 Lana's family will
be posting updates and progress on treatments here on a regular
basis. Check here often to keep up to date on Lana.
Date Added: 7/28/2008
Summer of 2008
Hey everyone! I am so sorry for not updating the diary in such a long time. It is hard to believe that Lana is 7! The days go by before I know it.
Lots of things have happened in the past few years. Lana turned 7, that would be the biggest news concerning Lana. I go back to those days in the beginning and remember thinking if she would even live a year, much less 7. We have learned so much as a family. Coty is turning in to a well rounded young man who has compassion for others. He recently had a new friend tell him that he felt sorry for his sister (meaning Lana). Coty told him that he shouldn't feel sorry for her because she doesn't feel sorry for herself. He is right, she loves people, she loves life and she is surrounded by love from everyone. Not much to be sorry about there. As Coty is getting older and his friends are growing up with him, I think it is just the cutest thing to watch them with each other and with Lana. They treat her just as they would any other child except they are very protective of her. If we are sitting outside at a ballgame, I'll see a bunch of guys running to get Lana under cover before even thinking of themselves. It is a pretty neat thing to see.
The past year has been a healthy one for Lana. She did not have even a simply cold until the spring. What a difference from our regular visits to the hospital. We still have her homebound from school to make sure she is not exposed to usual things. A simple cold is very hard on her so we try very hard to keep her exposure down to a minimum. Lana does love to go and be around other kids. We try to give her opportunities that allow her to be just a normal kid.
Just a little note on her medical treatments and our travels...
Lana got to go on her first airplane ride this summer to Philadelphia. It was Gary's first airplane trip as well. A friend of mine gave me patches for nausea so I was good to go. Lana did great, Gary, somewhat good. I will say that the trip went very well. We decided to fly because the car ride was causing Lana to get very sick. The last time we traveled with her, we ended up in the hospital. It took only an hour and a half to fly compared to our 12-14 hour drive. I believe we will have to continue to fly to keep Lana well for her medical visits from here on out. We still travel to Charleston for her gastro appointments which we would not change. Dr. Kline is very special to us and is just as kind and sweet to Lana as he can possible be. He gave her a g-tube (feeding tube)that has gone very well. We fought getting the tube for over 4 years but now we see just how wonderful it is. I've decided that all children should come with one. It is easier to give medications through and when Lana gets dehydrated, we put her on a continuous feed of fluids. It has certainly kept us out of the hospital emergency room.
Lana's latest MRI was not as good as we had hoped but we are still encouraged by Lana's progress. The gene therapy that Lana received when she was 2 years old, has slowed the progression of the disease. Lana's brain is now "modeling" as the doctor has stated. Basically, what Lana is able to do is what the brain is sustaining. Of course mobility is a huge problem for Lana so that seems to be the largest area of atrophy continuing in the brain. We have since upped her therapies to help in this area. I have to say that Lana has been given such a gift to have the therapist she has. They are willing to fight for her just as if she was their own.
So, we continue our fight and give thanks for every day. I started thinking about all the things we have learned over the years from having Lana and the many friends we have that have walked with us and join us in this fight. We are hoping that stem cell therapy will be available for clinical trials soon. The preliminary results from the research is promising with new insights to the disease being found.
Thank you for keeping up with our family and your continued prayers.
Date Added: 6/27/2005
Conclusion of Two Year Clinical Trial
Lana turned four on April 30, 2005, praise God! She also concluded the two year clinical trial for the gene therapy program. The documentation from MRI's, spectroscopies, and other evaluations have shown that the disease that was destroying Lana's brain has been halted. She has had no more atrophy to her brain since she received the gene therapy in April of 2003. Lana remains tiny and petite but continues to grow and mature as any other little four year old girl. The Three Princesses have now taken the place of her once loved Winnie the Pooh. She still likes to hear his silly voice but instantly lights up when she hears the Princesses. Lana is continuing with therapies that have been so beneficial to her gaining use of her hands and arms. She continues to make different sounds and is seeing much better. Lana clearly doesn't paint the picture of a four year old that was diagnosed with Canavan's Disease. She is very vocal about what she likes and dislikes and is very much her own individual. She is having a bit of a problem with her digestion system and reflux but is being seen by a loving, caring doctor who gives her a kiss every time he sees her. God continues to bless us with the most compassionate and knowledgable physcians. We will continue to travel to New Jersey for check-ups to make sure Lana continues progressing. The research is moving forward and we pray that Lana will be included in the next level. Stem cells are being studied and prepared for use in the children with Canavan. We continue to raise funding to move the research forward. So far, the cells are showing great promise in repairing the damaged part of the brain in Canavan studies.
