January 31, 2010
We’re into our third year. Bethany’s hair is to the middle of her back, about where it was before she lost it. She’s a healthy, happy second-grader, with two big front teeth almost all the way in. She is very hard-working and gets good grades. She loves art and crafts, and daily makes beautiful creations at the kitchen table. She also loves to cook and is usually begging to help with whatever Mom is making. She loves to run and play outside, but has to use an inhaler when her asthma acts up. She’s a serious child, but has a fun side, too.
Bethany had an appointment at Primary Children’s just a week ago. She only has visits every six months now, and starting in July it will be once a year. Her blood levels were very normal, and the doctor said she looks great. He told us that the chances of the disease coming back are slim at this point. It can happen up to five years after treatment, but each year the percentages get smaller.
Add a comment February 1, 2010
January 19, 2009
It has been 2 years since Bethany’s diagnosis. It seems like yesterday, and yet, it seems like it never really happened. Like a dream, but at the same time a vivid, minute-by-minute documentary. We can go several days without even thinking about it; and then something triggers the memory and it all rushes back.
Bethany seems like a normal, happy-go-lucky child, except that she is far too knowledgeable for her age. We still protect her as much as she will let us. She is healthy and strong, but we want to treat her like a fragile doll. We’re just so glad to have her!
We did have a little scare a few weeks ago. Bethany began complaining of sore muscles. This was the first symptom of Leukemia that we saw before. One morning she woke up too stiff to walk. We immediately took her to our local doctor for a blood test. Everything was perfectly normal. Perfect. We were so surprised. We were sure that it was back. The doctor thought maybe a virus she had had a few weeks earlier had settled in her joints. It brought back floods of memories and much gratefulness. Life is good, at the moment.
Add a comment January 20, 2009
September 18, 2008
Bethany is an official first-grader now. She goes all day, and walks home with her brother and sister. She really likes having lunch at school. She is doing well, and in fact, is just getting over the first cold she has had that didn’t turn into an infection. This is a good sign!
Mom has enjoyed the time alone during the day. She has been busy applying with the music therapy volunteer program at Primary Children’s. She will play the piano there for one hour each month and is very excited to give back something that was dear to her during Bethany’s hospitalization.
Add a comment September 18, 2008
August 9, 2008
This week was the one-year anniversary of Bethany’s last day in the hospital. The kids kept teasing her that she must be married if she was having an anniversary, so we decided to call it “Happy One Year Out.” We had a very low-key celebration–just some treats like the ones we served her friends at Primary Children’s a year ago (Ring Pops, Laffy Taffy, and cookies). We didn’t even have the whole family here, just a few. We just wanted to mark the day.
The world has gone on with life, and it should. We have a great desire just to be normal. We can never forget what we have been through, because it has changed us. But sometimes we can go several days without even thinking about the ordeal. Then some small thing will trigger a memory of what we were doing this time last year, and we have a sober moment. We’re so glad to be at this end.
We are beginning to recover financially. Our portion of the health-care bill was almost enough to buy a car, despite the fact that it was only one-half of one percent of the total amount. We have been visiting the hospital clinic every two months, which is a $700 charge, with our payment at about $90. Thankfully, the doctor only wants to see her quarterly now.
Happy One Year Out, Bethany!
Add a comment August 9, 2008
Bethany graduated from Kindergarten at the end of May. That was a great mile stone. She missed the entire first month of the school year and 30 days during the next 8 months, but no matter. She did great.
She is enjoying her summer. This time last year she was tethered to an I.V. pump and heading back to the hospital. She feels very free. She loves to run and play outside and can climb onto the rope swing alone now. We bought a family-size inflatable pool and we get that out at least twice a week. Bethany is a little water bug!
With the warmer weather she has been well more of the time. Her counts are just what they should be, although they are always changing, just like everyone else. She is getting more and more normal.
Her hair is long enough to be in her eyes and we have begun to pull it back with pony tails. She wants it to be long again, and we are growing out her bangs too, but we got used to her with bangs so she looks a little different with them up. It’s more than a pixie but not quite a pageboy.
Add a comment July 1, 2008
April 28, 2008
We had a wonderful time! Bethany was so excited for her first plane ride, and she loved it. On Monday eight of us flew from Salt Lake to John Wayne airport in Orange County. From there we had a rental car to drive to Anaheim. Our four married children drove to California and we met together at different times. We stayed at the Paradise Pier Hotel, and it looked out over Disney’s California Adventure Park. We were on the 11th floor, so we had quite a view. We spent the afternoon in Hollywood, visiting the Griffith Observatory, Hollywood sign, and Hollywood Boulevard. It was very eye-opening.
Tuesday was our day at the beach. We drove to the Santa Monica Pier and played in the sand and water for hours, even though it was only about 65 degrees outside. A walk on the pier convinced some of us to ride the ferris wheel. The view was spectacular! Several of the kids had never seen the ocean before. We ate dinner at Mariasol on the end of the pier. The service and the atmosphere were amazing!
Wednesday we went to Disneyland, only the happiest place on earth! We started out together, but soon split up to move more quickly and enjoy the things we each wanted to. Bethany and Mom became a pair and were a good match. We learned to navigate the park and jump onto rides that had no waiting. We met the others for lunch in Toon Town, and dinner was a pretzel from Downtown Disney on the mile-long walk back to the hotel, after the Disneyland Parade, of course.
