Van Alexzander's

Ok, first let me thank each and everyone that has supported us. Donated their time,sources,and funds to allow us to be able to visit Dr. Van steensel in the netherlands. I will start from the beginning and just work into all the information.

April 1st The day we woke up to get on the plane, Van was running a 102 temp. we called the doctor, since he had no other symptoms, they said it would be ok to fly anyway. we drove to washington dc where the plane was leaving out from. when we arrive we find out that the plane that we had confirmed reservations for to fly out at 3pm was not even a working flight unil june. crazy right? well, they had to book us on the next available flight which was not until 530pm so we had to wait at the airport with a very sick baby, then the flight was delayed, but only to 615 pm so not to bad. Finally we board the plane. 9 hours later and alot of crankiness and crying from Van, a horrible flight (so much turblance dinner was delayed until 1030) and 3 cranky kids we arrive in frankfurt germany early morning April 2nd at 9am germany time) luckily all our baggage arrived with us. but we are 3 hours from dortmund where we are staying. so we rent our van and head out for the drive. squished and packed with suitcases we head to dortmund to my grandfathers house where we will be staying. Even though my grandfathers house is in germany and 1 hour and 30 min drive to the hospital it saved us so much money in hotel expense. after arriving at Opa's (my grandfather) we said our hellos and crashed for the whole day and night. the babies fever was getting worse. got up to 103 and would come down to 99 with motrin. we called the doctor they said as long as it was coming down with motrin just to hang in there. April 3rd moring, van woke up with a very low grade fever of 100.1 this was good news, and with motrin was coming down to normal. we decided that it would be ok to do the day of sight seeing my step-father had planned for us. he treated us to keukenholf, a beautiful garden of tulips. Tulips are my favorite flower and has always been one of my dreams to visit there. by mid day van was no longer running a fever and was feeling and acting great. we were so releived. we quickly learned that everything was very expensive over here. even using the bathroom cost money even if you were eating at their resturant at the time. it was ,50 cent euros to use the bathroom per person everytime. even ketcup packets cost ,40 cent euros a piece for your fries. basically nothing is free. nothing. I will say that every bathroom was extremely clean and you never had to check through 3-4 stalls before picking the least flithy like in the states, but having 3 children with you and costing so much each time really added up. oh yeah and the small 20 ounce cokes, 4,00 euros crazy right? dont complain when you go to a gas station and pay 1.30 for yours anymore. nor using their bathroom for free, and paying 1.98 for a gallon of gas. theirs is 1,40-1,50 euros per liter!!! can you imagine 8 dollars a gallon. be thankful! at the time of our visit the american dollar was worth ,73 cent euro from a bank, or ,63 cent euro at the airport.  doing the math, just exchanging the money and we are already so behind. with this being said, this trip could not have been possible with out each and every one of you. we underestimated the cost of the trip big time! so the kids learned to do without kethcup salt and learned to share drinks lol. the tulips were beautiful though and was an experience we will all remember. April 4th we just hung around the house, even window shopping is expensive. April 5th we rode around dortmund and my step-father pointed to sights and showed us where he grew up and how thing have changed and what is the same. we then visited his long time friends which took us out for dinner. we had pizza. it was very different than american pizza, and the kids didnt like it. but it was a great experience. they had bought van a tractor and a monster truck and gave the kirsten and hunter 15 euros each. it was so very sweet of them. April 6th we drove around and visited the castles. it was free so that was a good thing lol, and soo beautiful. I took so many pictures of the sights. I couldnt stop taking them because everything just had so much history to it. Van although not running a fever now, had picked up a nasty cough and wasnt feeling very well. he was very cranky and irritable. We bought some medicine that the local pharmasist recommended but it wasnt helping. we decided that we would go and see Michelle Morris. Her and her husband are in the us military and stationed in germany. April 7th we got up early and drove out 3 hours to visit michelle. her house was completely amazing. it was huge and so beautiful with detailed wood that you just dont see very much in america. She took us to the military base to an american store where we were able to get some tylenol cough cold and flu. She also showed us the sites and I got to buy mountain dew!! oh yeah forgot to tell you, NO PEPSI PRODUCTS IN GERMANY!! we got to see the airforce planes up close and it was amazing. We then had lunch at good old fashioned american popeyes. the kids ate great. They hadnt been eating very much since we arrived. we had planned to go on a boat tour of the rhine later that afternoon, but we were too late and missed it. but that was ok, we enjoyed our day with michelle very much!  after giving van the medicine we bought on the base there was major improvement!! April 8th, the big day!! we headed out early to the netherlands for the doctors appointment. I took many pictures all the way there. we talked to the receptionist and waited in the waiting room. the waiting room was great, it had lots of toys and games for the kids. actually too great, because when we were called back van started screaming because he didnt want to leave. eventually after realizing that talking him into going was not working my husband picking him up kicking and screaming and was off to the room. I grabbed the book bag full of 2 years worth of medical records and pictures and we were off. while talking to the doctor van was screaming blood murder. we then realized we left the camera in the waiting room with my mother and older too kids. so charlie and i decided to run back and get the camera and bring back kirsten which would help us calm down van. only problem was they werent there. they had taken the kids (which were starving by now) for lunch. so no camera and a now worse screaming van we continued the appointment. so here is what we learned. And I am going to simplfy it so the average person with no previous background can hopefully understand better.

