March 16, 2010 - No Treatment
I haven't posted much since it seemed like there wasn't much to say. Things haven't changed that much for Sara over the past few months. Tumor growth has been slow but increasing. Treatment makes her sick and she usually has assorted pain. She hasn't been to school in several months. We watch TV and movies together. She's always medicated and often too tired to do anything but she goes to cheer practice with Sherri most days to get out of the house and socialize with the cheerleaders Sherri coaches. Her spirit is strong and her attitude is great. Despite her having every reason to be unhappy, she seems happier than most kids who don't have cancer. She has so much to give and she thinks of the people around her rather than her own needs.
Today we received the news we hoped wouldn't come - and we didn't expect to get for a while longer. She had her 8 week scans today and we learned that the growth rate in the last set of scans had been mis-reported - the tumor grow had been higher than 15% - more like 17%. Today's scans showed an overall growth since the beginning of the study of just over 20% which puts her outside the parameters of the study and out of options for treatment. Dr. Lindemulder told us that she would look into phase I studies but that nothing was currently offered. She received no treatment today and we went home without a plan.
It's really hard to know how to react to news like this. We've known that this day may come but there's just no way to prepare. Based on the last reported scan results, we thought we would have a little more time. Sara said that she wants to go on a road trip so we're going to pack up and head for Southern California in a week. With no specific destination, we'll probably spend some time on the beach and do a little site-seeing - and just spend as much time together as possible.
November 28, 2009
Time for scans again. Every eight weeks Sara has scans to measure tumor growth and to check her condition. Of the seven tumors being watched, the sizes fluctuated a little but overall, there was little change except for one 1 cm tumor that increased by about 15% in diameter. There were, however, two more tumors that have shown up that they will be watching in the next scan.
Sara's pain level has increased significantly and and she has been taking up to 30mg of Morphine per day. Dr. Lindemulder recommended that she go up to 45mg if necessary. She goes to physical therapy twice a week to help work out some of the muscle pain. The increased medication and treatments are are also more expensive which, despite excellent insurance coverage, continues to stretch the family budget. We have received some aid from friends and work associates, which has been a great blessing.
She had a couple of bad weeks and didn't go to school at all during this time. While medicated and in pain, she gets frustrated and angry. She hasn't been to school for a while and has missed most church activities. She's had few visitors for a couple of months and the isolation adds to her frustration. More than anything, she needs to spend more time and have contact with friends and loved ones.
The last week a and a half have been better. We enjoyed Thanksgiving as a family while the rest of the secondary family were out of town. Our friend Marie visited from New York and Sara friends Maylee and Holden came by this evening. It's amazing how much better she does with friends around her. Yesterday we went out to cut a tree and decorated it last night. Sara has done almost all of her Christmas shopping and has wrapped all the gifts. Half of the tree is full of gifts and they're all from Sara. Despite her ailments and frustration, all she wants to do is give.
October 25, 2009
She's been making it to school once or twice per week for a few hours at a time. Her pain levels are consistently high now and she requires medication (Morphine & Lyrica) most of the time. This affects her mood, her ability to focus and handle stressful situations. Despite all this, she had a pretty good Friday and Saturday, spending most of the time with her best friend from school at a Friday sleep-over and at home on Saturday. By Sunday she was back on the couch and back on high doses of drugs.
Not much to report on the medical front. Treatment remains the same. She now gets treatment in Portland later in the day so she can go to school Tuesday mornings. Sara's energy is not what it was. She spends more time on the couch and only makes it to school about half of the time. She has a lot of pain in her back and legs most of the time and is having a tough time with activities. She is medicated much of the time.
August, 2009 - Camp Good Times
Sara and Krista attended the American Cancer Society's Camp Good Times on Vashon Island (near Seattle) for the fourth year. This is always an amazing experience and the staff and volunteers are incredible. Sara's energy level is low but she had a great time. She has a lot of joint pain after a lot of activity and often feels dizzy. Usually after one activity, she's on the couch for a day or two. Treatments continue every Tuesday at OHSU/Doernbecher in Portland and then she's usually sick until Thursday. Scans last week showed that the tumors in her abdomen remain he same size.
Friends and co-workers have asked about helping with treatment costs which has recently become a greater challenge. We've opened a new account for donations and of course will appreciate any assistance. Visit the support page.
When we started posting pictures on this site in 2004, Facebook didn't exist. To see the latest photos from Camp Good Times, visit Sara's Facebook page.
