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Kami died peacefully on Thursday, April 22, 2004. Her courage, strength, and determination has inspired us all. Her life with love, wit and compassion will be forever remembered.

Kami had an MRI and the results were mixed. Many things were stable and some things have grown. The growth is not good news. It means that this chemo is not the one that will make everything shrink. On the other hand, it has been three months since her last MRI and having some stability is really a miracle.

We are still deciding the next course of action, we will probably stick with the same thing for now. It is very frustrating and scary to have to wait and see what new treatments become available, but that is what we have to do.

Kami is giving us the opportunity to dig deep and wide to help her. She continues to have a strong fighting spirit. She does get sad sometimes and said the other day that she feels so guilty that everyone has to help her. We have to remind her that cancer is something society has a responsibility to find a cure for and that she is helping society by staying alive. Her job is to want to live each day, to wake up with plans, to do things that make her happy. She is helping us all see the preciousness of life. Our biggest hope is that there will be a cure for her.

Hello everyone,

It has been a while since the last update. Kami has been somewhat stable since January as we have been waiting to start her new chemo. We had to wait 3 months after radiation before we could start this chemo.

If you recall, the very first thing Kami had after surgery was radiation to her upper back where the main tumor was. Then she had lots of chemo and she got much better. She was walking and down to her original weight by the summer. Then unfortunately this past October, tumors spread to her brain and she got full brain radiation. Then in December tumors grew in her lower back and MRI scans also showed growth in places she had previously been radiated, so we had to make a choice. Do we radiate her lower back or try a chemo that would treat everything. We chose the chemo because if we radiated the lower back we would have had to wait 3 months after radiation before we could do this new chemo and who knows what would have happened in that time. So we are trying this new chemo called R115777. She has only been on it a week so we don't know much, but at least it seems she doesn't have any bad side effects from it so far.

Kami has had to be on a lot of decadron again for pain, so her weight is going up again. She has not been able to wear her full body brace because of her weight gain so she got a neck brace to help hold her head straight. Kami loves going to school and does the best she can. It is hard for all of us to see her in this condition again, but her beautiful spirit shines through as she fights her way through this illness. She wakes up everyday with plans for what she wants to do. With each day that goes by, a force stronger than all of us guides our lives. We have long ago given up control. We do the best we can each day and try to hang on to hope. Kami will have an MRI in about 2 months to see what is happening. This March will be 2 years since diagnosis.

Gina continues to work hard in school, improving especially in reading and math. We are so proud of her and her accomplishments. She continues to enjoy gymnastics and is starting up tennis as well. Duke is also doing well. He enjoys his day care very much and is still the Red Power Ranger around the house. We know Kami's illness is hard on them. We try to explain everything as we feel that is the best way to dispel their fears. We love them so much and hope that somehow we will all get through this.

Blessings to you all and your families,

Kathryne and Francois

Bad news now about Kami. Tumors are growing in her lower back causing pain and trouble standing and walking. We are able to control her pain with decadron and she is a pro with her power wheelchair. She also has tumor growth in areas that have already been radiated. We will start on yet another chemo drug. Fortunately there is one available for her through the University of MN that we will give a try. We may do radiation to the rest of her back at a later time.

We were very upset by this latest development because it seemed like she was doing so well. We have dealt with so much uncertainty and so much fear. We have gone through so many ups and downs with hope and hopelessness. We have to face a roller coaster of emotions everyday. The kids, however, drive us to keep up with daily activities. Serving them relieves our anger and sadness, our guilt and regret. We do everything we can to keep their lives and our lives going. The kids are absolutely amazing. They don't want any of this to get in the way of their normal lives and they don't let it.

So we go on...

We don't know what cancer is, how or when it will happen. We do know that we will fight--whatever happens. We are learning so much. We have so many that are watching and care so deeply for Kami. We thank you all for your support in so many ways. It has been a very long road and continues to rage on. We have not been totally weakened, on the contrary, we are stronger. We appreciate the meaning of life more and are able to love on a deeper level.

It is amazing the power of a small child--if you are willing to see her potential and feel her unconditional love, she can bring more out of you than you thought you had. Bless the children of the world. We hope peace will come to them.

