Natalee had a bad weekend and couldn't get out of bed for 3 days. I just get so excited when she does good and I really don't like to share the bad side of things. We went to the doctor [on Tuesday] and she lost another 2 lbs. They felt it was important that she gets in-home care so they put a tube down her nose and the in-home service will come in and give her supplements (liquid food). She really is just skin and bones and pretty much lives in her bed. She hates the tube so when they told her that they had to do this she just cried, that was one of the most horrific things she remembers in the hospital. It was hard to see them try to get the tube down to her stomach, but the tube is small so she can eat food even though the tube is there. They want it to be in there for several weeks.

Yesterday we were at the hospital from 11:00 till 5:00 pm so please let everyone know that I really appreciate the meals. I was so emotionally worn out that it was nice to come home and not worry about getting a meal together.

On the positive note, my kids came up for the 4th so every one was here plus my sister and several of her family members, so we ended up having 18 people for the holiday. It was a bitter/sweet weekend, but I wouldn't change it.

Day 53

Natalee had a good week. No major side effects or complications. She is very tired and doesn't walk much so the Doctor asked her to do 6 laps in the back yard or about 3 laps of a basketball court.

Dr. Olsen was very pleased that she her side effects are minimal and so are we! The blood test results are positive as her white blood and red blood counts are normal; her immune count was good. The best results were her LDH is 503; last week it was 600, so this is how they know that the chemo is working on her tumors. YAY! Life is beautiful!

Recent Pictures

Thanks for the party!!

Forgive my indulgence

As a patient, the hardest time can often be the treatment course or the healing process. I am not a psychologist, but my five major surgeries in the last seven years have given me a unique perspective. I've struggled with writing this for many days now, but am hopeful that sharing my experience generally will help Natalee & her family. Please know that I mean no disrespect to Natalee since her condition is very different and more serious than mine is and I am not attempting to speak for Natalee. I do know that understanding how it feels to be the patient of a life-changing medical event has helped me to be more empathetic.

When I was diagnosed with hip dysplasia the day before my 30th birthday, I was crushed and in denial. I'll be honest and say that there are many days that I am still "in denial" of the reality of my condition. My first reaction was an immature "I told you that something was wrong my hip" but the reality was that I was terribly frightened about what it meant and what changes I would be forced to make. My condition is in no way life-threatening, so I cannot imagine how much more difficult this would be with a cancer diagnosis.

At the initial diagnosis as well as the surgery there is a surge of service that is so comforting. It eased so much of my burden knowing that there were so many people who could and would take care of me and my family. Each time I learned about the need for another surgery or underwent the operation, the outpouring of love and prayers helped me to feel a lot of peace. Especially during and immediately after surgery. My family was the recipient of countless acts of love and service; people brought us dinner, cleaned our house, did my laundry (yes, it was embarrassing, but I was so grateful), showed up randomly to clean gutters and mow lawns, drove our kids places, visited, sent cards and emails and called. It was overwhelming and inspiring and so very appreciated.

For me, the difficult time came about 4-5 weeks after each surgery. I would feel better since the worst of the pain had passed, but still faced a year-long recovery. I started feeling guilty about the meals that were coming to the house once I wasn't bed-bound. I was on crutches, but I was getting to go places and started to feel more mobile. I did a pretty good job of hiding any pain or discouragement I was feeling because I didn't want to be a "downer." People continually asked how I was doing, and I got tired of the honest answer being "not good," so I was always ready to smile and say that I was improving.

I was well-enough to get around, but not healed enough to do basic things like laundry or cleaning. Even though people offered repeatedly, I struggled with accepting help because I already felt like people had done enough and surely there were people with greater needs than mine. My visiting teachers were so good to me each time, and always offered to do more, but I always felt like somehow I would be taking advantage of the help.

It was very easy to get discouraged during this time because I felt like I was completely out of the loop. Life goes on for everyone, as it should, but because I couldn't do the same things and same activities, I felt disconnected. It was partly a situation of my own making, and yet I didn't know how to fix it. It sounds terribly immature, but often in group settings I felt awkward because there were inside jokes that I didn't understand (I have learned to hate the phrase "you had to be there") or experiences that people bonded over that I wasn't able to participate in. This was the time that I needed the most support. There wasn't anything new or exciting happening, just the everyday recovery experiences along with the roller coaster emotions, but I needed people to keep walking my journey with me. I was incredibly blessed all five times to have friends and family tough it out the entire time. Luckily, I'm done with the surgeries, because I don't know if they would hang around for a sixth one. :-)

I do not know if Natalee is feeling like this or not, but regardless I do know that they need us to step forward with love and encouragement now more than ever. The initial crisis has passed, but with Natalee's condition we need to continue to pray as fervently as we have in the past. We need to keep doing everything we can to keep her "in the loop" as much as she wants to be. I've been impressed with how much Natalee's friends have done for her and want you to know that your love and service are genuinely felt and mean more than you know.