June 2, 2009
After being off of the ABT-751 study for about six weeks, scans showed some abdominal tumor growth in early April. There appear to be new tumors in her lungs and upper abdomen. Of course this was of concern and Dr. Lindemulder at OHSU recommended a recently approved Phase II antibody study called IMC-A12 (Anti-IGF-I Receptor Monoclonal Antibody IND# 100947, NSC# 742460.) Sara has been on this study for about three weeks now. The drug is administered by infusion at the hospital every Tuesday. She'll only need CAT scans every few weeks and won't need frequent mIBG scans and bone marrow biopsies, which were painful and have adverse side effects.
On June 2nd, scans showed no new tumor growth and possibly stabilization and some reduction in some tumor size. This, of course, is encouraging. She does feel tired and a little sick for a day or two after weekly treatment so she usually misses school on Tuesdays & Wednesdays. Her muscles hurt and she can't run or walk long distances. Otherwise, she's feeling better. She swims and spends Saturday mornings getting back into gymnastics while mom is coaching.
March 11, 2009
We've taken Sara off of the ABT-751 study. After four treatment cycles, she had more pain than was tolerable. She's taking, and has developed a dependency to, different pain meds and hasn't been able to attend school for a few weeks. The current plan is to stay off treatment, get her off Morphine, and then review more treatment options in about six weeks. The goal right now is to get off the couch and back to school.
Her last set of scans & tests didn't indicate new tumor growth. Unfortunately, the mIBG scan didn't work correctly so we have no imaging this time around, but the blood counts and marrow biopsy didn't show anything of concern.
Once again, we are humbled by the genuine concern and support from friends as Sara goes through a tough time. She's being strong with the support and reassurance of her family, friends, caring teachers and family members. Thank you all who have expressed love for Sara and our family in many different ways recently.
She attends school any time she can and mom picks her up and drops her off when she feels well enough to go. Her teachers have been very flexible with assignments as she's been attending about half of the time.
January 3, 2009
She has completed one round of a study drug regimen called ABT-751. This is a phase II study designed to test the effectiveness of reducing the rate of tumor growth. The drug is given orally at home for 7 days at 21 day intervals. She's had good days and bad days with muscle aches and nausea, and is on a regimen of pain medication. She's active but gets tired easily. We have delayed her second round of treatment one week because of her intolerance and side-effects from the first round so she starts again this Tuesday. She should be able to attend school at least until Wednesday and then we'll see how that goes.
We spent Christmas together at home and Sara is spending many hours playing the Wii. Grandma Simpson visited from Arizona for about a week right after Christmas. They spent a lot of time doing the thing that they most enjoy - shopping.
December 7, 2008 - Disappointing News
Sara has been out of treatment for nearly three years. She's been very active and leading a normal life for a twelve year old girl. Two years ago we moved back to Paul's home town of Vancouver, Washington. During this time, she's had relatively minor side-effects from the treatment including some pain in her feet and legs, slow physical development and some high-frequency hearing loss. After competing in gymnastics at the local and state level, she decided to slow down and not push herself quite so hard. She took up the violin and was recently assigned first chair in her middle school orchestra.
Her mIBG scans were performed every three and then six months at Seattle Children's Hospital with clear results. The last scan on November 20, however, was not clear. A small tumor was found in the lower-left abdomen in the same general area as before. Surgery was performed to take a biopsy of the tumor and bone marrow in the pelvis. The tumor tested positive again for Neuroblastoma but the bone marrow tested clear. There is no routine treatment for recurring Neuroblastoma and the sobering news is that there have been no documented cases of successful recovery from this stage of this cancer.
Some relatively new studies are being conducted and we have opted for a less-invasive phase II study of an oral medication that should let her spend more time at home and, hopefully, at school. Treatment is being transferred to Doernbecher Children's Hospital at the Oregon Health & Science University in Portland so she can live at home during treatments. The oral treatment is given for 7 days, on three-week cycles and can be given for up to three years if it's effective.
Sara keeps up with her friends on Face Book. Find her by searching for Sara Turley in Vancouver, Washington.
April 23, 2006 - State Gymnastics Competition
Yesterday the surprises just kept coming. We just couldn’t believe what she had accomplished in such a short time... Sara has been training three days a week at our local gym and competing about every-other weekend at local meets. Yesterday was the Washington state championship meet and she took first place in the trampoline event for her level and age group! Based on her scores, she doesn’t have to compete in the regional competition in Idaho and can go directly to the national championships held in Chicago this July. This wasn’t even on our radar screen until this weekend. It’s hard to express what a thrill it is to see her strong, healthy and so motivated to reach the highest heights – but this… wow!
We will be looking for a sponsor to help get her to Chicago. If you have an experience in this area, please let us know.
