Book Reviews especially ones about Dragons
Special Song written and composed for Kara by Phil Wizer.
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November 2006
Merry Christmas from the Siert Family
Dear Friends and Family,
As most of you know, this has been a year that has impacted our lives tremendously. Last year on October 4, Kara was diagnosed with bone cancer in the right upper arm. We had just moved to England on June 8 and had settled into our house on RAF Lakenheath when Kara began to complain of some arm pain. At first we all thought it was just growing pains. Then by the end of July we noticed that the pain was getting worse and by mid August she had intense pain and could not raise her arm unaided.
On August 18 we took her in to the pediatrician on base and an x-ray was taken. We were stunned to find out that she had a huge bone cyst (tumor) and associated fracture. The fracture was likely the cause of the sudden extreme pain. We were quickly referred to orthopedics and they scheduled an MRI. We were told that it was most likely an aneurysmal bone cyst and it was benign, not to worry. However as Ward researched these bone cysts he found that there was a 1 percent chance that these bone cysts could really be osteosarcoma and are malignant. A referral was finally put in to have a biopsy done at the Royal Orthopaedic in Birmingham, England. While we were waiting for that to be scheduled, we saw that Kara’s upper arm was swelling out; the tumor was growing aggressively. We finally got the needed appointment and Kara had her biopsy done by Mr. Grimer, an expert orthopaedic oncologist surgeon, on September 28. A week later, October 4, 2005 we got the dreaded phone call letting us know it was bone cancer (osteosarcoma) and that chemotherapy needed to begin no later than two weeks.
From October 4- 7, we shed many tears, prayed a lot, quickly put together an early birthday party for Kara, cut her hair in preparation for losing it, made the decision to stay in England rather than go back to the States, met with a pediatric oncologist at Addenbrooke’s Hospital in Cambridge and began the staging tests. By October 15, Kara had had all the staging tests (praise God the cancer had not spread to her lungs or other bones), base line tests, had her Hickman Line placement surgery and began chemotherapy.
Kara’s first round of chemotherapy was very rough. We were not used to hospital life, Kara was very sick from the chemo, none of us got any sleep, and her tumor looked very angry, red and swollen. Ward and I were able to take turns taking 24 hour shifts which meant driving back and forth from home to the hospital (a 40 minute drive) once a day to relieve whoever was there. Upon going home six days later, we were told that she would become neutropenic (her white blood cells would not have the ability to fight infection) about a week later and if she got a fever (they said she most likely would) we’d have to go to our local hospital (West Suffolk in Bury St. Edmunds) and have her treated with IV antibiotics. On October 30, the day my brother Peter arrived from the States to help, Kara was feeling poorly, sure enough she had a fever and we had to take her into the hospital. This was also a couple days after Kara began to lose her hair. She lost all her hair except for a few determined strands while she was in the hospital. Her bed and clothes were constantly covered with hair. The cleaning lady wanted to know if we wanted her to “Hoover” Kara’s bed!
By the time Kara’s second round of chemo began, Kara’s tumor had shrunk dramatically. Unfortunately the doctors goofed on the protocol and didn’t give her the folinic acid rescue drug early enough for her first Methotrexate, so we had a little scare getting her levels to come down and ended up staying longer in the hospital and having to skip her second week of Methotrexate. She went straight into another round of Cisplatin and Doxorubicin. By now, Valerie Workman had arrived and she was here to help with that hospital stay. The day Kara came home from that chemo, we noticed she had a couple blisters on her head. By the next day they had increased in number and when the community nurse came out to check Kara’s blood levels and we asked what she thought they were she immediately recognized them as CHICKEN POX!!!!
We were sent straight back to the hospital, this time our local hospital where she stayed for two weeks being given anti-viral, antibiotics and then anti-fungal medicines. Kara’s body was not able to fight the chicken pox on its own and this left her in a very dangerous state. Her chicken pox were HUGE and numerous. She was miserable and had a lot of stomach pain. When her fever did not resolve, she was transferred back to Addenbrookes where they continued her treatment on a different ward. By the time we arrived at this ward it was evident that Kara could not manage to eat enough to maintain her weight. She had lost a full six pounds on the first chemo alone and was continuing to decline. At times we were lucky to get 500 calories in her in one day. So we finally agreed it was time to give her the nasal gastric feeding tube. This turned out to be a two-fold blessing for us. One, Kara got fed without us constantly having to nag her to eat and second she could receive many of her medicines through the tube without having to taste them. The down side of the NG tube was that Kara seemed to lose it every time she threw up, which was often, and it would have to be replaced which was a very unpleasant experience for her to say the least. When the chicken pox finally scabbed over and Kara’s fever resolved, they immediately began her next chemo which had now been delayed a week.