Day 42 - Good Days & Bad Days

The chemo treatment has gone smoothly some days and other days are just plain rotten. The pharmacist cautioned Sherri to make sure that Nat took her anti-nausea pill every four hours without fail, since this is a very harsh drug. The first few days she did really great and was eating and moving around. Then she felt pretty sick, was in pain with light and sound sensitivity. She slept a lot, had a fever, said that foods tasted metallic (she said that her two favorite foods, bacon and lasagna tasted horrible), and ended up losing 8 lbs. However, she is doing better now and the fever is gone so we are hoping for better days. The good news from her doctor appointment yesterday is that her white & red blood cell counts were at the top of the scale chart...yay!!

One of the things that Sherri has learned about the drug is that it attacks the fast growing cells (the cells with the fastest turnover rate). Unfortunately, besides the cancer cells, other things like hair, fingernails, skin, and the lining of the stomach are also fast growing cells, which is why chemo patients often lose their hair. With Natalee, the greater concern is that she could break out with a rash on her skin: inside of her stomach, inside of her mouth, and then of course her hands and feet. This isn't a guaranteed side effect, but it is likely to happen and would be very uncomfortable. Sherri would like us to pray that the chemo will put more energy on the cancer cells and not on her "good cells."

At the beginning of this ordeal, we requested a little bit of breathing space for the family and everyone has been very respectful of that. However, now they need less breathing room and more hugs and support. Sherri would really welcome phone calls and visits (call first:503.590.4922). If it isn't a good time, she won't answer the phone, so don't let that stop you from calling her or Natalee up to offer your love and support. These times can get lonely and discouraging now that certainty of Natalee's condition is known and the treatment course is set, so please continue to pray for Natalee and her family to be uplifted during the struggles ahead.

Day 34

Wahoo! Natalee has put on 4 lbs and her energy is increasing. She was able to attend the last day of school and zoomed all over field day in her wheelchair. I've posted pics taken that day:

She started on her medication last night (Monday 06/15). It has taken all this time to get the insurance to cover the treatment because it costs approximately $7,000 per month. In retrospect, it has been nice not having the meds covered simply because it has given her extra time to heal and strengthen before she starts down this rough road. Our prayers are needed now as much as possible that the drugs will shrink the cancer nodes and that Natalee will be able to cope with the side effects.

Day 28

Natalee had a follow-up appointment yesterday with her surgeon, Dr. Sanjay Krishnaswami. He felt like Natalee was recovering well. He had some concerns before the surgery that she may have scoliosis because the tumor was in the back area and was actually pushing on her spine. However, he feels like that isn't anything to worry about now, so great news. He definitely wants her to gain some weight, and Sherri says that Natalee is finally getting an appetite, so bring on the milkshakes & high-caloric foods!

They were also able to visit with her oncologist, Dr. Olsen, as well. She had some pretty exciting information. At our last visit, Sherri told Dr. Olsen that she felt inspired that Dr. Olsen needed to contact research centers in Arkansas & Pennsylvania. I remember the look on Dr. Olsen's face when Sherri said that - a combination of "I-guess-it-can't-hurt" and "is-she-crazy?"

Surprising only to Dr. Olsen, she announced that when she contacted Arkansas Children's Cancer Clinic, she learned that they are doing some breakthrough research on RCC with a drug that is being used in India & Europe. She said that Sherri's "premonitions" must be right. Dr. Olsen is going to be very active following this new drug, and she was very excited about it and will consider using it to treat Natalee. It is important that we get Natalee started on her treatment right away, so she'll start taking the Sunitinib, keeping our eyes on this new drug.

Clarification: Originally when we were learning about Nat's treatment options, we were told that RCC did not respond to traditional chemotherapy. While that is still true, the drug Sunitinib is still considered chemotherapy. Generally, the term "chemotherapy" refers to treatment of disease by chemicals, and is mostly used to describe cancer treatments. Sorry for any confusion this may have caused.

