Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 5
Summer 2003
Moving into the New House and Summer Visitors
The first thing we did that summer was get ready to move into our new house. The workers had been working hard the last few weeks of May to get our house ready for a June 1st move in. We were able to walk over from the apartment anytime and survey the progress. There were a few details that had to be changed, but overall everything looked wonderful. We were warned by many people not to build a house because they had lots of problems with builders. After the incident with the accessibility designer, we really didn’t have any problems. They did a superb job and it looked fantastic. Gina felt uncomfortable going to the house because it was so empty. She wanted all the furniture to be there already. Kami and Duke loved the open spaces and had fun running around. Kami could actually almost run around. The happiest feeling about the house was that Kami could walk in from the outside and walk all around the house all by herself. We couldn’t wait to move in.
It took a few extra days for the workers to finish everything and then we had the final closing and the house was ours. My father and his wife, Doris, came to visit and helped us move in. They helped out a lot by packing up some things from our old house and bringing them over to the new house. They also helped take care of the kids so Francois and I could get some things done. We had a very nice visit with them and were very happy they could come and see us at this happy time.
My brother also came up to help with moving. Moving day was crazy and we were so glad my brother was there to help supervise a bunch of guys. They got everything from the apartment to the house in a few hours. To add to the craziness, Francois’ brother’s kids also came the day we moved. Everything was moved out of the apartment except for a few chairs and the TV. The kids and I watched TV until the very last minute. Then we all went over with the last of our stuff. Everyone helped set up the house. It wasn’t that hard because we just had the stuff from the apartment. It looked like we were camping with a bunch of junky furniture in a really nice house. It would have to do until we sold our old house and got all our nice furniture back.
The kids had a great time playing together. The cousins were always up for fun activities and kept our spirits high during this potentially tough transition. Even though we lived in cramped quarters for three months at the apartment, we learned to love that little place and it was hard to say goodbye to it. We had a little ceremony for our pet turtle to symbolize our move. We had a pond in back of our new house and we decided to make that the turtle’s new home. We all gathered near the pond, took the turtle out of his tank and put him down on a rock near the water. He took off right away and swam to freedom. He looked happy and it was nice to know he would be near by. We had a full week with my brother and the cousins at the new house.
The day after they left, my mother, my sister, Susan, her husband, Patrick, and their daughter, Faith, arrived for a visit. After the move, the week with my father and Doris, and the week with my brother and the cousins, we were very tired. We felt like we just needed a break and some time to settle in to the new house. I didn’t realize having so many visitors would take its toll. Normally I love visitors. I felt bad that we couldn’t be 100% when my mother and sister’s family arrived. It was nice to see them, so we just did the best we could.
I hadn’t seen my sister’s family for a while. One year before Kami’s diagnosis, Susan’s husband, Patrick, had gotten into a motorcycle accident. He became paralyzed from the chest down. It was a devastating accident. It was extremely strange that Kami had gotten her tumor in the same place that Patrick’s spine was injured. How could that happen? This was where life was so much stranger than fiction. How could both my sister and I have such devastating and similar things happen to us? I felt there must be some meaning to this. How could this just be a coincidence? The part of the spine that was affected for both of them was right behind the heart. Could it be that we were not loving Patrick or Kami enough?
My sister’s family lived far away and we hadn’t been out to visit them. My sister and her daughter, Faith, had visited us a few times, but Patrick had not visited. My mother helped them come in and it was good to see them all. It was emotional to see Patrick. How do you feel when suddenly two family members are in wheelchairs? It was overwhelming. Patrick was so wonderful and made us all feel at ease. He took a tour of the house with his wheelchair and saw all the accessible features. We ate dinner and became a family again after a long time and after much tragedy. We spent the week doing various activities around town and had dinners and relaxing evenings. We had a very good time with them. That was the last time they got to see Kami.