Thursday we decided to have room service bring our breakfast, and it was very elaborate. The morning was spent in California Adventure, but Bethany’s favorite was the kiddie water parks and playgrounds. She did go up in the Zephyr, a sort-of flying rocket ride. We all had lunch at the Rainforest Café in Downtown Disney. That was an experience in itself! We wanted to spend the rest of the day in Disneyland and we stayed until after dark. It was warmer than the night before. Disney was filming a mass Quincenera, so the castle was roped off and surrounded by people, but we couldn’t see much of it. We hurried to buy souvenirs before leaving the park, though the shops were crowded by that time. The walk back to the hotel was magical in the dark. Everything was perfect!
Friday we checked out of our hotel and drove down to Carlsbad, to visit Legoland. We only had a few hours before going to the airport, so we did mostly sight-seeing. We went inside a Lego factory and saw how they were made. Our favorite was Miniland, miniature replicas of some of America’s most famous cities. The sky-scrapers in New York were about 20 feet tall, all made of Legos. Again, Bethany spent most of her time chasing the water and jungle gyms. The drive along the coast was really nice. We found the airport and had an extra hour to relax, then we flew back to Salt Lake with the sun setting behind us.
We came home a little sunburned, very tired, and stiff and sore from all the walking and playing we did. Bethany is very content that her wish has come true. The same goes for all of us. We are so grateful to everyone who made this trip possible! And we are very glad that we still have our little girl.
4 comments April 28, 2008
April 18, 2008
Bethany’s Bon Voyage Party was great! We had a large crowd of people, all of whom had something to do with Bethany’s healing. It meant so much to have them there. If we’d have had room, we would have invited all of the doctors and nurses, too.
They sent the children on a scavenger hunt that covered the grounds and building. It took them out to the garden, to the fountain and brook. They saw the current Wish Kids wall, where Bethany’s picture hangs next to all of the Make-A-Wish kids who are waiting for their wishes. The clues took them to the wishing room tower. Bethany used her key to unlock the door, where magical music and colored lights revealed a huge gift. It was a backpack for her trip. It was filled with snacks and fun things to do on the plane. They also gave her a Minnie Mouse dress to wear in Disneyland. It is darling! She was so excited and put it right on, over her clothes! She always wanted one!
Everyone had cake and ice cream and signed Bethany’s page in the Make-A-Wish scrapbook, and then we watched Bethany pull her star up to the ceiling with the other stars. They are metal and glass, like stained glass windows. Bethany’s is orange, and has her name etched on it.
Our kids have been out of school this week for spring break, and it has been good, because we have spent the week shopping and packing and preparing to leave on our trip. They are too excited to be good! It’s a dream come true, especially for Bethany.
CALIFORNIA, HERE WE COME!!!
Add a comment April 18, 2008
April 7, 2008
Finally April is here! Bethany made her wish last fall, but we wanted to wait until everyone in the family could come along with us. Since three of our married children (or their spouses) were in college, we were aiming for their spring break. We have never taken our family to Disneyland, so we were hoping that we could all be there together with Bethany. It has been a long wait.
Make-A-Wish is sponsoring a Bon Voyage’ Party at the Wishing Place in Murray this Friday. Some close friends and extended family will share in the excitement. Bethany gets to hang her very own wish star on the wishing star ceiling. She can go in the wishing room tower again, because she still has her very own key. We will end the evening with cake and ice cream. It will add to the magic of her wish coming true. What a great organization! It is wonderful that people care so much. We feel so honored to be recipients of such a gift.
Bethany is feeling great and seems to be doing well. Her first check-up in 3 months at Primary Children’s Oncology Clinic is this week. We had almost forgotten that she ever had cancer. It is good to be getting back to normal.
Add a comment April 7, 2008
February 27, 2008
Bethany has had a fairly good winter, although she’s had a drippy nose and cough for most of it, but has felt quite well, until a few days ago. We took her to the doctor here in Spanish Fork today. Her cough sounded terrible and she had a low-grade fever, plus she just did not look good. We were afraid she had pneumonia again, but it was a virus affecting the bronchial tubes. She will have to inhale Albuterol every four hours until she is well.
She had her sixth monthly check-up on January 17, and now she only has to be seen at Primary Children’s every three months. Her immune system is slowly coming back, and most of her blood counts are near normal again. Hopefully, when the weather warms up she will be able to stay well.
Her hair is about 2 inches long and a dark walnut brown. We keep trimming the back so the front can catch up. She’s a cute little pixie. She gets a lot of compliments on her “hair cut.” People don’t really enjoy hearing that seven months ago she didn’t have any hair, so we just smile and say thanks.
We are still scheduled for our trip to Disneyland in April. We expect to start finalizing our plans soon. All of our children will be there with us. Everyone is pretty excited.
January 4, 2008
The Festival of Trees went great. The “fireflies” lights in the jar on top of the tree wouldn’t stay lit, but that was our only glitch. We didn’t know if anyone would buy a Christmas tree with bug ornaments on it, and hoped to have it donated to the ICS Unit, but it did sell, so we sent them a poster with pictures instead.
Bethany’s Kindergarten class did a musical program just before Christmas, even though her teacher’s house burned to the ground only days before. That was a little traumatic, but everyone was okay and she has come back to teaching again now. The family is living with her parents for the time being.
Bethany had an enjoyable Christmas, although she had stomach flu on Christmas day. It was gone by evening and she was playing hard with all of her new toys. She asked Santa for a scooter and a sled, and she also got a Ponyville castle with lots of accessories. She loves new clothes, and she got lots of shirts, pants, and p.j.’s. We kept thinking how glad we were to be celebrating at home and not in the hospital..
