Tuesday, December 10th, 2002
Kami is doing well and we are waiting for her next MRI which is scheduled for a few days after Christmas. She is currently taking a chemo drug called VP16 as well as Accutane and Vioxx. She is doing very well with these drugs, they are taken orally which means she can take them at home and she doesn't seem to be having very bad side effects. Long term VP16, however, has been shown to cause leukemia so we can't count on this drug long term.
VP16 is a phase 2 drug. This is the last phase 2 drug for Kami. This means that if VP16 doesn't work (and we will know that in the next MRI), we may think about putting her into a phase 1 trial.
There are 3 phases of drugs: phase 3 means it is safe and commercially available; phase 2 means it has been shown to be safe, but there is not enough testing done for it to go on the market yet; and phase 1 is a drug that they are testing to see if it is safe. If you go into a phase 1 study, they are testing for toxicity levels, which means they will give you more and more of the drug to see how much you can tolerate. This can be very dangerous. There is no proof that any phase 1 drugs work for what Kami has.
We are asking you, our family and friends, to talk to everyone you know about Kami to see if you can come up with any ideas for us. There are independent clinics throughout the country that are not affiliated with hospitals or universities. Perhaps there is a clinic somewhere that we are not aware of, that would have a treatment for Kami. Please feel free to email us at nguyenchildren@yahoo.com with any ideas. Kami has an Anaplastic Astrocytoma grade 3 spinal cord tumor. It is different from a brain tumor, but there is not much research on spinal cord tumors so doctors apply brain tumor research. We are looking for something for pediatric spinal cord tumors. We have already searched the Internet for these terms, but it doesn't hurt to search again. You never know when something new may come out. We are also looking for people who have survived malignant spinal cord tumors to see what treatments they used. So please ask around and let us know. Thank you.
The kids are enjoying school so much. We are so lucky that we are able to focus our lives around school right now. We treasure these moments when we can live a regular daily routine. We are so lucky to be living in a wonderfully supportive environment and through this we have learned to accept more love and friendship than ever before. Life means so much more now.
We want to do something different this holiday season. We are looking for something very personal and meaningful. We are exploring the idea of having the children create art that will be made into cards and journals that we will sell to raise money for treatments for Kami. Not only will this benefit Kami for treatment, it will help lessen our pain, give us more hope, and build self esteem and understanding of the emotions we are feeling around this time and about this disease.
There will be a new section to the website called "Art" where we will start to display the children's recent artwork. We will also start to make cards and journals that we hope to sell in many places including the school, the hospital, workplaces, and others. We hope you are interested in this venture and will help out as much as possible.
We have learned so much during Kami's illness. We have had unlikely people talk together. We have faced being disabled in public. We have posted family photos on the Internet. We have talked about and shared over the Internet details about Kami's disease. We have told people not to ask us what they can do for us, but to just do it. All for the sake that there might be someone out there that might have an answer that will save Kami's life. One person can make a difference.
Thank you all so much for your support! We wish you all a very Meaningful Holiday Season. Best Wishes for Health and Happiness into the New Year. Much Love from our Family, Francois, Kathryne, Gina, Kami, and Duke
Monday, October 28th, 2002
Kami had an MRI last Friday and we met with our doctor, Dr. Chris Moertel, today to discuss the next plan of treatment. The MRI showed slight growth of everything so the chemo Kami has been taking has not been working. Dr. Moertel offered a different approach with different chemo medicines. We are glad that he has these different chemo medicines to offer. We have some hope for this new protocol, but so far there is no proven cure for what Kami has. If these don't work, then we may need to look for a phase 1 experimental trial. The timing of the next MRI depends on how Kami does. If she gets in pain or has some other kind of symptoms, we will get an MRI sooner and reassess treatment. If she does fine, we will wait about 6-8 weeks for the next MRI.
Dr. Moertel was very impressed by how well Kami was doing today. If she continues to be well, it gives time to try things. Kami's counts went down for the first time last week and she got an infection. She had to be in the hospital over the weekend to get antibiotics. Luckily she bounced right back, was feeling better right away, and was released from the hospital quickly.
