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Friday, February 19, 2010 5:20 AM CST
Lindsey had her 2 year post-BMT check up in Minneapolis last week. We should have all test results back in the next week or so, but preliminary results show that she is doing very well. It was great to visit with Lindsey's teacher who helped her keep up with her classmates at home while she was going through transplant. Julie is a very kind and patient teacher who has a real love for what she does. Lindsey's primary doctor, Dr. Wagner, seemed very pleased by her progress and that makes us feel good about where she is today. Lindsey enjoyed seeing Laura, the clinic child life specialist and the nurses who helped her during the transplant process. Overall, it was a good visit filled with lots of snow and good reports. We plan to follow up in MN next year. It is hard to believe that 2 years have already passed since Lindsey's transplant. It has wonderful to see how happy and healthy Lindsey is today. The transplant process was grueling for Lindsey, but she has come out of it stronger than ever. We will continue to be diligent with follow up care for Lindsey, and as she gets older, Lindsey will become responsible for her own follow up care. It is so wonderful to be able to look toward the future for Lindsey. This was not something we were sure we could do just a few years ago. We are thankful and blessed beyond measure to have Lindsey with us today. She is a wonderful daughter and I love her very much.
Victoria
Sunday, January 31, 2010 10:31 AM CST
Day +730
It was 2 years ago today 1/31/08 that Lindsey received her life saving bone marrow transplant for the treatment of Fanconi Anemia at the University of Minnesota Hospital in Minneapolis. We spent nearly 5 months there experiencing euphoric highs and heart crushing lows. I would not change a thing about that time since it has brought us where we are today - celebrating Lindsey's 2nd anniversary and 2nd rebirthday. We will forever be in debt to Dr. Wagner and the fabulous team of health care workers in Minnesota for making today possible. Today she is happy and healthy and I cannot ask for more than that. Lindsey is a living testament to the power of prayer. She is a miracle. My daughter is my hero. I believe that Lindsey is meant for great things in her life. She is wise and kind beyond her years.
Victoria - Lindsey's grateful mom
Friday, December 18, 2009 12:30 PM CST
Day +682
Once again I have failed to update Lindsey's site for quite awhile and I apologize. Lindsey is doing very well aside from a couple bothersome colds in the past couple months, but she bounces back from them much quicker than she did before transplant. Lindsey continues to take the nightly growth hormone injections and I believe I can actually see a difference in her height after 2+ months. We will visit the endocrine doctor in MN when we return for Lindsey's 2 year (!) anniversary post BMT visit sometime in February. I expect we will receive nothing but good news from that visit. It is strange to not obsess over Lindsey?s counts and worry every time there is a sick kid around her, or worry about Lindsey bruising herself but I am trying to adjust to a more "normal" life. I owe that to Lindsey as she has been through so many difficult times during these last few years. It is heard to believe that it has been nearly 2 years since Lindsey's BMT. I still think of those days and months in Minneapolis and feel so blessed that Lindsey is still with us. There are still images and memories of that time that come back to me and they almost seem like they happened a lifetime ago. Lindsey does not really talk about the transplant and all that occurred in MN. If she ever does want to talk about those times I will be ready - and if she does not want to talk about them, that is okay too. It appears that she has happily moved on from that time in her life. She endured alot of pain, fear, anger, and sadness during the transplant process and I am thankful that she is able to be so happy today.
She is enjoying her life right now and is full of energy. She has started her Christmas break and enjoying her time at home, and is really looking forward to Santa's visit. Lindsey received a new kitten, named Tommy as an early 2 year post-BMT gift and is learning how to be a responsible pet owner. If Lindsey is home, chances are good that Tommy?s paws will not touch the ground as she carries him in her arms as much as possible. He is a good kitty, and full of boundless energy. On a good day, both Lindsey and Tommy wear each other out playing.
While we are trying to allow Lindsey to live as normal a life as possible the shadow of Fanconi Anemia is never far away. I will not lie and say that I am not worried about Lindsey's medical future - because I am very worried. I try to keep up with any advances in FA and cancer research but I also know that I cannot let this rule my life for fear of missing out on good times with my daughter. I hope to strike a better balance in the New Year and also find a way to raise research funds for The Fanconi Anemia Research Fund. If anyone lives locally to us in the Birmingham area and knows of any fundraising experts please email me! Thanks.
Recently, a FA adult lost a courageous battle with FA. She leaves behind a husband and young son. Please remember her family and other families who have lost loved ones in your prayers, as well as, the children currently going through the transplant process, about to begin the transplant process, or simply having to cope with the day to day difficulties of FA.
We wish you all a Merry Christmas and a Happy and Healthy New Year!
Victoria - Lindsey's blessed mom
Friday, October 16, 2009 9:07 AM CDT
Lindsey is doing very well and remains healthy. With us no news is good news. Lindsey is doing well in school and received her report card the other day. She had all A's with a B in math. Pretty good for having been out of the classroom setting for nearly a year and a half. I am very proud of her. She is also enjoying her horseback riding lessons althought the recent rains have made it hard to make every lesson. Lindsey has started taking the growth hormone shots again this week. Right now I am giving her the nightly injections, although I feel confident that Lindsey may be able to do this for herself in the coming months. We plan to visit the endocrine doctor in the next few months to check her progress. We feel confident that these injections will help improve her quality of life as she gets older. We do not expect her to be tall, but would like to see Lindsey reach 5' tall with the help of these shots. We do not have our plans set for Lindsey's 2 year post-transplant visit to MN, but it should be the end of January. It is so hard to believe we are almost at the 2 year mark! Time has flown and Lindsey is doing great, enjoying life.
Although Lindsey's medical future remains uncertain due to possible FA related complications down the road, it is so wonderful to see her thriving and enjoying her life. She is so smart, brave, and funny. I can honestly say Lindsey is my favorite person in the whole world.
I was reminded once again how blessed we are to have Lindsey with us when I read the fanconi.org site this morning. Samantha McCarthy died last night more than 400 days post-transplant. Although I did not know Samantha or her family personally all FA families travel the same road of disbelief, sadness, faith, courage, and love. FA is a crual and mean-spirited disease, robbing familes of their loved ones. It does not allow FA families any rest; even post-transplant.
http://www.caringbridge.org/visit/samanthamccarthy
Another mother is heartbroken.
Another family will never be the same.
This is the 3rd child to have died in just a little over a month. And there have been several other children lost to families this past year.
If you have ever in the past considered donating to http://www.fanconi.org to help find a cure and better treatments for those affected by FA now is the time to do so. You may donate in honor of Lindsey and her brave battle against FA. Only other FA parents truly understand what warriors our children are with the horrors and pain they face during treatment. I am so proud to be Lindsey's mother.
Thank you for checking on Lindsey. Please continue to pray for her and all families affected by FA.
Victoria - Lindsey's blessed mom
Monday, August 10, 2009 8:53 AM CDT
Day +556
It is hard to believe that summer break is over already and that today begins Lindsey’s second week of 5th grade. Lindsey was not very excited about starting school again until we went to the open house and she saw her new classroom and her old friends. She was very nervous the first day about how she would feel being in school with her friends and how they would react to having her back in the classroom. Lindsey has not been in an official “classroom” setting since December 2007. I had home schooled Lindsey last year so she could keep up with her friends and return to their classroom when she was ready. It was a difficult year for both Lindsey and I, but totally worth it to see her transition back to a regular classroom with her familiar friends. Lindsey’s teacher this year, was her 3rd grade teacher in 2007, so she is also able to have a teacher she is familiar with, which has helped Lindsey feel more comfortable with returning to school. Lindsey is a very good student so I am not worried about her keeping up with the classroom work. I was probably more nervous on her first day than Lindsey. The size difference between Lindsey and her classmates is especially apparent this year. I worry how she will be seen and treated by the other students.
Lindsey had an appointment with the endocrine doctor last week and we discussed beginning the growth hormone shots again. Lindsey had taken the shots for a couple months in late 2007 when her counts began to drop and we discontinued using them. The endocrine doctor is also checking some adrenal levels. We have not made a final decision regarding the growth hormone shots due to the fact that there is so little data available regarding their use with FA patients. Fanconi Anemia patients have an increased likelihood of developing certain cancers and there is very little known about how growth hormone replacement therapy may effect the possible growth of certain tumors. We plan to think and pray about this decision and we have another appointment scheduled in 6 months to meet with this doctor again. He did mention that the radiation and chemotherapy Lindsey received prior to her transplant, plus the stress her body underwent during the transplant process may be hindering her growth at this time. It is hard to tell what is really going on right now, and we will have to make our decision by taking in to account Lindsey’s quality of life as she ages and the as yet unknown effects of growth hormone replacement therapy on Lindsey’s delicate FA system.
The great news is that at our last visit with Lindsey’s hematologist all of her counts were in the normal range. We no longer have to panic if Lindsey gets a fever or skins her knee. The doctor told us to treat Lindsey like a “regular kid”. That is something I will have to work on after having to be so aware and so diligent for so many years. I can feel myself starting to relax more and being able to plan more for Lindsey’s future. It is not an easy transition, but I am working on it.
Thank you for checking on Lindsey. We are trying to get back into the routine of a normal life. Lindsey is happy and healthy and we feel so blessed after the long road Lindsey has traveled to reach this good place in her life. She is the strongest and bravest person I know and I am so proud to be her mom.
Victoria – Lindsey’s thankful mom
Thursday, June 4, 2009 5:28 AM CDT
Lindsey's 10th birthday was Monday June 1. Yes, my girl is now 10 years old! She had a wonderful skating party with her friends the weekend beofre her actual birthday and had a great time. It is so nice to see Lindsey enjoying herself with her friends. Also, Lindsey successfully made it through the school year being homeschooled by mom and won an award for being on the all A honor roll for the year. She will begin 5th grade in August with all of her old school friends. It was very important to me that Lindsey return to school with her friends and not lose a year of school so I am glad that the decision to homeschool for 4th grade worked out so well. We are thankful that Lindsey's regular school worked with us during this time. Summer vacation has started and we have some fun trips planned such as camping and a trip to the beach. It has been almost 2 years since Lindsey has been to the beach and she is very excited to go on this trip. Healthwise Lindsey continues to do very well. We have an appointment with the endocrine doctor scheduled for August too check Lindsey's thyroid function (since we found out at transplant that she was born with only half a thyroid) and a re-check of her growth hormone production. Lindsey is still very petite and we had begun growth hormone therapy a few years ago before transplant, but stopped it after only a couple months when Lindsey's counts dropped.
Overall, we are feeling very blessed that Lindsey is healthy, happy, and full of energy. Thank you for checking on Lindsey and your continued prayers. Having the transplant behind us feels great, although we do realize that Lindsey's medical future remains uncertain. We feel hopeful as FA research continues that one day there may finally be a cure for this horrible condition. Right now we are enjoying every day we have with Lindsey, and are so grateful that she is healthy and happy. Our time in Minnesota will always make us thankful for where we are in Lindsey's treatment and reminds us of how very blessed we are to have her with us today.
Victoria - Lindsey's thankful mom
Monday, March 30, 2009 3:45 PM CDT
Day +423
Sorry for the lack of updates, but in this case no news is good news. We returned to Minneapolis in February for Lindsey's one year post-BMT check up and the doctors were very pleased with Lindsey's progress. She is still 100% donor with 90% cellularity in her marrow which is very good. All of her blood counts are well within the normal range. Pat told us that Lindsey's marrow and lab work appear to be that of a person who never had any bone marrow issues. She does not have any signs of GVH and her dry skin (eczema) has been clearing up lately. She is full of energy and doing very well in keeping up with her homeschool studies. All of Lindsey's tests in MN went very well nad Dr. Wagner told us that we did not have to continue with the local BMT clinic for blood work follow ups. We plan to get Lindsey's counts checked in the next few months just for our piece of mind, but basically we are back to a normal life until next year when we return to MN for Lindsey's 2 year post-BMT check up. Lindsey has been off of all her meds since we left MN and she is definitely happy about that. We will need to follow up with the local endocrine doctor regarding Lindsey's growth issues. Lindsey may need to re-start growth hormone shots, although I believe we will have her tested for thyroid issues first since we found out during transplant that Lindsey was born with only half a thyroid. Perhaps this is a cause for her slow growth.
We have started getting her caught up on her vaccinations and have another round to go in April. We feel more comfortable now with her being around other people and children. We still keep Lindsey pretty close to home and away from large crowds. It seems that locally, this has been a very bad year for the flu and pneumonia, so I feel we are doing the right thing for now.
While in MN we tried to do some fun things so the trip was not just about doctor visits and tests. We visited the Wabasha Street caves for an evening tour and it was very interesting. Lindsey's favorite thing to do in MN was to go snowtubing. It was our first time trying this sport and Lindsey loved it! She is something of a daredevil by nature and loved flying down the snowy, icy hill in an inner tube with no real way to steer. We were at the snowtubing park for about 4 hours. We plan to do it again next year. The snow was beautiful in MN and we enjoyed long walks and a visit to the natural history museum. It was so nice for Lindsey to be able to enjoy this time in MN. Getting such great news on top of the lovely weather made it a perfect visit.
We are more than a year out from transplant and are trying to get back to a "normal" life but the shadow of FA still lingers, although it is not in the forefront of my thoughts as much as it was prior to transplant. Dr. Wagner explained to us what we already knew, that although the blood and marrow issue of FA has been fixed by the transplant we still have to be diligent about future cancer screenings. Still, I feel Lindsey has passed an important hurdle and that she will be able to face anything else that comes her way. She is such a strong and brave girl.
Lindsey is continuing with her horseback lessons and has really developed a sense of confidence in riding and handling the horses. It is wonderful to see Lindsey having fun and learning so much about horses, and herself
I have posted new pictures. Thank you for checking on Lindsey. Thank you for the prayers and good wishes.
Victoria - Lindsey's thankful mom
Saturday, January 31, 2009 11:58 AM CST
Day +365!!!
Today is Lindsey's 1 Year post-BMT anniversary (or 1st re-birthday)! I cannot even put in to words what this day means to us. We are so proud of Lindsey for the strength and patience she has shown over this last year. She has been through so much this past year; more than any kid should have to endure. The kids and adults who live with FA and go through the rigors of a bone marrow transplant are so special. God has truly gifted these children and adults with a special strenth and serenity that I, as a mom, can only marvel at with wonder.
This is a very special day for us. At times I had my doubts that we would ever reach this day. As you continue to pray for Lindsey, please remember all the parents who have not been able to celebrate this milestone with their children.
I want to thank everyone who has followed our story and have prayed for Lindsey's healing. Seeing how healthy and active she is today, I know that our prayers have been answered. Although we are so happy today we also realize that we must continue to be diligent with further cancer screenings, but the advances made in FA research over the last few years have really improved not only the transplant process but also the quality of life enjoyed by those living with FA.
We will be leaving for Minneapolis soon for Lindsey's official one year check up. We are looking forward to visiting the wonderful people who gave Lindsey this second chance at a normal and healthy life. They have truly blessed us with their knowledge and caring.
Victoria - Lindsey's thankful mom
Wednesday, December 24, 2008 3:23 PM CST
Day +328
It is so hard to believe that we are almost to the 1 year mark post-transplant. What a difference a year makes! Last year at this time we were preparing for our journey up to Minneapolis and we were scared; not knowing what the future would hold for us. Now we are enjoying the holidays and Lindsey's good health. We are especially grateful this Christmas season to have Lindsey with us and to be able to watch her loving life in all the ways which make her happy. We are thankful for all the support we have received this year from family and friends. But mostly, we are thankful to God for seeing us (especially Lindsey) through this difficult year.
I am continuing to homeschool Lindsey this year with the hope that she will return to her school and classmates in the Fall. Lindsey has taken up her horseback riding lessons in earnest and loves them. We are so happy to have found Allison, as she is a wonderful teacher and Lindsey really enjoys learning from her. I find myself not worrying so much these days about Lindsey's health although I am aware that her medical future remains uncertain. Still, it is a big changes from last year when FA dominated all of my thoughts. It still exists, but now that Lindsey is doing so well I feel much more hopeful for her future. Our journey with Lindsey's FA is not over, but we have made it over a very difficult hurdle with the success of her transplant.
We plan to return to MN at the beginning of February for Lindsey's one year check up and feel that everyone will be pleasantly surprised at how well Lindsey is doing. She has gained back all of her weight and then some. Her energy level is through the roof and she is keeping up with her studies. She does miss not seeing her friends on a daily basis so I am anxious for her to return to school in the Fall, as I know she is also.
It has been an incredible year for us; filled with things we want to remember and things we cannot forget. There have been so many ups and downs, so many times we were afraid, and so many times we were elated. Lindsey still does not want to talk much about what she has been through and that is fine. It may be best that she just continues her life as though nothing really happened. One day I will share with her what a miracle she is and how she was albe to beat the odds through her own strength and with God's grace.
I wish you and your families a very Merry Christmas and a Happy and Healthy New Year.
Victoria - Lindsey's thankful mom
Friday, November 28, 2008 4:38 PM CST
Happy Thanksgiving everyone! We have so much to be thankful this year. Last year we were nearing the time we would have to leave for Minneapolis and Lindsey's transplant. There were so many things we were uncertain of in regard to the transplant process, and in a way maybe it was best that we did not know many details of what Lindsey would face. We are thankful to be together this year and for Lindsey to be as healthy as she is right now. I have learned over this last year how important it is to "live in the moment", and how much little things actually mean. It is much easier today to not sweat the small stuff in my life, and most of it is small stuff. I am thankful for my family (extended and immediate) and my true friends. Mostly I am thankful to be Lindsey's mom. She is such a special girl and every day with her is a blessing. I am thankful for the wonderful medical and support staff we met in MN and for the clinic folks here in Alabama. Every day God offers us the opportunity to show others how much we love and care for them. Do not let these chances pass you by.
Victoria - Lindsey's blessed mom
Tuesday, October 7, 2008 5:31 PM CDT
Day +250
Lindsey continues to do well. Her central line was finally removed a few weeks ago and she was able to soak in the bathtub for the first time since January. She is happy to be able to play "rough" now and not worry about her line. She also had a visit to the dentist and we were told that her teeth look good all things considered. The mouth care we did during the transplant process was so important since she was not able to brush her teeth for several months. Lindsey's counts are all in the "normal" range and we do not have to return to clinic until the beginning of November. Only one count is off - her IgE which seems to indicate an allergy although it usually will be high if GVH is present. Lindsey does not have any GVH symptoms and the count is slowly coming down on its own so the doctor in MN has told us not to worry. Lindsey attended a friend's birthday party a couple weeks ago and was able to keep up with the other kids' acitivity. She seemed a little shy at first since it had been so long since she had seen her school friends. I still plan to homeschool Lindsey this year although I have to return to work next week. It will be tough, but Lindsey is a pretty good student so I am not too worried. Lindsey's hair has grown in beautifully. She is anxious for it to grow longer so it will be straighter, but I think she is adorable with her pixie look. This Sunday Lindsey will finally get back in the saddle and resume her horseback riding lessons. She is so excited and tried on her riding gear last night. It is so good to see Lindsey enjoying her life again. We plan to return to MN at the beginning of February for Lindsey's one year check up. It is hard to believe that we are this far out from transplant. The days seems to fly by now. The days in the hospital in MN seemed to drag on endlessly and it seemed as though the magical Day 100 would never get here. We are thankful for the wonderful care Lindsey received in MN and continues to receive at Children's Hospital in Birmingham. Thank you for checking on Lindsey and keeping her in your prayers.
Victoria - Lindsey's thankful mom
Thursday, August 21, 2008 3:19 PM CDT
Day +203
I figured it was about time I updated the main photo. Here is Lindsey as she looks now. As you can tell she is very happy to be healthy. Her energy level is increasing as she is being weaned off more of her medications. Overall, Lindsey is doing quite well. Her blood counts are within the "normal" range for the first time in many, many years. I have begun homeschooling her through her regular school and so far, so good. I know she is feeling more like herself the way she argues about having to do her math work and study her multiplication tables.
It has been an amazing journey so far for Lindsey, me and her dad. I cannot believe we are already at Day +203. At times, this day seemed so far off and even unreachable. We are so thankful that Lindsey is doing well. We will need to be diligent about future cancer screenings, probably starting after Lindsey 1 year check up in January 2009. The many advances in FA research have made the future brighter for children and adults effected by Fanconi Anemia. Although I am still concerned about Lindsey's medical future I feel that she will be well equipped to handle whatever comes her way. Lindsey is the strongest and bravest person I know. I am so proud to be her mom.
Thank you for checking on Lindsey and remembering her in your prayers.
Victoria - Lindsey's thankful mom
Friday, July 18, 2008 3:21 PM CDT
Day 169
Lindsey had another clinic visit yesterday and for the first time in many years her WBC, HgB, and platelets were all within the normal range. This is very good news. Lindsey will have her 6 month bone marrow biopsy this Monday and the rest of her 6 month blood work will be drawn at that time. We are expecting favorable results from all of these tests.
Lindsey will be able to begin having visitors shortly and is really looking forward to seeing some of her friends again. It has been a very long time and I know that she may be a bit nervous, but will enjoy herself. Although the doctors have cleared Lindsey for limited contact with other people, we are still supposed to steer clear of crowds. This final restriction should be lifted in the next couple of months when they feel Lindsey's immune systems has nearly fully recovered.
There is not much news to report otherwise, which I suppose is a good sign. Lindsey is beginning to put on some much needed weight and will hopefully continue to do so. Lindsey still has her central line in and is not able to swim this summer, but I am hoping that the line will be able to come out before the end of warm weather.
Thank you for checking on Lindsey and keeping her in your prayers. Thank you to Smithville HUGS ministry for the beautiful quilt. Lindsey loves it.
Victoria - Lindsey's thankful mom
Wednesday, June 25, 2008 10:58 AM CDT
Day +145
Lindsey continues to improve each day. Her appetite is much better and she is able to eat a wide variety of foods now that her gall bladder has been removed. Lindsey is more like her "old self" now than she has been since we arrived home from MN in May. She is anxious for her 6 month check up next month since it will mean that the doctors will begin to taper down on some more of her medications and that she will be able to see her friends again. She is very much looking forward to not having to wear her mask. We went to clinic on Monday and her platelet count was near the normal range for the first time in many years. Also, Lindsey's white count and hemoglobin are in the normal range for the first time in many years. The transplant process has been very difficult for Lindsey but our prayers have certainly been answered. Lindsey will not be in a regular classroom setting this year, but will have her lessons at home with me as her teacher. She is not too pleased that we have started reviewing math already. I can tell she is getting back to her old self more since she is complaining about math. Thank you for checking on Lindsey. We have clinic again tomorrow. We are hopig to be able to cut our clinic visits to once a week after this week.
Victoria - Lindsey's grateful mom
Tuesday, June 17, 2008 10:59 AM CDT
Day +137
We are finally leaving today to go home. Lindsey is feeling much better since her surgery although she is still a bit sore. There is a big diference in her tolerance for different foods as she is not experiencing as much nausea as she had prior to her gall bladder removal. The surgeon stopped by to see Lindsey yesterday evening and was pleased with her progress. We found out from the folks in MN that we can have Lindsey's 6 month check up done locally so we will not have to travel to MN in July. Although we have been home since May 15 it does not feel as though we have really been "home" that much. I am hopeful that this surgery will mark a positive turning point in Lindsey's overall recovery. She has lost a good bit of weight due to the problems with her gall bladder so our goal now is to help her eat healthier to get her off the prescribed supplements and get her weight back up where it belongs.
Thank you all for checking on Lindsey and remembering her in your prayers.
Victoria - Lindsey's thankful mom
Friday, June 13, 2008 12:22 AM CDT
Day +133
What a difference a day makes!