On New Year’s Eve Bethany stayed up until midnight, blowing horns and throwing confetti. She enjoyed the almost two weeks off school, playing outside in the snow and watching all of our 9 new movies. We used our Christmas money to see “Alvin and the Chipmunks,” which was Bethany’s very first movie theatre experience. She feels great, and just loves life!
November 15, 2007
Bethany is doing much better now. After the antibiotics her pneumonia seemed to be completely gone. She did have a 12-hour stomach flu last week, but bounced right back from that. Since her immune system is still weak, she will probably catch everything that goes around. We don’t feel like we can keep her in a bubble, though we’d like to. Hopefully, the illnesses will help her body to build up resistance. She has put on about 8 pounds! She looks good. She was so thin.
She is enjoying life like someone who has just been set free. She loves to run and play outside. She has been catching bugs in jars and cages and with her hands. She always has at least one little bug “friend” in the house. She thinks spiders are cute! This is why she has the nick-name, “Bethany Bug.” She has always loved bugs.
We are doing a Christmas tree for the Utah Festival of Trees. It is dedicated to the ICS unit at Primary Children’s, because we feel they are the ones who saved Bethany’s life. The tree is called, “Bethany Bug,” and will be decorated completely in bug theme with Christmas colors. Bethany’s sisters and Mom made the ornaments, and extended family members offered suggestions and financial support. Aunt Lyn made the tree skirt, and Grandpa Allan made up some more of his rock bugs for us. The Festival is open to the public from November 28 to December 1. The hours are 10 a.m. to 10 p.m., and tickets are available at the door: $4 for adults, and $2.50 for children ages 2-11. It will be held at the South Towne Expo Center, 9575 South State Street, Sandy. All proceeds will go to Primary Children’s Medical Center. Come and see our “buggy” little tree!
November 2, 2007
Bethany has had a rough couple of weeks. She caught a cold which lasted more than a month, but it seemed to be getting better, and then got worse. She ended up with pneumonia. She had to go on antibiotics by I.V. for 7 days. Then, yesterday when she was at the Primary Children’s Oncology Clinic, she had a bad reaction to a drug she gets monthly there. We don’t know if her body was building up resistance to it or if it was from mixing it with the antibiotic. She had to have a quick dose of Benadryl to counteract the hives and itchy throat. Her immune system has dropped to a low level again, probably from the infection. Hopefully she is through the worst now and can get back to school. She did really well for about 2 months.
Our Make-A-Wish representatives, Kandace and Nicole, came to visit Bethany at our house. They brought treats and a magic wand and a plaque that says Bethany’s wish will be granted. We have reservations for April. Dreams really do come true!
September 24, 2007
Our family was invited to the Make-A-Wish house in Murray on Thursday, the 20th. Bethany was nominated by our hospital social worker. The Wishing Place was an experience in itself! There was a “welcome” poster with Bethany’s name on it, gifts, balloons, and root beer floats. We had a tour of the gardens and the building. The walls tell stories of past and present Wish Kids and how wishes are granted. There are fountains and ponds with goldfish, and stars are everywhere. Bethany had her own key to the Wishing Room, a second-story tower room with pastel-colored lights and magical music playing. Each member of the family gave Bethany their wish for her and then her wish was sealed in a canister and seemingly sent into space.
She wished for a trip to Disneyland. She has never been there. We haven’t ever been able to take our family. Make-A-Wish will pay for all six of our children who live at home. They will fly us to California, provide hotel and rental car, 2-day park-hopper passes, food, and souvenirs. We hope to have our four married kids and their families meet us there. In a few weeks we will be notified whether her wish can be granted and when we will go. We are hoping for sometime next spring.
During Bethany’s third treatment, she spent 21 days down in bed with fevers. She became very discouraged and wanted to give up. We tried everything that we thought might cheer her. She didn’t eat much and lost a lot of weight. It wasn’t until she heard of Make-A-Wish and decided to wish for a trip to Disneyland that she began to have hope. It carried her through the remaining two month-long hospitalizations. She is doing so well now, and we believe it is partly due to a wonderful dream that just might be coming true.
September 17, 2007
Bethany had her catheter removed last Friday. It was a surgical procedure done under anesthesia in the Rapid Treatment Unit. Everything went well. It took about 12 minutes. Within an hour she was up running around and spent the day school shopping and walking through some Salt Lake parks with her oldest sister, Maegan. The opening is healing nicely and doesn’t bother her at all. The lines were such a nuisance; she is glad to be rid of them.
Yesterday was her first time back to church. She was so happy to be there! She wasn’t shy at all. She wore a wide ribbon around her head to match her dress. Her short brown hair is coming in thick and looks very stylish!
Today was Bethany’s first day at Kindergarten. Mom brought pictures to show the class and talked about the hospital and what Leukemia is. The kids were very accepting and excited to finally see the girl they had been hearing about. Children in other classes have been staring at this little girl with the boy-like hair, but they will have a note read to them in class to explain her condition. We felt like educating the entire school ahead of time would help everyone to understand– to answer their questions about Bethany.
This has been a monumental week!
September 6, 2007
Bethany had her appointment at the Oncology Clinic at Primary Children’s yesterday. The doctor said it is still too soon to know anything for sure, but she looks really good. Her numbers are getting high, and after looking at her blood smear he cancelled the bone marrow test because he didn’t see anything suspicious. He said she could start school right after the catheter is removed. We have an appointment next week for that minor surgery.