We think complimentary therapies are now very important to get into again. Kami continues to see her Energy Healer, Lorraine. We think we will start the Tibetan medicine again and the Chi Gong healer, Master Lin again. It's very important to do everything we can to keep Kami's immune system strong and her body feeling good to withstand the strong chemo drugs.
Meanwhile, Kami is doing very well in school as are Gina and Duke. It is a very busy time filled with school activities and friends. I have been with Kami in school to move her from place to place in her wheelchair and help her with physical activities. While I'm at school I have found time to start remembering and writing the story from the beginning when Kami was first in pain with the tumor back in March. I have added "The Story" as part of this website. I have also started the Kindergarten web site for Kami's class located at: www.spa.edu/ka. Please also check out Gina's class website done by the 201 parents at: www.spa.edu/room201.
The kids are looking forward to a fun Halloween. Love to you all and thank you for your support.
Monday, September 23rd, 2002
School is a magical place. The kids are transported into a world of themed projects, group activities, nurturing adults, interesting children, and wonderful lunches! They are doing so well, we are so proud of them.
Kami is adding some chemo drugs to her protocol. Along with her regular one week on two weeks off of Irinotecan, she is taking Lomustine and Vincristine. So far she is handling the side effects well. This is a 6 week protocol so she won't be getting another MRI until the end of October. We have been able to decrease her steroid decadron to a lower dose and her pain seems to be under control. Her mood swings are still very unpredictable and difficult to deal with, but at least she is not in much pain.
We are working hard to get a stair lift in the house and some chairs Kami can feel comfortable in at school. We are trying to get Kami to exercise more on her bike and walk more with her walker. Gina and Duke are doing well, but continue to suffer from getting less attention than they should. It is a difficult time for us all. We've been through so much for so long and continue to be challenged. We don't know what will happen. We try to keep our spirits up and enjoy the changing of the season. Best wishes to you all.
Friday, September 6th, 2002
Kami's MRI was very much like the last one which means things are somewhat stable. The main tumor doesn't seem to have grown, but it hasn't started to shrink either. Irinotecan is stopping growth, but we need to find a different drug or combination of drugs to start getting rid of that monstrous tumor. Unlike brain tumors, there is not a drug out there that has had any success with spinal cord tumors. That is the sad news. The small tumors above and below the main tumor do not seem to have grown and there are no new ones so that is good. That means we don't have to think about having another surgery just yet to put that ommaya reservoir in Kami's head. There is still quite a bit of swelling around the main tumor which causes pain. We've been trying to get Kami off of the steroid decadron, but we can't do it yet because she is still in some pain. Kami continues to gain weight due to the decadron. The last few weeks she has been doing a fantastic job of changing her eating habits and trying to ride her bike as much as she can, but she continues to gain. People keep telling us as soon as she's off the decadron, her weight will go down, but we are not there yet. We are realizing we need to make our house more accessible. We are asking for donations to help us do this, please check out our donations page. Also the photo page has been updated with August photos.
We are thankful for so many miracles and hope for more. We are thankful Kami is doing well, and we hope we can find a drug that will cure her. We wish all our children well as they continue to travel on their incredible journeys.
Friday, August 30th, 2002
Thank you to all who have called, written, and wished us well as the children start their first week of school. It was quite a week! Duke did great at a friend of ours home day care. She is a wonderful care giver and we would love to recommend her to anyone looking for care. We are so proud of Kami for doing so well on her first days of Kindergarten. We are thankful to the school for sending out letters to parents in advance and talking to every class to prepare them for Kami's arrival. Children are curious and we think it is important that everyone know about Kami's condition ahead of time. That is a great way to prevent pointing and teasing. We thank the school for taking these proactive steps. We are proud to be in such a supportive school community. This especially helps Gina start her second grade year without quite so many questions about her sister. We wish them all well as they face a challenging year.