van has cmtc, the type of cmtc he has is called classic cmtc. we learned that cmtc is not a vascular malformation like the doctors here told us it was, but is when the blood in your body is oxygen deprived. the less oxygen the blood has the bluer it is. van's cmtc in his left leg is extremely oxygen deprived. this is why you can see the veins so well inside his legs because the blood is so blue instead of red oxygen enriched blood like a "normal" person. as the blood circulated out of the legs arm and back it becomes oxygen enriched and this is why it is not visable all over the body. however. when the temperture is extremely hot, or extremely cold, or he gets stressed out or upset or is running a fever, the pulse quickens and the heart and blood begin to pump faster and faster. causing more cmtc to become visable to the eye because the blood doesnt have enough time to become oxygen enriched. This is why van has more visable cmtc during these situations and the reason why he has a hard time breathing because the blood is deprived of oxygen. (im trying to break this down really simple, its more complicated but i want everyone to try to be able to understand) For this reason it is very important that we keep van out of stressful situations. Ok he is one (almost 2) so everything that doesnt go his way is stressful to him, so we will just have to come up with more creative and imaginative ways for displine and redirecting his attention. Also do to this fact. We will no longer do the cancer screenings. The doctor beleives that this does him more harm than good because of his cmtc condition. if he was older and understood the ultrasounds dont hurt him and wouldnt get so stressed out and we didnt have to hold and or strap him down (which in the last appt ultrasound he had what we thought was an asthma attack but was really his oxygen getting to low which gives the same outcome) and the emt had to be called in to regulate his breathing. so after discussing with the doctor we had to make a desision what is best for our child. so we are no longer going to do the screenings at this age, but will just do more intervel check-ups every 6 months.

next information: the markings on van's neck scalp and forehead are NOT cmtc but a vascular malformations. having markings on the eyelids, forehead scalp neck etc give him a higher risk of vascular anomolies in the brain, higher risk for glacoma, eye problems, brain blood clots, anurisms (sp) etc. But do to the fact at this time he is making all his milestones and his eye checks are going well, the doctor doesnt beleive it is an issue today. I say today because the doctor explained to us that cmtc and vascular malformations are a case by case day by day condition. what happens to one child one day, will not happen to another child or can happen the day after you got screened for the condition if that makes sense. bascially, you dont know what will happen, you take each day by day and be thankful for it. we are thankful that today he is making his milestones. if we see him blanking into space, having a seizure, not making milestones, or not progressing then we will do an mra first thing to check his malformations in the brain. until then the mri results will be fine.

next issue. Van has hypoplasia in the left leg. This is a new diagnose for us. basically hypoplasia is the atrophy (wasting away or deteration of muscles bone and tissue) to what extent this will progress is something we will just have to wait and see. all we know to this point is the left leg has wasted from the knee to the ankle 2cm in length and 6 cm in width. most of his hypoplasia is from the knee to the bottom of the foot on the left side. worse case senerio the leg will waste to be unusable, best case it will remain as is. all we know is it wont get better, will it get worse? only time will tell. Because of this atrophy in the left leg, vans pelvic is not alligned. and causes an improper stride or walking habits. he is dragging his foot when walking instead of properly picking it up. The doctor recommended a 1cm lift (half of the descripancy) to help level the legs and help him to regain a better walking stride. why is this important? the doctor explained that a child will always do what is easiest for him. by dragging the foot it is easier and faster for him to get around. The downfall, pain at night in the hips and joints, and possible curvature in the spine causing scolosis (sp). which would be an additional problem. by giving him a lift for the left foot we can help that from not happening so quickly.

the pain....Van suffers from pain in his legs alot. At night he crys and says his legs and feet hurt. The doctor opening explained, that there is not enough funding for research in this matter and one day they hope to figure out why he has pain. they arent sure why or what the cause is. But they said that every child that has cmtc complains of the same pain. older patients can even point to the areas of pain, but they still arent sure what causes it. they have accumilated research from fellow patients that suggest that chiropractors and regular deep tissue massages can releive some of this pain if done regularly. One day they hope to be able to find and help with the source and reason for the pain.