She is completely off all meds now, except for an anti-pneumonia I.V. drug once a month that she will get at Clinic. We have taken the “Caution” signs off of our doors, but still encourage everyone, especially Bethany, to wash often and avoid spreading germs. The home health nurse won’t need to come any more. We’re starting to feel very normal!
Mom is preparing to go to Bethany’s first day of school and teach the children about Leukemia and Bethany’s experiences with it. We’ve been a little concerned about how she will be received, but we discovered that two of her best friends are in the same class, and that makes us feel better. They still love her. In fact, she is confident that everyone loves her. She doesn’t mind being stared at. She’s okay with who she is; we just want it to stay that way.
We feel very blessed. Bethany has responded well to her treatment– exactly the way she was supposed to. She had some scary side-effects, and it was really stressful at times, but hopefully that’s all behind us now.
August 28, 2007
Bethany can go outside! Her counts are coming up nicely. She is almost high enough to go out in public. In fact, this is the first time she’s been this high and not gone back in the hospital for more treatment.
She has not had a single problem. She has felt great. She is off her antibiotics now, which means only one med twice a day (an antifungal). We are anxious for her exam, so we can have an idea if the Leukemia is really gone.
Her hair is about 1/4 inch long and is a nice dark brown. Her skin is still really dark from the chemo. Her neck is discolored from the incision to place her central line, and we don’t know, but it may stay that way for a long time. She looks beautiful to us!
She wants to say “I love you” to everyone who cares about her and has been with her through all of this. We are so grateful that so many people shared this burden in so many ways, whether you just checked on us to see how she was doing, or brought meals to our house, or gave gifts to Bethany and to our family. We have felt your love, your prayers, and your concern. Thank you.
August 19, 2007
Bethany’s counts are slowly coming back up- a little faster than last time, maybe. She still can’t go outside, but is anxiously waiting for that. She is still very healthy and running all over the house. Actually, she is running the house!
Summer vacation ends tomorrow. The kids will be glad to have a break from each other and from being inside. They are really sweet not to do anything Bethany can’t do, but they have had a little too much togetherness. Mom and Bethany plan to enjoy some time together again and maybe go out to lunch or do some shopping when she is able.
Her first check-up is on September 5. If all is going well, we will decide when she can go to Kindergarten. We are slowly easing back into life. People have been so thoughtful and kind during this challenging time. We are so grateful. We appreciate your concern. We have felt your prayers.
We adopted this motto at the very beginning, “We live by faith, we always have. So the journey, wherever it leads.” Bethany’s life has truly been in God’s hands. He has taken very good care of her. We did all we could and then we had to stand back and let Him take control. Whatever the future holds, we know we will be okay.
August 9, 2007
On Monday, August 6, Bethany’s ANC was 100. They told us first thing in the morning that we could go home! It was such a shock. We were thinking we had a few days to celebrate and say goodbye. Not that we didn’t want to be done, we’re so glad for that. We just felt like we didn’t have an adequate chance to say “Thank you for giving us back our daughter.” We had a very brief gathering and put out refreshments, and then we were gone. It will be good to have monthly exams at the hospital clinic, because we can stop in and see our friends in the unit, too.
Bethany is feeling great! As always, being home gives her so much freedom, even if she has to stay in the house. She improves much more quickly here. She is getting lots of exercise on the mini tramp and running up and down the stairs. She has been helping in the kitchen, and today she and Savannah mixed up some homemade Tootsie Rolls.
The family is sure glad to be together again. Mandy is ready to move on, and the others are happy that Mom can help them get ready for school. They all like the fact that Mom does most of the cleaning and cooking now. The daily hugs are nice, too. We appreciate each other so much more after spending 5 one-month stays apart.
The next phase of treatment is to monitor Bethany’s blood levels closely. Our home health nurse will come and draw twice a week, and we go back in one month for a bone marrow test. At that time we expect to find out when her catheter will be removed. We feel very blessed to have good health insurance! With hospital and doctor bills totaling more than half a million dollars, we have a maximum out-of-pocket which is $2,500. That seems a small price to pay. We may never feel completely free from Leukemia, because it has been known to come back any time up to 5 years later. But, we can honestly say that it has been a growing experience that we are grateful to have had. We’re humbled that the Lord has allowed Bethany to stay with us.
August 5, 2007
Bethany is still in the hospital! We thought she would be. The unit is completely full and they have a waiting list for people to get in. We keep telling them they can have our room. Today the doctor came in and said, “What are you still doing here?” But they won’t let us go. Tomorrow will be day 32, the same day we went home last time. We knew it would be longer.
Bethany feels great. She is keeping herself busy, even though she still can’t leave her room. She hasn’t had any problems, except they keep her on a heart monitor at night, and it is really more of a nuisance than anything. Mom isn’t getting any sleep.
Blood counts are slowly coming up. We might be able to go home in a few days. It could still be a week or two, but we are going to have her farewell party this week, just in case. They have a “Happy Last Chemo” banner for her door, and the nurses all come and sing to her, and we’ll have refreshments for everyone. We’re almost going to miss it here–but we can’t wait to get home!
July 30, 2007
Bethany is feeling great! She is still at the hospital, and we don’t have any idea how long that will go on, but there is a hint that her counts are beginning to come back up. We could be out of here in a few days, but it might take weeks, so we try not to plan on anything. We are starting to run out of things to do, that interest us, anyway.