Lindsey was in terrible pain yesterday and spent most of the day sleeping. This morning she has spent time doing crafts with a hospital volunteer. She has been sitting up in bed for several hours and is somewhat sore right now. Lindsey has been eating bit also. She needs less pain medicine today than yesterday which is also a good sign and is able to move much easier. I have no idea when we will be able to go home, but am so glad that Lindsey is feeling better. I know that Lindsey will be sore for quite a while. The surgeons explained that Lindsey will take a longer time to heal than someone going through a "regular" gall bladder surgery due to the fact that the gall bladder was so large and because they had to manipulate her intestines so much to get the gall bladder out through the incision in her belly button.
Thank you for checking on Lindsey. We are so looking forward to getting home - and staying home.
Victoria - Lindsey's thankful mom
Wednesday, June 11, 2008 5:48 PM CDT
Day +131
Lindsey successfully had her gall bladder removed this afternoon. She was taken downstairs for surgery around 1:30pm and the surgery took about 2-1/2 hours. The surgeon said that everything went smoothly and that she did not see anything out of the ordinary when she was looking around inside. Lindsey's gall bladder was swollen to the size of an adult's gall bladder. No wonder she has had so much pain. The surgery was done laproscopically so there are just 4 small incisions on her abdomen. She has some discomfort but the doctors have said she should start to feel better tomorrow. She should be able to eat regulary in a couple days time. We will watch her closely to make sure there are no complications and if all goes well Lindsey should be able to come home in about 3 days.
Victoria - Lindsey's grateful mom
Tuesday, June 10, 2008 7:18 PM CDT
Day +130
We received good news today. Lindsey's liver counts have improved quite a bit. Also, there is a surgeon at Children's who feels confident that she will be able to do the surgery safely. If all goes well, tomorrow Lindsey will have her gall bladder removed and be one step closer to her ultimate recovery. She is nervous about the surgery but looking forward to being able to eat again without pain. The stem cell doctors here have been very patient with us and have had Lindsey's best interest at the heart of their decisions. Please pray for a safe surgery tomorrow and a smooth recovery for Lindsey. Please pray for the surgeon and all others involved in Lindsey's surgery.
Thank you.
Victoria - Lindsey's thankful mom
Sunday, June 8, 2008 4:33 PM CDT
Day +128
Well, Lindsey was readmitted to Children's Hospital in Birmingham late Friday afternoon due to excesive vomitting and right side pain. It is apprent to everyone involved in Lindsey's case that her gall bladder needs to be removed. This is the only thing that can be done to allow Lindsey some comfort and allow her to be able to eat solid food. Lindsey had a very long and painful gall bladder episode yesterday. Tomorrow another test is scheduled to rule out the existence of any gall stones. Lindsey's gall bladder is full of "sludge" and none of the previous tests have been able to detect any stones. We are waiting for the surgeons' criteria to be satisfied before they will move forward with this very necessary surgery. These past few days have been very frustrating but we are hopeful that we will move closer toward solidifying a game plan tomorrow after the latest test.
Please continue to pray for Lindsey. She has already been through so much it is difficult to watch her go through these very painful episodes.
Thank you.
Victoria - Lindsey's grateful mom
Wednesday, June 4, 2008 6:21 PM CDT
Lindsey had a good 9th birthday. She got out of the hospital on Saturday and was rested and ready for her birthday on Sunday. She has had the intense right side pain only twice since she left the hospital. At clinic Monday her counts had come up a bit and her weight, although lower than I like to see it, remains steady. In the last 2 days her appetite has improved. She has clinic tomorrow so we will see how she does. Lindsey is enjoying playing with her new games and toys although she does tired out quicker now. I believe the doctors are planning on tkaing out her gall bladder next week or possibly the week after. I hope we will learn more tomorrow. Please continue to pray for Lindsey.
It is so wonderful to be home, I know Lindsey wants to get out and about more, but most of her restrictions should be lifted after her 6 month check up in July.
Thank you.
Victoria - Lindsey's thankful mom
Friday, May 30, 2008 8:26 PM CDT
Day +120
The doctors believe that they have a good handle on Lindsey's gall bladder infection, as her WBC is now within the normal range. Her pain is under control and it looks as though Lindsey should be able to come home tomorrow (one day shy of her 9th birthday). After several CTs and an MRI the doctors have been able to determine that her gall bladder is full of "sludge" and is quite enlarged. It is pressing against her duodenum and this is probably causing the bulk of the pain and nausea right now. Lindsey will come home on IV antibiotics which will continue to about another week. Dr. Kharbanda is checking with the GI surgeons to try to get Lindsey on the schedule to have her gall bladder removed in the next couple of weeks. This should defintely make her feel better and allow her to eat better. The doctors have told us that gall bladder removal surgery is fairly routine, but it is hard to believe this when it is your child about to go through something like this. So, Lindsey will be home for a couple of weeks and then we will have a scheduled readmit date for surgery. After the gall bladder surgery Lindsey will spend a day or so on the Stem Cell unit recovering before she will come home. Folks who have had gall bladder infections and then the surgery to remove them have said they felt better almost immediately afterwards.
Lindsey has been through so much already that I really hated to see her have to go back in the hospital and now face another surgery. I am so ready for her to just be able to be a kid again.
Please continue to pray for Lindsey's helaing and for God to give her the strength and understanding for what she has faced and will face in the future.
Victoria - Lindsey's grateful mom
Monday, May 26, 2008 8:49 AM CDT
Day +116
Lindsey was admitted to Children's Hospital in Birmingham last night with an infection in her gall bladder. She had been having pain in her right side that was getting increasingly worse. Right now she is on antibiotics and we are waiting to find out what our next step may be. Please remember Lindsey in your prayers. She is still in pain and feels very yucky and tired. This coming Sunday June 1 is Lindsey's 9th birhtday. Please pray that she is well enough to come home by then. Lindsey is in isolation and cannot have visitors at this time. I will update when we know more.
Good news is that her RBC has come up to near normal and her platelets are holding steady (although below normal). Lindsey's WBC is very high since her body is fighting this infection in her gall bladder.
Victoria - Lindsey's thankful mom
Monday, May 19, 2008 2:30 PM CDT
Day +109
We arrived home safely late Thursday afternoon. Lindsey had a clinic appointment Friday morning at Children's Hospital in Birmingham and again today. Her counts look good, although they are still below normal. It is a good feeling to be home after being gone for 4 months. We have been sleeping very well at night. There is nothing better than sleeping in your own bed - in your own home. Lindsey is really enjoying being home and has adjusted well. She is glad to be around all of her "stuff" again, although we are all trying to get reaquainted with "home" right now. Lindsey is definitely more like her old self since being home and is starting to eat a bit better.
Lindsey would like to see all of her friends, but is still under certain restrictions such as having to wear her mask around other people. Perhaps as we get closer to the 6 month mark, before we leave for MN at the end of July, we can arrange for a playdate with Lindsey and some of her friends. Lindsey is disappointed about not being able to have a big birthday party this year, like she usually does. I am so ready for her to be able to enjoy just being a kid again, but I know that once she passes the 6 month and 1 year milestones in her recovery she will actually be able to do more thing than she was able to do prior to her transplant. Still, it is hard to watch her want to do so many things that she cannot right now.
I am still unpacking our stuff and plan to take my time with it. I am on leave from my job until after Lindsey's 6 month check up in MN. I need to get so many things in order before then, such as figuring out how to go about homeschooling Lindsey next school year. It will all work out, though. All I can do is take things one day at a time.
Thank you to everyone who continues to remember Lindsey in their prayers. We are all pretty tired right now and trying to decompress from the last 4 months, but we are glad to be home again.
Victoria - Lindsey's thankful mom
Wednesday, May 14, 2008 7:10 PM CDT
Day 104
We met with Dr. Wagner today and he was very pleased with Lindsey's biopsy results. He said they were actually better than he had expected to see. Lindsey's white count and ANC are well within the normal range for the first time in years. Her red count is still a little low, as is her platelet count but they are slowly coming up on their own. Lindsey's bone marrow cellularity is 80-90% which is normal for her age. When we arrived in MN in January she was at a little less than 5%. We are so thankful for Lindsey's miraculous recovery. She has had a difficult road, but stayed strong thoughout these difficult months. I am so proud of her. We will continue to have follow up clinic appointments at Children's until the end of July. Lindsey's recovery from her transplant is truly due to answered prayers.
We are cleared to leave for home tomorrow at Day 105 and will return to MN for Lindsey's 6 month check up at the end of July.
Thank you to everyone who has prayed for Lindsey. We appreciate your kindness more than we can say. I will continue to update Lindsey's journal while we are home.
Victoria - Lindsey's grateful mom
Saturday, May 10, 2008 12:16 PM CDT
Day +100
Today is Day 100 on our journey! This was the magical number we have been waiting to reach. At Day +1 this day seemed so far away, but now that it is here it has actually arrived rather quickly. Lindsey continues to do well and her appetite has improved. We feel so blessed that Lindsey continues to have more good days than bad days now. Monday morning Lindsey has a bone marrow biopsy and then on Wednesday we meet with Dr. Wagner to go over the results. If all goes well, we will leave for home on Thursday 5/15/08. We are all looking forward to goiong home and getting back to familiar surroundings. The next fews months before we return to MN for Lindsey's 6 month checkup will be filled with local clinic visits and lots of adjustments to our old life. It will be strange to be away from the MN hospital and all the familiar faces we have come to know and depend on.
It is hard to put into words what we (and especially Lindsey) have been through since January. So many ups and downs. Lindsey is so strong and brave. When she is older I believe she will appreciate this journey even more and at that point we will explain to her just how important this BMT was and how serious FA is. Right now, I just want Lindsey to be able to be a kid again.
Thank you all for your continued prayers. We have definitely needed them and felt them these past few months.
Happy Mother's Day to all the moms out there. Our children are the greatest gifts we could ever receive. Treasures to be held close and loved.
Victoria - Lindsey's thankful mom
Thursday, April 24, 2008 4:54 PM CDT
Day +84
We had an appointment with Dr. Wagner today and received quite a bit of encouraging news. Lindsey's counts are holding steady and her abdominal pains are pretty much gone. Dr. Wagner feels that we may be able to come home a week earlier than our planned May 23. Also, Lindsey may be able to not wear her mask so much when she is outside. That makes her very happy since she hates wearing the mask. The mask is thick and bulky and makes her face feel hot. Chances are good that Lindsey and I will fly home together and Bob will drive back with all of our "stuff". Lindsey's appetite has started to improve and we are hoping that she may be able to stop the IV TPN some time next week. When we arrive home there will be a period of adjustment for us and we will have to be made aware of any restictions for Lindsey. She will not receive any immunizations until after her one year BMT anniversary. Dr. Wagner also indicated that Lindsey's central line may be able to be removed at home, before we return to MN for her 6 month check up in August. Lindsey has not had to get any transufsion since April 8. We are now on a twice a week clinic schedule rahter than every other day. Lindsey is looking forward to being able to sleep in late in the mornings.
We will return to clinic on Monday and plan to enjoy the long weekend off.
Thank you for checking on Lindsey.
Victoria - Lindsey's thankful mom
Saturday, April 19, 2008 12:16 AM CDT
Day +79
We did not have a clinic appointment today so we are taking advantage of our day off by heading to the game room for some fun. We had clinic yesterday and Lindsey's counts good. Her WBC is higher than it has ever been and although her platelets and RBC are low she has not needed any transfusions since 4/8/08. This is a personal record for her and may signal the fact that her body is starting to finally produce red cells and platelets on its own. Lindsey continues to try to eat and she has finally lost the extra fluid she had retained during her latest hospital stay. This makes her feel more comfortable and allows her to sleep better. We will see Dr. Wagner next week and believe he will be pleased with her progress so far. We will be in MN until the end of May and will have to return in August for Lindsey's 6 month check up and to have her central line removed. Lindsey is looking forward to having her line removed so she can swim again and soak in a warm bath. We have gotten used to her having the line sticking out from her chest, but will glad to see it go. The line has been good in that Lindsey does not have to get poked for blood work and she has been able to receive all of her IV meds through it rather than having to start new IVs each time.
It is amazing how much her body and mind has been through in the past few months. Lindsey is a very strong and brave girl. I am so proud to be her mom.
Victoria - Lindsey's blessed mom
Wednesday, April 9, 2008 7:37 PM CDT
Day +69
Lindsey was able to leave the hospital today. Her UTI and kidney infection has been helped by the antibiotics and the extra fluid Lindsey was taking on has been managed. We have a clinic visit tomorrow and trust that Lindsey's recovery will continue. It is good to be together at the RMH. Lindsey is in good spirits although she is very tired since neither of us sleep well at the hospital.
Thank you for checking on Lindsey. I will update later when I am more rested.
Victoria - Lindsey's thankful mom
Monday, April 7, 2008 10:20 AM CDT
Day +67
Well, late Friday night Lindsey developed a fever and ended up back in the hospital. There is a rule when you are discharged that you must call the BMT doctors if you have a fever over 100.5 and Lindsey had a fever of 102. We gathered up what we would need for a short stay since we had been told before we left the hospital that the majority of kids will make a return visit due to fevers, but on ly for a couple of days for blood cultures to be drawn and antibiotics to be run. By the time Lindsey got settled in her room late Friday night her fever had started coming down on its own. We are most likely getting out again today to go back to RMH. Lindsey was not terribly upset about having to come back to the hospital and has been in good spirits. Her fever has not returned and the doctors were able to find that Lindsey has a urinary tract infection that most likely caused her intial fever. Easy to fix and Lindsey is feeling well already. We had a clinic visit on Thursday afternoon and were told that her blood is still 100% donor and that her T cells and immune system were coming back faster and stronger than the doctors had expected to see at this point. They did point out that if Lindsey did get "something" it would most likely be from her own body. And then, of course, she gets the UTI the next night. Lindsey appetite has really begun to return in the last week and it is great to see her enjoying food again. Overall, Lindsey is doing well and we are thrilled with her progress after such a difficult couple of months.
Thank you for checking on Lindsey.
Victoria - Lindsey's thankful mom
Friday, March 28, 2008 1:19 PM CDT
Day +57
We had clinic today and Lindsey received platelets although she was slightly above her threshhold. Lindsey's WBC has really taken off and is at 8.5 today. Lindsey's ANC is well in the 4,000's. These are the highest WBC counts I can remember since I began tracking her counts 4 years ago. Lindsey's RBC are holding steady although she has been averaging red blood transfusions once a week now. We have tomorrow off from clinic which is very nice. We have been visiting the clinic every other day which gives us a much needed day off now and then. Also, Lindsey's TPN schedule has been reduced from 14 hours a day to 12 hours a day. Lindsey has been able to walk more with less pain and is also able to eat a little bit wihtout feeling bad afterward.
Lindsey has had a very difficult journey so far, and she still has a way to go. We are thankful that she is doing so well right now and are constantly amazed by her strength. God must have a very special plan for Lindsey.
The hospital has begun a program called "Beads of Courage" in which each procedure and event is represented by a special bead. Lindsey has begun her necklace and it is remarkable to visually have in front of us all the hard work Lindsey has done so far in this process of gaining a second chance at a healthy life.
Thank you for checking on Lindsey and remembering her in your prayers.
Victoria - Lindsey's thankful mom
Saturday, March 22, 2008 5:14 PM CDT
Day +51
We are just over the half way mark in our 100 day journey for Lindsey's recovery. We have had daily clinic visits for lab draws and platelet transfusions. Today was the first day Lindsey did not need platelets so it was a rather short day for us at clinic (under 3 hours). We do not have to go to clinic tomorrow since Lindsey's counts are holding steady. Lindsey has been off GCSF for the past 3 days, however, after a slight dip in her WBC it has begun to rise on its own. This is very good news, indeed. Lindsey is still weak from being in the hospital bed for so long, but is getting around a bit better each day. Lindsey still has abdominal pain and some days it is worse than others. The explanation we were given is that this happens to the majority of kids and is due to the damage the chemo causes to the GI tract in general. She is still not eating much and receives TPN 14 hours a day (overnight plus some of the morning). Once Lindsey starts to eat a recordable amount we are hoping the amount of TPN can be reduced. Overall, I would say Lindsey is doing well. We are all looking forward to coming home although we have enjoyed the winter in MN and have met some wonderful people here in Minneapolis.
Victoria - Lindsey's blessed mom
Saturday, March 15, 2008 9:04 AM CDT
Day +44
Well, today is the day Lindsey will get to leave the hospital and come back to the Ronald McDonald House. Lindsey's WBC today is 3.1 and her ANC is 1400. Lindsey is doing very well excpet for some abdominal pain that seems to be improving a little bit each day. We will still have daily clinic visits for the first couple of weeks probably and Lindsey will need to receive IV nutrition for awhile at the RMH. We had a class yesterday on how to hook this up for Lindsey each day. I hope she will begin eating well again soon so she will not have to spend any part of her day hooked up to something.
This process has been an emotional rollercoaster to say the least. We are grateful to the wonderful doctors and nurses at Fairview who have taken such good care of our girl during these difficult weeks. We have been told that many kids return to the hospital for a short time due to fevers, etc. and to not view this as a setback if this happens.
We are almost half through our 100 days in Minnesota and are thankful to be where we are today in regard to Lindsey's continuing recovery.
Victoria - Lindsey's grateful mom
Wednesday, March 12, 2008 11:46 AM CDT
Day +41
Lindsey's WBC has risen to 1.9 and her ANC is at 600 for the second day in a row. If her ANC stays above 500 tomorrow she will get to leave her room and walk in the hall with a mask. The doctors are guardedly optimistic that we MAY be able to leave the hospital for the Ronald McDonald House on Sunday. Lindsey will still have daily clinic visits until day 100 (May 10). We feel Lindsey has finally turned a corner and are feeling hopeful in regard to her recovery.
Lindsey has been working hard with occupational and physical therapy to rebuild her muscles after being in the bed so long. Through it all Lindsey has managed to keep up with her schoolwork. Bob and I are very proud of her.
Victoria - Lindsey's thankful mom
Sunday, March 9, 2008 11:26 AM CDT
Day +38
Lindsey had the chest tube removed yesterday and is able ot rest much more comfortably. The latest xray shows that the fluid from around her lungs is gone. She is breathing much easier now - and so are we. Today Lindsey's WBC was up to 1.0 and her ANC was 400. We are pleased that the counts are rising, but are getting impatient for the day when Lindsey can leave her room. We are all pretty tired and drained from the events of the last few days. We believe that Lindsey is continuing to heal at her own pace, although we are beginning to get anxious.
I will try to update more tomorrow.
Thank you for checking on Lindsey. Also, thank you to everyone who has sent cards and gifts to Lindsey since we left Alabama. We wish we could thank everyone individually, but life is so hectic here.
Victoria - Lindsey's blessed mom
Thursday, March 6, 2008 2:22 PM CST
Day +35
Lindsey's white count has risen to .9 and we are pleased that it has not dropped since beginning to rise. Of course, we wish Lindsey's counts would increase at a faster rate so she could get out of her room, but we are pleased overall with her counts. Yesterday was an eventful day. Lindsey has been retaining fluid for the past week or so and it got to the point yesterday morning that it began to interfere with her breathing and increased heart rate. After xrays, CT, and ultrasounds the doctors discovered a large amount of fliud around Lindsey's right lung. The fluid was outside her lung, not inside. Also her abdomin has alot of excess fluid which they are trying to get out by using a different diuretic. Late last night Lindsey had a chest tube inserted to drain the excess fluid from around her right lung. The surgery went well with little bleeding. At the time of Lindsey's surgery to place the chest tube another doctor checked her lungs and reported that he found no physical abnormalities with her lungs and that her secretions were clear. We are waiting for culture results from the lung fluids but preliminarily there is no sign of infection. We were shocked at the amount of fluid that has drained from around Lindsey's right lung (300cc and counting as of today). Yesterday was a terrifying day for Bob and I. Doctors and nurses were rushing around the room talking about pneumonia, chest tubes, breathing tubes, infections. In the end, everything turned out okay. Through it all Lindsey stayed calm and simply watched everyone rushing around her. Even when her dad and I got upset, Lindsey stayed calm. She is an amazing child.
This morning Lindsey is breathing easier and her abdominal bloating has decreased. The thought is that the chest tube has drained most all of the fluid from around Lindsey's lungs. This morning's xray showed most of the fluid gone but the doctors want another xray tomorrow before removing the tube (hopefully tomorrow). She is sore from the tube placement but otherwise doing okay. Lindsey may (or may not) have an endoscopy to check for GVH of the gut. She may not have it, though.
Bob and I are both exhausted physically and mentally. We ask for continued prayers for Lindsey's recovery and comfort.
Thank you.
Victoria - Lindsey's blessed mom
Thursday, March 6, 2008 2:22 PM CST
Day +35
Lindsey's white count has risen to .9 and we are pleased that it has not dropped since beginning to rise. Of course, we wish Lindsey's counts would increase at a faster rate so she could get out of her room, but we are pleased overall with her counts. Yesterday was an eventful day. Lindsey has been retaining fluid for the past week or so and it got to the point yesterday morning that it began to interfere with her breathing and increased heart rate. After xrays, CT, and ultrasounds the doctors discovered a large amount of fliud around Lindsey's right lung. The fluid was outside her lung, not inside. Also her abdomin has alot of excess fluid which they are trying to get out by using a different diuretic. Late last night Lindsey had a chest tube inserted to drain the excess fluid from around her right lung. The surgery went well with little bleeding. At the time of Lindsey's surgery to place the chest tube another doctor checked her lungs and reported that he found no physical abnormalities with her lungs and that her secretions were clear. We are waiting for culture results from the lung fluids but preliminarily there is no sign of infection. We were shocked at the amount of fluid that has drained from around Lindsey's right lung (300cc and counting as of today). Yesterday was a terrifying day for Bob and I. Doctors and nurses were rushing around the room talking about pneumonia, chest tubes, breathing tubes, infections. In the end, everything turned out okay. Through it all Lindsey stayed calm and simply watched everyone rushing around her. Even when her dad and I got upset, Lindsey stayed calm. She is an amazing child.
This morning Lindsey is breathing easier and her abdominal bloating has decreased. The thought is that the chest tube has drained most all of the fluid from around Lindsey's lungs. This morning's xray showed most of the fluid gone but the doctors want another xray tomorrow before removing the tube (hopefully tomorrow). She is sore from the tube placement but otherwise doing okay. Lindsey may (or may not) have an endoscopy to check for GVH of the gut. She may not have it, though.
Bob and I are both exhausted physically and mentally. We ask for continued prayers for Lindsey's recovery and comfort.
Thank you.
Victoria - Lindsey's blessed mom
Monday, March 3, 2008 1:44 PM CST
Day +32
Slowly yet surely Lindsey's white count continues to rise. Today she is at .7 and we are hoping that this increase in white cells will help ease some of the abdominal pain she has been experiencing by combatting the viruses in her GI area. Lindsey still has the pain, although it seems more sporadic than constant. The doctors have ordered an ultrasound for later today in an effort to pinpoint the cause of this pain. We had been told that cord blood took longer to show resulting counts than adult donor stem cells, but it is still hard being so patient. Lindsey has been really strong throughout this entire process, but even she is tired of waiting for the further improvement that will allow her to come back to the Ronald McDonald House. On the plus side, Lindsey has not had any fevers since early yesterday and the pain does seem to be decreasing in frequency and intensity. We are hoping to get Lindsey to eat a little something today in an effort to build back her appetite.
Not much else to report. We are praying that Lindsey's pain will leave her so she can begin to truly feel better. Although the doctors tell us she is doing well Lindsey will not feel that this is so until she starts to feel better in general.
Thank you for checking on Lindsey.
Victoria - Lindsey's thankful mom
Friday, February 29, 2008 12:41 AM CST
Day +29
Lindsey's WBC has risen to .3 over the last couple of days. The doctors have told us that Lindsey may be slow to engraft but that there is growth happening in her marrow based on last week's biopsy results. Right now she is battling colitis and a bladder virus. Lindsey is feeling pretty blah overall between the abdominal pain from these viruses and running a low grade fever. We feel that her body is fighting these viruses successfully since each day her pain is decreasing.