Kami's treatment continues this week. She is doing her third round of chemo called Irinotecan. This is given through her IV port-a-cath that she has in her chest. An issue with her port is that the needle has to be changed every week. This is always a source of anxiety for her. Kami will have an MRI on Sept. 4th and from there we will decide the next course of action.
We are overwhelmed with emotions seeing Kami at school interacting with children again. We are uncertain of the future, but are overjoyed she has made it this far. We pray everyday she will be able to get better. Our lives are so different than they were just a few months ago and we will never be the same again. We will find our way little by little and appreciate life as never before. What helps most in this difficult time is encouragement, positive attitudes, praise, and gratitude. Good luck to all who have children starting school. Children are our future, we wish them well.
Thursday, August 22nd, 2002
As our children begin the new school year, we try to prepare them for what they might face. They have just gone through the most difficult summer of their lives. Kami has gained a lot of weight and lost much of her hair. She is in a wheel chair and has scares on her head and back of her neck. Her cheeks look so unnaturally puffy. People stare at her.
Instead of mourning for what our daughter was in the past, we must look to the future and find a purpose for her suffering. Cancer is a silent suffering in our society. We are scared of it and don't want to know anything about it because we feel powerless against it. But we must not leave the victims to suffer alone. We must show them all the love and support we can. If only we could stop the cancer terrorists from invading our children! Our daughter has been an incredibly brave warrior climbing over one mountain after another. We pray that her crusade has not been in vain.
Tuesday, August 20th, 2002
We've had a very busy couple of weeks. Kami had surgery to put in what's called an Ommaya reservoir. This is like a shunt, placed just under the skin on the top of her head with a tube going into the ventricle to administer medicines to her spinal fluid. Giving her chemo medicine into the spinal fluid will hopefully stop the small tumors that have grown in other parts of her spine from growing and spreading. Unfortunately the Ommaya got infected causing Kami to have headaches, and severe light and movement sensitivity. So it had to be taken out. She had to stay in the hospital for five days until it was taken out and the infection cleared. She just got home yesterday. We will think about putting in another one in a week or so. During all this she got another round of the chemo drug called Irinotecan and did very well with that. So now she has had two rounds of Irinotecan, the drug that showed to stop the growth of the main tumor. She has another MRI scheduled for the first week of September.
This was supposed to be a break time for us to relax before school starts, unfortunately we had to spend some of it in the hospital, including Duke's Birthday. We tried to have a little celebration, at least we were able to be together and enjoy ourselves as best we could. Gina got to stay a couple of nights in the hospital which was kind of fun for her. We are trying to get her off to friends houses as much as we can, but she wants to be with us. We have all been having a rough time and hope things will get better. We are thankful to all be starting school soon.
Saturday, August 3rd, 2002
Kami had an MRI yesterday and the results were mixed. The good news is, it seems the chemo drug, Irinotecan, has stabilized the main tumor showing no sign of progression. The bad news is, there are other very small tumors both above and below the main tumor in the spinal fluid. These tumors can be very dangerous as they can spread to other areas. Kami will do a surgical procedure this coming week to insert a tube just below the skin of her head so a drug can be injected there and in her lower spine to get to the tumors in her spinal fluid. And she will also continue doing the Irinotecan regiment to try to shrink the main tumor. She will have another MRI in three weeks.
Kami has been so incredibly brave throughout all this. She feels confident we will all help her get through the fire. She is walking through fire right now. The steroid drug decadron has made her gain weight, so it is even harder for her to walk. Her hair is starting to fall out. And yet she is cheerful. She is hopeful that she will make it through. We all look at her strength and are inspired to keep fighting and working hard to keep going and never give up. Gina and Duke are riding along in the roller coaster along side her, helping her and loving her. All our lives have been changed by this horrific situation. And yet we must go on. School is coming. We must prepare for the upcoming year. Something to look forward to. We hope for joy and comfort as we meet new friends and rejoin good friends and are accepted despite our difficulties. Courage is not the absence of fear, but facing fear head on and struggling day by day. In this journey we find deep meaning in life.