During our third week of chicken pox, while we were at Addenbrooke’s, on December 12, we received the tragic news that our 12 year old nephew, Lee Wrich, had accidentally been killed. It was a great shock and we were grief stricken by the news. It was so hard to believe. Sharing this news with Kara was difficult but something we needed to do so we could all go through the grieving process together. We are just heart-broken for Gwen, Wayne, Keith and Wendy as they continue to suffer their loss of Lee. Praise God we have the hope of knowing he is in heaven with Jesus.
The next chemo was a tough one on Kara. She vomited 25 times in 5 days and spent the rest of the time crying out in pain and crouched over a vomit bowl. Ward and I were exhausted from weeks of being in the hospital with no break and caring for a miserable child. Kara had to stay in the hospital for Christmas Day. We finally got some relief when my sister Chris flew in the day after Christmas to help and Kara’s next round of Methotrexate went much better for her. After nearly ten weeks straight in the hospital with only a day or two at home we were all worn down. Kara continued to have stomach pain and we regularly administered drugs at home to help control her nausea. Also she began having hot flashes, possibly due to the increase in calories so fanning her in the middle of the night became common. Little sleep was gained at home as well.
We were home for a week before Kara’s surgery was to take place in Birmingham at the Royal Orthopaedic where Mr. Grimer was to remove Kara’s cancerous bone and shoulder tendons and replace the bone with a titanium rod. We were very thankful to have Chris here to help us prepare for the trip and be there for the surgery. The surgery was on January 11. Her first night was spent in the High Dependency Unit and she was quite miserable but we survived. She was glad to get back on to the Children’s Ward and see her roommates. Mr. Grimer was pleased when he saw that Kara was able to use her fingers and hand easily by the end of the second day. She began doing some physical therapy with her arm and was ready to go home by January 17. The best news of all was given just before we left. Mr. Grimer gave us the results of Kara’s pathology report which showed the tumor removed was 100 percent dead!!! It was important to have at least a 95% necrosis (death of tumor) to consider it having a good response to the chemo. We couldn’t have had a better response!!!! Praise God!! My Mom arrived to help the day Chris left while we were still in Birmingham.
One week at home and Kara was back into chemo at Addenbrooke’s. At this point Kara had had five chemos and still had 13 to go. We had gone through a lot already but still seemed like so far to go. My Mom was able to take a couple 24 hour shifts with this round of Doxorubicin/Cisplatin. This time the doctors gave Kara so much anti-nausea drugs that she could hardly wake up to use the commode. Sleepless nights were the result of having to get up every two hours to help get Kara on the commode, (Praise God for the bedside commode), collect her “wee” and take it to the sluice. She had to be heavily hydrated to protect her kidneys from the chemo. Also there was the constant beeping of either Kara’s pumps or our roommates’ pumps. Then there were the screaming/crying children. So many nights were spent in prayer but definitely not sleep.
February 1, my mother went home and Wayne Wrich (Ward’s brother in law) arrived. Ward is now starting to tire of the 2 ½ hour drive to either Heathrow or Gatwick Airport in London but is so thrilled to have help come in that he doesn’t mind. We ended up being at home the whole time Wayne was here except for one platelet transfusion and one blood transfusion which required two hospital stays. Kara had a bad reaction to platelets being given and it took several hours for her itching and swelling to go down before we could go home. By then it was 1 a.m. She was just miserable. Wayne did a fantastic job entertaining Kara with games those two weeks and we all worked on and completed a 1000 piece Coca-Cola Puzzle while he was here.
Shortly after Wayne left, Kara’s blood levels were good enough to begin another round of chemo. We were able to get in one round of Methotrexate before Kara was due to go to Birmingham for her week of Physiotherapy. We had worked with Kara in weaning her off her sling during those six weeks after surgery and having her do the prescribed exercises. She was still not able to straighten her arm at the elbow very well so this therapy was quite important. She had three days of twice daily hydrotherapy and once daily for five days exercises in the gym. Having her inner elbow massaged to loosen the muscles was probably the most painful for Kara but the results after a week was quite amazing.
Upon return home from Birmingham we fully expected to resume the next Methotrexate but Kara’s bloods did not cooperate and she was delayed another week. Kara’s oncologist decided to skip the Methotrexate and move on to do the next Doxorubicin/Cisplatin. Later we would learn that Kara’s two missed Methotrexates would be added on at the end of her chemo regimen. Fully expecting that Kara would start her chemo on time we had Phil Wizer fly in to help but ended up he was able to do only one partial day of hospital duty his last day in England. Kara as well as Ward and I thoroughly enjoyed his company though and were glad to have him for the week. The day Phil left, Steve Bridges arrived and Steve took over Kara’s hospital duty the following day. For those who arrived to help and were here during chemo they can tell you how overwhelming it is to be thrown into this situation of pumps, tubes, drugs, chemo and a very sick child. We were overwhelmingly blessed with the response of friends volunteering to come and help to give us a much needed break, knowing how hard it must have been for them to take on such a great responsibility to care for our child in these circumstances. Kara was home a few days, then as usual after Cisplatin began being sick at home in spite of the anti-nausea drugs given. Steve had to leave March 18 and Valerie Workman arrived for her second time the same day.