The doctors are pleased with her progress. She has had a little trouble with low blood pressure and low heart rates, but not enough for concern. She is on a lot of medicine: 3 antibiotics, 2 meds for stomach, and an anti-fungal. The bacterial infection she had last week took several days to identify, and was gone long before that, but it turned out it could have been very serious. We’re very glad it was treated so promptly and that it went away.
Bethany’s eyebrows and eyelashes began to grow back about a month ago. They are a nice, dark brown, just like before. She looks so beautiful! Her hair is a mix of white-blonde and dark brown; very coarse. It was about 1/4 inch long until just a few days ago. Now it is only on the very top of her head. The sides and backs have rubbed off where she has laid on it, just like a baby. Her 7-month-old nephews have more hair than she does! But it will be back. She has dark skin from the chemo, and her scalp is peeling to a creamy white layer. We’re glad for the many darling hats she’s been given. Her principal says it will be okay for her to wear them at school.
July 23, 2007
Bethany has been at Primary Children’s for ten days now. She has kept herself busy by painting, knitting on a loom, and playing with toys. Her mom’s cousin, Jenny, from Washington, came to visit this week just to help pass the time. She brought books and read to Bethany, played with her, and added to her Strawberry Shortcake doll collection. She even brought Savannah up to the hospital so that the girls could spend time together. Things seem a little dull around here now that she has gone back home.
Bethany’s counts have been at zero for eight days. She began to have stomach problems two days ago, and yesterday she woke up with a fever. They gave her Zantac and resumed her anti-nausea meds. She also went on two anti-biotics immediately, and they added another today when they found gram-negative bacteria growing out of her blood cultures. She feels much better now and hasn’t had any more fevers. She only had to have one dose of the dreaded Tylenol! Hopefully she is on all the right medicines and won’t develop any other complications. We have had much harder times than this in the past.
We still don’t know how long we will be staying here. It might only be a week, but it could be a month, or longer. We’d like to be home before school starts, but we’re pretty sure that Bethany won’t be able to go to Kindergarten for awhile yet. We are just very happy that she is still with us.
July 15, 2007
We did get to go back home last Sunday afternoon, and stayed until Friday morning. It seemed like we had never left home. A two-day stay in the hospital was nothing! Bethany continued to run outside every chance she got, and enjoyed life like she was not in the middle of chemo-therapy. Coming back to the hospital was harder this time, though, because we knew we would have to stay.
Her very last dose of chemo was administered today. We took a picture and made a big deal over it. The hospital staff plans to do a “Happy Last Chemo” party, but it will probably be closer to the time that she goes home.
With two separate series of chemo in the same round, Bethany’s bone marrow will be attacked hard at two different times. When we came back two days ago she was getting close to 0. She may be down as long as 3-4 weeks. That could mean infection after infection or just a waiting period similar to her last stay. There is a possibility that they will use Neupogen to bring her counts up faster, but that hasn’t been determined yet. We are ready to be done, though. We sort of got used to being home, and we liked it there.
Bethany had another Priesthood Blessing before we began this treatment. As always, it was a very comforting one, but there was something told to her that is worth sharing. That is, that this experience will be but a memory of her childhood when she is grown.
July 7, 2007
Bethany visited Hogle Zoo on Tuesday, July 3. It was her first time. We had a family pass from Primary Children’s which got 13 of us in for free! We had a great time, despite the funny looks we got from Bethany’s mask and bald head under her hat. She doesn’t mind at all. In fact, one little girl said, “Look, Mom that girl has a funny blue thing on her face!” Bethany just laughed. She loved the close-up view of the elephants and girraffes. Her favorite part, though, was the playground.
We had a wonderful 4th of July at home. We played in water and ate homemade shaved ice. We had an indoor picnic of sloppy Joes and salad and s’mores. At dusk we created our own fireworks show, with Bethany and Savannah as fireworks coordinators, choosing which ones to do next.
On Thursday, the 5th, we made an emergency trip to Salt Lake. One of Bethany’s lines was clotted, and Mom tried to flush it and it broke. They repaired it at the hospital clinic and also did her blood test. Her neutrophil count was 1300, high enough to begin chemo again, so they made her appointment for admittance the next day.
It was fun to come back to the unit, because we had been at home for nearly 4 weeks, and all of Bethany’s nurse friends were so excited to see her. They made a big fuss over her. Her chemo began yesterday at 6 p.m. She will have 4 doses, one every 12 hours. On Sunday at noon she will have an injection of another type of chemo. After a short observation period she can go back home. We will probably come back next Friday to repeat the process and stay for count recovery. She isn’t feeling very well today, but that is normal when she begins chemo.
June 29, 2007
Bethany is still at home, and enjoying it so much! She has felt great- no problems at all. Her neutrophil count was zero when we brought her home and it has gone up quite slowly. She had to be on antibiotics and couldn’t go outside until she was 500. It took days for her to be at 100, and two weeks to 300, but then she went back down to 200. Now, suddenly she is 800, and at 1000 she goes back to the hospital for more chemo-therapy. She ran outside the minute she found out that she could. She loves to play in the yard and wants to enjoy it as much as she can. It was hard for her to have to stay inside for so long, but she was just glad to be home and be able to run around the house. Her brothers and sisters were really good about staying in with her and made good company. Now she can enjoy the little wading pool we got her (she can only wade, because of her indwelling catheter), and she is still learning to ride her two-wheeler. She usually wears a hat over her bald head and she has to wear sun screen because chemo makes the skin very susceptible to sunburn.