She is a strong and brave girl and we are so proud of her. We had been hoping to be on our way back to the Ronald McDonald House by now as Lindsey is getting cabin fever from being stuck in her hospital room. Once her counts rise just a little bit she will be allowed to walk the halls while wearing a mask to protect her from germs, etc. I believe she will welcome this change in scenery and her mood should brighten as this will signify a step toward getting out of here.
We are hoping for an uneventful weekend. Thank you for checking on Lindsye and please continue to remember her in your prayers.
Victoria - Lindsey's prayerful mom
Monday, February 25, 2008 2:53 PM CST
Day +25
Not much news to report. We are still waiting for Lindsey's white cells to grow. Lindsey has developed some sort of stomach pain that the doctors are trying to figure out. She has been pretty blah for the past few days due to the discomfort, but continues to try to eat. We are more than ready for Lindsey to leave the hospital and come back to the Ronald McDonald House with us.
We need lots of prayers for white cells! Thank you for checking on Lindsey. She is an amazingly strong girl.
Victoria - Lindsey's prayerful mom
Tuesday, February 19, 2008 11:26 AM CST
Day +19
As you can see I have added a new photo. It is a little late, but it is a very important picture. This picture shows Lindsey and nurse Tracy just before the actual transplant procedure which has given Lindsey a second chance for a happy and healthy life. Tracy and Lindsey are holding the bag of cord blood donor cells which were run through Lindsey's central line on 1/31/08. I love this picture and know that when Lindsey gets older she will understand just how important this moment in time was for her life. I have also added another snow picture taken before Lindsey was admitted to the hospital on 1/24/08.
Overall, Lindsey is doing well. Still not much upward movement with her white cells. They have been holding steady at .2 for almost a week. We would love to see them grow but are trying to remain patient. We had been told that cord blood takes a little longer to produce white cells than adult donor cells. Lindsey continues to eat well and keep up with her school work. Lindsey's steroids were cut nearly in half over the weekend which really caused some mood swings and overall discomfort. She is doing better and the steroids will be further decreased tomorrow until she is completely off of them by 2/24/08. Lindsey's blood sugar issues have improved over the last day or so as the steroids have dropped and we are hoping for even more improvement.
As we spend more time here at Fairview and at the Ronald McDonald House we are reminded that Lindsey is doing very, very well for all her body has been through. There are other families going through much more difficult medical situations than ours and some have suffered terrible losses. We do not forget the seriousness of what Lindsey is going through, but we try to remain positive, for her sake and ours. We continue to encourage her, although she is getting tired of being cooped up in a hospital room. Once her white cells grow to a certain point she will be able to take walks in the hall. Lindsey has been very patient through this whole process which has been difficult and somewhat scary for her at times. Still, she has many more good days than bad days and we are thankful for that.
Thank you for checking on Lindsey.
Victoria - Lindsey thankful mom
Friday, February 15, 2008 2:59 PM CST
Day 15
Lindsey continues to do well. She is trying to eat despite the fact that her taste buds are not working correctly due to the different medications she has been tkaing. She says that food either does not have a taste or tastes "funny". Lindsey is doing well with her school work and seems to have settled in to hospital life pretty well. Right now the main helath issue is her blood sugar staying consistently high. The doctors are hoping that this will change once her steroid amount is reduced tomorrow. Lindsey is having much more good days than bad and her mouth sores are much better. We are simply wiating for her white cells to grow. A couple of days ago her WBC went from .1 to .2 and has stayed there. Not much movement, but at least it is heading in the right direction. We realize just how blessed we are that Lindsey is doing so well this far out from her transplant. It has been a very hard road, but Lindsey has remained strong throughout and continues to inspire us.
Thank you to all who have sent Valentine wishes to Lindsey. She loves Valentines Day! I will poste pictures soon.
Victoria - Lindsey's blessed mom
Saturday, February 9, 2008 7:48 PM CST
Day +9
Lindsey continues to do well and actually ate pretty good today. She was also in the mood to play for the first time in a long while. Lindsey's hair was coming out in handfuls yesterday so she elected to have her head shaved since it was so itchy. She looks beautiful bald!
Not much new to report. We are still waiting for her cells to grow and Lindsey continues to need platelet and red blood cell transfusions. The doctors tell use they are pleased with how Lindsey is doing so far. They also told us that while Lindsey is doing well now, not to be disappointed if she starts to run a fever or seems to take a step or two backwards in her recovery. We still do not know when we may be able to leave the hospital for the Ronald McDonald House, but do not want to rush leaving before we are sure Lindsey is ready.
Thank you for checking on Lindsey. Also, a special thanks to all Homewood Church of Christ members who have been praying for Lindsey, and have sent cards and gifts. I wish I had the time to thank you all individually, but things are so hectic.
Victoria - Lindsey's blessed mom
Monday, February 4, 2008 8:16 PM CST
Day +4
Lindsey continues to do well although she has the start of some pretty uncomfortable mouth sores which started last night. Lindsey has not eaten anything for several days and has been on IV nutrition. The doctors and nurses had told us to expect her to lose her appetite, especially once the mouth sores begin. The mouth sores will clear up once her white cells begin to grow, which may be in another week or so. Lindsey is now receiving morphine for the pain which really helps without making her too sleepy. Lindsey has also had issues with her blood pressure being too high due to certain IV meds and has had to take various medicines to regulate her blood perssure to a better level. Also, lately her blood suger is really high due to the meds and IV nutrition she is receiving. She has had to take several insulin shots to get her blood sugar down. The high blood pressure and high blood sugar is an unfortunate side effect to the transplant protocol. Once Lindsey is weaned of certain medications her blood sugar and blood pressure levels should return to normal.
Right now Lindsey is having more good days than bad. The doctors and nurses have told us that things will get worse before they get better, so we are expecting the next several days to be rough. Lindsey is handling the situation she is in with much bravery and strength. The doctor told us this morning that they do not even start looking for white cells until Day +7 so we will continue to wait. Lindsey still has not lost her hair, but we are told the day is near. So far, she seems accepting of the fact that she will lose her hair temporarily. We have started decorating a box that she will use to store her hair in once it falls out. She is also decorating a box that will hold the blessing program, the label from her donated stem cells, and other memorable items of her transplant day. We will forever be grateful to the parents of the little girl whose cord blood has given Lindsey a second chance at a healthy life. One nurse put it well when she called the bag of stem cells "life in a bag".
Thank you for checking on Lindsey. All in all, the doctors say they could not be more pleased with her progress, so we are holding on to the positive. Neither, Bob, Lindsey, or I are getting much sleep and we are all looking forward to the day when we can return to the Ronald McDonald House - perhaps around Day +30. The hospital staff is wonderful, but it will nice to be at RMH.
Victoria - Lindsey's grateful mom
Thursday, January 31, 2008 7:25 PM CST
Day 0
The countdown to Lindsey's healing begins with Day 0 - Transplant Day. The past few days have been difficult for Lindsey as the chemo and other medications have been working together to prepare her body to receive the donor stem cells. Lindsey's transplant went smoothly. It began at 2pm and was finished about 20-30 minutes later. Lindsey was not excited about the process; to her it was just another bag of blood she was receiving through her central line. Lindsey's dad and I were very excited and anxious. She did well afterward, only feeling slightly ill for a short time before she became playful again. In the evening she did an art project with the art therapist. We have been told to expect her to feel pretty yucky in the over the next few days and to not be alarmed if it seems she is uncomfortable.
Now we will sit patiently and wait for Lindsey's body to accept these new cells and begin growing new cells in her marrow. The doctors and nurses have all said that Lindsey has been responding as expected, and warned us that before things really get better, Lindsey will go through a rough couple of days over the next week or so. This is due to the chemo drugs really taking hold of her body and the huge adjustment her body must make to the new cells. Although Lindsey was blessed enough to receive a 6/6 match cord blood transplant there is still alot of work for her body to do before her counts begin to rise.
We are so impressed with the wonderful staff of doctors and nurses at Fairview. These folks are angels on earth and have been so kind to us, and patient with our many questions and concerns. They truly care about Lindsey's recovery and that makes a big difference to us as parents.
I will continue to update as I can.
Thank you.
Victoria - Lindsey's grateful mom
Tuesday, January 29, 2008 4:47 PM CST
Today is Lindsey's last day of chemo treatments. The past few days have been very rough for her. She has been sick and just all around very uncomfortable. Lindsey has been very brave and strong throughout this entire process. She will have the day off tomorrow and then Thursday will be Lindsey's re-birthday. After Thursday we will simply wait for the new cells to grow. The doctors and nurses here have said that Lindsey is doing well and that her treatment and how she is feeling is going according to plan. It is very difficult to watch Lindsey feel so miserable since we are so used to seeing her active and smiling, but we remind ourselves that once this entire process is over and we return home for Lindsey to continue healing she will be able to lead a full and healthy life. This is our prayer and our goal for Lindsey. We are blessed to be able to be here in Minneapolis for Lindsey to receive such excellent care. Although the treatments are quite grueling for Lindsey, we are fortunte that there is this kind of care available for Fanconi Anemia.
Thank you to all who have signed Lindsey's guestbook. We read the messages to her. Thank you to all who have sent gifts and good wishes to Lindsey.
I will continue to update as I am able.
I would like to ask for special prayers for a good friend back home, Jerry Barnes and his family. Jerry and Judy Barnes' son Jeremy died unexpectedly, leaving behind a wife and young son. The Barnes are a wonderful and faithful family.
Thank you.
Victoria - Lindsey's grateful mom
Friday, January 25, 2008 6:35 AM CST
Today Lindsey will have her radiation treatment. Tomorrow she will begin chemo. Lindsey was admitted to the hospital yesterday and we spent the afternoon getting her settled in to her room. We decorated her walls with posters and wall stickers and it turned out very colorful. We met several great nurses and had a visit from the doctors. We remain positive in light of Lindsey's test results over the past week showing that she is healthy and free of any known infection going into the transplant process. We are also encouraged that Lindsey has a 6/6 match cord donor available for her big day on 1/31/08.
I will continue to post updates as I am able. We truly appreciate everyone's kind words and prayers during this stressful time. Lindsey has adjusted very well to her central line and being away from home. Over the next 30 days or so she will be confined to her hospital room to reduce the chance of infection. The hospital has plenty of activities for the kids, plus we brought plenty of books, games, and other diversions for Lindsey.
Victoria - Lindsey's blessed mom
Friday, January 18, 2008 6:44 PM CST
We have finally moved in to the Ronald McDonald House. We are learning our way around the house and just beginning to settle in. It is a relief to move out of the hotel and into our home away from home.
Our address is Ronald McDonald House 621 Oak Street SE Minneapolis, MN 55414
Lindsey will be admitted 1/24/08 and begin chemo and radiation on 1/25/08. Lindsey's transplant and "re-birthday" is scheduled for 1/31/08.
It is very cold here but we are hoping to do something fun tomorrow.
Thank you for checking on Lindsey.
Victoria - Lindsey's blessed mom
Tuesday, January 15, 2008 3:20 PM CST
We safely made it to MN on 1/12/08. Lindsey saw snow and played in it for the very first time in Wisconsin when we stopped overnight before arriving in MN. She was truly fascinated by the snow and had a great time playing in it. We are still waiting to get in to the Ronald McDonald house, but hopefully we will get in over the next few days so we can actually unpack and spread out a bit. Sunday we went to the Mall of America to visit the aquarium and so Lindsey could ride a few rides before beginning her treatment. Yesterday was the first day of tests and it was a very long day. Lindsey had labs drawn and we went over this weeks schedule with the bone marrow transplant clinic folks. We are looking at Lindsey being admitted for radiation and chemo probably next Wednesday or Thursday. We met with the folks who were planning to place Lindsey's central line today and Lindsey had xrays. We also met with the radiation department to discuss this phaase of her treatment. They discussed side effects of the radiation and chemo with us. We are fortunate that MN continues to improve the transplant protocol and decesing the amount of radiation and chemo patients must receive prior to transplant. There are stil plenty of unpleasant side effects for Lindsey, but I believe she will handle them okay. We discussed the possibility of her losing her hair, but stressed it would be temporary. She seemed okay with it, but I suppose we will not really know how she feels until it happens. I believe that if Bob and I, as her paretns, are able to remain positive and calm throughout this entire process, Lindsey will far much better, also. This morning Lindsey had to report for surgery at 6am. She had a bone marrow biopsy performed and her central line place. I attended a class to learn how to care for her line. This line will be in place for about 6 months or so, but it will prevent Lindsey from having to get poked for blood draws and medicine. We have another long day tomorrow, Thursday, and Friday. We have a light week next week, though. As far as the weather here - it is unbelievably cold. We have already experienced below zero temps and I can tell you it actually hurts to breathe. Coming from Alabama this is a huge change for us. Once we have a real address I will post it. Right now are days are spent at the hospital meeting folks and Lindsey having to go through tests. She is being very brave and still manages to smile through it all.
Thank you for checking on Lindsey, and please continue to remember her in your prayers.
Victoria - Lindsey's grateful mom
Tuesday, January 8, 2008 1:16 PM CST
Well, we had a great Christmas and Lindsey enjoyed her "Bon Voyage" party a few days after Christmas. Lindsey was also able to have a couple of playdates prior to her school starting back classes today. Lindsey will not be returning to her school this year so I went to pick up her books and other supplies yesterday. Both the administration and Lindsey's teachers have been very supportive and we appreciate their willingness to work with us while we are away in MN. Speaking of which, we are planning to leave for Minneapolis this Thursday morning. We are scared but also hopeful that this treatment will allow Lindsey to lead a fuller and healthier life when we return home. We have cinfidence in Dr. Wagner and the team in Minneapolis to offer Lindsey the best care possible. Lindsey had her last horseback riding lesson for a while yesterday evening. Lindsey has really enjoyed her lessons and being around the horses. It has really given Lindsey something good to look forward to each week in spite of the incerasing doctor visits. We have been blessed to find a very kind and patient young woman named Allison who has been giving Lindsey riding lessons and teaching her about caring for horses. I know Lindsey will miss her and we hope to pick up the lessons when we get home and Lindsey is strong again. I stopped by my work yesterday to tie up some loose ends. I am one of the fortunate few who has a job they really enjoy and I have been lucky to work with some very kind and generous folks during these difficult years leading up to Lindsey's transplant. My job has offered a bit of normality during these uncertain times and has been a great source of laughter when I have been feeling low.
Lindsey's pre-transplant tests will begin 1/14/08. I believe she will go into the hospital for additional pre-transplant procedures around 1/28/08 or so. We are currently on the waiting list for the local Ronald McDonald House. I will post an address and phone number once we get settled. Please continue to pray for Lindsey. There are so many people we would like to thank for their pryaers and kind words of support, but it is hard to remember everyone - so thank you.
Victoria - Lindsey's blessed mom
Wednesday, December 19, 2007 7:25 PM CST
Well, I am sorry for not updating sooner but alot has happened in the last week and I have needed time to process all that we are currently facing in regard to Lindsey's treaatment. Lindsey's counts were very low last week and again today (although there was a slight increase in platelets). During conversations with our local hematologist and conversations and emails with Dr. Wagner in MN we have decided that now is the time to move forward with Lindsey's transplant. Lindsey's pre-transplant regimen is set to begin in Minneapolis on 1/14/08. Bob and I have come to the decison after much thought and prayer and although this is a scary step, it is a necessary one for Lindsey to have a good quality life. We will be spending roughly 4 months in MN. This will be a big change for us coming from Alabama. Lindsey has always wanted to see snow, and now it looks like she will be seeing alot of snow. I had the opportunity to speak with another mother whose daughter went through transplant with Dr. Wagner and she offered good insight. Thank you so much, Barbara. It was really nice to be able to communicate with a mom who has "been there and done that". Please continue to keep Lindsey in your prayers. We plan to enjoy Christmas and then focus on our trip to MN. I see this as an opportunity to help Lindsey. I have finally come to accept this next step and look forward to Lindsey's healing. I realize that I must be strong for her and pray that I am up for the momentous task of seeing her through this process. I do not want her to worry or be afraid - that is my job and a burden I am more than willing to carry for her.
Victoria - Lindsey's blessed mom
Wednesday, November 28, 2007
I realize it has been a while since I have posted any new information. Lindsey continues to have her blood counts checked every two weeks. She really is a trouper about these visits and has not had any trouble keeping up with her school work. The latest picture I have posted above is from the school beauty pageant Lindsey participated in last month. She had a ball getting all dolled up and absolutely loved her dress (pink is her favorite color). Overall, Lindsey’s health has been pretty good. No major illnesses as we begin cold and flu season in earnest. Lindsey is still not participating in PE classes due to her low counts, but does not mind much since she has become the teacher’s helper during PE time and gets to run errands at the school. Lindsey is a very responsible girl and loves to help out. We are planning to pick out our Christmas tree tonight, which Lindsey always does a good job of picking out the perfect tree each year. We will take our time decorating it with the many, many, many ornaments we have collected over the years. It seems that Lindsey (and I) believe you can never have too many Christmas ornaments. Lindsey will be visiting Santa in the next few weeks with her wishes for special gifts. She has been such a good kid this year (as usual) that I am sure Santa will have no problem with granting her gist wishes. This weekend Lindsey will begin horseback riding lessons. Lindsey LOVES horses and has had a few lessons through the Girl Scouts in the past couple of years. Lindsey and I went on our first trail ride 2 weeks ago. Anyway, I have found a local place that provides English riding lessons and Lindsey is very excited. The woman I spoke to says she gives individual lessons and shows the kids how to groom and tack up the horse. I suppose both Lindsey and I will learn a lot together. It is hard to believe that Christmas is almost here. The time has really flown over the last few months. I believe we are still looking at leaving for Minneapolis during the first part of 2008. I am hoping to hear something about a definite date from Dr. Wagner prior to Christmas. Waiting is so difficult sometimes.
Thank you for checking on Lindsey and please continue to remember her in your prayers as we are about to take a major step in our journey.
(NORMAL) 11/26/2007
WBC (5.0-14.5) 4.3
RBC (3.9-5.3) 1.9
PLT (140000-440000) 29000
Hgb (11.5-13.5) 8
ANC (above 1000) 907
Victoria – Lindsey’s blessed mom
Friday, October 26, 2007
I have posted Lindsey's latest counts from 10/23/07 below. Some are up and some are down, so we are still in a holding pattern. I was very pleased to see the rise in her ANC. I believe we are still looking at leaving for MN for transplant around January or February at the latest. We are waiting for further guidance from Dr. Wagner in regard to an actual date to head north. Lindsey is finishing up having a nasty cold. She is much better except for a nagging cough that continues to hang on. We are going trick or treating at the state park tomorrow. Lindsey is Pocahontas this year. I will post pictures next week. Next weekend is the school pageant. Lindsey is excited and nervous. She loves to dress up, so I know it will be fun for her. She is such a joy to be around. I am so blessed to be Lindsey's mom. I always look forward to seeing her at the end of the work day and to hear about her day at school. She is such a good person and has such a good and kind heart. Lindsey is wise beyond her years and has been very brave throughout this 3+ year journey with FA. I love my daughter beyond words.
Lindsey got her report card last week and had all A's. I am very proud of her for doing so well in spite of having missed a fair amount of school so far this year. She loves to read and is getting better at her math skills. We have talked with her a little bit more about our leaving for MN for a few months in order for her to undergo transplant. She is excited about the prospect of seeing snow and being "homeschooled" for a while. We have not shared very many details about the transplant process, just that the transplant itself will be similar to a transfusion and that we will have to remain in MN for several months afterward.
Right now we are focused on the holidays coming up (Halloween, Thanksgiving, and Christmas). Our weather in Alabama has finally changed to cooler temperatures and that has put Lindsey in the holiday mood.
(NORMAL) 10/23/2007
WBC (5.0-14.5) 3.9
RBC (3.9-5.3) 1.8
PLT (140000-440000) 25000
Hgb (11.5-13.5) 7.7
ANC (above 1000) 1148
We will be returning to Children's Hospital for more blood work in a few weeks. I am praying that Lindsey's red count and hemoglobin will rise. Thank you for checking on Lindsey and please continue to remember her in your prayers.
Victoria Lindsey's thankful mom
Friday, October 5, 2007
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FARF has helped make amazing strides in FA Research. If you feel compelled to donate to FARF in honor of Lindsey - Thank you. - Victoria Lindsey's grateful mom
Tuesday, September 25, 2007 5:06 PM CDT
Lindsey had her counts checked again yesterday. I have posted the results below. There was a very slight drop from two weeks ago. We will go back to Children’s on October 8 for more blood work. I believe that Lindsey is getting pretty tired of having blood work every 2 weeks, but she does realize that it is necessary. She has started asking more questions about FA and about the upcoming transplant. We are only giving her basic information and stressing the positive outcome of the treatment.
We are planning a trip to the mountains in November. It will be nice to have a break before Christmas. I believe we are still looking at having to leave for Minneapolis after the first of the year, but will know more with each test result and communication from Dr. Wagner.
Lindsey is still doing well in school and looking forward to fun things in the near future such as her friend’s birthday party this weekend, trick or treating as Pocahontas, the school beauty pageant in November, and other good things in between.
Lindsey’s energy level is still good and she is happy. I am content with this. Thank you for checking on Lindsey and for your continued prayers.
(Normal) 9/24/07
WBC (5.0-14.5) 3.38
RBC (3.9-5.3) 2.48
PLT (140000-440000) 23,000
HgB (11.5-13.5) 8.8
ANC (above 1000) 608
Victoria – Lindsey’s thankful mom
Tuesday, September 11, 2007
Lindsey went to have her blood work yesterday and we have received answered prayers! Lindsey’s counts are up slightly from 2 weeks ago. Bob and I are pleased with any movement in a positive direction. I will be taking Lindsey back to Children’s for more blood work on 9/24. We are hoping Lindsey’s increased counts will hold steady over the next few months so we are able to spend Christmas at home this year. Of course, if we got the call to go to Minneapolis tomorrow we would certainly not hesitate to make the trip. I suppose Christmas becomes more meaningful when you have a sick child.
Lindsey is still doing well. She is till healthy and active. She attended a friend’s birthday party and had a great time playing on the water slide and seeing her friends. I believe she is getting tired of me saying “don’t run” and “be careful” so much, but I cannot help but worry sometimes.
Thank you to everyone who remembers Lindsey in their prayers. Your prayers mean more to us than you could ever imagine at this point in our journey.
(Normal) 9/10/07
WBC (5.0-14.5) 3.38
RBC (3.9-5.3) 2.37
PLT (140000-440000) 27000
HgB (11.5-13.5) 9.6
ANC (above 1000) 648
Victoria – Lindsey’s prayerful mom
Tuesday, September 4, 2007
Well, Lindsey had her counts checked again on August 27 and they are a good bit lower than they were in July. We are especially concerned with her low ANC. Bob and I spoke with Dr. Wagner yesterday and he seems to feel that we are heading to transplant sooner rather than later. He could not pinpoint an exact time for us, but seemed to suggest that Lindsey’s transplant may happen as soon as just after the first of next year. Bob and I felt encouraged by the research news Dr. Wagner shared with us during his call. Per his suggestion and due to her low counts, Lindsey has had to discontinue her gym class. During gym class she now goes to the library to read. She is actually quite happy with this development, as she absolutely loves to read. I am in the process of getting my ducks in a row regarding my job and how we will handle maintaining our household from Minnesota for several months while Lindsey is recovering. We are planning a trip to Gulf Shores very soon and would like to also take a short trip in the fall. Lindsey appears to be just as healthy as ever and is still full of energy. We have to take this one day at a time and pick and choose what we share with Lindsey in regard to her treatment. We pray for strength and guidance as we continue our journey. We also pray that Lindsey will have the understanding and strength to accept her future.