Thank you to those who supported the "Gifts by Gina" website for their Holiday shopping! There is still time to order. Today is the last day before Xmas to get the UPS 2 day shipping rate. Hope you will give the site a try! http://www.cafeshops.com/giftsbygina

Kami got her second Lionheart certificate congratulating her for completing her second round of radiation. She completed five weeks of whole brain radiation. With the use of steroids we were able to get her through it relatively comfortably. Her symptoms are mainly stable with some further loss of neurological functions. Her hearing seems to be getting a little worse and she is very shaky. We are to expect things to get even worse in the next few weeks until the effects of radiation kick in and then hope they get better. To help ride out this difficult time we will increase steroids to relieve some of the pressure and swelling due to radiation.

The timing was right for Kami to finally get her electric wheelchair as it is more difficult for her to keep her balance now. She loves using her new chair as it gives her much more independence.

We will wait a few weeks until we start another round of chemo. And will get another MRI in about a month.

The book "If I get to five" by Dr. Fred Epstein might be something to purchase for the Holidays. Dr. Fred started the INN at Beth Israel Hospital in New York where Kami first had surgery. Reading the book gives a very personal window into what Kami is going through. It also gives much inspiration and hope.

Kami continues to be the bravest girl on earth. We must continue to be brave as well and continue the fight. We thank all of you for giving us support. We wish you all a wonderful Thanksgiving season and send blessings to you and your loved ones.

With Love,

The Nguyen Family

Kami's symptoms related to the small tumors above her main tumor are getting worse. More specifically, she has lost hearing in her right ear, facial muscle movement on the right side of her face, and some of her right eye movement. The eye movement loss causes her to see double so she keeps one eye shut to be able to see better. Having one eye shut cause her to walk less steadily than before and she has been falling. She will have an MRI this Tuesday which will most likely confirm what we are seeing from her symptoms, that the tumors are growing.

We have met with Doctors and made some decisions about radiation. We will start a 5 week course of radiation to her whole brain starting on Weds. She will go everyday after school until the week after Halloween. We hope this will stop things from getting worse. There are risks involved radiating the whole brain, but the way the tumors are, we don't have a choice.

We are also discussing chemo choices, but we have not come to a decision about the next course of chemo yet.

We continue to rage into battle in the next phase of this war. Kami is a very brave and tough warrior princess. We wish her well on her birthday and pray she can make it through.

We see in Kami's life many lessons. As we help her, we learn that meaning in life is serving others. The more unselfish love we are able to give, the more we are able to receive. We are forced to focus on the moment. Any regrets about the past or dreams of the future is time wasted that could be better spent loving people now or doing important things now. We are all miracles, we are all connected, and everything that is happening is meant to be that way. We need to really look at it and ask ourselves what can we learn and how can we do better.

Cancer should not happen to children, but it does and we are all responsible.

If you see Kami, wish her well and give her lots of encouragement. She needs lots of positive strokes. This is a very scary time for Gina so she needs lots of encouragement too. And Duke needs lots of extra love too.

We wish you all well and hope you will give extra hugs to your loved ones.

Sincerely, Kathryne and Francois

We have been blessed with miracles. We have been blessed with three beautiful children, a wonderful family, and many other things. We are witnessing the effects of random chaos that chose to hit Kami with a horrific disease. Statistics were against Kami making it past the first 6 months. And it was doubtful that she would walk again.

With this in mind, we now must face the next phase that we have been dreading. Kami has small tumors above her main tumor that have been growing. Now we are noticing some symptoms having to do with those tumors.

We need to switch chemo medicines again. We need to look at the possibility of radiation again. Surgery is not an option. And we may need to get back on Decadron to help relieve some of the symptoms. We have extremely tough decisions to make in the next few weeks.

We got Kami's body brace fitted for her scoliosis and will try to get her to wear it as much as we can. At this point it is hard to focus on the scoliosis.

Kami continues to amaze us with her positive attitude and her will to push her life forward. We need to focus on each day at a time and try to make life fun for our kids.

We hope you all will be patient with us as we need a few weeks to figure out the next steps. We will keep you posted as we know what is happening.

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 effects 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.

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 60 and we hope she won't go any lower. Her hair has come back but may be falling out again. At least she is used to wearing hats and bandanas now. 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. Spent lots of time at beaches and pools. Even got to ride a horse 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. The profits will go directly to Gina.

Both Gina and Kami are looking forward to getting back to school. And little brother Duke is looking forward to a good year at day care. 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.

Kami had another MRI last week. The results are mixed. Some areas of tumor are shrinking where other areas are growing. This means the medicines she has been taking are working, but we need to add more.

We will enter another year of the cancer battle.

Before we had children we had relative control over our lives. We made plans and set goals and worked hard to achieve them. Then the kids came along and we let go of some of our control as we live in the glorious chaos of raising a family. Cancer is forcing us to give up almost all of our control. We are forced to live day to day and deal with what is immediately in front of us.