Valerie ended up being home with Kara the whole 11 days of her visit except one trip to our local hospital for platelets. Kara had had a very long nose-bleed that day that wouldn’t stop so we felt we’d better call the hospital. That ended up being a terribly scary night as Kara nearly lost her airway this time in spite of taking pre-medication to prevent a reaction. I stayed with Kara until the danger had passed and finally went home around 2 a.m. while Valerie stayed the rest of the night with Kara. We hoped and prayed this would be the last time Kara would have to have platelets and it was thankfully.
Meanwhile, during Valerie’s visit, we received a phone call from Dreams Come True Charity to say they were ready to work on Kara’s dream. While in Birmingham for Kara’s surgery we met a social worker who encouraged us to apply for a dream for Kara. We told her about Kara’s dream to be a published author and hoped she could publish a book. Now the time had come. Kara had a rush of creativity in her writing the months just before and after our arrival in England so she had pages and pages of stories already written before her cancer diagnosis. It was obviously God’s timing. A teacher at West Suffolk hospital had seen one of Kara’s stories, Accepting the Syrup, in December and was so excited about it she shared with us the name of a local publisher she knew about. So the combination of people was coming together to make Kara’s dream come true. Now the hard work of final editing and proof-reading began and Kara was home those two weeks to help.
A few days after Valerie left, Penny Wizer arrived on April 1. Penny ended up being here for two weeks of Methotrexate. By now the doctors had figured out Kara’s anti-nausea medicine and she was able to make it through without vomiting. Penny was able to take several shifts at the hospital as well as help with proof-reading Kara’s book and helping with creating the design Kara wanted for her book cover. Penny left the day before Easter. Kara had Easter weekend at home then went back to the hospital for chemo. This would be her first time to have Doxorubicin alone and did not require hydration. It seemed too easy, 48 hours of chemo with no hydration. Finally Kara felt well enough to join the school time at the hospital and really enjoyed it. Then she had a week to be home.
Grandpa Kassner arrived to help on April 29. The doctors thought Kara’s blood levels were good enough to start her Methotrexate so we went into the hospital and had my Dad spend the first night with her. The next day we got sent home as Kara’s blood levels had dropped! We were home one day and went right back to start over again. Kara stayed in the hospital through both Methotrexates (11 days). My Dad found out how little sleep you get at the hospital. Kara had spiked a fever during that time and she had lots of pumps beeping regularly. My Dad was able to do several shifts at the hospital, told Kara numerous Boy Scout stories and flew home May 14 the day after Kara returned home from the hospital.
Kara was due back to Addenbrookes May 16 for her solo Doxorubicin chemo. She was quite excited as she was to be roommates with her new friend Amy Conroy who also had osteosarcoma (only hers was in the leg). Kara had to have an Echocardiogram before doing this chemo as Doxorubicin can cause heart damage. Unfortunately, Kara did not pass the ECG test even after testing her twice, so the doctor had a talk with us about it and sent us home. We were distraught at learning her heart was damaged already this early on. Usually the damage shows up years later and to show up now was not good. If she could not receive this drug, it could compromise her outcome in defeating the cancer. If she is able to have it again it could permanently damage her heart. A specialist then gave the ECG again three days later and the numbers he got were right on the bottom line. His recommendation was to give the Doxorubicin so as to give Kara the best chance of surviving the cancer. Five days later, Kara received this chemo nicknamed “The Red Devil”. It was with a heavy heart that we gave permission for her to have this final dose.
Meanwhile, during our short delay, Kara received her first copy of her finished book in print!! She became an instant celebrity receiving three newspaper interviews in just a few days! Kara’s story filled the front page of the Mildenhall Journal, our local British newspaper. It turned out to be great timing to boost our spirits. Staff from Dreams Come True and Arima Publishing came to our home on May 30 to meet the author and present her with 60 copies of her book, Tales of Cunburra and Other Stories! We were blessed to meet these wonderful people who made this dream possible.