Day 24

From Sherri:
To all you beautiful people that have offered prayers, best wishes, warm comments, you have given great synergy through your faith and positive thoughts, THANK YOU. You have lifted our family in times when we couldn't pick ourselves up.

I know we have had wonderful miracles under God's hands, and we will see more. His tender mercies have given us so much peace, comfort and hope when it seemed impossible.

Natalee’s treatment is all-iffy. Since it is an experimental drug it may or may not work. There is a long list of side effects; some could be long lasting others that could be harsh during treatment.

These are the miracles we are asking that you pray for:

1. That this drug will be effective on Natalee’s tumors that is in her lungs, and any remaining cells from her surgery.
2. That her body can endure the treatment.
3. That her body will increase in health and strength (she has lost another 8lbs. in one week).
4. To protect her other kidney and that she will never have a recurrence of this cancer.
5. That the tumor that was sectioned and sent to many cancer clinics will find answers for a strong cure of this cancer.

Again thank you for your continuing prayers, for your calls, concerns and most of all for the visits, it is good for Natalee.

With grateful hearts,
The Walton family

Day 22 just a few more that wouldn't fit in the other post

maneuvering the wheelchair down all the walkway stairs

McKenna, Madeline & Nichell

Day 22 - Yesterday's meeting with the doc

Kent, Sherri & Natalee met with Dr. Olsen, Natalee's oncologist, yesterday (I hung out in the room too, so I could understand the treatment plan and be able to share it on the blog). Dr. Olsen consulted with several different doctors and cancer centers to help determine what the best course of action would be. She spoke with Dr. Brendan Curti at Providence Cancer Center, with the doctor at MD Anderson Cancer Center in Houston who is running the clinical trial as discussed earlier, as well as oncologists at the Mayo Clinic and UCSF (where they are currently running a clinical trial on the drug that Natalee will be using).

After analysis and testing on the tumor, they were able to determine that there were a great deal of VEGF proteins in the tumor, which gives them information on what the cancer's characteristics are and how to fight or supress.

Dr. Olsen decided to place Natalee on sunitinib (phonetically, it is sue-NIT-tin-ib, the brand name is Sutent). She will take 37.5 mg once a day (in capsule form), every day for 28 days. Then she will take a drug holiday for 14 days. Those two events are considered one cycle. She will undergo 9 cycles of treatment. At the end of each cycle there are tests and scans to measure and assess how effectively the drug is working.

The side effects that the doctor is most concerned about are:

• hand-foot syndrome
• diarrhea
• high blood pressure

Some other side effects could include:

• nausea
• skin discoloration
• it could make her hair lighter in color
• altered taste

As a result of the side effects, Natalee will have to limit her involvement in basketball and volleyball. :-( She needs to keep her body protected from any activity that is jarring on her bones.

Natalee has three separate groups of enlarged nodes, two on her left lung and one on the right lung. At the beginning of the second cycle of treatment, they will take another full set of bone scans and then again at the beginning of every even-numbered cycle (fourth, sixth, eighth) to see if the spots in her lungs are shrinking. Most likely, after the insurance authorizes the medication (it costs approximately $7,000 per month for this drug), they will start the treatment next week, maybe Tuesday or Wednesday.

Today marks the 14th day after her surgery, and she was able to go to the appointment yesterday with absolutely no pain pills. Not even Tylenol! She looks great and demanded a milkshake and fries on the way home from the appointment, as she needs to put on some weight.

Just one more note, Natalee needs to avoid grapefruit juice and St. John's Wort while she's on the sunitinib. So if you were planning on making her cookies laced with St. J's Wort, you'll have to scrap those plans. I'm pretty sure she'll prefer chocolate chip anyway. ;-)

Day 22 - More Pictures

After surgery pics - look how great she looks!

with Meleah & Mackenzie

with Madeline & McKenna

candy bar poster made by her Beehive class (at church)

Janna pushing her in the hospital garden

Brittany's college roommate (Sarah, I think) & Brittany with Nat in the hospital

Day 22 - Pictures

Some pictures of Natalee just before surgery with her family

With Ryan

With Janna, Ryan, Nicole & Brittany

Everyone! Sherri, Janna, Kent, Ryan, Lindsay (Ryan's wife), Nicole, Brittany & Natalee of course

Day 20

No news is always good news! I have nothing to post except that there are at least 15 new pictures that will be going up on the slideshow shortly. Oh, and Sherri & Kent will meet with the oncologist tomorrow to discuss a treatment plan, so when I hear how that goes, I'll post and let you know!