Kami's progress has been absolutely remarkable. She walked for the first time on her own without the assistance of her walker or crutches. It was a miracle. She is very excited about this and very motivated to do many things she has not been able to do since her surgery over a year ago. She doesn't have much endurance yet, but hopefully that will come.

Kami has been able to transfer from the strong steroid decadron to a much lower dose of the steroid hydrocortisone. Since winter break, she has lost 30 pounds. We will keep her on this steroid for a while longer.

We anticipate a summer of chemo treatments, physical therapy, and as many fun things as we can do in between.

We pray for the well being of Kami and the rest of our family. We ask for prayer and any help you are able to give us. We appriciate all that everyone has done. All of our actions have made a difference.

Blessings to you all, The Nguyen Family

Kami's MRI went well on Tuesday and we met with Dr. Moertel yesterday to discuss the next course of action. The VP16 seems to be affecting and shrinking the main tumor and the swelling that was going up to her brain stem has gone down considerably. This is very good news and we have seen such an improvement in her movement. He seemed very concerned however, because the small tumors above and below seem to have increased slightly. These can be dangerous since they are new tumors and may spread and grow. We need to try to get to these with additional chemo medicines. We will add 2 new medicines and get another MRI in 2 months.

Kami will be tapering down off of steroids much slower this time. She won't be completely off until the end of April. This way we hope her own glands will kick in a little at a time. It is going well so far.

Kami's movement continues to improve. Her teachers Molly and Jayne are motivating her to stay out of her wheelchair and use her walker while she is in her classroom. When she is in her chair going to other places in the building, she often likes to wheel herself. Kami is always excited to go to PE where Mr. Thomforde sets up all sorts of fun things for her to do. Last Monday marked a big milestone for Kami at school. The Kindergarteners got up on stage to sing songs. Kami walked with her walker to the middle of the stage and proudly sang with the rest of her class. Kami loves school so much and looks forward to going everyday. She is able to focus on all the good things at school which helps her get through treatment.

As we approach one year since we found out about Kami's tumor, we are filled with mixed and complicated emotions. It is truly a miracle that Kami is doing as well as she is. We feel so much love and compassion for her and for Duke and Gina as we look back on this year and think about all they have endured. Cancer is such a mystery. We are learning very hard lessons about not having control of our lives and enjoying each day in the face of tragedy and uncertainty.

We would like to announce that we are in the process of selling our house and moving to a new townhouse that will be handicap accessible and easier for us to manage. It will be very near our present house, so we feel it will be a very positive move for our family. If you would like to make a donation to help us with this process, we would very much appreciate it. Our current address is: 1357 Cherry Hill Rd. Mendota Heights, MN 55118.

It seems like a long time since the last update, but it has been less than a month. Things are starting to change with Kami. Kami's movement in her right leg is different. It is stiffer, yet she suddenly is able to lift her foot at the ankle. She is walking in her walker much better, she is able to get around a little farther and a little faster. She lost a few pounds which helps. She is losing her hair again but luckily we have a beautiful wig for her now.

We went through a traumatic time trying to get her to swallow the pills of one of her medicines. She is taking Vioxx just fine and VP16 just fine, but Accutane only comes in pill form. For two months she had no problems. Then we got her off decadron, she stopped eating, she started throwing up all the time, and she started gagging whenever the Accutane pills came near her. We tried everything: antinausea medicines, taking the pill apart and mixing it with stuff, even a sedative to lower her anxiety. Nothing worked. So we decided to get her back on decadron so she could go back to the way she was. So we did that, she started eating again, she started having mood swings again--good old decadron. We gave her a long break from the pills before we tried them again, but as soon as we did, she threw it up. She went without Accutane for a month and she seems to be doing fine, so we are going to give her another month off and see how she does without it. It is very frustrating that it does not come in a liquid. Our friend Gonne tried pursuing the company trying to get them to make liquid Accutane. Interestingly enough ours was not their only request.

It is very interesting about the chemo drug VP16. It seems that large doses of VP16 given IV doesn't work as well as small daily oral doses, which is what Kami is getting. There is a girl, Terri, in Australia who has the same thing as Kami. She did very well on oral VP16. She had to stop because long term use is supposed to cause leukemia. We would love to find stories of other children with Anaplastic Astrocytoma grade 3 spinal cord tumors to find out what drugs worked for them. There is no national registry for this type of tumor. We feel very frustrated by this and very much in the dark.