March 26, 2006 - Great News!
Sara had scans this past week. Her blood work came back normal but the bone scan came back with no uptake (absorption of the contrast) in both of the tibias (the bigger bone below the knee). Since it was bilateral (both legs) they needed the mIBG scan to figure out the puzzle. The mIBG scan, which is only used to test for Neuroblastoma, came back negative. They have decided that the bone scan is showing trauma to the bone (shin splints!) I guess gymnastics it takings a toll on her little body. We will be meeting with other doctors to discuss what can be done to minimize the pain and damage. She doesn't want to quit gym so we will need to come up with something else. We are so happy that the mIBG test came back negative.
Sara has continued to compete trampoline and tumbling and has qualified for state in all three events. Here is the info for State competition:
|April 22nd at||Northwest Aerials 12440 128th Lane NE Kirkland, WA 98034|
Thanks for all your support; I have added some new pictures!
January 31st, 2006 - Done (for now)
Sara had her fifth round of 3-month scans and tests to assess her condition. Since treatment is complete and there is no more treatment available, this can be a tense and worrisome time. All of the chemical test and counts were very good and the doctors are very happy with her overall condition. The mIBG scan, which is the most specific indicator for Neroblastoma, still shows a very small and faint spot in her left leg. The doctors say that it is so faint that it could have been missed if they didn't know where to look. With no other way to validate the results, this means that the cancer is either completely gone and only some ganglioneuroma tissue (dead cancer) remains or that there many be a few weak, stubborn cancer cells left. The doctors said that they were not very concerned about the mIBG scan and that although they cannot confidently say that she is in remission, they are very encouraged and positive about her overall results and condition. No more big tests for two months. Her orders are to go to school, do gymnastics, have fun and to to keep bossing her siblings around.
January 15th, 2006 - Make-A-Wish Trip to Orlando
The trip was awesome! The whole family had a great time. We stayed at Give-Kids-The-World, a fantastic resort that caters to families that have kids with life-threatening illnesses. We went to eight parks in six days! These included Four Disney World parks, both of the Universal Studios parks, SeaWorld and Wet'n Wild. We needed a vacation when we got home! Sara was treated like royalty everywhere she went. What she enjoyed most was that we didn't wait in any lines. She would show a special pass to an attendant who would take the entire family through a back door, around the normal entrance, and we would just step right on the ride. She wasn't ready to do a lot of walking so we pushed her around in a big stroller. We could do an entire theme park in 3-4 hours. The GKTW resort was amazing... everything looked like a big cartoon with rides, swimming, golf, theaters, trains, food and an all-night free ice cream parlor. Everyone stays in a new house with a driveway. Retired volunteers staff most of it and they were so good with kids. It couldn't have been better. Lisa and Kristine from Seattle Make-A-Wish are terrific.
November 1st 2005 - Press-on
The good news, her AST and ALT (liver function indicators) dropped back closer to the normal range. We are pressing forward with treatment. She started her 4th round of CIS-RA (Acutain) and will be admitted for her last round of antibody treatment on November 21. Until then she will try to be a normal kid...
Oct 27th, 2005 - Another bump in the road
Sara was in the hospital for treatment. On day four things fell apart. Her treatment was stopped due to liver functions or maybe a better way to say it is non function. At this time her liver can't handle any more Chemo. They sent us home. She is feeling ok, a little tired. She is off all medication till they can re-evaluate her on Monday. I will update later
October 15, 2005
It was another testing week. Sara went to school on Monday. Tuesday she had a bone scan and her ct scans. On Wednesday she endured a 4 hour surgery for line placement (new Hickman) and bone marrow aspiration and biopsy. We did not get home till 9:00 that night. The next morning we were at the hospital at 9:00 am for her mIBG scan. To say the least it was a long week. I spoke with her doctor on Friday by phone. She said all the scans showed that there is "decreased uptake" (absorption of the contrast) in the femur. On the mIBG it was barely negligible. It appears she is still moving in the right direction but still has a positive mIBG scan. Her next scans will be at the end of January.
As for the next two months she will begin the 4th round of this treatment on Monday at home with a continuous infusion of an antibody builder. On Monday the 24th she will be admitted for a week. Her last treatment will be the week of Thanksgiving. Well she spent the last Thanksgiving in the hospital, lets make it an even number. Please check out the new pictures
September 26, 2005
Sara had a long weekend at the hospital. She went through 7 IV's in her hands, they are so bruised and sore. They placed her PICC line on Monday. It is in her right arm, they were not able to get it in her left arm. She received a transfusion on Monday and was prepared for her treatment that started on Tuesday. Her treatment will continue through Friday. We hope to go home on Saturday.