Summer Activities
After all our visitors left, we could really concentrate on summer. Duke was already full swing into his daycare summer program, Gina had an all day gymnastics camp, and Kami and I had to figure out what she was going to do. One thing she wanted to do was ride horses. I looked on the internet and called around, but wasn’t able to find any horseback riding around where we lived. There must have been something, but I couldn’t find it. I wish I had had help finding something because horses started becoming very important to Kami. One day we called our friend, Bob, who we knew had a couple of horses on his farm. He invited us over and we had one glorious day riding. All the kids rode. Kami was able to ride with Bob in back of her and they went pretty fast. Then she even went by herself and absolutely loved it! I think that one day satisfied her. She always felt so great about that day. She understood that it was difficult for me to find other horseback riding opportunities so she focused on other things.
The best thing Kami was able to do was go swimming. Our area had lots of little lakes with beaches. We explored many of them and found our favorites. Kami was able to walk by herself from the car all the way to the water. She spent hours swimming and having fun in the water. She loved collecting rocks and playing with her mermaid dolls. I always brought a little beach chair for her to sit in which gave her some back support and was easier for her to get up and down from than sitting directly on the sand. We would eat snacks and lounge around for most of the day. Some days we would spend the whole day at the beach, go pick up Gina, Duke, and Francois, eat dinner somewhere on the way back out to the beach, then spend the evening on the beach too. It was beautiful relaxing time that we just couldn’t get enough of.
Spine Curvature and Tantrums
There were two things going on with Kami that were not good that summer. One was her curving back, the other was tantrums. Throughout June and July Kami’s chemo protocol was pretty much the same. She did her regular VP16 and was still trying Cytoxin. Giving her medicines was so much better now through her G-tube. It was a breeze. Her counts and general health had been doing so well the last few months, we didn’t need to go into the clinic as often. We went in for once a week physical therapy and that was going well too. I had talked to the physical therapist about Kami’s curvature and she told me to talk to Dr. Moertel about it. Dr. Moertel took some summer vacations and it seemed like we hardly ever saw him. Whenever we did, I expressed concern about Kami’s curving back. Kami’s posture was deceptive. Looking at her from the front, she looked fine, but from the back without a shirt on, you could really see the curve. You could also see something was wrong by the way she walked.
One day in July we saw Dr. Moertel in the hall and I wouldn’t let him pass us until he looked at Kami from the back and watched her walk. He looked at her and agreed that we should be concerned. He suggested we talk to a doctor over at a specialty hospital. He referred us to one of the best doctors over there, but it was very hard to get an appointment with him. We finally got in at the end of July. This doctor took an x-ray of Kami’s spine and told us that we should take urgent action on this problem to prevent it from getting any worse. Her curvature was alarming and it had happened very fast. He saw the MRI films from May and couldn’t believe how drastically it had changed since then.
We had two alternatives: surgery or a body brace. Surgery was not a good option right now since her cancer condition was so unstable. Our only choice really was a body brace. We would get the brace fitted and then she was to wear it 23 hours a day! We were stunned and in disbelief! How could we deal with such a huge change in her lifestyle? I was very angry about this. I had noticed her back starting to curve a long time ago and had brought it up many times before this. Wasn’t there anything she should have done a few months ago to prevent it from getting this bad? Was this a way of saying, well her cancer isn’t cured yet and probably never will be, so why do anything else for her? Or was this just another one of those things that happened so fast only I noticed it?
I was seeing a chiropractor, Dr. Rydberg, regularly for myself. I brought up many issues that were going on with Kami during my sessions with him. He spent a lot of time talking to me about Kami and gave me a lot of suggestions about things to try. He told me about a case he heard about where the patient had a very slow recovery after back surgery. That person, started out crawling before she was even allowed to walk on her own. That made a lot of sense to me. There seemed to be no thought about if walking was actually OK for Kami to do so soon after surgery and radiation. It was explained to us after the fact that gravity from walking had caused her spine to curve. Here we had been so excited for her to walk. We had been encouraging her so much to walk. Now we learned that walking had done major damage to her spine! Didn’t they know that was going to happen? Shouldn’t they at least have warned us that it might happen? Were we all just stupid not to have realized that her back would curve? I’m sure we could have done a number of things to prevent it from getting so bad. The only thing to do now was go forward with the body brace.