We will have Lindsey’s blood counts checked every 2 weeks for now. If they come up we may be able to postpone the transplant for a few more months. We need for Lindsey to be strong and healthy when we leave for Minnesota.
Lindsey’s counts are posted below.
(NORMAL) 8/27/2007
WBC (5.0-14.5) 2.9
RBC (3.9-5.3) 2.3
PLT (140000-440000) 26000
Hgb (11.5-13.5) 8.8
ANC (above 1000) 441
Victoria – Lindsey’s grateful mom
Sunday, August 12, 2007 6:38 PM CDT
Well, Lindsey has completed her first week of third grade and I would definitely call it a "success". She has a new teacher this year, after having the same wonderful teacher for the last three years. Lindsey's new teacher has a great reputation and I have heard terrific things about her, so I trust this year will be another good one for Lindsey. It is hard for me to believe that Lindsey is already in thrid grade. It seems like yesterday she was starting kindergarten and adjusting to being a student.
Overall, Lindsey's health remains pretty good. We will return to Children's hospital August 27th to have her counts checked again. I pray they have moved up. My goal is to keep Lindsey as healthy as possible this year. It gets harder to do once school starts.
We are anxiously planning our annual trip to Gulf Shores next month. Lindsey is already asking how much longer until we leave for the beach. It is a fun and relaxing time for us and we all look forawrd to this trip each year.
Not much else to report. Alabama is still suffering from a severe drought and record high temperatures. It is to the point that you cannot even relaly enjoy being outside, unless you are near a pool.
I trust that Lindsey will have another good week in school and that she will continue to adjust to life as a thrid grader. I told her not to worry about haivng any homework the first week, but she did end up having homework on the first day. I guess third grade is serious business. I am glad that Lindsey loves to learn and takes her role as a student so seriously. She already likes her new teacher, and is looking forward to what the rest of the year will hold for her.
Thank you for checking on Lindsey and please continue to remember her in your prayers.
Victoria - Lindsey's blessed mom
Thursday, July 19, 2007
Lindsey had her doctor’s appointment on Monday July 16. We tried an afternoon appointment this time, but still had to wait quite a while; and due to an emergency upstairs did not get to actually speak with her doctor that day. That being said, we understand and realize that there is always a long wait in the clinic and also that emergencies do occur in other parts of the hospital that may require one of the hem/onc doctors to not be available to us. We also realize that we are not the only parents sitting in the clinic 8 waiting room with a sick child who needs specialized care. Every parent in that waiting room is in the same boat - walking in the same shoes; albeit at different parts of the journey to blessed recovery for their child. Lindsey’s dad and I feel blessed that we live close to such a wonderful hospital as Children’s Hospital in Birmingham. Lindsey has always received excellent care and the doctors, nurses, and staff have always treated us well and go out of their way to make the kids feel at ease during the visits. The nurses in particular are great at Children’s, and have to face a lot of stress and sadness during their days and nights at the hospital. I just wanted to put in a good word about the wonderful people at Children’s Hospital, especially the folks at Clinic 8 (Hematology and Oncology). It seems that they are not recognized for all of their good works as often as they should be.
Lindsey was a trouper, as usual, during the blood draw. I have posted her counts below. I spoke with Dr. Watts the next day and he was still waiting for word from Dr. Wagner in Minnesota. Basically, Dr. Watts feels that although some of Lindsey’s counts were up and some were down, we are looking at “no real change” from last month. We resume our holding pattern until further notice. Dr. Watts is supposed to get back to me after communicating with Dr. Wagner in order to set up another appointment. I am not sure if we will need to go back next month, 2 months, or 3 months. Dr. Watts really hit the nail on the head when he stated that as Lindsey’s parents, we cannot realistically make any long term plans since we do not know when we will have to move forward with a transplant or any other treatment options. I never realized it before, but I do pretty much live my life from one doctor’s visit to the next. We abstractly plan down the road for vacations, etc. but are not able to make any concrete plans beyond a few months.
Lindsey has had a good summer. I cannot believe it is almost over. She will begin third grade August 7. The summer has been a good mix of “busy” and “slow”. Lindsey has learned to swim and loves it! She has read more books than I can recall; and although she has complained a bit, she has continued to practice her math skills. Lindsey has not been sick at all this summer, yet I know that will change once school starts back in a few weeks. We are going to try to enjoy these last few weeks of summer before the school year starts back and we hit fast forward mode. A few weeks ago I repainted Lindsey’s room in a beautiful pink (her favorite color) and redecorated her room in a Disney Fairies theme. She spends a fair amount of time now in her room reading and likes being in there to relax or play. She was so surprised and delighted during the unveiling of her “new” room. She grabbed me in a big hug and said “I love it. Thank you, mommy.” That hug made all the hard work and sore muscles worthwhile.
Lindsey’s counts 7/16/07:
(normal) 7/16/07
WBC (5-14.5) 4.8
RBC (3.9-5.3) 2.42
HgB (11.5-13.5) 9.6
Platelet(140,000-440,000) 32,000
ANC (above 1,000) 720
Thank you for checking on Lindsey and please continue to remember her in your prayers. Please also remember all the other families facing transplant, making difficult treatment decisions, and especially those with empty arms.
Victoria - Lindsey's thankful mom
Wednesday, June 20, 2007
Lindsey had her appointment on June 14 with the local hematologist for routine blood work. She needs to go every 3 months so he can track her counts. I had expected her platelets to be pretty low due to the fact that she has been bruising so easily. I have posted Lindsey’s latest results below. All of her counts had dropped since March. Dr. Watts asked if she was perhaps fighting some kind of virus, but I told him I did not think she was sick at this time although she did have a few sniffles which I attribute to the drought and poor air quality in our area. He said he would send her results on to Dr. Wagner as usual and they would discuss how to proceed from here. He asked that we bring Lindsey back next month as opposed to waiting the usual 3 months. He is concerned that this may be the start of a downward trend in her counts and would like to so if this is so, or if these low counts were a fluke. I am going to try my best not to worry too much until mid-July when we return to Dr. Watts for more blood work. I keep telling myself there is nothing I can do to change Lindsey’s counts and that I will continue to enjoy our summer. I suppose that we will really have a better picture of what is going on and where we are headed in regard to Lindsey’s treatment after our appointment in July.
The next evening Lindsey had her cheernastic recital. She was nervous, but did great. One of the advantages to being small is that she gets to be on top of the pyramid when they “build”. She really likes that. So, with cheernastics and scouts over for the summer we have lots of free time to enjoy. I took Lindsey swimming twice over the weekend. She is quite the little fish. We plan to see the new Nancy Drew movie in the next few weeks, and the new Disney movie, Ratatouille. I believe that we will stick close to home this summer and simply enjoy the pool and the time to relax. It has been so hot and dry here that we have not been able to go camping lately. There is a “no campfire” rule in effect as well as a ban on burning leaves, etc. The state is also clamping down on fireworks this year for July 4.
Lindsey’s dad and I appreciate all of the prayers and good wishes sent Lindsey’s way. She is such a special girl and so strong and brave.
(Normal) 6/14/07
WBC (5.0-14.5) 3.79
RBC (3.9-5.3) 2.46
Platelet(140,000-440,000) 24,000
HgB (11.5-13.5) 10.0
ANC (Above 1,000) 720
Victoria – Lindsey’s prayerful mom
Tuesday, June 5, 2007 6:01 PM CDT
So far we have been enjoying the summer. Lindsey celebrated her 8th birthday on June 1st. We did not have a big party this year. Instead her best friend came over to spend the day and have a slumber party. I cannot believe that my girl is 8 years old. She is getting to be quite grown up and I really enjoy watching her grow and change and mature through the years. She is a very thoughtful and kind little girl and is compassionate beyond her years.
Lindsey has learned to swim this summer and wants to spend all of her free time at the pool. We went Sunday for a while and plan to go back again this weekend. She has wanted to learn to swim for a while, and we have kept meaning to get her in to swim lessons, but instead she has learned to swim “on her own”. She is quite a natural. She is very proud of herself – as she should be. It is wonderful to watch her grow and accomplish her goals.
This week Lindsey has Zoo Camp which is a half day program at the Birmingham Zoo. Yesterday was her first day and she really enjoyed it. Lindsey is a real lover of animals and enjoys learning about them, so this was the perfect way for her to spend part of her summer. On June 15th Lindsey has her cheernastics recital and then classes will end for the summer. We do not have anything else really planned for the summer. I suppose we will try to go camping at some point, but other than that we plan to simply slow down and relax. The weather here in Alabama has been very hot and very dry. We are in the middle of a major drought.
It is the “normal” things of Zoo camp, Lindsey learning to swim, cheernastics classes, or just doing “nothing” together that I really cherish. While we are enjoying these times it is easy to push FA to the back of my mind – but thoughts of FA are never really far from my thoughts. I try to fool myself, but that only works for so long. As an FA parent you constantly live with the sense of waiting for the other shoe to drop – the call that it is time to make real decisions about transplant. So I pray for more times like these where we are humming along in life, doing normal things and Lindsey being able to grow and learn and set and meet her goals. July 29th will mark 3 years to the day since Lindsey’s diagnosis. We continue to pray and continue to hope. I do not take for granted being able to read Lindsey a story or play Littlest Pet Shop with her on the floor of her playroom. I do not take for granted the quiet times we spend talking about nothing and everything all at once. I do not take for granted her sweet kisses, strong hugs, and desire to cuddle. I realize that my child is a gift and that the time we spend is precious.
We have another doctor’s appointment in a few weeks for blood work. I will post the results when I get them. Thank you for checking on Lindsey and please continue to pray for her to have strength and understanding as we continue our journey with FA.
Victoria – Lindsey’s thankful mom
Thursday, May 3, 2007
Well, this past weekend was a very busy one for us. We had brought our new camper to the state park near our house on Thursday night. Friday afternoon and evening several moms from Lindsey’s school and I sorted and priced items for the next day’s yard sale. Saturday morning I was up early to get to the school and get set up for the yard sale. The Third Annual Yard Sale to Benefit the Fanconi Anemia Research Fund was a great success. “Thank you” does not fully cover what we feel toward all of the wonderful folks that helped with the yard sale and came out in support of this event. We are so blessed to have Lindsey attend such a fine school filled with such incredibly kind and supportive folks. In particular, we are thankful for Lindsey’s teacher who gives so much of herself everyday in the classroom and even more so as she takes the reins to help organize the yard sale each year.
Saturday evening after the yard sale we roasted hot dogs and marshmallows over the campfire. I must declare our maiden camping trip in the new camper a resounding success. We had a very nice time and did not have any major trouble. Bob was able to get us set up and packed up fairly easily for it being his first time. Lindsey had a ball feeding squirrels, watching deer, roasting marshmallows, wading in the very cold stream, and just being wild outside. She was exhausted every night and slept well. We are going to try to go camping again soon – maybe this weekend. We are starting to research other area parks to visit now that we are (somewhat) experienced campers. Lindsey is really looking forward to getting out of school soon. I am ready for the summer to get started, also. We have a lot of fun things planned this summer. Lindsey will go to Zoo Camp this year, and of course we will go camping, but also hopefully find some time to just relax.
So, overall last weekend was great. I met some very nice people at the yard sale and was able to talk to folks about FA. It is such a rare condition that most people have never even heard of it. I doubt if I would know what FA was if Lindsey were not diagnosed with it. Thank you for checking on Lindsey. Please continue to remember her in your prayers. Please pray for all FA kids and adults as they continue their journey with this condition. We are thrilled that we were able to raise money for the Fanconi Anemia Research Fund. If you feel moved to learn more or donate to the Fanconi Anemia Research Fund please visit http://www.fanconi.org
Victoria – Lindsey’s blessed mom
Thursday, April 19, 2007
Sorry for the lack of updates. After Lindsey got over her case of strep throat she had a cough that continued to hang on. We did make it to Atlanta the weekend of 4/7 and had a great time. Lindsey enjoyed the zoo and especially the pandas. It was pretty cold that day, which is odd for this time of year, but we were able to see everything we wanted to at the zoo. On Sunday (Easter) we went to the Georgia Aquarium which was Lindsey’s favorite part of the trip. She loves aquariums and likes ocean or water animals better than land animals. Her favorite sea animal is the dolphin, of course. She really enjoyed the beluga whales with their smiling faces and the sea lions. We went through the tunnel several times to see the giant whale sharks and other beautiful fish and creatures. Lindsey’s favorite activity of the day was the “touch pool”. In it were bonnet head sharks and cow nose rays that she was able to touch. We went back a couple of times for her to do that throughout our aquarium visit. I took lots of pictures and we still talk about the trip. It was a quick trip but lots of fun – a good break. When we got home on Sunday afternoon Lindsey was happy to see that the Easter Bunny had indeed visited although we were not at home. He chose to hide the eggs inside our house so the mischievous squirrels in our yard would not run off with them before we made it back from Atlanta.
By that Monday night Lindsey had developed a horrible stomach virus. She and I slept very little that night and Tuesday morning for having to run to the bathroom. By Tuesday afternoon she was no longer throwing up but was very weak and pale. She had very little energy and was definitely not herself. She stayed home Wednesday to rest up and got her color back and was more like her old self. She has been healthy for a very long time (not even a cold) but for the past month it has been one thing after another in regard to illnesses. She is doing well now and is happy and full of energy and I suppose all kids do go through their “sick” spells.
We will return to Children’s Hospital in June for blood work. Other than that our plan is to enjoy the summer. Lindsey’s last day of school is May 18. I know she is looking forward to school being out, but will miss seeing her friends everyday.
This week Bob will be picking up our new RV. We are excited about all the adventures we will be able to have with this new form of recreation. We live very close to a state park and will camp there first before venturing farther.
The details about the 3rd Annual Yard Sale to benefit the Fanconi Anemia Research Fund are below:
All proceeds from the Yard Sale will go directly to the Fanconi Anemia Research Fund in Eugene, Oregon.
Please visit http://www.fanconi.org to learn more about Fanconi Anemia.
What: Yard Sale to benefit the Fanconi Anemia Research Fund
Where: front lawn of Bessemer Academy 1705 4th Avenue SW in Bessemer - inside the school if it rains
When: Saturday April 28, 2007 8am-2pm
Thursday, March 22, 2007
I realize that it has been a long time since I have posted any news, but we have all been pretty busy with work, school, and life in general. On Sunday March 11, Lindsey and I went to the Taylor Hicks concert at the historic Alabama Theatre. It was her first concert and she had a great time. We got to the theatre pretty early in order to get a good parking space and Lindsey was pretty patient about having to wait for the show to start. We had excellent seats and the show started on time. I watched Lindsey as she watched the concert and she was totally mesmerized. She sang along with the songs she knew and her feet kept time with the music. We left before Taylor’s last song in order to get a head start before the rush of the crowd, plus Lindsey was starting to get tired since it was way past her usual bedtime. It was a good first concert for her, and Taylor Hicks and his band put on a great show.
The day before the concert Lindsey had a play date with, Jenny, her favorite friend from school. So, all in all Lindsey had a great weekend. Lindsey had her six month bone marrow biopsy scheduled for Friday March 16, so it is good to have fun things to do beforehand and to plan something fun for after. Lindsey has her bone marrow biopsies done at Children’s Hospital in Birmingham. I must say that this visit set a new record for speed. Lindsey’s appointment was scheduled for 8:30am and she was in recovery before 10:30am. A special thanks to all who made this possible. Our last visit took much longer with Lindsey not even being taken back to the biopsy procedure until nearly 1pm. Needless to say, this visit was much better for her and us, as parents. The biopsy was pretty uneventful and she came out of the anesthesia without any problem. She relaxed in recovery for about an hour or so before we left to head home. Dr. Watts called this morning with the biopsy results. The test shows 5-10% cellularity in the sample that was taken on 3/16/07. Dr. Watts pointed out that this is pretty much the same results we received 6 months earlier from the biopsy in September. Dr. Watts has already communicated with Dr. Wagner in MN and he feels that since Lindsey’s counts are basically stable and that the cellularity is pretty much unchanged that there is nothing more we need to do right now. The plan is to bring Lindsey back to Children’s in 3 months to have her counts checked and then follow up as needed (maybe a year or six months depending on counts) with another biopsy. Dr. Watts indicated that, while the cellularity is important, Dr. Wagner’s decision to move forward with the transplant will mostly be dependent upon Lindsey’s counts and her potential need for transfusion. We do not want Lindsey to get to the point where she needs blood or platelet transfusions, so if she did reach that point, it would potentially push us toward transplant rather quickly. We want to wait as long as possible before moving toward transplant since Dr. Wagner and others are researching this rare condition and continually working to improve the transplant protocol in an effort to improve survival rates. Right now Lindsey is happy, healthy, and active. I cannot ask for more than that. Her current bout with strep throat has been mild and has been her only illness since Christmas when she had a mild ear infection.
I have posted Lindsey’s CBC results below. For the most part, her blood counts are holding steady. Lindsey’s ANC is up to 930 from January’s 702, so I was very happy to see that.
Apparently, there seems to be an outbreak of flu and strep throat at Lindsey’s school. Her teacher called Friday evening to say that she and her son are out sick, and that several other kids have been out sick also. In light of this news, we decided to keep Lindsey out of school for the rest of the week. Saturday night she developed a cough and I took her to her regular pediatrician yesterday. He confirmed that Lindsey has strep throat. She does not have a fever or sore throat, so at least her symptoms are mild and I am sure the antibiotic will help in the next couple of days.
3/16/2007
(Normal) Lindsey
WBC (4.5-13.5) 4.43
RBC (4.0-5.2) 2.94
HGB (11.5-15.5) 11.7
Platelet (140-440 thousand) 38,000
ANC (above 1000) 930
Not much new to report. Spring seems to have arrived early and the weather has been warm. The early time change has kind of messed up our sleeping habits and we are all dragging a bit. The warm weather allows for more outside fun, but right now I am trying to keep Lindsey from not being too active – not an easy task – so she will get rid of this bug and get well. We are still planning a trip to Atlanta soon to visit the zoo and the Georgia Aquarium.
Thank you for checking on Lindsey and thank you for your continued prayers.
Please mark your calendars for the 3rd Annual Yard Sale to Benefit the Fanconi Anemia Research Fund to be held on April 28, 2007 at Bessemer Academy on 4th Avenue in Bessemer, Alabama. I believe the start time will be around 8am until 3pm or so. Please make an effort to visit and pick up some great bargains, or to simply make a donation. Please visit www.fanconi.org to learn more about FA and the research fund which has helped make progress possible in learning more about this very rare condition and helping to improve survival rates through changes to transplant protocol and potential gene therapy treatments.
Victoria - Lindsey's blessed mom
Sunday, January 28, 2007 10:37 AM CST
It has been a while since our last update. Lindsey had her appointment on January 18 to have her counts checked. I have posted them below.
(Normal) 1/18/07
WBC (4.5-13.5) 3.9
RBC (4.5-5.2) 2.87
HGB (11.5-15.5) 11.2
Platelet (140000-440000) 33,000
ANC (above 1,000) 702
Overall, Lindsey’s hematologist feels that her counts are holding steady in that they have not dropped drastically. They dropped slightly and I was kind of disappointed to see her ANC drop again. She has remained fairly healthy this winter, and I believe that getting the flu shot this year has helped her. She is full of energy and doing great in school. The local hematologist called me early this week to say that he heard back from the transplant doctor in MN and that he is satisfied that Lindsey’s counts are “stable” due to the fact that they did not drop a lot this time. He would like for us have Lindsey scheduled for another bone marrow biopsy for March 16. She had one in September that showed a somewhat large drop in cellularity. The odd thing was that Lindsey's counts did not take a large drop at that time. The doctor explained that the biopsy is small and taken from one specific place, so Lindsey could have very healthy marrow in other parts of her body helaping to keep her counts up and stable. The nurse assured me that they take a very small sample for the biopsy and that this amount will not compromise Lindsey’s marrow further.
Until then we will be busy with work, school, cheernastics, and scouts. We are hoping to take a weekend trip to Atlanta in April to visit the zoo and aquarium. Also on April 28, Lindsey’s school is planning another Yard Sale to benefit the Fanconi Anemia Research Fund. I will post more details when I know the times, so local folks can come out and support this event. Lindsey’s school has been very supportive and kind since Lindsey’s diagnosis in 2004, in particular her teacher for the past 3 years, Rena Wooters.
So for now it is business as usual. We are trying to keep Lindsey as healthy as possible through cold and flu season and enjoy our time together.
Thank you for checking on Lindsey and continue to remember her in your prayers.
Victoria – Lindsey’s blessed mom
Saturday, January 6, 2007 11:16 AM CST
Sorry for not updating recently, but we have been pretty busy during the holidays. Lindsey was out of school for 2 weeks and only went back this Wednesday. It is a good thing it was a short week, because it will take her (and I) a while to get back into her old routine. I was able to be off from work with Lindsey most of this time and it was so great having this time with her at home. Lindsey made it on to Santa’s “nice” list again this year and received all of the gifts she had hoped for including an Easy Bake Oven, Fur Real Pet, Littlest Pet Shop Playset, Leapster and lots of books. Lindsey had developed an ear infection on Christmas Eve and I was able to get her to the pediatrician the day after Christmas. She got antibiotics and was feeling better in just a few days.
During the holidays it was easy to almost forget about FA. It is something that is always on my mind, but at times I am able to let it drift to the back of my thoughts. I try my best to focus on today and not look too far ahead. It is something I have been working on and getting better at. Lindsey has an appointment with the hematologist on January 18 for routine blood work. I will post the results when I get them. Overall, Lindsey has been very healthy this winter, and her energy level remains outstanding. She leads a very busy and full life and is happy. I cannot ask for more than that.
Next week we begin back with our pre-holiday busy schedule of cheernastics, Girl Scouts, and a full load of school work. Lindsey has lost her third baby tooth this week. It was one of her top teeth and her new smile is so cute. She was very happy and proud to show off her new smile at school.
Not much else to report. Thank you for checking on Lindsey, and please continue to remember her in your prayers.
Victoria – Lindsey’s blessed mom
Monday, December 11, 2006
Not much news to report. We are all looking forward to the Christmas holidays and having some time off. It seems that our schedule get busier the closer we get to Christmas, so it will be nice to have some “down time” after Christmas.
Lindsey had her hair cut a couple weeks ago. It had grown down to her waist and was very pretty, but difficult to take care of. She had her hair cut into a bob up to her chin and it looks very cute on her. She really likes it, and now her hair has a nice wave in it. She is sending her hair to Locks of Love – an organization that makes wigs from donated hair to be given to children and young people who have lost their hair during cancer treatments.
Yesterday, we took Lindsey to visit Santa. She had quite a wish list. I am sure she will get everything she asked for since she is, once again, on Santa’s “nice” list. Lindsey was a big help decorating the Christmas tree a couple weeks ago. She really enjoys the holiday traditions we have created. We will continue with our baking over the weekend.
Right now, Lindsey is still pretty healthy. Quite a few kids at school have been sick, but so far Lindsey has remained well. She has a slight case of sniffles that started yesterday, but still feels good. Tomorrow is her class Christmas party and Thursday night is the school Christmas program. I am hoping that she stays well enough to enjoy these events.
Lindsey will go to the hematologist in mid January for her next blood check. I am hoping and praying that her counts will remain stable or even increase. Lindsey is such a great kid. She is so kind and funny and sweet. I cannot even begin to put into words how much I love her and all of the feelings I have for my wonderful daughter. She is such a gift and I am thankful everyday that I have her in my life.
I have added new pictures to Lindsey’s album.
Thank you for checking on Lindsey. Please continue to remember Lindsey in your prayers, as well as all the other children and families dealing with FA.