Thank you to everyone who has helped fund this project that has allowed Lana to receive the gene therapy. We are so thankful for the support in funding the research that has enabled Lana to receive this live-saving procedure. With continued funding we will be a part of yet another ground breaking treatment. It is wonderful to have such an incredible researcher working to save our children and is not satisfied with keeping her research in the lab. Because of her work and dedication, Lana has become a pioneer that has opened the doors to help so many.
Date Added: 1/9/2005
January 2005
Hope everyone had a wonderful holiday and looking forward to the new year. We finally had an uneventful Christmas with everyone home and well and was able to celebrate the true gift of Christ.
Lana's Christmas started by receiving a precious dog that is being trained to work with her as a therapy pal. Coty is still finding the perfect name for him while he bonds and falls in love with Lana. (He's pretty fond of Coty as well) We have been very pleased with Lana's recent MRI and test results and looking forward to April when we will return to New Jersey for her 2 year post gene follow-up. The progression of the disease has stopped and Lana shows no signs of continued myelin loss. The myelin gain after the gene transfer remains and no further damage has been noted in Lana's brain. Although there was a place in Lana's brain where the NAA (bad acid) had increased, we believe it was because she had been unable to take some of her medicines due to the reflux she had developed. With the help of a wonderful doctor in Charleston, the reflux is under control and Lana is now able to take her other medications. Even with the increase of the NAA in that particular part of the brain, no atrophy was shown, praise God.
We have focused our prayers specifically on Lana holding her head up and gaining strength in her legs so that she may stand without assistance. She is doing much better with her head control and wants so much to go along with other children. Lana is now recieving therapy from another set of therapist in addition to the wonderful group she has had since she was 5 months old. She is making gains and continues to bless our hearts every day.
Many opportunities have opened for us to share our faith and God's love for which we feel may be just the beginning of what He has planned for us. Just this past summer, we were priviledge to meet Sen. Clinton in Washington, D.C. during a documentary of another family (Jacob's Cure) who has done so much to fight for funding to cure Canavan. To be a part of something so wonderful and to know that what we are doing will help so many others is overwhelming. We have helped open the doors for other trials to begin for other brain diseases as well as other Canavan children to be helped. We plan to continue pressing on with a foundation that will go beyond what God has called us to do as Lana's parents but to also serve others.
Thank you for standing with us and believing God for the Creator He Is. It is so clear that Lana is part of a bigger plan that has been more than we could have ever dreamed.
Date Added: 7/31/2003
Three Month Check-up
We have just returned from Camden, NJ with wonderful news. Lana is much more alert and is aware of others and her surroundings. Lana's eye sight is improving as well as her muscle tone. She is making small gains in her head control and is excited about finding her fingers and toes! Lana is now getting in the swimming pool where she enjoys her physical therapy. The doctors are please with the progress Lana is making and look forward to seeing her again in three months where she will undergo more MRI's evaluations to determine what gains (and we are expecting gains!)she has made. Thank you again for your many prayers and messages written in the guest book. What a blessing each and every word is to us. We are so humbled by the mighty God we serve and thank Him for each of you.
Date Added: 5/7/2003
Lana's Recovery
Thank you Scott and the other members in the lab who didn't see daylight for months to prepare the vector and gene.
Date Added: 5/7/2003
Lana's Recovery
We returned home with Lana on Saturday, May 3 to a home filled with family and friends. What a blessing you all have been!
Lana is doing very well and continues to make small improvements every day. For the first time, she put her fist up to her mouth during dinner! She is very happy and is shocked at times with her new ability to move her arms and hands on command.