We got the brace made at the specialty hospital. Kami had to lie on a special table while they made a plaster cast of her body from her neck to her hips. We wondered how this brace would work if she lost or gained weight. They assured us it would open in the back and have adjustable straps. They showed us a picture of what it would look like. It was called a Milwaukee brace which meant it had a hard plastic collar around the base of the neck and a hard plastic brace around her waist and hips, then it had two metal bars in the back and one in the front connecting the neck piece to the hip piece. It looked like a suit of armor. They let Kami pick out fancy colors for it. She chose a wild red pattern. It took a few weeks for it to be made.
When it was ready, Kami had to go in to have it fitted. We weren’t prepared for how long this would take or how horrible the brace felt to wear. We had a very nice technician doing the fitting, but it was hopeless. Kami tried it on a couple of times and he was able to make some adjustments to it, but she couldn’t take more than a few hours of this. We scheduled to come back in a few days, this time we would bring a couple movies and some snacks to keep her distracted.
It took more than a few fittings to get the brace adjusted so it was comfortable. We took it home and Kami tried to wear it. We were told to work up in half hour increments until she could wear it all day. She was supposed to wear it all day and even sleep in it! She tried wearing it for about 15 minutes at a time, sometimes a half hour. We tried it as often as we could during the day. It was hard for her to bear it for too long. She couldn’t walk in it very well. Her walking was unstable to begin with and I was scared she would fall and really hurt herself if she walked with the brace on. So we tried to put it on her when she was sitting doing something. During the day we were busy going places and doing activities and it was so difficult for her to wear it. It seemed like such cruel punishment to make her wear it after all she had been through. All Kami wanted to do was walk now that she could, and it broke my heart to stop her.
We were very confused actually about whether or not she should be walking. The doctors never gave me a straight answer one way or another. It was one of those pass the buck situations. One doctor would say it was up to the other. They would keep passing the responsibility off to the other. With no one taking responsibility, we had to make decisions for ourselves. Kami had to move around and if no one told her otherwise, she was going to do whatever she felt like doing. I felt it would be very good for Kami to get an electric wheelchair. That way she could wear her brace and still keep her independence. I felt it was important for her to wear the brace so her back would stop curving. She hated the brace. She loved walking. Maybe she would love an electric wheelchair enough to wear the brace and stop walking. It was a weird argument. After we had wanted her to get out of her chair for so long and walk, now it seemed better for her to stay in the chair. It was hard to know what was best. According to my chiropractor, Milwaukee braces were not even proven to work. The doctor at the specialty hospital even said it wouldn’t do anything to fix the curve she already had, it would just prevent it from getting worse. Kami loved her independence with walking. Part of our job as parents of a cancer patient was to give Kami a good quality of life. I thought getting an electric wheelchair would enhance her quality of life. We submitted requests for an electric wheelchair into insurance, but it kept getting denied. We went in for an electric wheelchair fitting anyway just to be ready if it did go through insurance.
Meanwhile Kami was having the time of her life walking. Another thing Kami loved to do besides swimming was shopping, especially food shopping. Prior to this summer we had done most of our shopping with our local home grocery delivery store. Francois did his shopping as usual for meats and vegetables at Asian grocery stores. Kami and I got very good at doing the rest of the shopping on the computer. Every week she would go online and buy her favorite foods. I would go on later and edit some of her choices and add other things we needed. She got surprisingly good at food shopping this way. It worked out great with our hectic schedule to get our weekly Friday night food delivery. That summer we discovered the electric shopping carts at one of our favorite grocery stores. Kami couldn’t walk very far distances or walk for very long, but she could walk from the car to the carts just inside the door. Kami learned how to get the key from the person at the register and get her cart going. She actually was too light to use the cart by herself, so one of us had to sit with her. This was good as a safety precaution anyway, but she really didn’t need us to do anything. She figured out how to drive the cart safely all by herself. She was able to go everywhere she needed to go and could usually get all the things herself. We just went along for the ride. For little six year old food lover Kami, this was the ultimate fun activity. Kami and I started going shopping all the time. We would go after a day at the beach or after a movie. Her favorite thing to do was go around lunchtime and eat sushi! Francois loved taking Kami shopping in the evenings. They wouldn’t even take a wheelchair in the back of the car. She would get into his car and they would drive off together as if they were going on a date. It was so cute.