We are going to try to get Kami off decadron again. This time we are going to put her on hydrocortisone for a while to see if that will ease the transition. It felt so inhumane to watch her stop eating for so long. A few days was alright, but when it started getting into the second week with not even a bite of food, we felt we had to do something. Hopefully it will go better this time.

So overall things are good. As Kami changes, we have to continue to find ways to keep her comfortable and equipment that fits her new needs. We are looking toward her next MRI which will be the first week of March. We will keep you all posted.

Because Kami is feeling better, she is able to interact with people for a longer period of time. It has been great to see Kami and Gina playing more together. Gina has been extremely patient with Kami's illness. The girls look so happy together again. Gina has also had the opportunity to spend time with friends which has been great for her social development. She is keeping up with her rhythmic gymnastics. And her reading and math abilities have improved greatly in the last few months.

Duke makes us all laugh and adds so much cheerfulness to our household. We are so thankful to his daycare for taking such great care of him. He loves his teachers so much and talks about them all the time. He also is becoming addicted to the computer now that he figured out how to use the mouse. He loves Star Wars the most. It is so fun to see the differences between boys and girls.

Thank you to everyone who has visited our site and wished us well. We wish you all a warm and healthy winter.

Happy New Year and Thank You for news of your families and all the connections made over the holidays.

We feel very hopeful about the latest good news about Kami's condition. Actually, we have very mixed emotions. Hearing good news after so many months of living in total crisis is hard to believe. We don't know what this news means. Even after confirmation of the radiologist's report by Kami's primary doctor, there are no certain answers about Kami's condition. Her type of cancer is so rare, nobody knows what will happen. Since we don't know, and may never know, what caused this, we don't know what may cause it to grow again. It is not over yet, in fact we feel we are just now starting a long road ahead. We still need to work hard month by month. Kami will continue to use the current chemo medicines ( Vioxx, Acutane, VP16) for two more months then she will get another MRI scan around spring break. We hope this chemo will continue to help her improve!

What we are most thankful for is that Kami is not having tumor pain and we are helping her begin working toward a road to recovery. It has not been good for her to be on steroids for so long. It is very difficult to get off steroids, we are not guaranteed that she will make hormones on her own, we hope her body will be strong enough to do that, but it will take a number of weeks. In the meantime she has no appetite at all and less energy. Along with her not eating has come nausea. Luckily we have not had to deal with this so far, but now it is a problem when she has to take medicine. We hope she can take the medicine she needs and get her hormones to work on their own again.

We are so happy to be back at school. The kids love school so much. Snow or no snow, we will have a good winter. Good Wishes to you all.

Good News! We have not talked to Kami's primary doctor yet about the significance of her latest MRI, but according to the radiologist's report, things may be stable, and even slightly better. After nine months of bad news and constant worry it is hard to believe that this could be true.

There is a story to getting Kami's latest MRI that is a little bit like how Dobby tried to stop Harry Potter from going to Hogwarts. Suddenly a few days before Kami's MRI, we got a message saying that the MRI was not in the computer so it was rescheduled for a week later. We were so anxious about the scan that we called a few people to see if we could still go on the original day. Somehow they fit us in and we were on again for the original day.

Kami had been doing so well the past few weeks that we were able to get her completely off of the steroid decadron. As expected, she completely lost her appetite and stopped eating and drinking. This went on for many days and we started to worry. When Kami went in for her routine exam the day before her MRI, she had very low energy and it was suggested to have her stay in the hospital overnight to receive some fluids and just make sure everything was alright before she had sedation for the test. When she awoke the next morning, her breathing was not right and she had to be admitted into the hospital. It was not safe to sedate her for the MRI. Apparently she had gotten too much fluid in her lungs. She was put on antibiotics and steroids again to get her through this. She did many tests to try to determine what was wrong. They didn't find anything and she got better in a few days.

It seemed very difficult to reschedule the MRI. We were very anxious to know the results of the test. The results would determine Kami's next course of treatment and we have been very worried about what that might be. Suddenly everything fell into place. Kami woke up one morning feeling much better, they were able to get all the pieces in place to get the test done, and we were sent home with good news.

So that is how we spent our winter vacation. Duke was sent to daycare, Gina was sent to friends houses. Kami says she enjoyed herself at the hospital. We managed well thanks to the support of our loved ones. And we think the result is a miracle.

We look to our new friend Terri in Australia who has been living with the same cancer as Kami's for nine years. We pray these girls will get better and there will be a cure for them and others like them in the very near future.