Victoria – Lindsey’s blessed mom
Thursday, November 9, 2006
Lindsey had an appointment with the local hematologist this Monday 11/6. I was not sure what to expect, and was pleasantly surprised by a slight rise in her counts since we were last there in September. Overall, it was a positive visit. I had spoken last week with the donor coordinator in MN and she had said they have requested further testing on the cord that seems to be the best match for Lindsey. They are hoping to “hold” this cord for us since she said it seems to be a 5/6 match with a good dosage of stem cells. This is somewhat of a relief although there are still plenty of unknowns facing us.
We had spoken to Dr. Wagner last week, also and he put our minds at ease about several issues. Sometimes it is difficult having a doctor who is so far away. He seems to keep up with his cases and is surprisingly accessible for someone who is so busy. The more we deal with him, and communicate with other FA parents, the more we are convinced that we have made the best choice in doctors for Lindsey. I find some comfort in that. There is still a lot of research needed in regard to FA, but there are also some positive findings each year. If you feel compelled to make a donation to the Fanconi Anemia Research Fund in honor of Lindsey, please visit http://www.fanconi.org to learn more. This is a very rare and serious condition and most of the research funds are generated by FA families and friends of FA families.
Lindsey is doing well, and has been healthy so far this season. We got our flu shots a few weeks ago and she did not have any side effects. Lindsey has been busy with school and still enjoys cheernastics and scouts. Lindsey has been doing very well in second grade. She earned the “Good Citizen” award for second grade and was also on the all A Honor Roll. I am so very proud of her.
I forgot to mention that Lindsey lost her first 2 baby teeth at the beginning of October. Her 2 bottom teeth were very loose and she had one of her teachers from a few years ago pull them for her while she was at school. Since last year, Lindsey had been worrying that she was the only kid in her class who had not lost any baby teeth, then she looses 2 in one day. She was very brave and allowed the younger kids in the 4K class to watch her get her teeth pulled. She brought them home and we had a visit from the tooth fairy. Lindsey wrote a note asking to keep her teeth, which we now have in a little velvet box. The tooth fairy allowed her to keep them, but also left her little gifts. Now her top 2 teeth are loose. Oh Boy!
We have not restarted the Growth Hormone shots we started over the summer. When Lindsey’s counts started to drop Dr. Wagner suggested we discontinue them and see if her counts rose. The local doctor said that he would ask Dr. Wagner about restarting them. But he said we would probably not want to “rock the boat” since her counts have somewhat stabilized. We can always start them again down the road. Lindsey still seems bothered about being the smallest student in her grade, but I believe she is doing better with it this year. She has good friends and she feels good about herself.
Right now, we are looking forward to the holidays and some cooler weather. We will not have Lindsey’s counts checked again until mid-January. Hopefully, this winter will be a healthy one for Lindsey. I will try to post some new pictures soon.
Thank you for checking on Lindsey. Please remember her in your prayers, and all the other children and adults battling FA.
Victoria – Lindsey’s grateful mom
Monday, September 25, 2006
Just a quick update. I heard from Lindsey’s local hematologist about her bone marrow biopsy results. The biopsy shows her cellularity down to 10% from 25% in March. I asked him, how this can be with her counts holding steady and in some cases even rising slightly. He explained that the biopsy sample was only a small one taken from a single place in her body. Her counts holding steady seem to indicate that the marrow somewhere in her body is working well enough to sustain her counts. We will repeat her blood counts in 2 months and may do another biopsy in six months. Good news is that Lindsey's sample did not show any evidence of leukemia. The doctor in Minneapolis did not seem too terribly concerned with her cellularity since her counts held steady but I am still waiting to hear back from him concerning specific questions I have regarding what these results really mean to Lindsey.
Lindsey is still full of energy and happy. On the outside she seems to be a perfectly healthy little girl. It is hard to believe that she has been diagnosed with a condition such as FA. She is doing well in school and enjoying scouts and cheernastic classes. She loves to read. She has to read 1 chapter book a month for school, but goes well past that amount. I am so glad that she likes to read so much. Nancy Drew is her all-tie favorite book series.
We had a relatively quiet weekend. It was gray and rainy most of the time. This weekend Lindsey plans to attend her good friend’s birthday party. And we are hoping to fit in a visit to the local water park. On Thursday Lindsey and I have a field trip with her school. So we have a lot of good stuff to look forward to.
Thank you for checking in on Lindsey. Please remember all of the families going through struggle right now with new diagnoses, treatment decisions, and those who have started the transplant journey.
Victoria – Lindsey’s blessed mom
Monday, September 18, 2006 10:39 AM CDT
On Friday September 15, 2006 Lindsey had her bone marrow biopsy done at Children’s Hospital in Birmingham. She had it done as an outpatient in her hematologist’s clinic. She was not able to eat anything after midnight the night before, and we did not get called back for her procedure until almost noon. Needless to say she was a very hungry girl by the time her lunch was served to her in recovery. She did great during the procedure although she was a little loopy from the anesthesia as she ate her cheese pizza lunch. Dr. Watts made the decision to take a sample from both sides of her back rather than one side, as they usually do. We agreed that this would give a better sample and maybe a truer picture of what is going on with her marrow. Lindsey’s had labs drawn on Friday. I have posted the results below. For the most part, they are unchanged. Dr. Watts stated that he feels her counts are “holding steady”, which I am very happy with. Her platelets and ANC came up just a bit from last month. I should get the results from Lindsey’s biopsy sometime this week. Her back was sore from the biopsy procedure, especially with them taking 2 samples, but she never complained.
9/15/06 (Normal)
WBC 4.01 (4.5-13.5)
RBC 2.76 (4.0-5.2)
HGB 10.8 (11.5)
Platelet 45,000 (140,000-440,000)
ANC 772 above 1,000
Overall, Lindsey is doing well. She has started her cheernastic classes again and Girl Scout meetings. I am so glad that she is developing her interests more by continuing with cheernastics and scouts. I gave her that choice to continue them this year or not. She is interested in both so I figured, why not? She is doing well in school and is enjoying second grade. She loves to read, which makes me very happy. She enjoys spelling and anything “word related”. She is not, however, a big fan of math (although she does like word problems). I try to encourage her without letting her know that I too, never liked math. I notice more and more that she is picking up “young lady” mannerisms. It is so wonderful to see her grow and develop her own personality. She has a great sense of humor and a real love of life. I am so blessed to be her mom. She keeps me busy, but I would not want it any other way.
Victoria – Lindsey’s thankful mom
Thursday, August 17, 2006
We went to visit Lindsey’s local doctor on Monday. They ran labs again and found that her counts did not improve as we had hoped. In fact, her ANC has dropped to 553. The doctor asked what our donor options were. I told him that I had not been in touch with the donor coordinator in MN in over a year. Dr. Watts has scheduled a bone marrow biopsy for Lindsey for September 15, although she had one done in March. He would like to see what is really going on with her, and by looking at her counts, plus the biopsy results he will have a better idea of how Lindsey’s marrow is functioning. He will be in touch with the transplant doctor in Minneapolis about this plan and the results. We are so fortunate to have been lead to Dr. Watts. He is a very good doctor and has been wonderful about communicating with Dr. Wagner in Minneapolis. Also, Dr. Wagner has been very good about staying in touch with us, and being patient with all of our questions and concerns.
I heard from Dr. Wagner via email and he got in touch with the donor coordinator in MN and I spoke with her yesterday. She told me that she found some great cords that are 5/6 matches. She stressed to me that this was very good news. Lindsey still does not have an adult donor available, but she said that the cords look great and they are good doses for Lindsey’s size. She said she hoped that this information set my mind at ease. In a way, I suppose it does.
We will know a lot more after September 15, but it seems that things are starting to fall into place for us to move forward toward the inevitable transplant. I am scared, yet hopeful and prayerful that this will provide Lindsey with a chance to be healthy.
This past weekend we went to a local amusement park where Lindsey played in the water park and rode rides for more than 6 hours. Like I told the doctor on Monday, Lindsey’s energy level is great and she shows no outward appearance of being sick. This is good news as it shows she is still strong. Anyway, Lindsey had a great time. We would like to go back soon, but that will depend on the weather. In September we are planning a trip to Gulf Shores. Lindsey loves the beach! We had originally planned to visit Dr. Wagner in Minneapolis in March 2007 as this would be 2 years since he had last seen Lindsey. At that time we planned to have her annual bone marrow biopsy done. Now we are going to have a biopsy done in September. The results will dictate when we go to Minneapolis.
Lindsey is enjoying school this year. She is a very proud second grader. This year has started off smoothly for her and I know she is enjoying being with her old friends and making new ones. Lindsey will start Girl Scouts again next week, and cheernastic classes will begin in mid-September.
Overall, Lindsey is happy and active and that is all that really matters.
I have posted some new pictures.
Victoria – Lindsey’s blessed mom
Thursday, August 17, 2006
We went to visit Lindsey’s local doctor on Monday. They ran labs again and found that her counts did not improve as we had hoped. In fact, her ANC has dropped to 553. The doctor asked what our donor options were. I told him that I had not been in touch with the donor coordinator in MN in over a year. Dr. Watts has scheduled a bone marrow biopsy for Lindsey for September 15, although she had one done in March. He would like to see what is really going on with her, and by looking at her counts, plus the biopsy results he will have a better idea of how Lindsey’s marrow is functioning. He will be in touch with the transplant doctor in Minneapolis about this plan and the results. We are so fortunate to have been lead to Dr. Watts. He is a very good doctor and has been wonderful about communicating with Dr. Wagner in Minneapolis. Also, Dr. Wagner has been very good about staying in touch with us, and being patient with all of our questions and concerns.
I heard from Dr. Wagner via email and he got in touch with the donor coordinator in MN and I spoke with her yesterday. She told me that she found some great cords that are 5/6 matches. She stressed to me that this was very good news. Lindsey still does not have an adult donor available, but she said that the cords look great and they are good doses for Lindsey’s size. She said she hoped that this information set my mind at ease. In a way, I suppose it does.
We will know a lot more after September 15, but it seems that things are starting to fall into place for us to move forward toward the inevitable transplant. I am scared, yet hopeful and prayerful that this will provide Lindsey with a chance to be healthy.
This past weekend we went to a local amusement park where Lindsey played in the water park and rode rides for more than 6 hours. Like I told the doctor on Monday, Lindsey’s energy level is great and she shows no outward appearance of being sick. This is good news as it shows she is still strong. Anyway, Lindsey had a great time. We would like to go back soon, but that will depend on the weather. In September we are planning a trip to Gulf Shores. Lindsey loves the beach! We had originally planned to visit Dr. Wagner in Minneapolis in March 2007 as this would be 2 years since he had last seen Lindsey. At that time we planned to have her annual bone marrow biopsy done. Now we are going to have a biopsy done in September. The results will dictate when we go to Minneapolis.
Lindsey is enjoying school this year. She is a very proud second grader. This year has started off smoothly for her and I know she is enjoying being with her old friends and making new ones. Lindsey will start Girl Scouts again next week, and cheernastic classes will begin in mid-September.
Overall, Lindsey is happy and active and that is all that really matters.
I have posted some new pictures.
Victoria – Lindsey’s blessed mom
Thursday, August 17, 2006
We went to visit Lindsey’s local doctor on Monday. They ran labs again and found that her counts did not improve as we had hoped. In fact, her ANC has dropped to 553. The doctor asked what our donor options were. I told him that I had not been in touch with the donor coordinator in MN in over a year. Dr. Watts has scheduled a bone marrow biopsy for Lindsey for September 15, although she had one done in March. He would like to see what is really going on with her, and by looking at her counts, plus the biopsy results he will have a better idea of how Lindsey’s marrow is functioning. He will be in touch with the transplant doctor in Minneapolis about this plan and the results. We are so fortunate to have been lead to Dr. Watts. He is a very good doctor and has been wonderful about communicating with Dr. Wagner in Minneapolis. Also, Dr. Wagner has been very good about staying in touch with us, and being patient with all of our questions and concerns.
I heard from Dr. Wagner via email and he got in touch with the donor coordinator in MN and I spoke with her yesterday. She told me that she found some great cords that are 5/6 matches. She stressed to me that this was very good news. Lindsey still does not have an adult donor available, but she said that the cords look great and they are good doses for Lindsey’s size. She said she hoped that this information set my mind at ease. In a way, I suppose it does.
We will know a lot more after September 15, but it seems that things are starting to fall into place for us to move forward toward the inevitable transplant. I am scared, yet hopeful and prayerful that this will provide Lindsey with a chance to be healthy.
This past weekend we went to a local amusement park where Lindsey played in the water park and rode rides for more than 6 hours. Like I told the doctor on Monday, Lindsey’s energy level is great and she shows no outward appearance of being sick. This is good news as it shows she is still strong. Anyway, Lindsey had a great time. We would like to go back soon, but that will depend on the weather. In September we are planning a trip to Gulf Shores. Lindsey loves the beach! We had originally planned to visit Dr. Wagner in Minneapolis in March 2007 as this would be 2 years since he had last seen Lindsey. At that time we planned to have her annual bone marrow biopsy done. Now we are going to have a biopsy done in September. The results will dictate when we go to Minneapolis.
Lindsey is enjoying school this year. She is a very proud second grader. This year has started off smoothly for her and I know she is enjoying being with her old friends and making new ones. Lindsey will start Girl Scouts again next week, and cheernastic classes will begin in mid-September.
Overall, Lindsey is happy and active and that is all that really matters.
I have posted some new pictures.
Victoria – Lindsey’s blessed mom
Monday, August 7, 2006
Today is Lindsey’s first day of second grade. She was not excited about it until we went to the school’s open house yesterday. She will have the same teacher she had in kindergarten and first grade. Her teacher is a very kind and gentle person – the type of person that was meant to teacher and mold small children. Lindsey and her friend Jenny had a skate date on Saturday and had a great time. There was some confusion with the actual venue, but it all worked out.
We will be visiting Lindsey’s local hematologist on August 14 to go over her latest results. I have been in touch with Lindsey’s transplant doctor in Minneapolis and he suggested we temporarily discontinue the growth hormone shots. We had been giving them to Lindsey for just under 2 months. We knew in the beginning that there was a chance these shots could effect her counts. The doctor would like for Lindsey to get her counts checked again in the middle of September to see if coming off the shots brings her counts back up. We will then take it from there, I suppose.
While the shots seemed to help increase her appetite and growth, I am hoping that the growth hormone shots have caused Lindsey’s counts to drop. Discontinuing the shots would then allow her counts to recover and give us a reason for the recent drop.
Big news! Lindsey has her first loose tooth. She is so excited about this. She wiggles it constantly. I will post a picture once it comes out. I am guessing it will take a few more days of wiggling. At the open house yesterday she proudly showed her friends her lose tooth. She certainly is growing up. Each day is a blessing.
Victoria - Lindsey's grateful mom
Tuesday, August 1, 2006 5:25 PM CDT
Today we had Lindsey's appointment at Children's in Birmingham. Due to a scheduling mix up the doctor we were supposed to see was on vacation and will not be back until the 10th. They still did Lindsey's labs and gave me the results, but we need to come back on the 14th to speak with the doctor. I have posted the counts below. Lindsey will begin 2nd grade on August 7th. I am hopeful that she will have another great year. The summer has gone so fast. It seems that it has only gotten started and all the things we wanted to do have slipped by. Still, we have this last weekend and then we have a trip to Gulf Shores planned for September. overall, Lindsey has had a pretty good summer and my being able to work from home was a huge blessing. It allowed us some extra time together and that is what it is all about. After the doctor's appointment today we went to the Disney Store for a new backpack and lunchbox, stopped by Libby Lu for some "girl stuff" and had cheese pizza for lunch.
I was not happy to see the counts drop from our last visit, but we have been told repeatedly to expect this trend. Still it is not easy. Lindsey has had a very helathy summer. Not even a cold, but I know that will change with school starting. Lindsey seems to have gained some height and weight since we started the growth horomone therapy, however, we will not see the endocronologist until November.
Normal (8/1/06)
WBC 5.0-14.5 (4.73)
RBC 3.9-5.3 (2.75)
PLT 140000-440000 (33000)
Hgb 11.5-13.5 (10.8)
ANC Above 1000 (614)
Thank you for checking on Lindsey and continuing to pray for her and all the others who need prayer.
Victoria - Lindsey's blessed mom
Friday, June 30, 2006
Well, Lindsey has been taking the growth hormone shots for just over 2 weeks now. Although she does not enjoy them, by any means, she is good about getting it done. I believe we have noticed an increase in her appetite, and we are trying to get lots of good foods into her. So far the summer has been going pretty good. We have been spending a lot of time in our small outdoor pool. It has been very hot here, with very little rain, so the pool offers some welcome relief. Lindsey had a friend come over to play last weekend, but other than that we have been sticking close to home and finding time to rest up. There is a state park near our house, so Lindsey, her dad, and I have been spending a fair amount of time there, also. I have been fortunate enough to be able to work at home some during the summer. This has worked out pretty well. It is great to be able to walk down to the basement in my pajamas and go to work. Lindsey has been very patient about my working at home and is, at times, a big help to me.
Needless to say, Lindsey recital went great. She had a ball during the performance and even during the many long rehearsals. I am hoping to get the pictures back soon. She has asked to take a break from cheernastics during the summer. So we do not have cheernastics or Girl Scouts this summer. Both activities will start up again when school starts in August.
It is hard to believe that July 1 is this Saturday. The summer has gone so quick. Lindsey and I are leaving on Wednesday for a quick trip to my hometown in Florida for my uncle’s wedding. We are both looking forward to the trip, although it will be a short one. Lindsey does not have any doctor appointments scheduled until August 1 when we go visit her hematologist. In November we will visit the endocrinologist, and I hope at that time we will have some idea as to how long Lindsey will need to be taking the growth hormone shots. We understand, however, that then length of time she may be getting these shots is also dependent upon her counts holding up.
Thank you for checking on Lindsey. Please remember all of the families currently facing transplant, families making difficult decisions about their children’s health care needs, and those families who have lost loved ones to FA.
Victoria – Lindsey’s grateful mom
Wednesday, June 7, 2006
Lindsey had a good 7th birthday last week (June 1). We spent the day at the Birmingham Zoo then had supper at her favorite Mexican restaurant. That evening she opened more presents. She received a lot of wonderful gifts including a microscope (which she has been wanting for a while), more Nancy Drew books, Clue game, and a necklace among other things. I still find it hard to believe that my baby is 7 years old. She is beginning to act more like a young lady every day.
This past weekend, Lindsey, her dad, and I went to the local state park (Tannehill) for a hike on Saturday. We wandered into the gem and mineral show going on during that time, and Lindsey was quite fascinated by the displays. We all enjoyed it so much we came back the next day to spend a little more time among the gems and minerals. We picked up a few gems and minerals and books for our little scientist. I suppose this will be added to the list of interests Lindsey has developed over the years. She has been picking up rocks since she was old enough to walk. I have several jars filled with treasures she has brought home to me over the years. When Lindsey was in pre-school she would empty her pockets of the rocks and pebbles she had picked up during recess and give them to me at the end of the day. If she was not wearing shorts or pants with pockets she would put the rocks or pebbles in her shoes to carry them home to me. She said that picking up the rocks and giving them to me was her way of showing she had been thinking about me during the day. She has always been a very thoughtful daughter.
This Saturday evening (June 10) is Lindsey's cheernastic recital (performance). The dance school she attends also has ballet, jazz, and tap classes, however the cheernastic program really seems to be growing. We will have rehearsals every night this week with a dress rehearsal late Friday afternoon and the main event on Saturday night. The girls wore their outfits for the first time last night, and they looked great. Lindsey is nervous and excited. After the recital Lindsey will take a break from classes and start back in August.
We are set to start Lindsey on the growth hormone therapy next Wednesday June 14. We will be trained on how to give her the injections. I am still a bit apprehensive, but we trust the doctors' guidance to look toward Lindsey?s future. Lindsey will have her counts checked again at the beginning of August. Until then we are simply enjoying the summer.
Thank you for checking in on Lindsey and remembering her in your prayers.
Victoria Lindsey's thankful mom
Wednesday, May 31, 2006
Tomorrow is Lindsey’s 7th birthday! – June 1, 2006! It seems hard to believe that this little angel has been my daughter for 7 years already. Everyday she is changing and growing; and every day I love her more and more.
I am taking the day off from work. I am not sure what we will do, but Lindsey has already declared that she will be the “boss of the day” tomorrow. That suits me just fine.
Thank you for checking in on Lindsey. I will post more information once we start the growth hormone therapy.
Victoria – Lindsey’s blessed mom
Monday, May 22, 2006
We have decided to move forward with the growth hormone therapy. We are waiting for the insurance issue to get ironed out, and should be starting the growth hormone therapy in a few weeks. This will consist of injections 6 days a week. We will meet with someone from the specialty pharmacy so they can show us how to give the injections. The nurse has said that the needle is very small and actually hidden by the “pen”. The doctor said we should see some results after 3 months of using the growth hormone. I am a little apprehensive about moving forward with this, but the transplant doctor in MN had a good point when he said we need to consider Lindsey’s quality of life post-transplant. He seems to feel we should get what benefit we can from the growth hormone now.
This past Saturday we had Lindsey’s birthday party. She will actually turn 7 years old on June 1, but we have always had her parties early so her school friends can be at the party before summer break. Lindsey’s troop also had their “end of year” Girl Scout party that same evening. She had a wonderful time at her party and all the kids seemed to have fun. I plan to have several of her friends over to the house during the summer for play dates, but also find time to just rest. I am fortunate, that I will be able to work from home a few days a month, and am really looking forward to this new arrangement. Lindsey is becoming quite the young lady and I have really noticed a difference in her the past few months, as far as, becoming more mature. She is such a great kid and has really been very brave over these last 2 years with all of the tests she has had to undergo and the many doctor visits. It is hard for me to believe that Lindsey will be 7 years old already on June 1. Time has really flown by since she came into my life. I wish I could find a way to make time slow down a bit, and have us not be so busy all the time.
There is not much new to report. We have an appointment with Lindsey’s hematologist in August. Other than that, we plan to enjoy the summer and take it easy. Lindsey will continue her cheernastic classes through the summer. Her recital is June 9.
Thank you for checking on Lindsey.
Victoria - Lindsey's thankful mom
Tuesday, May 9, 2006
Lindsey had her test for Growth Hormone Deficiency last week. It was a very long testing process and she had to get stuck several times before they were able to get a good IV in her. She did great throughout the whole test, but got pretty restless the last hour of the test. I did not blame her, though, since she had not eaten since supper the night before and had to lie on a table for about 4 hours with an IV in her hand. After we finished up at Children’s Hospital we went to get cheese pizza for lunch (her favorite). I received the test results already and they show that she is growth hormone deficient, which means if we choose to do so we can start Lindsey on growth hormone therapy. The only available therapy is injections of growth hormone. There are a lot of things to consider before making the final decision such as side effects and assumed benefits. Lindsey’s transplant doctor seems to feel we should begin a trial of growth hormone and see how it goes for a while. We will touch base with the local endocrinologist to make the final decision and decide which medication to use. I suppose I should have expected this test result since Lindsey is so much smaller than her classmates; still I was surprised by seeing it there in black and white.
I have posted Lindsey’s counts below. Her WBC dropped, but he ANC inched up a bit since March. We will have Lindsey’s counts checked again in August and plan to take Lindsey back to Minneapolis next spring for her annual bone marrow biopsy and to have Dr. Wagner look her over. At that time it will have been 2 years since our last visit with him.
(Normal) 5/3/06
WBC (5.0-14.5) 3.6
RBC (3.9-5.3) 3.09
PLT (140,000-440,000) 48,000
Hgb (11.5-13.5) 11.4
ANC (above 1000) 792
Lindsey will finish school on May 26. She is looking forward to the summer, of course. Last weekend was a busy weekend and this weekend is shaping up to be busy also. Lindsey has been really healthy lately and has lots of energy. It is good to see her so busy and so happy. Her smile lights up the room and she is filled with pure joy and a love of life.