September 23 2005
Sara was admitted on Sunday the 18th with a high fever. She had three coodies growing in her blood. two of them cultured out to be both strep and staff, we are still waiting on the 3rd culture to be identified. They were not able to save her line and it was taken out on Thursday. She is feeling better now but has to deal with an IV in her hand. The antibiotics (Vancomysin) keep blowing out the IV site and the have to start another one. They will place a PICC Line (a central line in her arm) on Monday and start her treatment on Tuesday.
Rachael fractured her foot in two places on Monday, one of which was the growth plate. Of course this was the week Paul was out of town. I am very thankful for the wonderful people in our Church. They stepped up and took Rachael to a foot and ankle clinic in Mill Creek and he put her in a boot and crutches for the next 6 weeks. She is mad she is missing Church volleyball but hopefully she will be able to go out for school volleyball in November.
September 7th 2005 - Catching up
Sara endured her 2nd treatment the week of Aug 22nd. The treatment did not go well and there were so many bad side effects that we stopped one on the drugs early. It took her another week just to get back on her feet. She has lost so much weight that she is back on nutritional support at night to help her put weight back on. She is having difficulty eating and everyday it is a fight.
She did however start school. She was very excited to pretend that things were "normal" for awhile. Her teacher and the school are so willing to make any accommodations necessary to improve her quality of life. The cafeteria has offered to make accommodations so that she can have hot lunch a few times a week with her friends.
Her next admission in on September 19th. I hope things go better. They have also scheduled her next scans for October 3,4,5.
Aug 3rd 2005 - New Room (see Pictures page 8)
Sara got her own room and a new double bed from IKEA. (I was tired of sleeping on the floor when she was having a rough night) It took Josh and me 6 hours to put the darn thing together. Josh has decided that the reason IKEA has a sale only twice a year is because it takes you 6 months to get over how much work it is to put together their products.
Anyway, as you can see Sara is very excited about her new abode. She is also excited about her new hair. Every week we see a little more.
She is still on the antibody treatment. Her next admission is on the 22nd of August. Right now she is on oral medication. The week of the 17th she will do an immunity builder drug infusion at home 24 hours a day continuous for 4 days
She got the approval to go horse back riding so she will be doing that on the 16th.
July 29th 2005-First round of new treatment
Sara started injections last Friday and was admitted on Monday for the first round of antibody treatment. She had very high fevers, between 104 and 105. Her stomach has hurt since the first infusion. She was released on Friday and will continue injections until Thursday of next week. She will then begin oral medication for 14 days then she begins her second faze of the treatment. We are all hoping she will be feeling better soon. The staff at was working close with her said the treatment went well. It is very hard to watch her be so sick.
She will be admitted to the hospital again on the 22nd of August. The week before she will have continuous infusions at home of the antibody builder to prepare her for the 2nd treatment. My mom has decided it is time for her to return to Arizona so we will be on our own.
July 19, 2005 - Test Results
Well we got the tests back. They can’t say she is in remission. There is a spot on her femur that is still showing up on the scans. We are continuing treatment with an antibody that is a study drug. It will be 6 more months of treatment. As they look back on the scans from April, they decided they were hasty in saying that she was in remission. The spot that they saw last week was on the scan in April and they missed it. We were devastated to say the least. Her renal function is such that she could not handle any more chemo. She also has a high frequency hearing loss due to the heavy amounts of chemo. She now is placed in the highest risk category but still has hope. There is still the possibility that what showed up on the scans are mature cells and they will die off in the next few months and she will be in remission. We will not know for another 3 to 6 months.
I can’t explain how I feel; numb I guess. She has accepted it (as much as she understands) but I am still dealing with it. Sara starts treatment again in Friday. She will need to have shots through the weekend and then she will be admitted on Monday for the antibody infusion for 4 days; then one day to recover then she will go home. It won’t affect her immunity so she can still be with the family and some people.
I guess there is no way to sugar coat this; We just wanted everyone to know.
June 29, 2005 - Feeling Well, Radiation
Sara is eating and feeling well. She goes to the University of Washington Medical Center every day for radiation treatment. They placed small tattoos on her leg, back and abdomen. When she goes in they draw boxes and lines on her with permanent ink markers to align the radiation "ray beams". Our only indication of progress is that she feels good and once again has a lot of energy. We get an official progress report on July 18. Her birthday is this coming Saturday.