We hope to be able to enjoy the 4th at home, but may be going back to the hospital soon after that. This will be her last chemo-therapy if everything goes well. Her medicine schedule is a little different this time: two days of chemo, four days off, and then two more days of chemo. Since her neutrophil level doesn’t hit bottom for about ten days, she will be able to come back home for the four days in-between. After the last two days she will have to stay for count recovery- maybe 2 to 4 weeks. This final treatment is supposedly a little less intense, but we have no way of knowing just how she’ll react to it, since she has been through so many therapies.
We’re hoping that this will be the end of the Leukemia. She will have weekly blood tests and monthly exams at first. After a year they will do annual exams, probably for the rest of her life. She definately has been changed by all of this. She is handling it well, though. She has touched so many people with her courageous spirit, and will likely continue to do so.
June 12, 2007
Jana will add more to this but I wanted everyone to know that Bethany came home on the 10th. She is so happy to be home (except that she can’t go outside yet) and is doing very well. We are all so happy to have her and her mom home.
June 9, 2007
Bethany is still at Primary Children’s. They told us her counts would come up slower each time, but her last stay she was so sick that they gave her Neupogen injections and they came up fast. This has been our longest stay now. Every day we hope to see a big change, but some days she goes up a little and some days back down. She has felt great for twelve days! We keep thinking we could be doing this all at home, but it is nice to know we are in such a sterile environment. Everything is cleaned with disinfectant daily, people wash their hands constantly, and those who are ill are asked to stay away. It’s hard to keep the same standards at home, and we’ve never taken her home with such a low immune system before. We are ready for a break from the hospital, though. Hopefully it won’t be too long, now.
May 30, 2007
Bethany’s temperature started going up on her fourth day at zero. We put her on anti-biotics immediately. They drew blood cultures those grew a type of strep bacteria the next day. She began to vomit and have diarrhea but that seemed to be unrelated. She might have had a stomach flu. On day seven we started to see some white blood cells on her lab report. Day eight her fever slowly came down and stayed down. Day nine she was up playing again. Today is day ten. Still no absolute count, but the white cells are even higher.
She looks great! This has been our easiest time here. She was stronger from the start. She has kept her weight up. She lost the rest of her hair this time, though. She’s healthy and sassy, really tired of hospital food and wants to play with her brothers and sisters. We need to get her home just to un-spoil her again! We’re hoping to get there by the weekend.
May 21, 2007
Bethany is doing so good! She came into the hospital well this time, and she was able to go for walks outside, play in the toy rooms, and go almost anywhere in the hospital until her blood counts dropped. She has been here 11 days now, and yesterday was the first day she had to be confined to her room. She has put on more weight and can run, jump, and climb as well as ever. (She has been through periods of time when walking was difficult.)
We are approaching zero immune system now, and since we have never gotten through that ten-day stretch without complications, we are hoping for the best, but preparing for the worst. She is going into it stronger this time. We have heard of kids who get through neutropenia, as they call it, without a single problem except for boredom. That has been our biggest challenge this time, so far.
Mandy graduates from high school tomorrow. Our other kids will be out of school for the summer starting this Friday. It will be a challenge to keep them busy. Mandy is planning to give us her summer to take care of them, except for girls’ camp, which is the week of June 12, and we should be home just about then. We will probably come back to the hospital for the month of July, and then hopefully we will be done.
May 11, 2007
Bethany was admitted to Primary Children’s again yesterday. She had a glorious two weeks at home! She got lots of play time and exercise. She ate as much as she could, and she gained back about one pound. She’s still really skinny but looks more vibrant. Her lungs are much better, although she still has a little cough. She is doing well, considering what she has been through.
She started chemo at midnight. This time she has one drug on days 1-4 and another on days 3-6. We will again have a period of about 3 weeks here for count recovery. This is the second intensification round, fourth chemotherapy. She keeps reminding everyone, though, that she only has one more after this. She wants to have a big farewell party with all of her nurse friends. She has made about 75 of them now! They are sure good to her. She has definately won their hearts.
We can’t believe how much people have done for us. We continue to receive gifts and food and acts of kindness on a daily basis. We don’t know how we can ever thank you. It is very heart-warming and makes our burden lighter. Thanks for your prayers, too. We feel them. We know this is a great blessing. We hope you are blessed for what you do.
May 1, 2007
Bethany is doing much better now. Her counts came back quickly. Because her infections seemed so threatening, they gave her injections of Neupogen, which stimulates cell growth. She began to improve immediately, but it wasn’t until she got home that the life came back into her. We have been at home for 5 days now, and she is getting stronger ever day. She was allowed to go outside the first day, because her white blood count was at a safe level. She is enjoying the sunshine and getting lots of exercise. She has color in her cheeks!
She is still coughing a little. She is very skinny and lanky. She has grown taller in the last few months, but has lost weight. She is a picky eater anyway, but chemo changes her taste buds. She doesn’t like hospital food very well, either. She is eating better now that she is home. The dieticians tell us to give her foods that are high in calories and fats. No kid could complain about that!
Our understanding is that she will be admitted again on the 10th of May. We will have had two weeks at home. This next round will be as intensive as the last one. We are just hoping we can keep her well in the meantime, so she doesn’t have so many problems again. After that we will have one more treatment, and then they just watch her to see what happens. Either it will be gone, or not. It could be that she is already in remission, but we have to do all five treatments without waiting to see. We get the impression from her doctors that she is responding well. Hopefully, by the end of summer we will be done with it. We would just like to get back to normal.