Monday July 22th, 2002
Kami tolerated chemo very well last week. We are watching everyday for side effects, so far they have been very mild and we have been able to control them with medicine. Now we have to wait for two weeks to see if this chemo drug has had an effect on the tumor. Her next MRI is scheduled for August 2nd. Kami did very well in the clinic because she got to spend time with her cousin Paul (Ghoi). They played Nintendo together, watched videos, and drew pictures. Kami also got a visit from her favorite dog, Monique who is Phyllis & Ron Ettinger's dog from Country Day. Monique helped Kami relax during tape and needle procedures. Kami hates tape and needles so much!
We all have certain magical people, animals, and things in our lives. These people, animals, and things are brought to us by magic and do magical things to our souls. It is so wonderful to see this magic happen to our children.
Magician Bill from Bicycle Bills Bike Shop in West St. Paul brought Kami her new bike over the weekend. We got a Love Bike a few months ago, but that didn't have the back support Kami needs now. Once Kami got on her new Bicycle Bill Bike we have not been able to get her off. She was like a bird flying out of a cage. She has felt so trapped for months and now she has the feeling of freedom. She was last seen somewhere in the neighborhood with Duke in her basket and Gina and Mama not far behind on the Love Bike.
We also have had wonderful visits to friends homes including John and Cynthia O'Halloran's beautiful cabin on the St. Croix River and Tom and Mona Dougherty's incredible home on Lake Josephine. Thank you for your generous hospitality. We will always treasure these special summer memories.
We continue to do some more complimentary treatments. We thank everyone who continues to donate money to us by sending it to Country Day. And we thank everyone who has contributed to the guestbook! What an outpouring of support and love we have received. We are amazed at the depth of feelings and the many well wishes from all over the country and the world. We have been deeply touched.
Chemo Treatment at St. Paul Children's
Summer Fun!
Friday July 12th, 2002
How cruel is life. Kami had her MRI on Weds and we found out the results yesterday. The tumor has almost doubled in size and has begun to spread to other parts of her spine. The radiation and chemo did not seem to work at all. She will get a port inserted this weekend and start more aggressive chemo on Monday. If she can handle the drug, she will do that for 5 days then take a 2 week break and then get another MRI. The drug we will start is called Irinotecan and has been shown to reduce some of these types of tumors. However our doctor is telling us this won't be a cure and is starting to prepare us for the end.
It is happening so fast. How can this be part of life experience? I have never known something to be so devastating. A few short months ago Kami was so active and full of life and now we watch her try so hard to feel better and cure herself. We have not told her yet, but I think she will find out soon. Her pain has not gone away, she is taking more decadron to relieve it, but as soon as we try to lessen the dose, the pain comes back. We still try to hold on to the hope that miracles will happen and turn the situation around.
I think of my Mother's Mother, my Grandma Fran, who just passed away on Tuesday. Her eldest of three children passed away in an accident in his early 20's. My mother always tells the story that Gram said "at least I had the gift of having my son for 24 years." Gram lead a very full life and we will remember her with such fond memories. We will all miss Grandma Fran very much.
Kami was a wonderful surprise for us when she was conceived. We didn't plan on having another child so soon after Gina. We didn't know how we could handle two girls so close together. Their personalities turned out to be so different from one another. They grew to become best friends and more joy than we could have ever imagined. When Duke came along, he was a combination of the two personalities and both girls got along with him so well. Now Gina and Duke are bonding more closely together as Kami has to deal with her own situation. They both love her so much, I can't imagine what this is going to do to them.
We need more support now than ever. It is hard for us to think of and tell you what we need, so if you think of something please just do it, and we will greatly appreciate it. We are so thankful for all the loving support we have had in the past few months. Even though we want to escape from everyone, we love it when people make the effort and reach out to us. We are thankful that we have been able to communicate over the Internet. It is so painful for us to talk, writing seems to be better. So please keep those emails coming or better yet, leave a note in the guest book. We love you all and hope you will help us through this very difficult time.
May God and Buddha be with us all.