We really appreciate all of the prayers being offered on Lindsey’s behalf.
Victoria – Lindsey’s thankful mom
Tuesday, May 2, 2006
Tomorrow Lindsey will be at Children's Hospital most of the day undergoing tests. She will have her CBC re-checked per Dr. Wagner's suggestion. After that she will undergo the test for growth hormone deficiency. This will be a very long testing process, and while it is administered by IV I am hoping that Lindsey will not experience any problems during or after the test. The nurse had told me that some kids will experience nausea during the test. I am praying that she will not have to deal with this and will simply be able to relax throughout this process. We are bringing a couple movies and a new Nancy Drew book to read.
I, of course, have no idea what the test will reveal. I am not sure what would even be the better outcome for Lindsey. Would it be better to show growth hormone deficiency as the reason for her small stature? If so, should we then pursue the growth hormone regimen? Would it even be worth it to add a few inches to her height? How will the growth hormone therapy drugs effect her FA? If there is no sign of growth hormone deficiency, then what?
Dr. Wagner has asked to review the results of the test before we make any decisions. I will post CBC and growth hormone results when I know what they are.
Thank you for checking on Lindsey. Please say a special prayer for her that everything goes smooth tomorrow. I plan to keep Lindsey at home with me on Thursday so she can rest up after what I am sure will be a very long day on Wednesday.
Victoria - Lindsey's grateful mom
Tuesday, April 4, 2006
Well, we were finally able to talk with Dr. Wagner late last week and he was able to set our minds at ease – a bit. He seemed concerned about Lindsey’s low ANC of 680, but said that the stomach virus she had been fighting the week before her biopsy could be to blame. We were advised to repeat Lindsey’s CBC at her Endo appointment in May. Bob and I have discussed taking Lindsey up to Minneapolis next March or April for her annual bone marrow biopsy. It will have been 2 years since Dr. Wagner had seen Lindsey and we would like for him to have a chance to really see her rather than simply reviewing numbers and counts on a piece of paper. Lindsey’s local hematologist is great and has been really good about communicating her results to Dr. Wagner. We are quite pleased with the care Lindsey has received at Children’s Hospital and are thankful that Dr. Watts had treated and referred a local boy to Dr. Wagner a few years ahead of meeting us. It was this experience that led him to ultimately test Lindsey for FA.
We did learn a little from our conversation with Dr. Wagner about what he sees as indicators for moving ahead with the transplant. We are still in “wait and see” mode. He did explain his take on Lindsey’s cellularity numbers and answered other questions we had.
Overall, Lindsey is doing well. She is looking forward to the end of school and the start of summer vacation. She is doing well in school and has developed a genuine love of reading. She still loves to have mom read to her, though. Lindsey is also really enjoying her new ant farm. Fascinating creatures.
We had bought a huge wooden playset for Lindsey a few weeks ago. It has a rock climbing wall, club house, monkey bars, swings, etc. We had to have someone come out to level a spot in our backyard. This thing has 97 steps to complete its construction. It has been a big project and we have only just completed step 29; but having finished the top flooring and seeing her face as she sat atop her “not-quite-finished” playset has made all of the headaches worthwhile. We hope to finish it sooner rather than later.
The yard sale to benefit the Fanconi Anemia Research Fund is set for April 22 at Lindsey’s school. I am still humbled and amazed at the support Lindsey has received from the wonderful staff, students, and other parents at the school.
Please continue to remember Lindsey in your prayers, as well as, all the other kids going through treatments, and the families who have lost loved ones.
Victoria – Lindsey’s proud mom
Friday, March 17, 2006
I have posted Lindsey’s counts from 3/10/06 below:
Type (Normal) 3/10/06
WBC (5-14.5) 4.91
RBC (3.9-5.3) 3.11
HGB (11.5-13.5) 11.6
Platelet (140,000-440,000) 46,000
Lindsey was rather sore after the biopsy on Monday 3/10/06 and rested most of the day. I also kept her home with me Tuesday so she could rest up. We read a lot of Nancy Drew during this time, and watched the new My Little Pony movie (several times). Lindsey also loves board games, which is good since mom does too.
Dr. Watts our local hematologist called yesterday with Lindsey’s bone marrow results, and needless to say the results were not what we expected. Lindsey’s blood counts dropped a bit since we visited Children’s in November and Dr. Watts expected that based on these results we would not see a big drop in cellularity from April 2005, which was 60 The cellularity count from the biopsy on 3/10/06 was much lower than expected, but Dr. Watts explained that results can be dependent upon where they took the sample and that even in healthy people the cellularity can vary between sample areas. I do not know what to think at this point. So, Dr. Watts has said he will contact Dr. Wagner in Minnesota to get his opinion on these results and how we should proceed. Dr. Watts has been great through this whole process, and we really trust him. So we wait again. I am hoping that they will be able to tell me something in the next couple of weeks. I hate waiting. Dr. Watts said that overall Lindsey seems so healthy, which is true. She does not get sick any more than other kids and is full of energy, and doing very well in school. She has made the all A honor roll again!
This weekend we are going to Tannehill Trade Days which is a local arts, crafts, farmers market type event held the 3rd weekend of every month. Also, Lindsey has some fun Scout events coming up.
Lindsey’s school will be holding it 2nd annual Yard Sale to benefit Lindsey. Last year the proceeds went to Lindsey’s medical fund. This year we have asked that all proceeds go to the Fanconi Anemia Research Fund. Lindsey’s school and especially her teacher, have been very supportive and kind to our family.
I will post more when I know more. Thank you for checking on Lindsey and please remember to pray for her that she will continue to have strong faith as we continue on this journey.
Victoria – Lindsey’s proud mom
Tuesday, March 7, 2006
This past Thursday night Lindsey starting throwing up. Apparently the stomach virus that is making its way through our area had caught up to her. She had been so healthy all winter, not even a cold. Lindsey was sick most of Friday morning also and could not keep anything in her stomach. By late Friday afternoon she was able to eat some saltines with success. She laid around all Friday and most of Saturday while I read to her (something I usually do) and let her watch tv (something I usually do not do), getting her strength back. By Sunday she was almost back to her old self, but still kind of blah. She is back at school and about 99% back to her old bouncy self.
This coming Monday (March 13) Lindsey will have her annual bone marrow biopsy at Children's Hospital. Please pray that we get very good results. I also want to ask for prayers that Lindsey will experience little or no discomfort. Although this procedure is nowhere near as invasive as the bone marrow harvest done in Minnesota last April, I still worry that she will be in pain. I plan to keep her home with me on Tuesday to rest up.
Thank you for checking on Lindsey. Overall, she is doing well and we are thankful for that.
Victoria - Lindsey's grateful mom
Wednesday, February 15, 2006
Thank you for checking in on Lindsey. There is not much to report. Lindsey remains healthy although the flu is making the rounds through our area. I am praying that the flu shots she received will keep her healthy. We have a school field trip scheduled for next week.
Lindsey is doing well in school. She had her class Valentine party yesterday and received a special gift from her special “valentine”. She actually blushed as he gave her the stuffed dog. It was so cute!
Tomorrow we are going to pick up the Girl Scout cookies Lindsey sold this year. Lindsey is a Brownie this year and this is her first year being allowed to sell cookies. She was very excited about getting to do this and sold lots of cookies on her own. Mom helped sell a few, too. Lindsey is still really enjoying her cheernastics class. She had taken dance classes when she was 3 but did not like them and wanted to quite. Then Lindsey took gymnastics when she was 5, but lost interest. With cheernastics she gets a little of both and really enjoys it. She cartwheels through the house and practices her round-offs until we have to ask her to please stop for worrying she will knock into something and hurt herself.
Next month we have Lindsey’s annual bone marrow biopsy and 3 month blood checkup. I will post the results once we have them.
We have decided that we definitely want to make it to Camp Sunshine this year in July. Lindsey was diagnosed July 29, 2004, and we were not able to make it that year due to dealing with the shock of the diagnosis. Last year, I did not feel ready, but this year I feel a real need to go.
That is about all from us. Lindsey still enjoys roller skating and is quite good at it. Several weeks ago she and a friend went skating at the local rink and she had a great time. It was cute to see her and her friend sitting in the snack bar area together drinking sodas and chatting together. Sometimes I catch glimpses of the young lady Lindsey is becoming, and it makes me smile to see how beautiful, kind, and funny she is. She has her very own personality and I love it!
Victoria – Lindsey’s blessed mom
Wednesday, January 4, 2006
I hope everyone has had a great Christmas and that the New Year has started off on a positive note.
Lindsey had a great Christmas, as did we all. The highlight of Lindsey’s Christmas was the pair of pink and white roller skates Santa left under the tree for her. This was the last gift she opened and as soon as she saw what they were her little hands began to shake with excitement. Of course, Lindsey received a lot of wonderful gifts, and it was nice to have the time off from work to play with all of her new toys and games. Lindsey really enjoys playing board games, which is a great thing we do together. Lindsey has been skating through the house since Christmas and her dad and I took her to a local roller rink on Monday afternoon. She did great! Now, Lindsey has decided she would like to have her 7th birthday party at the roller rink. Lindsey’s dad and I did okay on skates for having not been inside a roller rink in over 20 years, but Lindsey really outshined us. She had such a wonderful time.
Today is Lindsey’s first day back at school. She seemed reluctant about going back, but attended a classmate’s birthday party on Saturday and after seeing her friends she was ready to go back to school. It will take a while for her to get back into the whole school routine, so it is good that it is a short week.
I was so happy to have ample time to be home with Lindsey, and it was tough coming back to work. It is hard to believe that she is already half way through the school year. Time seems to be flying by and I wish I could some how slow it down.
Lindsey seems to be doing well health wise. She had an ear infection the day after Christmas, and is now finishing up a round of antibiotics. We are thankful that she is so healthy right now and pray that her counts will hold steady. Lindsey will have her annual bone marrow biopsy in March. At that point we will know a lot more.
Thank you to everyone who has prayed for our family and especially for Lindsey this past year. We appreciate it more than you can know.
Victoria – Lindsey’s grateful mom
Wednesday, December 14, 2005
Well, we are now on fast-forward until Christmas. This past weekend Lindsey attended a birthday party, appeared in a parade with her Scout troop and saw the Nutcracker ballet. Mom was tired, but Lindsey never slowed down. She had a cough over the weekend, but it seems to have cleared up for now. We had so much planned for the weekend and other than the cough she felt fine. I really did not want her to miss out on anything. She stayed out of school on Monday since her cough got worse Sunday night, but by Monday afternoon she seemed much better. Last night was the Christmas program at Lindsey’s school. It was a very nice program and she enjoyed herself. She told me later that she was not as nervous as she thought she would be, to be on stage with her class. We feel so blessed that she attends such a great school, where she feels so comfortable and cared for. Tonight is Cheernastics (which she loves!), tomorrow is her class Christmas party, and Monday is our church’s Christmas program. Lindsey’s Christmas Break starts on Monday and she will be out of school until January 4. I have managed to get 6 days off during this time. Lindsey will be with her dad or my parents on the days I have to work.
Lindsey is really looking forward to Christmas this year,, but mostly she is looking forward to being at home. She often tells me that home is her favorite place to be – mine, too. We have a beautiful tree this year. Each year Lindsey picks out a beautiful tree for us. She loves to decorate it and go through all of the old ornaments. We have a hodge-podge of ornaments, with many of them having stories surrounding them. We have picked up ornaments from different trips we have taken and it is nice to see them on the tree and remember when and where we picked them up.
Overall, I feel Lindsey is doing well. She is happy and full of energy. That in itself is an answered prayer. We will go back to see Dr. Watts in March for Lindsey’s blood work and biopsy. I try not to get too anxious during the time leading up to our 3 month check up, but it is difficult. I am thankful for every day I have with my girl. At times I think back to the day she was diagnosed with FA (July 29, 2004) and how hopeless and lost we felt. Now, a year and a half later we feel more hopeful due to advances in research and a better knowledge of FA. Also, our faith has been strengthened and we have been blessed by the kindness and concern of others for our daughter.
Thank you to everyone who has been checking up on Lindsey and remembering her in your prayers. We wish you all a very Merry Christmas and a happy and healthy New Year.
Victoria – Lindsey’s blessed mom
Tuesday, November 15, 2005
Last week, we took Lindsey for her 3 month check up with her hematologist at Children’s. I have posted the counts below. Lindsey’s hearing test turned out “normal” which is what I expected. They did detect the start of an ear infection so she has been on antibiotics. Overall, she is doing great and her hematologist, Dr. Watts, does not feel that Lindsey’s counts have dropped too dramatically over the past year. I, as Lindsey’s mom, am always disappointed to see them dropping at each visit, although we have been told to expect this downward trend. We are scheduled to visit Dr. Watts in March for another CBC and Lindsey’s annual bone marrow biopsy.
I am very thankful that Lindsey is doing so well right now. She is full of energy and is a very happy girl. When we got the diagnosis in July 2004 everything seemed so dark and grim and it really made me focus on the true importance of “time”. I feel truly blessed by each day I have with my girl. Somehow we have managed to live with FA, without letting it rule every aspect of our lives. It helps that Lindsey is so healthy right now. There are still days where I feel sad and somewhat helpless, however, the days in which I am just so happy to have Lindsey in my life are much more abundant.
I am hoping to work out a way to hold a fundraiser in the spring for the Fanconi Anemia Research Fund. I am meeting with a fundraising consultant on Friday.
Not much else is going on here. We are gearing up for the holidays, and Lindsey is staying busy with Scouts and cheernastics.
Thank you to everyone who stops by to check on Lindsey’s. It makes us feel not so alone to know that others are thinking about and praying for our daughter. Please be sure to sign the guestbook so we know you have visited Lindsey's site.
(Normal) 11/7/05
WBC (5.0-14.5) 4.69
RBC (3.9-5.3) 3.16
PLT (140000-440000) 45000
Hgb (11.5-13.5) 11.9
ANC (Above 1000) 2204
Victoria – Lindsey’s thankful mom
Thursday, October 27, 2005
First, I apologize for not updating about our Make-A-Wish trip sooner. Things have been very busy since we have been back. Between work, scouts, cheernastics, school and life in general we have been staying pretty busy.
The trip to Hawaii was fantastic. Lindsey picked the perfect wish for herself. She said she liked it better than Disney and is already talking about wanting to go back someday. The plane trip was very long from Alabama, but Lindsey did great. We arrived at the resort in Kona late at night and the next day was our “free” day. On our “free” day Lindsey had her dolphin swim which she loved. This activity and the luau were the two she was looking forward to the most. We spent the rest of the day by the pools. Lindsey loves water and being at the pool or beach. Hawaii is so beautiful and Lindsey was really in awe of the palm trees and their coconuts. We explored the beach near the resort. These are not beaches that we are used to seeing. This beach was covered in large black lava rocks. We explored the tide pools where we saw sea urchins and crabs. Lindsey has been collecting rocks since she was old enough to walk, so she added some lava rocks to her collection. The next day we went on the helicopter tour of the volcano. The ride lasted over an hour and a half. Lindsey was not scared at all. Mom was nervous, though. Lindsey enjoyed seeing the cows far below and the old lava flows. She has been interested in volcanoes for quite a while and this was one of the main reasons for her choosing Hawaii for her wish. The next day we did not have any activities scheduled so we spent the day at a beautiful beach – Hapuna Beach. The water was green blue and so clear. There were lava rocks (cliffs) at the edge of the water where Lindsey spotted barnacles and black crabs. Each morning we would stand on the balcony and look at the ocean and just enjoy the view. The next day we went on a submarine ride in Kailua Kona. Once again Lindsey was not scared of the boat ride or being in the submarine and going down to the ocean floor. This time, dad was nervous. We saw huge sea urchins and all kinds of beautiful fish and coral. Lindsey loved it. In the evening we went to a luau. We had a great seat and the weather was perfect. Lindsey was wearing her new Hawaiian style dress and looked beautiful. The food was very good and Lindsey tried different things. She loved the cinnamon bananas. The show was very interesting and Lindsey was mesmerized the whole time by the dancers. We bought a DVD of the luau so we could enjoy it at home, also. While we did alot during our trip, we made sure to have some time to just spend time in the water and enjoy the beauty of our surroundings. At the resort there was an ocean fed lagoon which had several different types of fish swimming in it. Lindsey was really fascinated by swimming with the ocean fish. We were also fortunate enough to get up close to a green sea turtle that swam in to the lagoon area. Lindsey reached out to touch the turtle's back and was so excited. As Lindsey said at different times during our trip "This is not something you see everyday". It was wonderful to have such unique experiences to remember. Lindsey slept most of the way home on the return flight. It took us all a few days to readjust to "our" time in Alabama.
Overall, the trip was amazing. We have a lifetime of memories to hold close and remember with each other. There are plenty of little moments from the trip that are especially dear to me. Lindsey is such a great kid and I am so glad her wish came true. She had a lot of wonderful stories to share with her classmates and we brought back some books for the class to keep. She was so excited leading up to the trip and was so happy to be there. She felt very special for having her wish come true. It was easy to simply focus on enjoying our time in Hawaii and enjoying seeing Lindsey so happy.
Last week we visited an endocrinologist at Children’s Hospital on the suggestion of Dr. Wagner. Her hand x-ray showed Lindsey’s bone age as 4 years old. The doctor was very nice and took the time to explain things to us. He is running a chromosome test for Turner’s Syndrome (although we feel that will be negative). We should get these results in about 2 months. At that time we will decide whether or not to move forward with the Growth Hormone Deficiency test. I hate to put Lindsey through this test, but we may need to do this. We are not looking for Lindsey to be tall. I am relatively short, as is her dad. Rather, we want her to be able to reach her full growth potential. It really comes down to a quality of life decision. In order to drive a care she without special equipment she would have to be a certain height. The doctor agrees and is not looking to necessarily make her tall, just help her be the size she was meant to be. I am a little leery about the growth hormone therapy as I am not sure if there have been any studies on how it effects FA kids. I know there are several kids on this therapy, and they are doing well. We will know more in the next 2 months. We have a hearing test scheduled for Lindsey on November 7, as well as the usual 3 months blood work. Lindsey’s hearing is fine, this is just a precaution.
Lindsey is very excited about Halloween. She is going as Wonder Woman. I have the show on DVD and she is very much into Wonder Woman. She is wearing her costume to school tomorrow and then we have other Halloween activities planned. Actually she wears the costume around the house, too.
Overall, Lindsey is doing well and staying busy. The trip to Hawaii was so great and I know she will remember it forever. We are very grateful to the Alabama chapter of Make A Wish and the wonderful volunteers who helped make Lindsey's wish come true. As a parent, it was a very humbling experience to have people want Lindsey's ultimate wish to come true and work so hard to make it happen. This is a wonderful organization full of very caring people.
Please continue to pray for all FA kids and their parents.
Victoria – Lindsey’s proud mom
Monday, September 26, 2005
We returned from Lindsey’s Make-A-Wish trip on Thursday morning. Lindsey went to school on Friday with lots of wonderful stories to share with her classmates. The folks at the Alabama chapter of Make-A-Wish did a wonderful job making sure that this trip was Lindsey’s wish come true. We are very thankful to them for this wonderful gift they gave Lindsey.
Needless to say we had a wonderful time and will cherish these memories forever. I believe that this trip was even better than Lindsey had anticipated. We were able to do and see a lot, but also had time to just relax and enjoy being in Hawaii. I will update in detail later, but I wanted to post these pictures which show just how happy this trip made Lindsey. The trip from Alabama to Hawaii and back home was very long, but Lindsey traveled very well – as usual.
Thank you for checking in on Lindsey.
Victoria _ Lindsey’s grateful mom
Tuesday, September 13, 2005
We are leaving Friday for Lindsey’s Make-A-Wish trip to Hawaii. It will be a long flight from Alabama, but we are all looking forward to this trip. Lindsey is so excited and has been talking about it more and more as time gets closer. This is such a wonderful organization and really helps make these kids feel special. It is good to have something like this to look forward to. We will be staying on the big island of Hawaii. The resort looks beautiful and Lindsey is very excited about the dolphin swim, helicopter tour of the volcano and the luau. I am looking forward to watching her enjoy having her wishes come true.
This is a busy week for us with work, school, Girl Scout meeting (Lindsey will be a Brownie this year), and cheernastics (which Lindsey just started last week) – plus finding time to finish packing.
I will update when we return. Thank you for checking on Lindsey.
Victoria – Lindsey’s proud mom
Thursday, August 25, 2005
Well, Lindsey is now 2 weeks into her first grade school year. She seems to be falling back into her old schedule pretty well although there are mornings when she complains about having to wake up so early. I completely understand, though. Next week Lindsey will be involved in a week-long cheerleading clinic and perform next Friday night with the kids in this class. She participated in this last year and loved it. She would like to be a cheerleader when she gets older. She definitely has school spirit. Next Tuesday Lindsey will start attending her scout meetings. She will be a Brownie scout this year and is very excited about seeing her old friends and finding out what activities they will be doing this year. We went to get Lindsey’s Brownie vest at the Girl Scout store and she just had to have the matching beanie. She wore it home and all that night. Very cute. I will try to post pictures.
I am hoping for a quiet weekend. The weekends seem to go by so fast and they seem to go by even quicker when we are busy.
We have a couple appointments set up for October and November. We will be seeing an endocrinologist in October and then Lindsey’s hematologist in November combined with a hearing test. Lindsey’s hearing and vision are great. These are simply precautionary appointments.
I still do not have any details regarding Lindsey’s Make A Wish trip to Hawaii. I know the dates (September 16-21) but nothing more. She is very excited about the trip and I know it will be wonderful for her.
Thank you for checking on Lindsey.
Victoria – Lindsey’s proud mom
Friday, August 12, 2005
The bone marrow registration drive was held downtown on Wednesday. We had a pretty good turnout. The recruiter and phlebotomist who came from Atlanta were wonderful. They were very patient and informative. They played a very big part in this drive being successful and making sure folks were comfortable with the process. I truly appreciate all of the people who came out to learn more about becoming a bone marrow donor and to have themselves put on the national registry. I believe the folks who came out on Wednesday were truly committed to this cause and felt that this was the right decision for them to make. I have to respect folks who do not wish to join the registry. Some people are scared of the donor process or simply not comfortable with making such a huge commitment. Perhaps these people could at least spread the word about the need for committed donors.
I met some wonderful people Wednesday. People who had gone through the transplant process, those who have been effected by having a loved one with a terminal illness, and people that simply wanted to join the registry in hopes of helping someone in need. The people who work for the company and organized this event were great and should be commended for going out on a limb and putting this first-time drive together and making it a success. People within the company, who work in other regions of the state, have expressed an interest in holding similar drives at their locations. We will have to wait and see what happens.
Lindsey is doing well with her first week of first grade. It is surprising how the kids have fallen back into their usual school routine. It probably helps that they have the same teacher as last year, and most of the same classmates. Lindsey did not even have the sniffles all summer, however, yesterday she had a very stuffy nose and said her stomach hurt. There are a couple of other kids in Lindsey’s class that seem to be under the weather. Needless to say she will not be going to school today. She will spend the day with her grandparents.
That is about all for now. Lindsey is looking forward to her Make-A-Wish trip next month. I wish now that we had made plan to attend Camp Sunshine this year, but I do not think we were quite ready. Next year we plan to definitely make the trip to Maine.
Thank you for checking on Lindsey. Please remember in your prayers all the kids going through various treatments. Please also, remember their parents.
Victoria – Lindsey’s mom
Wednesday, August 3, 2005
Lindsey had her doctor’s appointment on Monday. I have listed her counts below. We were at the hospital a very long time since we had to wait for the results before speaking with the doctor. Lindsey was quite patient during the 3 hours we spent there.