April 23, 2007
Bethany has been at Primary Children’s for three weeks now. She has had fevers every day. We don’t know for sure what is causing them. At first we thought it was the higher dose of chemo. She had RSV when we came, and she has had trouble getting rid of that. C.T. scans and x-rays showed infections in her lungs and sinuses again. They did a biopsy of the sinuses to be sure it wasn’t fungus, but that was negative. She is still coughing and is taking the steroid, Albuterol, but a couple of days ago they tested her for RSV again, and it was negative. We believe she got C.Diff again, but that was never tested, because she had all of the symptoms and had had it twice before. None of the blood tests are bringing back answers. They tell us that when the body has nothing to fight infection, whatever bacteria is in the body can take over. So, we’re just trying to keep her comfortable and hoping that her blood counts will come back soon. It seems that her problems all vanish as soon as she has white blood cells. They all go straight to the source of the problem.
She did have a hint of a change in her counts today. We might be able to go home by next weekend. She’s been quite a different person this time- not very interested in doing anything. We’re looking forward to seeing our happy little girl again.
April 4, 2007
We just spent a week at home, and are now back at the hospital for Bethany’s third chemo. It was a nice break, but not nearly long enough. We celebrated her birthday early with her friends at a little party. They came dressed as bugs and played bug games and ate bug treats. Bethany was thrilled and had a great time. We will have our family party at the hospital on her real birthday. While at home, I registered her for Kindergarten next fall, but she probably won’t start at the beginning of the school year. We also colored Easter eggs and had our annual Easter egg hunt in the yard. It was a lot of fun and we enjoyed seeing Bethany so happy. She gets so much more exercise at home. She loves her freedom, and almost feels like a normal child again. She went home on four I.V. meds, which lasted most of the time we were there. Wearing the pump keeps her in remembrance that she does have a serious illness.
One of the challenges of being at home is that we are no longer in a sterile environment. Everyone in the family was sick this time and we tried but just couldn’t keep it away from her. We found out yesterday that what she caught was RSV. She didn’t look too bad when we got here, but after she started chemo she developed a fever and is now down in bed. Not a very good way to start out.
This chemo is only five days; two drugs instead of three. It seems like that would be a little easier on her, but they tell me that it may be just as hard because her immune system has been knocked out so many times already. One of the chemos is a higher dose than before. It will be nice to have it be less days, though. The count recovery will probably be the same or longer. We figure that in about two weeks we will be half way! When we come home again we will be 3/5 of the way done.
March 24, 2007
The last ten days have been very rough for Bethany. She was doing so well, and then suddenly she developed a fever which went up to 106. Her heart began beating twice as fast as normal, and she had to have a quick dose of medicine to slow it down. It took days to determine the cause of the infection. They gave her antibiotics, but the fever stayed up at 104 and 105 for several days. She also developed pneumonia and had to have a bronchoscopy to be sure it wasn’t a fungus. Last of all, she got C. Diff, a bacterial infection in the intestines which is caused by antibiotics. She had this last time, also. She was down in bed for 7 days, feverish and delirious. She doesn’t remember much of it.
She is doing better now. Her blood counts came up quickly, which was a blessing, because that helped her to fight the infections. Her heart is a little weak from all the stress, but the fever is gone and her lungs sound a lot better. Because her blood levels are up, she needs to start chemo again soon. They want her to be completely well, though, and they would like to see her go home for a few days.
This has been a little bit of a scare. We want to thank everyone for their prayers. We know they helped her, too. She has also had many Preisthood Blessings, and they have been a real comfort. Hopefully, the next time her counts are low we can do more to prevent problems, and not let things get so dangerously out of hand. Only three more rounds of chemo!
March 8, 2007
Bethany has been back at Primary Children’s for ten days. She just finished her second chemotherapy. It went well. Her blood counts will bottom out in about ten more days, and then begin to go back up. So far she has felt great! She hasn’t had any nosebleeds this time, and no blood products. We just hope she doesn’t develop any complications in the next few weeks.
The only problem is that she has too much energy. One of the anti-nausea drugs makes her hyper, and she is running around like crazy. She’s wearing Mom out! It’s a challenge to keep her occupied and happy. She hasn’t been able to leave her room, so we keep bringing things to her. She loves to do crafts. We’ve also spent time on the internet, looking at maps and pictures of places. We read books and color. Sometimes t.v. and movies are a lifesaver. Maegan spends a lot of time here, since she only lives about 3 miles away. She plays with Bethany and entertains her so Mom can have a break.
It has been harder to be in the hospital this time. It seems like we have been here forever. We still have so far to go. Natalie is in her school play this week, and it is sad that we have to miss it. We also missed the blessings of both our little grandsons last month. Life is going on without us, but at this moment we’re just grateful for life.
February 28, 2007
We just came back to Primary Children’s. We had a nice 2 1/2 week break from the hospital. In fact, after finishing ten days of I.V. antibiotics, we relaxed into an alomost-normal life. When her immune system rebuilt itself a little, Bethany even got to spend a little time outside, riding her bike and playing in the snow. She didn’t go out in public, except the last day home we took Austin to get a driving learner’s permit, and to Shopko, but she wore a mask.
We started her second round of chemo yesterday. This time it will only be 8 days instead of 10. The plan is for 30 days in the hosptal for recovery, but we only stayed for half of that last time, so we’re hoping everything will go as well again. Bethany did have to get an I.V. in her hand, because one of her central catheter lines is clotted. She will only need the second line for the first 5 chemo days.