Monday July 8th, 2002
We would like to thank everyone for their generous contributions to our New York Trip! It was better than we expected. We visited the Beth Israel Hospital where Kami's surgery was performed in April. They have a play room for outpatients where everyone gathers. Maya Manley from the Making Headway Foundation creates such a welcoming, homey atmosphere, it feels like a party. They have a wonderful staff helping the children make crafts, play games, and talk to them about what they are going through. The parents get to talk to the staff too and to each other. It is very much a party atmosphere as everyone mixes and mingles as they talk, eat, and have a good time. Kami got to see everyone she made friends with from before. It was such a treat for her to visit without getting any treatments. She spent a satisfying and long day at the hospital and was ready to go back and relax at the hotel. She will remember this special day with much happiness.
The second day, Kami had an appointment with the Tibetan Doctor, Yeshi Dhonden, who was the Dalai Lama's doctor for 20 years. He examined her very carefully and talked to us about her condition. He gave her special packages of Tibetan Herbs to take, and advised her on what foods to avoid. Kami has taken his advice very seriously and is carefully monitoring her diet to make sure she follows his instructions. He told us that the herbs are effective, but work very slowly to strengthen her nervous system. Kami is not to take them on the same day as she takes chemotherapy drugs, not because it is dangerous, but because the herbs will not be effective on those days. We are to send away to his shop in India for refills. Kami should try to see him again in about 6 months to a year to reevaluate her condition. Since Dr. Dhonden is quite old, it is getting more difficult for him to travel. However, we are going to contact our Tibetan friends here in Minnesota to see if they can sponsor him to come here next year.
We continue to use complimentary medicines to enhance Kami's treatments. We feel these types of treatments are gentle and help to build up her immune system. They help make Kami feel better about her treatments overall. We feel this positive frame of mind will help her overcome her extremely challenging condition. Kami's pain is less now as we increased her dosage of the steroid medication she is on. The side effects of that are increased appetite and mood swings with lots of anxiety. We await her MRI on Wednesday July 10th. We will keep you updated.
We are enjoying our 4th of July weekend as we host our cousins from Paris. We thank all who have visited including Uncle Dai, Uncle Thomas, Nana and Uncle Dave. We thank all those who have sent cards, checks, and gifts. And we thank those who have written messages in the guest book--we check it everyday. We send blessings to you and your families as we know we all have challenges in our lives that we must work to overcome. Life is precious.
The Nguyen Family
Kami's visit to New York
Monday June 24, 2002
Starting summer school brought a different realization for us. Kami had to go to a new school in a wheel chair and use crutches in front of everyone. No one knew her as the active girl she once was. She got many stares and people asking "what's wrong with her?" A very difficult thing to deal with. Both of the girls love their classes and activities. But it is hard for Kami to get around such a big school and deal with all the new people. As we go around town, we are more aware about how important handicap accessibility is. If something is not accessible, Kami wants to give up and often starts having a panic attack. On top of that she is still dealing with pain from her radiation. The first few weeks of radiation went so well, we were wondering what all the fuss was about. Now we know what pain is about and we wonder how long it will last. They say radiation effects everyone differently so it is hard to know. Pain medications work, but have side effects. We don't want to over do it because then she becomes miserable in other ways.
I've been reading the Bernie Seigel book, Love, Medicine & Miracles as well as others. Kami needs to take more control of her situation instead of having people do things to her all the time. She needs to have the feeling she is right and not to be corrected or lectured to. We've given her some things to help her take more control and do things herself. Her favorite is her cell phone. She learned how to use our cell phone and took it over. She loves to talk to people so don't be surprised if she calls you! She got a violin and is taking lessons from a wonderful teacher. She is very good and is very excited about this. Gina is taking piano again and it will be wonderful when they can play together. We are still working on the bike situation. The Love bike is a little scary still, but we hope to get her one she can ride by herself very soon. We hope to get equipped so we can go on family bike rides. We have a little blow up pool in the back, but she is not comfortable going in it yet. She loves to swim so we hope to get her comfortable in many different pools this summer. It hurts her so much to see kids playing and having fun like she used to do. So far when she sees this, she wants to escape, go inside and watch TV. We are not sure what will motivate her to get out there and try things. Right now she is very frustrated. Meanwhile, Gina and Duke are bonding more than ever. This is good for them, but Kami is always left out. The three of them used to have so much fun together, now it's hard for Kami to have fun. We pray this will not be the case all summer. We pray her pain will go away and she will get up and practice moving around and get better and better.