June 14, 2005 - Recovering at Home
Sara has been home for three weeks. She is on a portable IV and feeding pump and provides continuous feeds via a small tube that is in her nose. She doesn't eat much but is generally doing pretty well. Since her stem cell transplant, her white blood counts are back to normal levels but the cells are still small and maturing. She can't be around crowds and limits her activity some but she is enjoying short trips to the park and jumping on the trampoline. Radiation treatments start tomorrow at the University of Washington Medical Center. Daily electron radiation treatments will last 12 days. She will be on a limited diet for the next few months and will begin the next stage of treatment toward the end of summer.
Kate Chan is running in the Shore Run , an annual fund raiser sponsored by the Fred Huchinson Cancer Research Center, for Sara on June 26.
May 17, 2005 - stem cell engraftment and some
Some good news today! Her white blood counts are beginning to rise. This means that the stem cells are starting to engraft (grow into new, life-saving cells.) It's only day-eight since transplant and this is a better-than-expected result. The culture of the Hickman line came back and we learned that she had a very dangerous staph infection that they had begun proactively treating earlier. Fortunately it was under control before it got very bad. Her pain doctor treats her sores with laser acupuncture, which is working. She feels a little better and her voice is returning. Capillaries all over her body have burst and she looks bruised all over. She's also retained 17 extra pounds of water because her kidneys can't keep up with the fluids. She hasn't eaten for nearly two weeks. They want to start weaning her off the antibiotics and to work on restoring the chemical balance of her system. This could take weeks but they expect subtle results over the next few days. After the hell went though last week, we're happy to see some results.
Paul: I only spend the night with Sara on weekends and only for a day or two at a time. Sherri stays with her the rest of the time. There's so much to do and little time for sleep, relaxation or entertainment. I admire my wife for being so dedicated and supportive.
May 15, 2005 - A rough week after stem cell transplant
It's hard to describe what Sara is going through right now. Her body is just shutting-down. Her immune system, blood, marrow, mucus, lymph, digestive tract and major organs have all been affected by the high doses of chemotherapy chemicals. Her throat hurts very bad and she doesn't have a voice. She dreads coughing. Sometimes she just curls-up and cries because of the pain and discomfort. She spends much of her time using a suction tube to clear her nose and throat. She has ulcers, mucositis and bleeding sores in her nose, mouth and places we won't mention. She is on oxygen, several antibiotics and gets blood and platelets often. They have given her the highest doses they can of pain and anti-nausea medication. Her IV pole has eight pumps with several fluid bags and syringes. She's on an oxymeter and her O2 saturation levels drop often, causing it to alarm. She doesn't sleep well and has to get up very often because her kidneys and digestive tract are not handling the toxins very well. When she does sleep, she moans and tosses, then has to be woken up every 30-60 minutes to be checked and tested. She has to get up often but it's difficult to get around with some many tubes and wires attached. She has an infection in her chest, around her central Hickman line which is of concern to the treatment team. Needless to say, we're praying for better days.
They rushed her to surgery on Friday and pulled the Hickman line due to a sudden infection. Her body is unable to fight anything while her immune system is compromised. The Hickman line in her chest was replaced with one smaller line in each arm. The right arm line didn't take and had to be removed. This means that several different medications, platelets and life-support fluids are all being pumped into a very small line in her left arm.
Saturday wasn't a banner day but it started-out well. She got up early with her nurse, Liza, after very little sleep and made snow cones for the nurses and doctors in the unit. We got her an electric snow cone maker to help sooth her mouth sores. She made one lap around the unit on her three-wheeled Green Machine and that was enough excitement for the day. The rest of the day wasn't quite as much fun but it was a good start. Even though she has a lot of complications and discomfort, her attending doctor is encouraged with her progress and positive spirit.
Monday May 9, 2005 - Stem cell transplant
Today was the day! ...Sara’s stem cell transplant. You can see pictures by clicking on Sara’s Transplant Pictures. The nurses made a sign, the Seattle Cancer Care Alliance staff sent her balloons and they sang to her. She received many pre medications before her transplant. The transplant team brought in the cells in a round cylinder, like something from Star Trek. They also brought a warmer. The cells were in the warmer for about a minute then they hung them. The nurse, Melissa, controlled how fast they were given to her but it still made her very sick to her stomach. The cells are preserved in Dimethyl Sulfoxide (DMSO). This produces a strange odor; she said it smelled like seaweed. She could taste it and now she smells like it. That should last just a few days. She does have high blood pressure tonight and is on oxygen blow-by due to some fluid collection in her lungs. All of these things are not unusual but none the less does make for a long night. More updates soon.