It was hard to come back to the hospital, because Bethany was feeling so good. She understands her illness remarkably well for her age. She knows the serious nature of Leukemia, and the importance of continuing treatment., but she wishes she didn’t have it. The coming of Spring will make it even harder to be trapped indoors. We’re hoping she will be back home for her 5th birthday, April 9. She wants to have a big party with a ladybug theme! She’s been talking about that since her last birthday.
All of Bethany’s siblings were tested for the possibility of doing a bone marrow transplant. We just got the final results and not one of them was a match. Usually one in four will be, so we should have had at least two. When they don’t have a suitable donor, they just do an extra round of chemotherapy instead. We are all sad about that, because it’s hard to be separated from each other. The kids are all being really brave, though, and helping out a lot at home. Life goes on, and so will we. We’re all growing from this experience.
February 11, 2007
We suddenly find ourselves at home! We were so surprized. We didn’t expect it for at least 2 weeks. The doctors just decided that she was well enough, and her blood counts were on their way up. (We thought they had to be at a higher level before going home.) She still has almost no immune system, so we need to keep her home and protected. She is still on 3 antibiotics, and because she can’t swallow medicine they have to be administered I.V. , so Mom has been trained by the hospital staff to do so. She has 4 free hours twice a day, and the rest of the time she has to carry a little backpack with a wind-up pump. She doesn’t mind it too much. She is just glad to be home!
A home health care nurse will visit twice a week to draw blood and care for the indwelling catheter. The blood will be tested for possible infections and blood cell growth. When she reaches a certain level, she will be able to handle more chemotherapy, and we will go back to Primary Children’s for possibly 4-6 more weeks. We are anticipating a bone marrow transplant, probably after the third round of chemo. Bethany’s siblings have already been tested, but we still don’t know who will be the best match. Several of the kids are begging to be the donor!
Bethany would love to have visitors while she’s home. Small groups of people are best. Anyone who is or has recently been sick should wait until they are completely well. It is important for everyone to use hand sanitizer upon entering our house. Gifts are a delight to her, but also need to be sanitized. Stuffed animals and cloth items can be germ-free after 10 minutes in a hot dryer. Books and toys can be wiped with packaged wipes. Everyone has been so kind, we really appreciate all of you!
February 7, 2007
Bethany is still at Primary Children’s. She has been off of chemo for two weeks now. She had one really good week. She got to play and ride bikes in the hall (she had to wear a mask and stay within the unit) and she was unhooked from her I.V. pole a lot, which meant new freedom. She wished she could go home, but things were a little more fun. This last week her blood counts bottomed out, as expected, and she did develop a few complications. She began having fevers, which is the first sign of a problem. Diarrhea was the result of bacteria growing in her intestines. Her kidneys seem to be a little “angry” from the chemo. She also is having a lot of trouble swallowing medicines, which has been the cause of much grief for her and everyone around her. They did change some of her meds back to I.V., but some of them really needed to be oral. Her counts do seem to be coming back up now, though, and the infections diminishing. When she stops having fevers and reaches a certain ANC level, she can spend a little time at home. Then we come back and start the whole process again.
Her hair is almost completely gone. She has some fuzzy, light-colored stuff left, which she won’t allow to be shaved off, but she did let Mom trim it. She looks really cute in her hats with the fringe-like hair around her face. She has lost a little weight, but she was a skinny thing before.
All in all, our spirits are good. The Lord is with us. We continue to be the recipients of so much generosity and concern. We are so grateful. We will get through this. We did feel like we needed to close our candy & gift store, and that has been hard for everyone in the family. Bethany cried when we told her. We have had it most of her life; she doesn’t know anything else. But we will find other things to fill our time, when we get to the point of having time again.
January 27, 2007
We are so greatful for the outpouring of love and thoughtfulness that has come our way! This has been a very difficult experience, but has been made easier by the many hands that have made our burdens lighter.
Bethany has just finished her first 10-day chemo-therapy session. She was very ill and in a lot of pain when we came to Primary Children’s Medical Center. She is now pain-free and feels really good. She has to remain in the hospital while her blood counts return to normal, about 30 days. Today she is free from her I.V. pole for a little while, and is running around like a little wild animal. She almost looks normal, except for her thinning hair, which will probably be all gone in a few days. Her immune system is almost non-existent. She can only leave her room if she wears a mask. We don’t want her to get any infection, because she doesn’t have anything to fight it with. We love visitors, but only if they are completely well! She does get tired of seeing only Mom and nurses. She has had a couple of little friends to visit, and that really cheers her up. She loves it when her brothers and sisters and Dad come, too.
We will have just a few days or weeks at home before coming back to Salt Lake for more chemo. We will repeat the same process– 10 days of intense meds and 30 days in-patient observation. This process may be repeated as many as 5 or 6 times. There may be a bone marrow transplant later on, but that has not been determined yet. She has an indwelling catheter in her chest which will remain for up to 2 years. Everything depends on how she reacts to the treatment. We are prepared to live like this for as long as we have to.
You hope that nothing like this ever happens to you. We didn’t think it could happen to us. We already had enough to do! We’re just thankful that we have a loving Heavenly Father who watches over us and we have been so blessed by the prayers and thoughts and kindness that have come our way. We believe that there is a purpose to adversity, that people all around us can benefit from this experience. We know that whatever happens is God’s will. We believe that He is near, and there is a great comfort that comes through the Spirit. Bethany will be fine. She is a strong little girl, and getting stronger.
2 comments January 27, 2007