Day 18

Natalee loves being home!  The weather has been amazing and she has buoyed her spirits.  Her pain is lessening and she may be able to switch to just Tylenol shortly, which is not surprising to those of us who are expecting miracles, but truly a miraculous event so soon after such major surgery.  

She has enjoyed having visitors and really loves being taken for wheelchair rides.  The weather is supposed to be gorgeous this week, so call to see if you can come visit Natalee and take her and the wheelchair out for a spin.  She would love having friends come over to play games too.  The Walton's have some games, but it is always fun to try new ones too.  

I thought I would address some of the questions that Sherri (or myself) get asked about Natalee and where we are going from here.  Kind of Natalee's own FAQ:

Q. Did they get all the tumor out in surgery?

A. The surgeon said that he cleaned it out as thoroughly as he could, however, the cancer can consist of microscopic particles.  Essentially, the doctors do not know if they got it all.

~~~~~~~~~~

Q. When we Natalee start her treatment for the remaining cancerous spots?

A. The plan is to let Natalee's body heal from the surgery so that it can be strong enough to withstand the harsh effect of the cancer treating drugs.  They said initially that it could be anywhere from 2-4 weeks after surgery.

~~~~~~~~~~~

Q. Will she be traveling to Houston to see the doctor who is running the clinical trial as discussed in previous posts?

A. At this point, the oncologist isn't sure that is the best course of action.  The difficulty with sending Natalee to see that particular doctor is that he has never worked with pediatric patients who have RCC.  In fact, that is a huge difficulty at this point.  There are several doctors (even some great ones locally), who have a great deal of experience with RCC, but none of them have experience with the pediatric disease.  The cancer has to be treated much differently in a child than an adult for many reasons.  

The doctors are searching everywhere to try to find a single doctor who has treated a child with RCC and haven't had any luck yet.  There is no data out there due to the rarity of the disease occurring in children.  In fact, Natalee's tumor is the first pediatric RCC tumor that will be tagged for research in the United States.  Kent has read that it is estimated that only 2 children per year are diagnosed with RCC in the entire United States.  