May 7, 2005 - Heavy chemo
It has been a long week of chemo. Four days of chemo was actually 5 because it was based on 24 hour increments and they didn't start until 1:00 on Monday. With that behind her, she moves on to mouth sores. She is no longer eating so they have switched to IV nutrition (TPN). This child is competitive down to her bone marrow. As of today it is still producing cells and her counts are still up. The white cell count is starting to drop so it won't be too much longer before the chemo wins the fight. She is scheduled to receive her own stem cells on Monday. If you are wanting to visit her. Please call SCCA (Children's Hospital) at 206-987-2032, ask for Sara's room and see how she is feeling before you come. Thanks to everyone for their continued support. She is in the 7th month of her treatment, thanks for sticking by her side.
April 28, 2005 - Stem cell transplant scheduled
The day has finally been set! The tooth has been pulled and all the tests are done, YIPPEE! Sara's Chemo (in preparation for stem cell infusion) is set to start on Monday May 2nd at 8:00 am. She is ready to get started. She will go to school for the rest of this week and then be will be done with school for the year. If you would like to write her a letter, you can send it to her at the SCCA/Children's Hospital.
April 21, 2005 - Planning for stem cell rescue
More tests. We have been at the Cancer Care Center (The Hutch) all week. We did find out that Sara is in the best place possible for her last chemo and stem cell transplant. She is strong and her weight is good. Besides a slight hearing loss and some loss of balance (which she will fight for) her body has handled the treatments amazingly well. We are looking at the 28th of April as a start date but that is not set in stone. She needs to have a tooth removed that was capped a few years ago and has since rotted underneath. We are working on that issue today.
She has attended gymnastics twice this week. I want to thank Shelia and Leading Edge Gymnastics in Everett for extending a warm welcome in a safe environment for Sara and allowing her to "play" around. It means so much to her.
We have posted new pictures on her main page under April 05 if you would like to share her smile. We submitted the picture of Sara and Jaela walking to King5 weather pix and it was featured last week.
April 14, 2005 - Leg scans look good
After a long week of tests, we received some great news; the tumor in her left femur has been resolved! This allows her to continue her treatment and prepare for her last round of intense chemo and her stem cell transplant. She will spend the next week at the Fred Hutchinson Cancer Care Center doing more tests to prepare for transplant. We do not know what day she will start but it will include five days of intense chemotherapy, ten times stronger than she has done in the past, that will ultimately kill her bone marrow. She will rest for three days and then receive her stem cells. She will stay in the hospital until the stem cells kick start her bone marrow again. That will take three or four weeks.
Until then she is doing back hand springs on the trampoline again and today she ran a 1/2 mile at school, pretty impressive if you ask me. We did go cabining with Paul's family over spring break. Sara was so excited to roast marshmallows! The weather was kind to us and it did not rain.
March 26, 2005 - Last round of regular chemo
Sara finished her last chemo at 8:30 pm on March 24th. Sara and her mom celebrated together since that is also Sherri's birthday (quite the party.) On Friday morning Sara popped out of bed and decided to go to school where she spent the full day. After she came home, she decided to spend the rest of the day at a friend's house playing fashion model and doing cartwheels. There is not a day that goes by that this child does not amaze me! She said that she loves it when she can do things that make her forget that she has chemo. What a cool talent she has to be able to switch gears from cancer patient to energetic eight year old. We are spending our spring break running back and forth to the hospital while they do 15 tests to figure out where she is in her recovery. We pray that she is in remission. Her care will be shifted to the Fred Hutchinson Center Research Center in April. They will prepare her for the next phase of treatment: her stem cell transplant. We will be attending meetings that will explain the entire procedure and the side affects. I'm sure it will be a whole new education for our family. She will begin her transplant the last week of April or the first week of May. She will likely be admitted for 30 to 60 days during this time.
March 14, 2005 - Tumors removed in surgery
Sara had surgery on Friday the 11th. The procedure took 3 hours which included the placement of an epidural for post surgery pain. The surgeon found two tumors about the size of gumballs attached to lymph nodes at the at the bifurcation of the Aortic artery which is located in abdominal cavity. Her incision is from her belly button to her pelvic bone.
In Sara's usual fashion, she was ready to move around the second day after surgery and came home on day three (to the amazement of the surgical staff). Sara is home tonight and is in some pain but I don't think she will be down for long. She will start Chemo again on the 21st of March (Monday). Thanks to all who called and stopped by the hospital. Sara loves to see people and talk on the phone.