I believe Lana enjoys her new summer haircut and may not like how rapid her hair is growing back. Within a few months she should be wearing bows again!
Thank you for prayers during Lana's surgery and all the support that has been shown throughout our stay in New Jersey. We will be returning to Philadelphia in June where Lana will begin having MRI's every 3 months to show the funcioning gene in her brain. The Lord has provided us with the most amazing people during our stay in New Jersey and we look forward to returning to visit with them.
Cooper Hospital provided wonderful care for Lana. The entire team working with Lana during her surgery were very kind with warm hearts. Thank you Dr. Desilva and Dr. Feely for taking such good care of our little girl. We so look forward to visiting Cooper in the upcoming months.
We pray for the families who will be going through the same procedure this coming summer. Please know that you will be taken well care of. Our children are such angels and are truely loved by those at Cooper.
We also pray special blessings on Dr. Paola Leone and Dr. Chris Janson for their love and devotion to Lana and the other families with Canavan children. You'll never know just how much we appreciate all the long hours that are put in to save our children. After the surgery, we felt like we were walking out of a long tunnel that we have been walking through for the past two years. Thank you for making a difference and hearing clearly what your calling has been.
The Lord has moved in a mighty way and we give Him all the Glory for it.
God Bless You All!
Michelle and Gary
Date Added: 4/7/2003
Gene Therapy Enrollment
Lana has been accepted in the next gene therapy trial to begin this spring! Lana will be second in line of six children to receive the treatment. We know that it is only by the hand of God that Lana is and continues to thrive and do so well. It has been a very long year but with your help in fundraising and the many, many prayers lifted, the research is able to continue with the next group of children. We ask that you remember Lana on Tuesday, April 29 (the day before she turns two years old!) when she is scheduled to undergo the gene transfer in New Jersey. We are standing on God's word and thank you for standing with us for a miracle for Lana. We ask for you to pray for Dr. Paola Leone and her staff as this current trial begins and to give them wisdom to fight this disease and find a cure for all our precious children. We ask that you also pray for all the other children and their families as well. We know how powerful prayer has been for us and believe that God's plan is folding out just as He said that it would. We are resting under that beautiful rainbow He gave us over a year ago that reminded us of His promises. We will post updates from New Jersey on Lana's progress and recovery. Thank you all so much for your love and support.
Gary and Michelle
(Lana's daddy and mama)
Date Added: 11/10/2002
Fall Festival
Hi everyone! We had such a wonderful time at the festival. Lana enjoyed the weather that God blessed us with. Thank you all so much for your support during the event. We raised over $6,000.00 to go toward the program that is offering such hope for Lana. Once again, the Lord has brought the most unbelievable people into our lives through this event. Thank you for traveling this road with us.
Date Added: 6/24/2002
Lana's First Birthday!
We are so blessed to have celebrated Lana's first birthday on April 30 of this year. She contiues to do very well. Lana is an extremely happy baby that is in love with her big brother. We recently traveled to Cooper Hospital for pre-clinical exams along with several other Canavan children waiting for the gene therapy. The NIH approved the program on May 30 and granted funding for 18 children to be treated over the next 3 years. The trail will begin mid July with the first child then followed by 5 more every two weeks. We pray that Lana will be among the 6 to be treated this year. It is our prayer that every child battling this disease gets the opportunity to benefit from this treatment. Continued funding will be needed to further the research with stem cells and to continue the work being done with the gene therapy. Thank you all for your continued prayers, they have lifted us from some very dark moments.
Date Added: 2/26/2002
Yard/Bake Sale
Have you ever seen so many things in one place for a yard sale! We have been blessed with so many people giving to us. The cakes, pies and other goodies were unbelieveable. Every one was sold with people wanting more. Thank you once again for a successful fundraiser!
Date Added: 2/8/2002
BBQ Dinner
How can we possibly thank everyone for the overwhelming support at the BBQ. Both to those who purchased one of the 1200 tickets and to those who unselfishly helped to serve those 1200 tickets! We are so humbled by all the love and support shown by you all and pray that God will bless each and every one of you in a special way.
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