When Kami is on her bed rolling around in pain, I talk to her about the good things we are going to do in the next couple of days. This gets her mind thinking about something else and usually helps a little. She is extremely intelligent and knows everything that is going on. She loves to think about people. You all are very important to her. She doesn't feel good about herself right now so any kind of encouragement is great. She, like all of us, needs loving words that will build up her self esteem. She also needs to do things for others. She needs to know that she can love and make a difference for others. Gina needs more attention as we have been spending way more time thinking about Kami. Duke we think is doing fine. As for Francois and I, we need more sleep. I'm doing too much yelling, he is doing too much worrying. We pray for peace.
We send love to all of you and thank you for reading this and taking part in our family journey. Peace to you all.
June 12, 2002 Kami Completed 5 Weeks of Radiation!
Monday June 10, 2002
Kami is near the end of her radiation. She is now taking the second round of chemo pills. She has been experiencing some pain lately. This has been difficult for us. We think we have it under control with medication, but it is so unpredictable. We don't want to completely knock her out, but it is so hard to see her in pain, it is hard to find a balance. We think there is some swelling around the tumor where she is getting radiated. After radiation and this round of chemo she will be getting a couple weeks break and we hope she will do some good recovering. Physical therapy continues to be helping as her leg keeps getting stronger. She hopes to go from walker to crutches next week. She continues to do energy work called Qi Gong as a way to keep her mind focused on healing her whole body.
Dr. Moertel is meeting with other oncologists at a conference in London and they will be discussing Kami's case to help determine what the next plan of action will be. Kami's next MRI is scheduled for July 10th. Depending on the outcome of the MRI, she will be scheduled for the next round of chemotherapy. If the tumor has shrunk down significantly then they prescribe a very high dose of chemo to get rid of the rest and hope it doesn't reoccur. If it has not shrunk they say do a lower, longer dose to shrink it and then do the high dose after that. Whatever the case, we are just at the beginning and have a long way to go. That is very hard for us. We feel like we have gone through so much already. It is amazing how much strength we have to find to go through all this. At the same time we are trying to do normal things and have as much fun as possible this summer. Normalcy and fun are very important for healing and for the rest of the family.
We hope for miracles and miracles are happening. It is a miracle Kami is with us doing as well as she is. We are so thankful! We take this opportunity to make changes in our lives and do things that are truly meaningful. Summer school approaches. Francois has a full schedule. Duke starts his fun summer camp. The girls will both go to their summer arts camp. I will go with Kami at first to get her used to getting around a new environment. I will also encourage and empower her to talk to the other kids and teachers about her situation. The girls are so educated about many complex issues now. They are proud of what they know but uncertain of the future. We all are. We pray for peace and healing in our lives.
Love to you all.
Monday May 27, 2002
Happy Memorial Day to everyone. We have been doing great. Kami is now half way done with radiation and she is taking it very well. We have been seeing an energy healer once a week. That has been very good for Kami. Just yesterday Kami lifted her leg and was able to bend her knee for the first time since surgery. We all celebrated, Miracles are happening! Positive thinking with visualizations and knowing that her mind can help cure her has been very powerful for her. Radiation and chemotherapy are things she feels the doctors are doing to her, even though we try to explain and she knows that these things are helping her, they seem intrusive and very difficult. Doing alternative therapies are very gentle ways she feels she can take control of her own healing. I pray for more miracles. We are planning a trip to NY this summer to see a Tibetan Doctor who was the Dalai Lama's doctor. We hope he will be able to prescribe some Tibetan medicine for Kami. Then she will start stronger chemo. We are nervous about that, but hope for the best. Keep us in your prayers. Please kindly help us with donations as our bills are starting to come in and even though we have very good insurance, there are many things to pay for. Thank you.