So we are asking people to pray fervently that the doctors will be able to find someone who has treated a pediatric patient with RCC.  

~~~~~~~~~~

One last note, as Natalee's condition changes less rapidly, there is simply less to post.  I will post as often as I have information and am still looking for people who have taken pictures from visits or videos that I can post here.  Sherri is also hoping to write something for the blog as well; but obviously, she has a lot going on right now.  She does sincerely want everyone to know how much your prayers have meant for their family, and she is truly grateful for all the help and support. The meals and lawn care and household help has been amazing and a real blessing to them all. Thank you again.

Natalee is home!

Just got word that Natalee is home from the hospital now!

Day 15

Natalee is now off of the epidural for pain relief and they have switched her to OxyContin. Unfortunately, it puts her right out and makes her moody and uncomfortable.  She hasn't been up for visitors since the switch was made, so they are going to do some experimentation today to find a better pain management option for the day and then take the OxyContin at night.  

We are also hopeful that Natalee will get to go home today, and will post as soon as we find out.  

Sherri feels like she is being reminded that even though the surgery was successful and even though we feel like she is going to recover, we can't let up on our fervent prayers. Those prayers will have an impact on how she recovers.  It is easy to slip into a more relaxed mode of feeling that all will be well, but there is still a long road to go.  Specifically, Sherri is asking us to pray that the doctors make the right choices as far as what to do next.  

She asked the oncologist about the next step, and the doctor said that they are just mainly trying to collect as much data as possible to determine what should happen.  Sherri wants the doctors to have open hearts and minds to all the information that is out there so that they can develop the best treatment plan for Natalee.  Thank you for the prayers you have given throughout the day as well as the prayers you've kept in your hearts.  

Sometimes the hardest thing to do is to have the patience the Lord asks us for.  When we have a goal or a recovery point that is on the far horizon, taking the time to map out the best route can be incredibly difficult.  Sometimes inertia feels like movement in the wrong direction. We want so badly to be doing something that gets us closer to our destination and the waiting can subject us to roller coaster feelings of hopefulness and helplessness, anxiety and joy and frustration.   But I know from experience that no matter how much I want everything to run accordingly to my schedule, that I can only to pray and be open to promptings from the Lord and understand that His timetable is the one that we are following.  So while we wait for a plan for Natalee, we can continue our fervent prayers for the doctors to have the insight and information necessary to do what they do best, and know that the faith and patience required is what we can be doing now.

Day 14

I didn't get to the hospital to see Natalee until last night and I'm really impressed with her progress. She really looks great! Members of her basketball team came to visit her last night and her face was lit up and she had her spark back (even though there are similarities, I'm not referring to the All Spark from Transformers which was used to bring mechanical and electronic objects to life).

She was able to move from her bed to her chair and the physical therapist has plans for her to be able to walk from her bed to door and then to be able to walk to the end of the hallway. She can pull herself up and really is healing at a miraculous pace.

They asked the doctor how many stitches he put in Natalee, and he said that he completely lost count. There are stitches in multiple layers and those he said were in the hundreds. The whip stitching to close everything up is over a thousand. Natalee was quite proud of that - she'll be able to win any "who has more stitches" contests.

The best news is that she is expected to be able to go home in a few days! The PT wants to make sure she can walk down the hallway first, but the surgeon said in the next day or two, so we'll see what it happens. Most likely the PT will win and she'll have to do the walking, but with as fast as she is recovering it shouldn't be a problem.

Once again, thank you for all the prayers on Natalee's behalf. We are seeing amazing things happen with her and we know it is all due to the faith that is being exercised from so many people.

Day 12

Yay! Out of ICU and into a regular room last night. The hospital staff is amazed at how quickly Natalee is recovering from such a long surgery. She was able to sit up yesterday (which she had to do before they would let her out of ICU) and she can move her leg quite a bit. She still has some pain of course, and is having a hard time speaking because her throat hurts (due to the intubation during surgery). She does have an epidural and will get to keep it for another week or so (thank you modern medicine).

The plan for today is to have a little physical therapy; they would like to get her walking a bit. If ever there was a time when I needed prayers, it was the first day of physical therapy. It can be very discouraging when your body doesn't work the way it used to, so please give Natalee extra prayers today that she will be able to be patient with herself and her recovery. Sherri says that she is just as independent as ever, hasn't wanted to have the ice chips fed to her unless she could do it herself.

Sherri is concerned about her cell phone minutes, so she is asking that people call directly to the room now if they want to get a hold of her. The number that she gave me is 503.413.1313, and Natalee is in room 3524.

Sherri really feels peace and comfort and is so grateful for all the prayers on Natalee and the family's behalf. Natalee is starting to be able to take a visitor or two a day, and would like to see some of her friends. Please call first and talk to Sherri to see if it is a good day to visit, and please understand that Natalee gets overwhelmed easily so some days just won't work for visiting. She is grateful for all the love that she feels.