As of 8/1/05 (Normal)
WBC 5.22 (5.0-14.5)
RBC 3.16 (3.90-5.30)
HGB 12.0 (11.5-13.5)
HCT 31.8 (34.0-40.0)
Platelets 57,000 (140,000-440,000)
Her weight was up and she grew a bit in height. During our next visit to have Lindsey’s counts checked we are going to meet with an endocrinologist based on Dr. Wagner’s recommendation. Overall, Lindsey is doing well. I was disappointed that her platelets had dropped; however, we did receive some good news. At some point in Lindsey’s medical history she was diagnosed with renal tubular acidosis. We became aware of this only during our visit to Minnesota. Lindsey’s local hematologist re-checked her for this and found no evidence of this condition. He said that for as long as he has been treating Lindsey he has not seen evidence of renal tubular acidosis. This is good news, indeed.
Lindsey starts first grade on Monday. She is saying that she does not want to go back, but I believe once she sees her friends she will be happy to be back. We have an open house at the school this Sunday afternoon.
The bone marrow registration drive at my work is one week from today. I am hoping we have a good turnout. I understand that it is a huge commitment for people to make, and I want those people who join the registry to be comfortable with their decision.
Not much else is new here. We just take it one day at a time. Thank you for checking on Lindsey and for remembering her in your prayers.
Thursday, July 14, 2005
Quick update. The company I work for (Alabama Power) is sponsoring a bone marrow registration drive for employees only, on August 10 at corporate headquarters in downtown Birmingham. I am not sure of the time, but am guessing it will be an all day event. The goal is to get at least 100 people registered. It is a huge commitment to decide to be put on the bone marrow registry. There are over 4 million people on the registry right now, and not one of them is a match for Lindsey. This drive is not solely about finding a match for Lindsey, but it about getting more folks on the registry to help anyone who is still looking for a match.
The assistant editor of the company newsletter came and spoke with me yesterday in order to write an article about Lindsey to send out before August 10 to generate more interest in the drive and hopefully get a good turnout. She was very kind and I am confident that the article will reflect not only information about Lindsey’s condition, but also what a great kid she is. I truly appreciate all of the time and effort various people have put in to make this drive happen.
There will also be a blood drive at the same location on August 11.
Victoria - Lindsey's mommy
Thursday, July 7, 2005
Sorry for the lack of updates. Not a whole lot is going on right now, which is good. It is hard to believe that Lindsey will be back in school in about a month. The summer has gone by very quickly. Lindsey will be starting the first grade in August and we have received the wonderful news that her Kindergarten teacher from last year will end up being her first grade teacher this year. As a matter of fact, Lindsey’s teacher will have all of her kids from last year in her first grade class. Lindsey’s teacher is a very good teacher and a very caring person. She truly was a blessing to us last year.
Bob, Lindsey, and I are planning to go to another rodeo this weekend. Lindsey is really “into” rodeos lately. I am off from work tomorrow so Lindsey and I will spend the day swimming, if the weather cooperates.
I had a meeting today with some of the folks in the company’s PR department. It was not easy to talk about Lindsey’s condition, but I was glad to be able to have the opportunity to get the word out about FA and the FA Research Fund. The company I work for has agreed to sponsor a bone marrow drive to take place on August 10. There will be a blood drive the next day. I have been working on this since February and am glad to see it finally come to fruition. My supervisor was a big help in making this happen.
We still do not have any details regarding our Make A Wish trip to Hawaii, however, Lindsey is quite excited about it. She talks about thing she wants to see and do while we are there. I have tried to show her on the map just how far we will have to travel, but it is hard to appreciate the true distance when you are looking at a globe the size of a basketball.
Lindsey’s 6 year old check up on June 20 went well. It was fairly routine. The doctor did not order blood work since we are having Lindsey’s counts checked every 3 months. Our next visit to the hematologist is August 1. Lindsey has been very healthy this summer, with not even a cold cropping up. She is still a high energy child, which I am thankful for although she does wear me out at times. Lindsey’s pediatrician made the comment that you would not know that there was anything wrong with Lindsey just by looking at her. This is true, except for her small size, however I am not tall at all myself nor is Bob.
July 29 will be the one year anniversary (if you can call it that) of Lindsey’s diagnosis of FA. It has been an emotional rollercoaster to say the least. All we can do as parents is educate ourselves about our child’s condition, take one day at a time, and cherish each and every day we have with our kids. There are moments I want to hold on forever and times when I get so sad just watching her play, or sleep. Lindsey is so special and so innocent about what is going on inside of her. I try not to fall into the “it’s not fair” routine and focus on the positive I see around me.
I will update with Lindsey’s counts after August 1. Thank you for checking on Lindsey and please remember all the kids who are seeking or taking treatments – and their parents.
Victoria – Lindsey’s thankful mom
Tuesday, June 14, 2005
First, I apologize for not updating sooner. We arrived home from Disney World last Monday. We flew to Orlando on Lindsey’s 6th birthday (June 1) and Lindsey, her dad, and I spent 6 days at one of the Disney resorts. We had good weather although it rained off and on the whole time. At least it kept it from being too hot, and the rain never really lasted too long. As soon as we got to the resort Lindsey saw the pools and wanted to go swimming. I had heard about kids going to Disney and focusing on only wanting to go swimming. It was funny, in a way. Anyway, we headed straight to the Magic Kingdom and once Lindsey saw the gates, and especially Cinderella’s Castle she was very excited to be there. The first ride her dad and I took her on was Snow White’s Scary Adventures. Well, I did not think it would be so bad, but Lindsey was terrified of the witch and certainly did not want to ride it again for the rest of our time at Disney. Oddly enough, she did well with the Haunted Mansion and Pirates of the Caribbean and we rode those several times at Lindsey’s request. I would have to say that Lindsey’s favorite ride was at Animal Kingdom. She loved the Kali River Rapids ride. Although Lindsey is 6 years old, we rented a stroller during our time at Disney. This was a big helps since we did a lot of walking. Lindsey was pretty patient about having to wait in line for the rides. Were lucky in that there were only 2 rides where we had to wait a long time. Lindsey really enjoyed Epcot for The Living Seas. She loves to visit aquariums and really likes to see the dolphins. She was also excited about seeing the manatees.
Our first morning at Disney we went to Epcot for the Princess Breakfast. Lindsey was too excited to eat. It was so wonderful to see her meet the Princesses. One of the first things we did when we got to the Magic Kingdom the first day was buy an autograph book. Lindsey was very serious about getting characters’ autographs. I have tons of pictures that need to be developed from our trip. I am so glad that we took this trip. I will never forget the looks on Lindsey’s face when she saw Cinderella’s castle for the first time, or when she saw the Princesses at the breakfast, or when she was watching the fireworks and parade at the Magic Kingdom. Little moments to treasure forever. By the way, Lindsey did get to swim a lot during our stay in Orlando. Mostly, she swam at night, which she really enjoyed. It was hard to leave Disney and come back to the real world. Lindsey has said that she wants to go back to Disney World for her 7th birthday.
On June 20, Lindsey will go to her regular pediatrician for her 6 year old checkup. I expect this will be fairly routine. She also has an appointment for her dental check up. We do not go back to the hematologist until August 1. Right now I am just trying to enjoy the summer and spend as much time with Lindsey as I can. Lindsey, her dad, and I plan to go to a rodeo this weekend. Lindsey loves rodeos and plans to wear her pink cowgirl hat, pink cowgirl boots, and leather belt with pictures of horses and her name on it.
Lindsey is getting really excited about her Make A Wish trip. She is talking about it more and more. It will be a long plane trip from Alabama to Hawaii, but we are blessed that Lindsey is a very agreeable traveler.
Thank you for checking on Lindsey.
Victoria – Lindsey’s proud mom
Wednesday, May 25, 2005
We had Lindsey’s 6th birthday party Sunday May 22 in the afternoon at Build-A-Bear. Including Lindsey there were 15 kids at her party. Her dad held the “birthday tables” in the food court. I believe that all the kids had a good time at Lindsey’s party. I know she did. I was so intent on watching Lindsey enjoy herself that I forgot to videotape some of her party and probably missed some great photo shots. These are moments that I will have to file away in my memory. I was so happy to see that so many kids, and especially their parents, took time out of their Sunday to celebrate Lindsey’s 6th birthday. It meant a lot to me, and I know Lindsey was glad to see so many of her friends. I pray we will be able to celebrate many, many, many more birthdays with Lindsey.
It is hard for me to fathom that Lindsey is almost 6 years old. I know it sounds silly when people say “it seems just like yesterday” – but it really does. I can remember giving Lindsey baths in her little fold-up tub; now she is able to wash and rinse her own hair. I can remember holding her in my arms for hours while she slept; now she refuses to take naps. I can remember feeding Lindsey as she sat in her highchair; now she helps me in the kitchen. I can remember her toddling along as she learned how to walk; now she runs around like crazy wherever she goes. I can still remember that special “baby” smell; now she is a little girl. I catch glimpses of how she will look as a young woman.
Monday was Lindsey’s first day of summer vacation. I work a schedule that allows me to be off every other Friday. This will be great for the summer. I plan to take Lindsey to the zoo this Friday. She loves to see the animals and play in the fountains. The weather should be nice – and hot.
This weekend Lindsey and I have a scout campout to attend. Lindsey is a Daisy scout, and will be moving up to a Brownie during a ceremony at the campout this weekend. There are 3 or 4 other girls that will be moving up to Brownie. I plan to take lots of pictures to share with her dad since this is a “girls only” campout.
Lindsey’s 6th birthday is actually on June 1st, but we will be traveling to Disney World on that day. Next Monday and Tuesday will be busy as we are finally getting packed for our Disney World trip.
Thank you for checking on Lindsey.
Victoria - Lindsey's proud mom
Wednesday, May 18, 2005
Lindsey graduated Kindergarten on Friday May 13. I was (am) so proud of her. She has had a wonderful year in school and has learned so much. I give full credit to her very special teacher who has been a blessing to our family in many ways. Lindsey looked adorable in her cap and gown. I will try to post pictures.
Her dad and I took Lindsey to the Rocket Center in Huntsville after her graduation ceremony ended. She seemed to enjoy the IMAX movie about the Space Station and the museum as well as the rocket park outside. She has been interested in space for quite a while now. Her Poppy (my dad) had worked at Kennedy Space Center for about 28 years. He retired nearly 10 years ago and now he and my mom live close to us. By the end of the day she was getting kind of tired so we picked up pizza (Lindsey’s favorite food) and went back to the hotel. She was not herself that night and was rather sluggish on the ride back home. We got back home early afternoon on Saturday and she immediately changed into her Tinkerbell nightgown and wanted to lie in the bed. She felt warm so I took her temperature which turned out to be 102.5. No wonder she was feeling so blah. So we lay in the bed and watched movies Saturday and most of Sunday. She actually took a nap on Sunday, which is out of character for her. By Sunday afternoon her fever was gone and she was back to her old self.
Lindsey’s last day of school is this Friday, and then it is summer vacation time for her. We are having Lindsey’s 6th birthday party this Sunday since the weekend of the 28th she and I will be at a Girl Scout camp out. We leave on her real birthday (June 1) for Disney. We should be back late on June 7th. I cannot wait to see her enjoying herself at Disney! She is already planning which rides she wants to go on and which characters she wants to see the most. We are going to the Princess Breakfast on June 2.
We received great news from the local Make A Wish folks. They have approved Lindsey’s wish to go to Hawaii. Before the volunteers came to our house I asked her to be thinking about where she would want to go and what she would like to see. She cam up with Hawaii on her own. When I asked her why Hawaii, she said that she wants to see a volcano, see hula dancers, swim with dolphins and play on the beach. She obviously put a lot of thought into this wish. We have read books set in Hawaii such as Nancy Drew mysteries, and we have looked at science books showing volcanoes, and of course Lindsey loves Lilo and Stitch. We are planning to go in September, but will have to wait a while until our plans are confirmed. Lindsey is thrilled about getting her wish granted!
Not much else to report from here. Lindsey will have her counts checked in August, but seems to be feeling great right now. She is definitely ready for summer vacation although I have told her that we will continue to work on some of her lessons over the summer. She seems okay with being “home schooled” as she says.
Please remember to pray for all kids taking or seeking treatments, and their parents.
Victoria – Lindsey’s very proud mom
Friday, April 22, 2005 5:06 AM CDT
Well, we got home from our trip to Minneapolis late Saturday night – exhausted but thankful for the bit of good news we received from the doctor. Lindsey’s dad and I met with the doctor on Thursday, where he shared a lot of information with us concerning FA, the recent advances made in transplant protocol, and what he envisions on the horizon.
Basically, he told us that Lindsey’s counts seem to be holding steady over the last year. There have been ups and downs, which are to be expected, but no major drops. We understand that each FA case is unique and that no one can really predict when we will need to go to transplant. The doctor, however, gave us some good news in that we have a year (probably more) before we have to consider a transplant. He did not want to project any further than that. We are happy with this news. It is an answered prayer. We prayed for more time which will allow for further research and improvement in transplant protocols. The doctor also discussed with us a gene therapy program he is exploring. We are happy and thankful that God heard all of the prayers being sent up on Lindsey’s behalf. Time is a precious gift, and we have been blessed with it.
On Friday, Lindsey had her bone marrow harvest procedure done which required us to be at the hospital at 5:45am. She was in a lot of pain while in recovery, but seemed to be feeling a good bit better by the time she was moved to a hospital room. She asked for cheese pizza (her favorite) for lunch. It is a good thing that the hospital cafeteria had pizza. She was released that night and while she was still a little sore, she was back to her old self again. Lindsey is the bravest and strongest person I know. It is an honor to be her mother.
We were able to take some time to enjoy Minneapolis on our first day (Wednesday). We took the train to the Mall of America and visited the aquarium. Lindsey loved it! We actually visited it twice that day. She touched a manta ray, but was not too keen about touching one of the sharks. Lindsey also enjoyed the rides in the middle of the mall, with the Red Baron plane ride being her favorite. The next day we had our visit with the doctor, yet we were able to visit the Minnesota Zoo that afternoon. Lindsey’s new favorite animal is the lemur. Her previous favorite for the last couple of year has been the giraffe. Actually, she likes all animals. It was important to mix some fun into the visit to Minneapolis so we could have some good memories about the trip and not have it all be about doctors and hospitals for her.
This was also her first time on a plane. She did great. We had to change planes in Detroit for both legs of the trip. We had people actually comment on how well behaved she was on the plane. Lindsey really is such a good kid. Such a happy kid. She is looking forward to our next plane ride to Disney in June. We will be leaving on her 6th birthday, June 1.
Lindsey went back to school on Tuesday. She was a little nervous since she had been out so much this month either with the croup, earache, colds, and then the trip to MN. Her teacher told me she did good though. I explained to Lindsey that it may take a while to get back in the swing of things after being away for some time. Her classmates seemed happy to have her back.
I received more good news Wednesday from Minneapolis. Preliminary test results show that Lindsey’s marrow is producing all three blood types. Her cellular count is at 60%. Also, there was no evidence of pre-leukemia cells. Another blessing. We will get more results next week.
Thank you for checking in on Lindsey. Thank you for all of your prayers. Please continue to remember Lindsey in your prayers. Please pray for all of the kids who are seeking treatments, and for their families.
Victoria – Lindsey’s thankful mom
Tuesday, April 12, 2005
We leave tomorrow for Minneapolis to meet with Dr. Wagner. I am anxious about this visit. I am praying for encouraging news, but trying to be prepared for anything - as best I can. There are so many people praying for Lindsey, and as a mom I am so thankful.
Lindsey is starting to get excited about her first plane trip and our visit to the Mall of America's aquarium. She does not understand the importance of this visit, and what we hope to learn. She knows we are going to visit a doctor in Minneapolis that wants to help her with Fanconi Anemia. At 5 years old, I think that is all she needs to know for now.
I will post an update once we get back home.
Victoria - mom to wonderful Lindsey
Thursday, April 7, 2005
Well, we will be leaving for Minneapolis in less than a week. I am anxious about meeting with Dr. Wagner. While I really do want answers concerning Lindsey’s condition and prognosis, I am trying to prepare myself that the answers I receive may not be the ones I want. Still, we remain hopeful and prayerful.
This past weekend Lindsey's school held a yard sale to benefit her medical fund. It was a great success and we are so grateful to all the folks who took time out of their weekend to help Lindsey. This is a very humbling experience and at times “thank you” does not seem to convey what we feel toward the people who are trying to help our daughter. Last week the lunchroom staff had a special lunch with all of the proceeds going to Lindsey’s fund. More than the funds we are receiving from these wonderful people, it is their support and prayers that mean so much. Lindsey’s teacher has been especially supportive and kind during this time. She and the rest of the folks at the school, make Lindsey feel special, without making her feel different. I hope that makes sense. As a mom, it really touches my heart how these people have taken such a heartfelt interest in Lindsey.
This past week Lindsey has been under the weather. She has a bad cough and developed these large red patches and spot all over her body. The doctor said she has croup, and that the red patches are hives. Apparently she is having some kind of an allergic reaction to the virus that is causing the cold/croup that she has. Actually, she seems to feel okay, aside from the coughing fits, and her hives have disappeared. She is playing as usual and is as happy as can be. We have kept her out of school this week, but hope she can return next Monday.
This coming Sunday, Lindsey will be brought in front of our church congregation and prayed over by the elders and members. I feel very good about this. Lindsey is somewhat shy, but I believe she will be okay in front of everyone.
This past Sunday we had some wonderful people from Make-A-Wish come to visit us and meet Lindsey. I believe she really won them over. She has a way of making people immediately fall in love with her. She is so special and sweet. She is a child that people cannot easily forget. Lindsey chose her wish. It was not what we expected. Out of the blue she said last week that she wanted to go to Hawaii, see a volcano, see hula girls and swim with dolphins. I am supposed to contact them once we get back from Minneapolis and know a little more about when we will need to move forward with Lindsey’s treatment.
Not much else to report. I will post again once we get back from Minneapolis.
Thank you to everyone who continues to check in on and pray for Lindsey.
Victoria – Lindsey’s mom
Friday, March 11, 2005
Lindsey went to see her hematologist yesterday to have her counts checked. Here they are as of March 10, 2005. Lindsey goes every 3 months to have her counts checked.
3/10/2005 (Normal Range)
WBC 5.64 (5.0-14.5)
RBC 3.38 (3.9-5.3)
HGB 12.6 (11.5-13.5)
Platelet 60,000 (140,000-440,000)
ANC 1653 (above 1,000)
Lindsey’s doctor feels that based on these counts, and the ones they have been tracking since July, she is basically holding steady. With each visit some of the counts go up and others go down, but he feels that these movements are minimal. This makes us feel somewhat hopeful that we may not have to rush into anything right away in regard to pursuing actual treatment for FA. We do realize, however, that her counts could change dramatically in a short amount of time. This is all so unpredictable, and it is hard to not really know what is going on inside Lindsey – until it is time for her next blood check.
Lindsey also had a visit with her dentist to have sealant applied to her molars. She did great all day, and was very brave. She does not like having her blood drawn, but does not fight it. As far as the dentist, Lindsey loves going to see her dentist. They are very patient and kind with the kids. This sets up a good feeling for the kids about going to the dentist, which will hopefully last a lifetime.
Not much else to report. I have finally finished all of the details for the MN trip in April. I feel a bit anxious about it, but hope that we will have some of our questions answered.
Thank you to everyone who continues to pray for Lindsey, and check in on her progress.
Victoria - Lindsey's mom
Sunday, February 27, 2005 5:54 PM CST
Well, there is not much news to report. We still have not heard back from the doctor regarding the PGD, but did not really expect to so soon. I am hoping to hear something, one way or the other, before out trip to Minneapolis in April. We are also planning a trip to Disney World in June. We plan to leave on Lindsey's 6th birthday - June 1. This will be her first visit to Disney World so we want to make it special for her.
The local paper ran an article about Lindsey in the real estate section, due to Bob being a part-time real estate agent. The article turned out very well.
I am beginning to realize that we need to focus more on finding Lindsey a matching donor for her transplant. When I spoke to the National Marrow Foundation 2 months ago the said they had 1 donor that looked "good" at a high level, but they were going to do more detailed testing. I understand that sometimes a donor may become unavailable due to different circumstances such as a change in their health, their situation, or they simply choose not to go through with the process of donation. I would love for Lindsey to have a 'back up' donor, but I know that I should be happy with what we have since there are people who run out of time before they can find a suitable donor for transplant.
I am still trying to stay positive, but this last week was very difficult. Lindsey has qualified with the Make a Wish organization and they are going to set us up with a volunteer team to come and talk with Lindsey. While I am glad that she has this opportunity, I never dreamed I would have a child that would qualify for Make a Wish. While the people I have spoken to there have been great, it is just another piece of reality confirming that my daughter is seriously ill. Last week was difficult in that I am trying to pull together our trip to Minneapolis, our trip to Disney, our upcoming doctor's appointment in March - all while trying to be productive at my job and being a positive mom to Lindsey. I am very careful to not let her see me sad. She knows she has Fanconi Anemia, but does not know how serious it is. At 5 years old, I feel that she does not need to know. I want her to be happy and have a normal life for as long as possible.
Tomorrow it is back to work and school. I find myself looking forward to the weekends more than ever now. Yet work has been good for me in that it is someplace where I can concentrate on something other than FA. There are times when I cannot escape FA, even at work.
On a brighter note, Lindsey is doing great at school. Her reading and math skills are improving greatly and I am so proud of her. It is hard to believe that her kindegarten year is almost behind us. I am so happy that she is in such a supportive school environment.
Victoria - Lindsey's very proud mommy
Thursday, February 17, 2005 5:31 AM CST
Well, we spoke to the doctor in Detroit last Thursday. We did not exactly get the news we were hoping and praying for. He had indicated in a previous e-mail that they were pretty sure they had been able to work through my and Bob’s HLA types in order to create a PGD test for us. During the course of the phone call we discovered that the lab had thought they were successful, but then realized they did not have it exactly right in order to create the test to rule out FA AND allow us to have a child that would be a HLA match for Lindsey. Where it stands right now, is that the doctor and his lab will be able to rule out FA in the embryos, and while they have increased the odds of finding one that would be a match for Lindsey, they odds are not where we, or the doctor would like them to be. We are very grateful that the doctor wants to continue working on our case. He seems as determined as we are to unlock this HLA riddle. We are encouraged that this doctor does not want to give up on us. It is comforting to know that there are folks out there that are trying to help Lindsey. We feel, however, in light of this recent news that we must concentrate more on finding a matching unrelated donor for Lindsey. I am hoping to persuade the company I work for to sponsor a bone marrow registration drive in the near future, combined with a fundraising effort for The Fanconi Anemia Research Fund. I have not heard back on my proposal yet, but will not give up on this effort.
We will be visiting Dr. Wagner in April and are hoping to find out at that time when we will have to move forward with Lindsey’s transplant. The doctor in Detroit expressed a lot of confidence in Dr. Wagner, as they have worked together before. Both of these doctors have been great so far. We honestly feel that we are providing Lindsey with the best care possible.
Lindsey has really been enjoying school and was very happy to receive a special gift from her “valentine” at school. She is still enjoying Little Girl Dog, who is a very patient dog. Lindsey is looking forward to joining her Girl Scout troop for a cookie sale at a local store this weekend. We have started planning a trip to Disney in June, and she is looking forward to that, also.
A big thank you to everyone who has prayed, and continues to pray for Lindsey.
Victoria – Lindsey’s proud Mommy
Tuesday, February 8, 2005 5:19 AM CST
Well, I finally have some news to report. First, we have a conference call set up this Thursday to speak with the doctor in Detroit regarding the PGD procedure. At that time, we hope to know if this is really a viable option for us. This doctor and his lab have worked awfully hard trying to map our genes and create a test for us that would allow us to have a healthy child that would also be a match for Lindsey. I am hopeful, yet realize that even if they were able to successfully create such a test, there is no guarantee that all of this would come to fruition. I have realized these past months that, like so many things, it is not my will, but His that will be done. It is comforting to know that Lindsey’s life is in God’s hands.