Monday May 13, 2002
Hello everyone,
Kami has started her first round of outpatient treatments. She has started radiation which she will do 5 days a week for the next 5 weeks. She gets four quick beams, one to each side, right where the remaining tumor is. She thinks of these beams as fairies taking their magic wands and disappearing the roots of the tumor that were left. She has to wear a mask to secure her head in place, this is the hardest part, she thinks of this as her Queen Amadalla from Star Wars mask.
Kami is also doing chemotherapy. She is taking a drug called Teamozolamide. She has to take 5 large capsules for 5 days, then waits a few weeks, then does that again, then the doctors will reevaluate. She thinks of these as her dragon pills that are traveling to the roots of the tumor and breathing fire on them to make them weaker and easier for the fairies to disappear. Then she thinks of her while blood cells as pigs that eat up all the left over tumor cells.
During all this she does physical therapy 3 times a week. We go to a wonderful room with wonderful therapists who play games and otherwise motivate her to move around and practice her exercises. The muscles in Kami's leg are definitely coming back. She can push down just fine, she still has trouble lifting up. She has a brace for her foot to help keep it lifted so she can walk better. She uses a walker and is learning to get around very well with it. It is a challenge to get her motivated to move around, she would rather sit and do activities. It is such a change in Kami, she used to be the one who was always on the move. Now she has suddenly learned how to read, can navigate to tons of fun sites on the Internet by her self, and loves to play card games.
We are seeing a wonderful energy healer once a week. So far this has been incredible how much more energy she has after these sessions. We are also trying to see a Qi Gong master who also works on energy healing. These people work with the stuck energy that we have been carrying around with us to release it so we can move forward.
We have been getting a lot of support from family and friends and appreciate everything everyone is doing for us. It is hard to put into words the emotional changes our family has been going through. We are pulling together and treating each other with love and compassion. Gina and Duke are involved every step of the way. They have gone back to their normal lives, but none of us will ever be normal again. We realize how precious life is and what a gift our children are. We are so thankful that we have been able to have this time together.
We wish peace and love to all of you and your family and friends. We hope you continue to pray for us. We will keep you updated. Take Care, Love The Nguyen Family
Radiation and Physical Therapy at St. Paul Children's
Friday April 19, 2002
We are back in St. Paul. We found out Kami's tumor is malignant and we are devastated by the news. Kami is at St. Paul Children's Hospital under the care of the best Neuro Oncologist, Dr. Chris Moertel. Her Radiation starts soon. We go from there. We are exhausted, but feel at peace that we are doing what we need to do for her and for our family. Email is still best for us, it is hard to talk on the phone, and draining. We would like to approach life here slowly and with care. This is all going so fast for us and it is hard for us as a family to deal with it all. One difficult part is that Kami and Francois spend the night in the hospital. We hope she will be able to come home very soon. Thank you all for following this with us and praying for us. It helps us to know that we can stay somewhat connected with our loved ones. Kami sends her love as a shining lighted spirit. We are embarking on a journey we must go on and are hoping that there is love throughout. Bless you all, Kathryne
Sunday April 14, 2002
Hi everyone,
Today is Sunday and Kami got out of her bed into a wheel chair so she could go play games in the play room. Her operation on Friday was successful. They only got part of her tumor out which is what they expected. She was very out of it the first day, but now her spirits are very high, she is enjoying her visitors, loves eating lots of food, and feeling pretty good. The doctors and nurses here in New York are serving us very well and making sure everything goes well for her. She has a nice big room with a view of the Mayor's House, Shultz park and the east river. Now we are attending to her after care and making sure that the doctors and nurses attend to her needs. Her sister and brother are going through this with her and we hope all three of them will be able to come through this with a healthy attitude. We appreciate all of your support and will continue to communicate further about how we are doing.
Love from all of us,
The Nguyen Family
Kami's Surgery in New York