Day 11

Natalee spent most of Saturday in recovery mode. As the day wore on she became more alert and was even watching TV when the family arrived to see her. She was in some pain (not surprisingly) and had a slight lung infection, but generally the outlook has been positive.

After the concerns of nerve damage in her leg, the surgeon came in on Friday to check her legs and when he asked her to move her knee she was able to! That is a miracle for they were sure she would have to relearn how to move her leg.

The family is hopeful that Natalee will be able to leave the ICU today and into a regular room. More updates later on...

Day 9

Natalee's surgery finally ended around midnight.  She will be in the intensive care unit most likely until Sunday.  The surgeon came out around 10-10:30 to tell them that everything went really well in the abdominal area.  However, in the pelvic area there was a lot of blood vessel and nerve ending involvement with the tumor, and he didn't think he'd be able to remove the tumor without damaging her leg irreparably.   At midnight he came out to tell them that they didn't have to amputate, which is a huge relief.  Some of the nerves were damaged, so she'll need to have physical therapy to learn how to use the leg again.   He did get out as much of the tumor as possible.  

They are keeping Natalee sedated for most of today to help her body recover.  Sherri is very fatigued as she has been fasting for quite a while and hasn't been able to get much sleep.  She was headed down to get some breakfast after we spoke, and she is hoping to get some rest today. Obviously, Natalee isn't ready for any visitors the rest of this week, and then they will evaluate the situation once she is moved out of the ICU.  

We can't decorate her ICU room, but as soon as she is moved out we'd like to fill the walls with posters and pictures of her friends.  I know that several people have been making videos, if you can email those to me or drop by a DVD I will convert it to iPod format for her to watch.  

Surgery Update

I just spoke with Sherri.  It looks like Natalee has another 2-3 hours left in the surgery.   A fifth year resident (think Bailey on Grey's Anatomy) came out to speak with them just a few minutes ago and told them that the surgery was going beautifully.  The tumor is sticking to itself which has made it easier to remove.  There was a concern that they could cause damage to the internal organs while trying to remove the tumor, and they haven't had any trouble with that at all.  The best news is that there hasn't been any problems with bleeding, so they are very pleased.  The doctor told Sherri this morning that he was planning on taking his time to be as thorough as possible.  

So, I will post another update when I hear one, but it probably won't be for another few hours at best.  Clearly, your faith and prayers and fasts have made a difference.  Thank you so much!

Day 8 - Natalee's Prayer

Sherri asked me to post these scriptures that she is referring to as Natalee's Prayer:

Psalms 55: 1, 4-6 & Psalms 57: 1-3

Give ear to my prayer, O God; and hide not thyself from my supplication.

My heart is sore pained within me: and the terrors of death are fallen upon me.

  Fearfulness and trembling are come upon me, and horror hath overwhelmed me.

  And I said, Oh that I had wings like a dove! for then would I fly away, and be at rest.

Be merciful unto me, O God, be merciful unto me: for my soul trusteth in thee: yea, in the shadow of thy wings will I make my refuge, until these calamities be overpast.

 I will cry unto God most high; unto God that performeth all things for me.

 He shall send from heaven, and save me from the reproach of him that would swallow me up. Selah. God shall send forth his mercy and his truth.

Specifically today, when praying for Natalee in surgery we do want to ask that your prayers include a blessing that Natalee's main artery that leads into her organs will be shielded from the surgeons knives.  The risk of hemorrhaging is high and we want her to be as protected as possible.  

We know that several large groups of people are fasting today, the missionaries at the MTC (Missionary Training Center) in Provo, the youth of the Summerlake Ward as well as many families, friends and caring people from all over the United States.  Thank you for being there for Natalee & her family when they need you the most.  This type of service is anonymous and the most greatly appreciated since it is truly a sacrifice in behalf of someone else.  Please know how grateful we are, and we know that you will be blessed for the sacrifices that you are making.

As updates are available, I will absolutely post the minute I know anything.  

More Love for Natalee

Actually, this is just of one of so many touching things that I have heard about but it's the first one that I was able to get pictures of.  

Natalee's basketball team had a game today, and they all wore a special sock that their coach made for them.  

Thank you so much to Cassie for sending the link to this, to Coach Darryl for his brilliant idea, and for Natalee's teammates.

I can't figure out how to get the video from Cassie's Picasa Album, but I have a link to it here!

Day 7 - Update

Just spoke with Sherri and it looks like the surgery won't start until 1:30 on Thursday.  Please please pray for Natalee tomorrow.  This surgery will be very tough for her; she will likely be in the ICU for a day or so after the surgery.  More updates as they come.

Day 7

Great news!  The doctor called this morning and they have surgery scheduled for tomorrow (Thursday May 21).  Natalee will be admitted back into the hospital this afternoon around 2 pm to do pre-surgical preparations and diagnostics.  

The surgery is a big one, and is expected to take several hours (4-5).  Sherri didn't remember if they told her the exact time, but I think it will be first thing in the morning (I always had to be at the hospital at 5 am for a 7 am surgery - ick!).

We'd like to ask if those who can would be willing to fast again tomorrow during the surgery.   The procedure tomorrow is a very important step in helping Natalee to beat the cancer, so we'd love to have everyone united in faith and healing prayers and positive images.  We're envisioning the tumor sticking to itself and withdrawing from her healthy tissue so that the doctors have an easy time removing it.  