After a week at home, the doctors once again thought Kara’s bloods were ready for chemo. However, it ended up being another false start and we were sent home just as they were hooking up her chemo thanks to my inquiring of her blood levels. Once again they had dropped rather than gone up. This time Kara ended up getting a fever and had to go to her local hospital for several days to receive IV antibiotics before she was finally ready to begin two more weeks of Methotrexate. While she was at her local hospital, West Suffolk, the teacher there continued to promote Kara’s book and sold nearly 30 copies. Kara was quite the celebrity and they were amazed to see her looking so well as their main memory of her was during chicken pox and the dreaded platelet transfusions.
Kara went straight from one hospital to the other without going home. She began her two weeks of Methotrexate on June 13. Ward and I continued hospital duty every other day until Steve Bridges arrived on June 18 for the second time and he was able to take a couple of shifts. Kara sold some of her books at Addenbrookes during this hospital stay and the Play Specialist, Angela, arranged for Kara to have a book signing on the ward June 23. BBC Look East Television crew came out and did a story on Kara as well as the Cambridge Evening Newspaper. Kara did marvelously well considering she just finished almost fifteen straight days in the hospital and had some post chemo nausea. She sold and signed 15 books that afternoon and read out of her book to the children. Representatives from Dreams Come True and Arima Publishing came to give their support as well. Kara was quite a tired little girl and fell asleep on the way home with Steve propping her head up.
Steve left on June 28. Kara had one week off chemo then went back to Addenbrookes for her final last two weeks of Methotrexate (the ones she missed in Oct. and Feb.). We had mixed feelings about being done. On the one hand, Kara had made so many friends at the hospital; she was going to miss them terribly. On the other hand, the chemo would be finished and we could begin to resume a normal life again. Kara would soon get her tubes removed and begin to feel better, eat again, grow her hair back and start back to home schooling again. The Play Specialist, Angela, helped Kara make a special American flag cake as a congratulations/good-bye cake. We took lots of pictures of all our friends, doctors, nurses, play specialists, teachers, cleaning ladies, dietician, psychologist, etc. Kara wrote in her journal all year long to remember all she’d been through. We finally finished on July 14, our last day to be in the hospital. It seemed strange to leave.
Kara went through some sad times missing her Addenbrookes friends. But we still had visits back for various tests and these visits seemed to help make the good-byes less final. We had a couple more visits from our very sweet Community Nurse, Audrey to flush Kara’s Hickman Line. Kara finally dispensed with the NG tube on July 30. She had a final GFR (Kidney Function Test) on August 9. Her Hickman Line was removed on August 17 which had been in nearly 10 months. It had served her well and it was a little sad for her to be without it. A week later she was finally able to take a full bath again! Little by little she was able to scrub off all that old dirty slough skin that had accumulated for so long.
August 18, one day after Kara’s Hickman was removed marked the one year anniversary of that first x-ray which revealed a large bone cyst (tumor) in her right arm. Almost one year to the day completed the journey of treatments for her bone cancer. We could have never planned or guessed what this year would have been like. Only God knew and we had to take one day at a time taking the hard times with the blessings. God truly blessed us in ways we would never have imagined as people blessed us through words, prayers and actions. Kara received a multitude of cards and packages with lovely gifts, notes of encouragement on our Caring Bridge website, visitors, and heartfelt prayers. We were given an outpouring of support through gifts and meals, offers to help in any way possible, friends and family flying over the ocean to be here to help. Truly we have been blessed by all of you. God has taken a very hard year and turned it into something beautiful. Truly He has heard all your prayers as Kara is living proof.
Since completing her cancer treatments, Kara has resumed home schooling, has been out on her scooter, is playing with friends and in general resuming the normal life of a 10 year old girl. Ward’s parents, Lloyd and Greta, came for a visit the end of August and we were able to show them some local sights and introduce them to some of our British friends. Ward’s Dad at age 89 had no trouble keeping up with us. He was remarkable!
Kara has had two post chemo chest x-rays so far to check her lungs for cancer. So far all is clear. This is the most likely place the cancer would return so she will have regular x-rays every two months. Her heart function tested normal at the end of August so we were relieved to get this great news. However, her heart will continue to be monitored over the years as well. Kara had her first arm lengthening surgery on November 6 in Birmingham, England where her rod was extended 1 ½ cm. She may have another lengthening in 3-4 months.
Our prayer is that Kara will remain cancer free. The next few years are the most critical so we continue to covet your prayers in this. Our precious daughter fills our lives with joy as she goes about the house singing praises to God, writing stories for His glory, making prized dollhouse bits and pieces, smiling and just enjoying the simple things in life. It did my heart good the other day to watch her grinning from ear to ear as she watched Anne of Green Gables. Kara is our little Anne of Green Gables. She needed us but we needed her even more. She has brought so much happiness into our lives. And those who meet her can’t help but smile and feel the joy that flows out of her.
Merry Christmas to all of you and Happy New Year in 2007.
Love,
Linda Siert (Ward and Kara)