For the past long while Lindsey has wanted a pet. She has fish, but has wanted either a kitten or a puppy for a long time. Well, this Saturday we found the perfect puppy for Lindsey. We had been wanting a small dog, and happened to find a dachshund/terrier mix at the humane society. She is 8 weeks old and Lindsey has named her Little Girl Dog. She is a sweet puppy and Lindsey loves her. It is cute to see the puppy follow Lindsey around or simply lay in her lap. So far, Little Girl Dog has done pretty good with potty training and has turned out to be a lazy little lap dog – which is great. Lindsey is doing well and I believe having this puppy will be good for her.
I am amazed at the outpouring of support we receive from folks concerning Lindsey. She is such a sweet and good-hearted little girl that everyone who meets her is immediately taken with her. She is special and I believe people sense that in her. I had a humbling experience last Friday in which the coach of her school’s football team came to me with a donation taken up by the players and told me how they were praying for Lindsey. I am so happy that we chose to send Lindsey to a small school in which prayer is not only allowed, but encouraged. This coach and his players really touched my heart. It is hard to know what to say at times like this. Sometimes I do not know that “thank you” is enough.
I will post the results of our conversation on Thursday, and pictures of Lindsey and Little Girl Dog.
Please remember all of the families who are facing difficult times right now. Pray for all the children and adults seeking treatment for FA and other conditions.
Victoria – Lindsey’s mom
Wednesday, February 2, 2005 5:38 AM CST
Well, there is not much to report. I am still waiting to hear from the doctor in Detroit about whether or not he will be able to help us in regard to the PGD procedure. By e-mail, he had indicated that he would know something by 1/26/05, but I got in touch with his assistant and she said there is still nothing to report. I am getting so frustrated with waiting and waiting for information, results, and answers. It is especially difficult when you are told that by a certain date, someone will have answers for you only to find out that is not the case - instead you have to wait and wait some more. I understand that these doctors are busy. Really, I do. Sometimes it is so hard to be patient while waiting for news or information concerning Lindsey. It is difficult dealing with doctors that are so far away from us. I know I need to be more patient, but it is hard to do sometimes.
Lindsey is doing well. Alot of kids (and adults) at her school are sick with different variations of the flu, but so far she has stayed healthy. Lindsey goes to a small private school, which has been a great blessing as we are dealing with FA. Lindsey's teacher has been great, as have other folks at her school.
Lindsey goes to have her counts checked on March 10. I can tell by looking at her that she has grown taller and put on weight. I am curious to see the "official" numbers, though.
Friday, January 21, 2005 5:45 AM CST
I apologize for not updating as regularly as I would like. Things have been busy since the New Year with work and school. Lindsey is really enjoying school and scouts. I am amazed at how much she has learned this school year, and attribute a lot of Lindsey’s eagerness to learn to the wonderful teacher she has been blessed with to have this year.
I received a bit of good news yesterday from the doctor in Detroit who has been trying to create a PGD test for us. Thanks to his hard work and that of Dr. Wagner, he is now “cautiously optimistic” that he may be able to assemble this information into a single-cell PGD test for our family.
Apparently my and Bob’s HLA typing is very similar and has caused a lot of problems in determining how the genes were given to Lindsey. I am hoping to know something more definitive late next week in regard to whether or not the PGD process is truly an option for us. Regardless of whether or not the test can be developed, we are so thankful for all of the work Dr. Auerbach’s group, Dr. Wagner’s group, and Dr. Hughes’ group has done on Lindsey’s behalf.
I do not understand all of the science behind what these folks are doing, but I am very thankful for their work. I am hanging on to this bit of hope, while also realizing that it is still a long shot even if the test is successfully created.
Please remember to pray for all the children and adults seeking treatment for FA and other illnesses. Pray also for their families to remain strong in faith.
Victoria – Lindsey’s mom
Wednesday, December 29, 2004 5:14 AM CST
I hope everyone had a very Merry Christmas! Our Christmas was relatively quiet – which was nice. Lindsey received lots of great gifts and toys for her (and me) to play with. Santa was very good to Lindsey this year, but she deserves it all. I was able to be off from work for 5 days and it was wonderful to just have that time to spend with her. Lindsey will return to school on January 5th. I believe she misses her school friends and her teacher, although she says she wants to stay home instead of going to school. We have been blessed to have a wonderful kindergarten teacher for Lindsey this year. Lindsey has enjoyed school since 3 year old kindergarten, but this year is special and I believe it is due to Lindsey’s teacher.
Wednesday, December 22 I worked a short day and brought Lindsey to work with me. Dr. Wagner called from MN to say that he had been in touch with Dr. Hughes in regard to the PGD procedure. It seems that ruling out FA in the embryos will not be a problem; it is being able to determine which of them would be a match for Lindsey that is creating a stumbling block. Both my and Bob’s HLA typing is peculiar in that we both have some duplicate readings. Dr. Wagner requested more blood samples from Bob and I be sent to him for further analysis. We are going this morning to have the blood drawn and sent. I had a hard time finding a doctor/lab that would be able to draw blood before New Years, and more importantly, is capable of shipping the blood out of state. Lindsey’s hematologist at Children’s Hospital in Birmingham will be doing this for us. Once the blood is sent, we wait again to see if they are able to create a test which would produce successful PGD (Preimplantation Genetic Diagnosis) results.
I spoke with Kathy in MN at the Bone Marrow Donor center and she said that during their preliminary search they had been able to identify 3 potentially good donors. One is in the United States and the other 2 are in Europe. She was getting samples from 2 of the donors this week for further testing. This is good news. At first I was disappointed that only 3 were found, and then I thought about all of the children and adults that are not able to find any matches. We would prefer having another child that would be free from FA and be a match for Lindsey, but of course we are also searching for unrelated donors.
I had thought that this Christmas would be kind of sad and that I would not be “into” the holidays because of Lindsey’s diagnosis. Instead, the opposite was true. Lindsey and I decorated more, baked more, and had more fun. I really enjoyed this time, and really felt the “Christmas spirit” more this year than in years past. It seemed more precious. I am thankful for every day that I have with her.
Victoria – Lindsey’s mom
Friday, December 24, 2004 5:38 PM CST
I wanted to wish everyone a very Merry Christmas and the happiest of New Years!
I will update about our Christmas celebration and some news we received from Minnesota once I recover from the Christmas rush.
Thank you to all who have taken an interest in Lindsey and have been praying for her.
Victoria - Lindsey's mommy
Monday, December 20, 2004 5:48 AM CST
Sorry for not updating more regularly. We are gearing up for Christmas, and Lindsey is counting down the days. This Saturday, Lindsey and her Girl Scout troop caroled at a local nursing home. It was sweet to see how happy the girls made some of the residents. All of the girls sang well and seemed to enjoy themselves. Lindsey was shy at first, but felt better when she was holding hand with one of the bigger girls. Lindsey adores her “big kid friends”.
We took Lindsey to see Polar Express after the nursing home visit. It was a wonderful movie and Lindsey was mesmerized by the story and the visuals. We had a relatively relaxed weekend. I am looking forward to this week, which will be a short work week for me. I am anxious to have time off to spend with Lindsey doing nothing and everything.
I am still waiting to hear back from doctors concerning the feasibility of doing the PGD procedure. My patience is beginning to wear thin. It has been more than a month since the tests have been completed. All I am asking for is a phone call telling me “yes, we can do it” or “no, we cannot do it”. I do not feel I am asking for too much. I am glad that the folks in Minnesota have had the foresight to begin an unrelated donor search.
I am hoping to make our arrangements to visit Minnesota in April, soon after the Christmas holidays. I did not realize until after I agreed to the appointment date that this time fell on Easter weekend. I do not want to have to wait and reschedule, so we are going to stick to that appointment time.
Tonight our church is having a special Christmas program. Lindsey is excited about going. She is out of school for 2 weeks, so she will be able to sleep in tomorrow.
I am trying my best to remain positive, but I have my moments when I slip. I try not to think too far ahead, since the future is so uncertain right now.
The article came out in The Western Star newspaper last Wednesday. Bob and I are happy with how it read. Lindsey liked seeing her picture in the newspaper, but did not ask us to read the article. We appreciate the fact that Jason Tucker took an interest in us and contacted us to write the article. We would like to be able to update him with good news in the future.
Please continue to pray for Lindsey and all other children who are sick and seeking treatments. Thank you to everyone who has signed Lindsey’s guestbook. It helps to know that so many people are thinking about her and praying for her. Also, thank you to those who have contributed to Lindsey’s medical fund. We do not know who all of you are, but your donations are very much appreciated – more than you will ever know.
Tuesday, December 14, 2004 5:14 AM CST
I apologize for not posting Lindsey’s counts sooner. They are listed below. In parentheses is the range which is considered “normal”.
WBC 4.57 (5.0-14.5)
RBC 3.30 (3.90-5.30)
HGB 12.2 (11.5-13.5)
Platelet 75,000 (140,000-440,000)
I e-mailed the results to Dr. Wagner in Minneapolis. He did not seem distressed by her counts and said he would simply like to monitor them for now. We are still on schedule to visit him in April. Lindsey did great getting her blood drawn on Thursday. Sadly, I suppose she is getting used to it. We will have to go back in March to have her counts checked again.
The reporter from the Western Star newspaper came to talk to us on Thursday night. Apparently he had attended the auction and contacted us to see if we would be willing to share our story. We spoke to Lindsey about her condition Wednesday night in preparation for his visit. We kept it pretty general, saying that her blood was not working right and explaining what her bone marrow is supposed to be doing. We told her the name of her condition also. She seemed to take it in stride and was more interested in hearing about the reporter’s impending visit than about FA. We did not cover anything about what her future treatment will entail in regard to the transplant and travel to Minnesota. I figure we should take each step slowly with her and only give her what information is necessary at that time so as not to overwhelm her.
We are happy with what we shared with the reporter and hope that this article will spread awareness of this disease. It is so rare that most people have never heard of it. The article will come out on Wednesday. I am curious as to how it will read.
This weekend was fairly relaxing. Lindsey and I spent Saturday morning baking goodies. She is a big help in the kitchen. Lindsey is always enthusiastic about helping with baking or chores. I am so lucky to have such a helpful child. I am very proud of her. We spent a good bit of time playing and reading also. Later that afternoon we went to her friend’s birthday party. Lindsey had a wonderful time! She was so happy to see her friends. It was a dress-up themed party and all the girls looked so cute. Sometimes when I see Lindsey so happy I am struck by how unfair all of this is to her and how cruel this disease is. She will be facing difficult times down the road, so I suppose she (and I) should savor these happy and somewhat carefree times.
Lindsey has her Christmas program at school tonight. She is disappointed about having to miss her Scout meeting tonight, but is excited about wearing her new Christmas dress to the program. She is at the age where she is very excited about everything and anything having to do with Christmas. The feeling is contagious. I am really looking forward to this Christmas, also.
Victoria (Lindsey's proud mom)
Wednesday, December 8, 2004 6:36 PM CST
I apologize for not updating sooner. There is not a whole lot new to report. We are still waiting to get word from the doctor in Detroit regarding the possibility of doing the PGD procedure. The test results have been completed in New York for almost a month now. This whole waiting game is starting to grate on my nerves. I am beginning to get concerned that we may simply run out of time waiting to get word about whether we can move forward with this procedure, and miss our window of opportunity. It will take the doctor in Detroit 8 weeks or so to create a test in order to rule out FA and verify a HLA type match in en embryo. Then there is the whole IVF protocol to be followed. Time is of the essence. I hope these doctors do not think I am being a pest. I hope they see me for what I am – a very concerned and worried mom.
On a lighter note, Bob and I took Lindsey to visit Santa. She was a little shy at first, but went right up to him on her own and sat on his lap. After they had their picture taken he spoke to her for a bit. It was very sweet. We also brought home our Christmas tree this weekend. Lindsey picked it out. It is a big, fat, wonderful tree. She has named it “little girl Christmas tree”. At night we turn off the room lights and Lindsey and I look at the Christmas lights and ornaments. It is a very special time. Lindsey is getting very excited about Christmas, and to tell the truth I am looking forward to it more than usual myself.
Tomorrow Lindsey goes to see her hematologist to have her counts checked. She does not like going to have blood drawn, but she is a real trooper and does not complain. She is a great kid.
On Friday the Western Area Caravan local realtors association held it annual holiday auction. They were kind enough to designate half of the proceeds to Lindsey’s medical fund. Bob and I were very humbled by how many people care about our daughter.
We received a call the other day from a local reporter who attended the auction. He wants to write a story about Lindsey. We will be meeting with him tomorrow. We plan to talk to Lindsey about her condition tonight in preparation of his visit. We will keep it very general and not divulge too much about what treatments are down the road. We feel that it would be best to address each situation as it arises and not overload her with too much information. I have been putting off having this talk with Lindsey because she is such a happy child, and I do not want to change that. We knew we would have to talk to her sooner rather than later, but it will still be difficult. I know she will have questions. I pray that I will have the answers that will comfort her.
I will post Lindsey’s counts after I speak with her doctor. Please keep Lindsey in your prayers, as well as all the other children and adults seeking and receiving treatments.
Friday, November 26, 2004 7:05 PM CST
Well, I finally have news to post. We have been in touch with Dr. Wagner's office and have an appointment to visit the University of Minnesota in Minneapolis on April 14, 2005. He told us to be prepared to be there a few days. Apparently we will meet with him and they will collect some of Lindsey's healthy bone marrow in case a "rescue" is needed. There may be other tests. This is a step in getting treatment for Lindsey, but it also makes everything so "real". We have decided to fly in April. This will be Lindsey's first plane trip. We are also hoping that there will still be snow in Minnesota since Lindsey has been wanting to see snow.
Dr. Hughes and Dr. Auerbach are supposed to talk next week about the test results, so hopefully we will have a decision about whether or not PGD is an option for us.
We have had a nice and quiet Thanksgiving. Lindsey has mostly wanted to stay in her pajamas and relax, which is fine with me. She was a big help in the kitchen and is becoming quite the little chef.
Victoria - Lindsey's Mom
Thursday, November 18, 2004 4:09 PM CST
Thank you to everyone who has left a message in Lindsey's guestbook. It makes us feel not so alone as we go through this journey.
Well, we finally heard from the lab in NY. They have confirmed that Lindsey's mutation is Fanconi A. Unfortumately, they have still had a lot of trouble mapping my and Bob's genes and although they have found our defective genes they are not something that they have seen before. We still do not know if the NY lab has been able to gather enough useful information for Dr. Hughes to create a PGD test for us. I was told that Dr. Hughes would have to create a whole new test, if he is able to have enough information to begin with. We still remain hopeful, but the folks in NY have advised us that this possibility could "fizzle" if they are not able to gather more information through identifying markers on our genes. Right now we are waiting for Dr. Auerbach and Dr. Hughes to discuss the test results so we will better know what our options are.
I spoke with Dr. Wagner in Minnesota this week. He has advised us to come to Minnesota in order to have them collect some of Lindsey's bone marrow while she is still relatively healthy. It is my understanding that this could be used if a "rescue" is required during the transplant process. We are planning to make this trip in April. We do not have definite dates, yet. We should only be there a few days for tests, consultations, and the collection.
While this is a step in the right direction as far as getting Lindsey the treatment she needs, it also makes it all very real for us now. Granted, I have accepted Lindsey's diagnosis, but I suppose I have put the reality of what steps we need to take in the back of my mind.
We are looking forward to a quiet Thanksgiving this year. I am looking forward to having these days off from work and spending some quiet time with Lindsey. One of our favorite things to do is have "pajama days" in which we stay in our PJs all day and play, read, bake, or relax. Lindsey and I enjoy our "nothing days" as she calls them - especially after a busy week.
I am fortunate to work at a good company which is very family friendly. My supervisor has been very patient with me during this time as my schedule has become quite crazy lately. I am thankful for this.
Lindsey is fighting a cold right now. We had a great time this week on her school field trip to a farm and indian village which is just outside of Birmingham.
Please continue to pray for Lindsey and all other kids who are going through difficult times in regard to their health.
Victoria - Lindsey's Mommy
Thursday, November 11, 2004 4:54 PM CST
It has been a few days since I have posted an update, so I thought I should do so today. First, I would like to thank everyone who has left a message in Lindsey's guestbook. It is comforting to know that so many people are thinking about, and praying for our daughter.
There is not a lot to report. Bob and I have visited an IVF clinic here in Birmingham in order to get things lined up once we find out if we are good candidates for the PGD procedure. We remain hopeful, although I have heard from the lab in NY that they have had a good bit of difficulting mapping our genes. We hope that there is enough usable information for Dr. Hughes to create the necessary tests. This whole process is quite daunting and our chances are slim that we will achieve the success we desire - a healthy non-FA affected child that would also be a HLA match for Lindsey's bone marrow transplant. Right now we are in a holding pattern as we wait for results from New York. I am trying to be patient about waiting, and understanding that these tests are very precise and time-consuming, but it is getting more difficult by the day to be so patient.
I have been so focused on contacting doctors and lining up appointments, doing my own research and reading that I have not allowed myself much time to be down. I think it is starting to catch up to me. This past week I have been feeling very sad, and possibly depressed. I do not feel like going to work, nor do I want Lindsey to go to school. I simply want to be with her - all the time. At times I feel overwhelmed with sadness. But I need to stay focused on keeping in touch with the doctors I am dealing with so they do not forget Lindsey's name. We live in Alabama, but the doctors we are depending on are in MN, MI, and NY.
I suppose I am entitled to feeling down at times. Hopefully my mood will brighten soon. Lindsey and I are going to a Girl Scout event this Saturday and then to her friend's birthday party. I will be going with her on a school field trip next week, and we are both looking forward to that.
I will post some pictures in Lindsey's photo album. Hopefully my next update will be more upbeat and have some news in regard to test results.
Victoria - Lindsey's proud mom
Wednesday, November 3, 2004 11:30 AM CST
Nothing new to report on the medical front. We are still waiting to get some final test results from NY. We remain hopeful that we will have the option to pursue the PGD procedure in order to have a healthy child that may also prove to be a match for Lindsey’s BMT. The waiting for results and answers is so hard.
Lindsey had a great Halloween. She was dressed as Snow White, and ended up with way too much candy!. She truly fancies herself to be a princess, and I suppose her Dad and I have reinforced that belief for her. I will post pictures of her in costume soon.
We will return to see Dr. Watts at Children’s Hospital in Birmingham at the beginning of December to have her counts checked. Lindsey has been really healthy this school year. Except for a 24 hour stomach bug in August she has not been sick – not even a cold. I notice she seems to get tired quicker than usual, but that may attributed to a full day of kindergarten, gymnastics twice a week and Girl Scouts every other week. Heck, that schedule would make anyone tired I suppose. It makes me tired!
Lindsey has been waiting for more than a year to become a Girl Scout and has loved every minute of her Daisy scout experience, so far. She really enjoyed her first overnight campout. The older girls seem to be quite taken with her. When the leader as for volunteers to be Lindsey’s “big sister”, many of the girls raised their hands. Lindsey loves other kids – both older and younger. She is quite the little peacemaker when her friends have disagreements, and is always the first to offer help to a hurt classmate.
I am amazed by the depth of her compassion and her deep undoubting faith in God and Jesus. She speaks about Them as though They are personal friends of hers, which I suppose in a way they are. Lindsey has her own definite ideas about God, Jesus, and heaven which she speaks about with such authority that you can tell her faith is strong. She is so smart and sweet and kind and faithful that sometimes it is all I can do not to grab her up, hold her tight, and cry for what seems to be a very unfair situation we have been put in by having to deal with FA. Of course, sometimes I do cry, although I try my best not to do so in front of Lindsey. Mostly it is when I catch her playing or looking through a book; doing something that she is so engrossed in that she does not even know I am watching her. That is when I think about how unfair it is that her body is betraying her by harboring this illness. That is when I am at my most sad. Then there is night time when it is dark and Lindsey is asleep. That is when all of the “what ifs” start to creep into my head. I try my best not to get too down for too long, and instead focus on learning as much as I can about FA.
Lindsey’s father and I plan to sit down and try to explain a little about what is going on. We know that keeping it simple is key, that and allowing her to ask questions. We will simply explain to her that her blood is not working right and is not making all the parts of her blood properly as is the case with other people. We do not plan to cover any of the treatments that she may be facing down the road. We will cross each bridge as we get to it.
Thank you for checking on Lindsey. I hope to have some test results soon so we can make some decisions about the best course of action to pursue for her.
Sunday, October 31, 2004 1:45 PM CST
Thank you for visiting my daughter's site. Lindsey was born on June 1, 1999. She was small at birth and was kept in the hospital a few extra days due to jaundice and accelerated breathing. After she came home she had difficulty eating and would vomit after each feeding. We brought her to Children's Hospital in Birmingham on June 13, 1999 where she was diagnosed with NEC and admitted so she could receive IV antibiotic treatments to treat NEC. After a couple of weeks in the hospital her attending doctor ran an upper and lower GI test and discovered an intestinal blockage. On June 29, 1999 her blockage was sugically removed. We figured Lindsey's medical troubles were over. She is susceptible to stomach viruses and is still small for her age.
For several years off and on, her pediatrician sent us to different specialists in order to determine why she was so small. Her platelet counts were also consistently low. On July 29, 2004 her hematologist at Children's gave us the diagnosis of FA. We were devastated, however, the symptoms of FA answered several questions for us. Lindsey has several cafe-au-lait spots, and bruises quite easily, then there is also her small size. She does not have any of the other defects sometimes associated with FA.
We are currently trying to decide the best course of action for Lindsey. I have tried to educate myself about FA as best I can within the time since my daughter's diagnosis. We are considering the PGD procedure in order to have another child that is not affected by FA and would be a matched donor for Lindsey. We have discovered, however, that Dr. Auerbach's lab has had some difficulty pinpointing genetic information that would prove valuable for this procedure. Dr. Mark Hughes, who would be performing the actual PGD has also told us that there is some trouble with duplications in our HLA typing test results.
Lindsey's counts are holding at the low end of normal right now. Doctors have told us that we have the "luxury of time", although it certainly does not feel like that. I have read about other families facing FA and feel scared and hopeful all at once. There are so many unknowns with FA, so many variations that it is hard to get a handle on the "what ifs".
Someone I work with asked me recently if I was angry about Lindsey's diagnosis. Oddly enough, I am not. There is no one to be angry with. Someone suggested I would be angry with God for Lindsey having FA. I cannot be angry with God - He gave me the greatest blessing I have ever had in my life. I do not see her illness as a curse, rather I feel all the more blessed to have been chosen to be the mother of this wonderfully loving and caring child. I do not know what God's will is, however I pray that He may give me the grace to accept His will, whatever it may be.
So, I take each day as it comes and try to do the best I can for Lindsey. Sure, I have bad days where I am sad, but more often I am happy just to have Lindsey with me.
Strangers, family, and friends all comment about how Lindsey is so sweet, kind, and special. Once when she was much younger I had asked her jokingly "Why are you so smart?" She turned to me and said quite matter of fact "Because God made me that way." So true. God made her smart, beautiful, kind, compassionate, strong, brave and with FA. He made her unique and special because He loves her so.
I have no idea what our next step may be. We are only beginning this journey with FA. I hope to have a better idea of treatment choices in regard to PGD in the next week or 2.
Friday, October 29, 2004 4:24 PM CDT
Lindsey was diagnosed with Fanconi Anemia on July 29, 2004. Since that day her father and I have been on a roller coaster ride of emotions. We are trying to learn as much as we can about FA and keep our faith strong.
I will update with more details soon.
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