We are hoping to post more pictures of Natalee, especially recent ones, so if you have some that you could email to me, I'd love to post them here.  What Natalee would really like are pictues of her with her friends, so send me them as attachments as possible.  My email address is joanna.wilbur@gmail.com.

Natalee, I want you to know how much you are in our hearts; we are all praying for you night and day and all the time in between.  Quite literally, nearly everyone that I know is praying for you in one form or another.  I can't say that I know how you are feeling, but I can say that I know how much you are loved, not just by your family and friends and acquaintances and community, but by your Heavenly Father.  We are all priviledged to walk a portion of this journey with you and be part of your support group, and just think of the party that we'll have when you are all better!   You'll do great with the surgery and I can't wait to show you all the fun things we are planning for you during recovery time.  You definitely have a lot of great things to look forward to!

Day 6

--Elder Dallin H. Oaks of the Quorum of the Twelve Apostles, speaking of his mother:
"... she would “call on the Lord with perfect confidence when special blessings were needed.” In her prayers, she would speak to the Lord of her covenants with Him, “almost reminding the Lord that we had paid our tithes and offerings, that the desired blessing was, as nearly as we could judge, a righteous desire, that we were serving in our various callings to the best of our ability, and that now we were laying hold on the Lord’s promises. I can’t communicate the sincerity and the fervor of those pleas. Or the sincerity of the way she lived. … Because my mother had no doubts about the Lord’s reality and his ability to answer her prayers, I haven’t either. … This is a very personal thing to talk about and I don’t very often, because it’s hard to do without sounding overconfident. But I would be scared to death to try and undertake something without asking for the Lord’s help, so I always pray for that help, and I’ve never failed to get it.”

"How often have we prayed something like, "O Lord, be with cousin Billy now in a special way"? Have we stopped to consider what it is we're requesting? Imagine that you are a parent who is preparing to leave your children with a babysitter. Would you dream of saying, "O Betsy, I ask you now that you would be with my children in a special way?" No way. You would say, "Betsy, the kids need to be in bed by 9 pm. They can have one snack before their baths, and please make sure they finish their homework. You can reach us at this number if there's any problem. Any questions before we go?" We are very specific with our requests and instructions for our babysitters. We want them to know specifics. It should be no different with prayer."
--David Jeremiah

Sherri has asked for everyone to be very specific in their prayers right now for Natalee. These are the things that she would like us to pray for:

1. That the tumor will start gelling together so that when the surgeons go in to take it out it can be removed cleanly
2. That the surgeons will be in good health and sound mind during the surgery
3. That the tumor will stop growing
4. That surgery could be scheduled for Friday to get the tumor out as soon as possible

Now that the shock and numbness of the diagnosis are starting to wear off, Sherri says that she is feeling great comfort from the comments on the blog and that Natalee really appreciates this too. She feels like the ability to be able to read and reread the uplifting thoughts and prayers is helping to their burden.

No word yet from the surgeons on a possible date for surgery, but will post it here as soon as we know.

Day 5 - Diagnosis

I’ve started this blog entry several different times, but still haven’t found the right words to ease into this information. The diagnosis is renal cell carcinoma. It is very rare in children. It started in her left kidney and the doctors do not know what causes this cancer in children. Because it is so rare, there is not an established treatment method.

We do know that chemotherapy has not been effective at treating RCC. The plan is to go ahead and remove the diseased kidney and as much of the tumor as possible. In some circumstances, when tumors have been removed, the other metastatic lesions (such as the ones in her lungs) have shrunk on their own, and we are hoping for that scenario.

Additionally, after Natalee has recovered from the surgery, she will begin a treatment of some drugs that have had success in the past at stopping the growth of the cancer. There is a doctor in Houston who is currently running a clinical trial for people with RCC, and Dr. Olson had just consulted with him prior to our meeting. He felt like the drugs that he was using in his trials were available in Portland and that Natalee would do better to undergo the treatment at her home. He was very willing to work with Dr. Olson and assist her in treatment options so that was very encouraging. It is likely that the Walton’s will travel to Houston for a second opinion after the surgery, and if there is an option to join the clinical trial they will consider that.

Dr. Olson was hoping to get the surgery scheduled as soon as possible, so it will likely be the end of this week or beginning of next. It is a big surgery and is complicated to schedule, but they are hoping to bump Natalee ahead of other scheduled patients.

Natalee has felt a great deal of fatigue this weekend and is worn out. To help keep Natalee as healthy as possible in preparation for surgery, Sherri & Kent would like to ask that people wait to visit Natalee until after the surgery. She does read her blog and is grateful for the comments and support and love that she has received.

This is going to be a very difficult battle and recovery and we again request fervent prayers on her behalf. We will continue to post needs as they arise and will keep everyone updated.

If you are interested in sending a card and don't have her address, please send it to me and I'll take it over immediately:

Natalee Walton
% J Wilbur
12185 SW Summer St
Tigard OR 97223

Thank you for your love and support during this difficult time.