next, due to the viens not carrying proper oxygen, it is sometimes possible for them to malform, stop working or stop working well. to help you better understand with a comparision that most people are familar with, even though not quite the same this may help you to get a grasp on it, it is simular to vericous viens in older people, how they can beome damaged tear or have to be bypassed, however this begins to happen in cmtc patients about age 8-15 instead of 60-80 some of the viens may be need to be repaired.

when van reaches puburity we will have a huge desision upon us, which we will include his opinions in. should we do the surgery to have the longer leg shortened by stunting the growth or shaved, or the shorted leg lengthened. while we ourselves have done little research on either, the doctor informed us that it is an easier surgery on the child to stunt the growth in the longer leg. depending on the leg difference at the time will greatly impact the desision we and the doctors make.

while the doctor said their is no absoulute way to rule it out, he strongly beleives that he may not have hemihypertrophy but hemihypoplasia instead. basically to break it down. instead of the left side being "normal size" and the right side being larger than normal, he beleives the right side is "normal size" and the left side is smaller than normal. which would also explain the atrophy of the intestines,and brain on the left side. the fact that the left kidney is larger, there is no explaintion for, but he does not feel that it is working improperly at this time, whether it will cause problems later in life time will tell. but we are thankful to god that at this time it is functioning at a normal rate.

what is true and what is not true on the internet? a long discusion that we had with our doctor. You will be surprised to know that doctors use the google system as a source of information for your care. why is this a problem? when you arent familar with the condition what can you sort out as opinion or fact? or situational for that patient or all cmtc patients. this is one downfall to the amercian doctors. please dont believe everything that you read, alot of it is from misinformation. the CMTC.nl website is working on a question and answer application which will be very helpful for the general public from a specialist that knows the condition and how to treat it. also there are two other cmtc specialist which we were not aware of that work out of london. this is very good information to know for people that live in that area and thought that the netherlands was their only option. currently these doctors are sharing information and working side by side to increase the knowledge of this little known condition. But thanks to Lex the president of the CMTC non profit in the netherlands, we have been able to treat and evaluate patients all over the world at the netherlands center at no cost for the medical evaluation. Plus dr. van steensel donates his knowledge and work to the patients and doesnt not recieve payment for these services. If you have ANY questions about anything please email me no question to big or small! TheVandowneyfund@aol.com

April 9th, our day with lex the president of the CMTC non profit. we first started the day out visiting delft and running errands, paying for our expenses and such, since it is a large city they have banks and atms readily available. then off to lex's house. his house is so nice and beautiful. we picked him up and he showed us around the city amserfort where he was born and grew up. he showed us dutch traditions like eating raw herring YUCK which Van absloutely LOVED and cryed for more when it was finished. and took us to the town hall and beautiful churches. It was the towns 750 anniversary so was very decorated and celebrated through out the town. then he took us to a candy store and told the kids to pick out what they wanted and he bought it all. Then off to a really great resturant for traditional dutch pancakes. you could put anything you wanted on them, from pizza toppings like charlie and I, to powdered sugar and whipped cream for the kids. back to lexs house for a sit down at his house and a great end to the day. we were suppose to take that once again boat ride on the rhine but missed the boat again. we never did get to do it. but that is ok, our day with lex was priceless and we enjoyed it very much and spoke with him about his own 15 year old daughter that also has cmtc.

April 10th we hung around house and slept in, then took kirsten about a few miles up the road to see the soccer staduim (she loves soccer) and to the soccer store where she bought a soccer shirt signed by all the players, curdiousy of Mr. Valentino which provided her with a personal gift to buy something special when on her trip. Later that night we went to my stepfathers friends again for easter friday dinner. they have a son named marcel which gifted us with the most amazing gifts, as if they hadnt done so much already!! a soccer jersey for charlie,kirsten and hunter and a soccer jacket for myself. it was amazing and the kids and us were so excited and grateful. We hung out at their house till bedtime and then drove back to opa's.

April 11th we slept in and siggi and mom awoke us with a surprise to take us to the local zoo. the kids were very excited. we got to look around at the zoo and have alot of fun. we thank my mother and stepfather more than we can possibly express because without their help we would have just sat in the house all week. we returned home about mid day and and began packing up all our belonging for our trip home the next day. my stepfather and mother visited their mothers grave and placed flowers and we got everything together for our trip home.