Hopefully she wouldn’t have a tantrum. Kami’s tantrums were very complicated. It was hard to remember when they started, but we always attributed them to something having to do with decadron. That summer we had gotten Kami completely off decadron and were even able to get her off hydrocortisone too. She had not been on any steroids for a while and she was still having tantrums! We could not figure it out and our doctors didn’t think it was a big deal. We thought it was a very big deal because we were the ones who had to deal with them.
When we were in the new house that summer, Kami was able to walk all over the house. She would walk fast and sometimes the kids would play hide and seek or even chasing games. It was a lot of fun for them, but sometimes Kami would get overly excited and it would turn into a tantrum. At these times I had to chase her down and bring her into her bedroom on to her bed. If I didn’t do this she would hit herself on furniture or knock herself on the walls or the floor. When I got her onto her bed I would have to hold her down or else she would hit and scratch herself. She would scream and yell and thrash around. I had to be very strong holding her down and sometimes this would last over half an hour. We were all kind of used to this, but we didn’t understand what was happening or what we could do about it.
I mentioned Kami’s tantrums to my chiropractor and he asked about her thyroid. I had heard thyroid mentioned when Kami first started radiation, but nothing since then. When Kami had radiation a number of things were mentioned to look for as long term side effects. Nobody thought her thyroid would be affected this soon after radiation, nobody except my chiropractor. The next time we were in the clinic, I asked to have her thyroid tested. This was something they could have done all along at any routine blood test and I was angry that no one had thought to check it before. Kami had even been to an endocrinologist to help her with the hydrocortisone dosage and the endocrinologist didn’t think to check her thyroid. Well, they checked her thyroid after I requested it and wouldn’t you know, it was way too low! We went back to the endocrinologist and she prescribed a tiny pill for Kami to take everyday called synthroid. Like magic, the tantrums vanished. Not a single one after that. I wish we had found that out in the beginning. It would have made a huge difference for us.
Tuesday, August 12, 2003
Wow! What a Summer!
The Big News is that Kami is Walking!!! Kami has always been able to walk, but since her operation in April 2002, she has always needed assistance. The miracle happened in May in her Kindergarten classroom. Kami took her first steps without holding on to anything! Since then there has been no stopping her. Unfortunately with all her walking has come the effect of gravity. Her spine has been through surgery, radiation, and lots of chemotherapy and just can’t hold her up. The result is alarming curvature. Just when she gets her first tastes of freedom, we have to bind her up in braces. Not only will she have her leg brace, she will have to get a full body brace as well to prevent her spine from curving more.
Kami just had an MRI and the report is pretty good. Some things are shrinking, some are growing but not very fast. She will continue chemo this year. It's still a long and difficult year ahead fighting cancer. We had some problems this summer with hormones and thyroid but we hope we have those under control now. Kami has lost a lot of weight. When she was first diagnosed she weighed 50 lbs. Then with all the steroids she got up to over 100. Now she's back down to 50 and we hope she won't go any lower. Her hair has come back a little but may be falling out again. At least she is used to wearing hats and bandanas now. She has her wig, but it is easier and cooler to just wear a bandana. This incredible girl! I don't know where she gets her strength. I don't know where any of us have gotten so much strength.
Overall we had a good summer. We had fun with family and friends. We spent lots of time at beaches and pools. We even got to ride horses at a friend’s farm! We did lots of shopping and saw lots of movies.
We are very happy to announce that Gina is launching a line of gifts featuring her art work! She did a number of amazing pieces this summer and we want to reward her efforts by setting up an online shop for her. Gina has had to endure so much through this long journey. Her art gives us hope and inspiration that will help heal her sister Kami. We hope you will take some time to browse the products and make some purchases.
Both Gina and Kami are looking forward to getting back to school. And little Duke is looking forward to a good year at daycare. We wish you all the best as you go back to school or work. We would love to hear from you in our guest book.
Love from us all,
The Nguyen Family
Summer 2003
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