March 2, 2005
I am getting better at this update thing...Sara got a fever so she was in the hospital for two days and received two transfusions. She is feeling better now and is waiting for her white cell count to go back up so she can return to her social life. Here is an updated plan for the next couple of months. Nothing is concrete but you know how that goes:
Sara has one more Chemo treatment after surgery. After that she is prepared for transplant. It appears to be a very long and involved process, about 60 days worth. We will know whether or not she is in remission before they start transplant (she has to be in remission before they do transplant). That’s were the 1 in 4 chance comes into play. Her odds improve to 50% if she is in remission at the time of transplant (hey we take all we can get!) . After a bunch of testing, she is admitted to a special unit. The chemo she is given will take her just above death. (lovely thought huh) Then they give her back her own stem cells to “rescue” her. Then we sit and wait for her body to start to fight back (about 30 days in the hospital) after she recovers from the “transplant” she goes home for the next 30 days and then she begins radiation therapy at UW for 12 days. I don’t have an exact schedule yet. It will be based on how quickly she recovers from her surgery and can start the next round of chemo.
We spend every day making her life as full and happy as possible. If any of you want to call or make arrangements to come by, she loves visitors. Please keep an upbeat attitude, she still has her million dollar smile and shares it often.
February 25, 2005
See what happens when you try to make a plan...they change things. Sara had an appointment today and they told us her surgery was changed to the 11th of March. I wouldn't put anything in pen... so much for down time. More to come soon. Thanks to all for keeping up with her progress.
February 22, 2005 - Chemo round 5
Sara completed her 5th round of chemo. Thanks to her wonderful nurse, Liza, Sara had less nausea this time. She took anti-nausea medicine every two hours around the clock and was released Sunday. Sara was able to attend school today. Her next hurdle is surgery which is scheduled for March 16th. Besides a few tests, Sara should have some down time before her surgery.
Sara and Krista have adopted a resident squirrel. It will come to the door and take peanuts out of their hands. He appears to be quite well fed!
Grandma Sharon has taken a few weeks off and has gone to Nagano, Japan to attend the Special Olympics. She sponsors an ice skater that will be competing. We hope she enjoys her vacation.
Paul has begun a new work assignment at Disney Interactive. He will be working along side some of the nice people that he commuted with from Port Orchard. It will be good to be back with friends.
Josh and Rachael have settled into their new schools. Josh is enjoying high school and has finished up his first semester. He is pestering his mother about driving but she is not ready to add more stress to her life! Rachael is doing well and has made friends with some girls in the neighborhood.
February 16, 2005 - Community support
I have let yet another month slip by without an update. Maybe I should be fired from my job! (please?) So here it goes...
The Outback Steak House in Bremerton was amazing! Almost 200 people showed their support for Sara, Thank you! The PTA raised over $2000 for her care. The staff from Outback donated their tip money too! What a wonderful place! Thanks to all that helped out. That money will be used right away to get everything caught up.
Sara completed round 4 of chemo in January and is OK. She has developed a cough but that is about it. She has started school at Cedarwood Elementary in the Everett School District. Her teacher, Mr. Pewitt, is a gift from heaven! The kids have been very good to her especially one little boy who thinks it is his duty to protect her. She says he drives her nuts but I think she likes the attention. We received valentines from many people. Thanks for sharing.
She starts round 5 on Wednesday the 17th of February. She will have surgery the week of March 13th. I will not know the date until the week before. You are not allowed to have a life or be able to plan things when you work with the Children's Hospital. They hand it to you on a white sheet of paper...
We miss everyone in Port Orchard and still feel their love. We also miss all our friends and family in Vancouver, Its hard not to be able to travel down to see everyone. Sara has set her Make a Wish. She has decided on a family vacation to Give Kids the World in Florida. We will spend 7 days in Florida and get to go to several theme parks. The village is set-up to give kids the best time of their life. We have talked with the docs and they think October will be a good time. Now she has something to look forward to.
If you haven't already, check out all the new pictures. That's Paul's job, he seems to keep up to date! We have also added our new address and phone number to the website. Please take care and keep Sara in your prayers.
January 20, 2005 - Moved closer to the hospital
Sorry for the long delay on the update. We have moved to Bothell and are trying to settle into our house. We can't find anything but at least it is all in one place. Sara's treatment was delayed one week due do a scheduling conflict at the hospital. It turns out to be a blessing. We have enjoyed the time off to unpack and for her to get back on her feet. We will be attending the Benefit at the Outback Steak House in Bremerton. It is sponsored by the wonderful folks at Mullenix Ridge PTA. 1/2 of the proceeds raised will go directly to Sara's account to help cover the mounting costs of her care. Our family could not survive without all the love and support we have received from our friends, family and the wonderful community of Port Orchard. We miss all of you and are looking forward to seeing you on Saturday the 22nd from 11:00 am to 1:30 pm. If you would like to join us, you can call Mullenix Ridge and they will put you in touch with the right person for tickets ($10.00 a plate.) There number is (360) 443-3290. Or you can call me on my Cell 360-265-5538
Sara will be in for her next Chemo treatment on Monday the 22nd. Thanks for everything!
