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. :-(
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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.
Tuesday, July 28, 2009
Thursday, July 16, 2009
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.
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.
Wednesday, July 8, 2009
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.
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.
Sunday, July 5, 2009
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!
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!
Wednesday, June 24, 2009
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.
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.
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.
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