January 6, 2005 - Chemo round 3
I hope everyone had a wonderful holiday. Sara completed her third round of Chemo. This was a difficult round. She was very sick and did not keep food down. She stayed two extra days until she was feeling a little better and was released late on Saturday. She is looking better today. She is such a fighter. Sara is planning to come to her AW takeover benefit, weather permitting. She is looking forward to seeing all the wonderful people in this community who are supporting her. We are relocating to Bothell / Mill Creek area so we can be closer to the hospital. She will be able to come home between her treatments. We are sad to leave all our friends in Port Orchard but it is the best choice for the family. If you are local, stop by AW Rootbeer between 5:00 pm and 7:00 pm to say hello to Sara.
December 23, 2004 - Chemo round 2
After completing the second round of chemo last week, she had her stem cell harvest on Tuesday. She spent most of the day at the Fred Hutchinson Cancer Research Center undergoing apheresis. A machine cycles her blood through a centrifuge to extract the stem cells and then returns the rest to her. These young cells are kept in frozen storage. After the seventh chemo treatment, stem cells are thawed and given back to rebuild bone marrow and blood cells destroyed by chemotherapy. Wednesday, she spent most of the day having surgical bone marrow tests and radiology scans. It's been a long, tiring week but if she's well enough, she'll be able to go home for a short time on Christmas.
December 5, 2004 - Losing her hair
It has been a tough week. This week Sara said good bye to her hair. How heartbreaking it was to comb her hair and watch it fall to the floor. Tracy Stokes, a member of our church, will be making a doll for her out of her own hair. That will be cool. Sara has started wearing hats and got a wig. Thanks to Linda Finance and Becky McKee for making it work for her. Other than the hair, she had a good week. Sara got to spend most of the week with her family so that made her happy. She will start round 2 of chemo on Monday. It will be the same medication as last time so it shouldn't be too bad. (I hope). She will be in the hospital for at least five days. Thanks so much for all the notes and phone calls. We love all of you.
November 29, 2004
Her white blood ANC hit zero count on the 24th and then she was readmitted with a fever. On Thanksgiving day, she spent some time in the hospital with all of her Turley family cousins, grandparents, aunts & uncles. The blood counts recovered and she was released from the hospital on Sunday. Her counts are now at the same level as they were before chemo.
November 24, 2004 - Blood counts crash
Thanks so much for all your notes. Just a quick update; Sara has completed her first round of Chemotherapy. I know that some of you have been on this road. They are using Topotecan and Cyclosphosphamide. So far she has not had too many side effects. She was having difficulty eating but that has improved some. She has lost about two pounds.
Her absolute neutrophill count (ANC) hit zero today so she is on her way back up. The ANC is the part of the white cell that is responsible for the immune system. This is a normal process that is repeated after every treatment. She is feeling tired and she is missing her friends, family and her dog, Tanner. She is feeling sad because she can’t have visitors over Thanksgiving because her immune system is suppressed right now and it is too much of a risk. She will be able to have visitors next weekend. We will be having Thanksgiving dinner here at the Ronald McDonald House. They have been very nice to us and have made us feel welcome. She is scheduled to start her second chemo treatment on December 6th.
November 20, 2004 - Chemo round 1, moving to the RMH
She finished her first week of chemotherapy yesterday. It took a few days to get her leg pain under control. She had a ride with narcotics - too much at one time, then not enough to control the pain. We are looking forward to not needing any at all. She is sick to her stomach. Food is not her friend. We hope she can get over that part. If she looses too much weight, she will need an NG tube for feeding. She is tired and not doing much but is walking on her leg again. She and Sherri moved to the RMH last night where no one wakes her up every two hours to take blood pressure and temperature. She's on a lot of medication for pain and nausea but otherwise, in good spirits but very quiet.
November 15, 2004
First induction of chemotherapy begins on Monday morning. Due to the relative severity of her condition, the first dose will be more intense than for most types of cancer. She should be in the hospital for at least five days.
November 9, 2004 - Surgeries, biopsy & diagnosis
Within the past three weeks, she has had two surgeries to take biopsy tissue samples. These include her left upper leg and right rib in her back. She spent three days at Children's Hospital last week. Tests this week will include a scan of two known tumors in her abdomen.
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