April 12th our trip home. We had to wake up and get ready really early because they airport is 3 hours away from where we were staying. it was 5am germany time. when arriving at the airport, good news the flight is right and on time, unlike our trip over, as we started to check in our bags everything going very quickly and smoothly because not many people were flying due to it being easter day. the alarms sound and the security push us away from the counters leaving all our luggage stranded at the counter. airport lock down in our area. They found a suitcase belonging to no one at the food court near by. they roped us back with police tape while the police investigated the issue. about 1 hour later and very paniced we would miss our flight they opened the area back up and we were able to continue to check in. the rest of the check in went very smoothly and because it wasnt busy at all we had gone through customs and waiting at the terminal 2 hours ahead of schedule!! We finally board the plane for a smooth ride home. baby slept for the first half as well as the other kids, hardly anyone was on the huge 747 plane and was very pleasant. when arriving at the airport it was 945pm germany time, (the time our brain are still on) but 345pm DC time. the shuttle from the plane to the airport never came back after the first load to get us, luckly after waiting 1 hour in the hanger the captian called down and said HELLO you forgot us, so 445 we are in the shuttle to the airport, first we go through immagration and then secondary customs and we are finally out. we go and claim our baggage and surprise again all of it is there horray! My sister catherine came to pick us up and we loaded the car for the drive back home which ended up being about 3 1/2 hours due to easter dc traffic, so we walk in the door at 800pm virginia time, but running on it now being 4am germany time in our brains. after unpacking and getting the kids settled for bed we realize we have now been up for 27 hours straight and we better go to sleep. at 3am the baby wakes up and then my son and then my daughter and charlie so we all sit sleepless in the livingroom at 3am and charlie makes pancakes for all of us wondering how my husband will make it to work on almost 2 straight days and only 1hour 1/2 of sleep. The kids were excited to return to school so they did. but charlie didnt make it. last night i was suppose to make this update i am writing now but i was so tired and crashed, so here it is. if you have any questions please let me know. i welcome them. and thank you everyone for providing us with this opportunity for our son. many have asked is he ok now. Well, no, there is no cure, but thanks to your help we understand what we are facing, how to face it and how to better maintain his conditions in the proper way. thank you god and thank you all for your continued support and prayers. We are very grateful and love you all.

Lisa Charlie Hunter Kirsten

and of course,

VAN THE MAN!

Thank you to everyone that came by and supported us for the yard sale on march 21st 2009, we were able to raise 389.00 despite the freezing cold weather. We were also able to sell a few raffle tickets for his cause as well. It's still not too late to purchase raffle tickets. Jenny Blanton and I still have tickets available.

The raffle ticket drawing will be held on March 29th, where Van will draw the three winning tickets! First Prize 500.00 to Lowes, second prize 250.00 to walmart, and third 50.00 to Outback. Outback donated their gift certicate, but surrounding business all pulled together and donated to buy the Lowes and Walmart GC. All Sponsers will be announced and Van will draw the tickets while we video tape it, it will be uploaded to facebook. Lisa Jenks Downey is my name on facebook. For those of you that want to attend the drawing in person, it will be held at Kay Gammon's house and she has extended an invitation to all raffle buyers. Please email me at TheVanDowneyFund@aol.com if you are interested in coming and need directions. Thanks for your support!

We are having a HUGE yard sale march 21st 2009. Many families have donated stuff for it and we are hoping that we will be able to raise alot for the Medical fund. If you are interested in donating things to sell please contact me at 804 201 3208 it will be on 360 beside the shed man at Ryan Gaults house. (near tasty freeze, and holiday house) We will also have raffle tickets for the raffle for sale that day as well. the raffle is for a 500.00 gift certificate to lowes, 250.00 gift certificate to walmart or a 50.00 gift certificate to Out back steak house. So there will be three chances to win!! Tickets are only 2.00! Thank you everyone for your time, donations, and support. we appreciate it greatly!

We had his protocol testing on tuesday march 17th, we wont get the results back for about a week. But it was just a horrible day. He wouldnt lay down for the ultrasound. And because they are pretty detailed in checking for all abdominal cancers and not just the wilm's tumor it takes a really long time. He got so upset. I hope next time he takes it better. It was very stressful for him. So now we just wait for the results. Due to him being so upset we didnt do the AFP and will do that soon. Next ultrasound isnt for 3 months for the protocol so hopefully he will have forgotten by then.

Good news, Van had his jaw xrayed and it is almost completely healed, deposits have already started forming and the jaw is reconnecting. dr said it was good because it was just a small hairline fracture and was healing nicely. So he doesnt have to have his jaw rewired! so awesome news!

Well, Van got into a bit of an accidently recently. He was riding the four wheeler with his brother and knocked out his front tooth and hairline fractured his jaw. He goes back to re xray the jaw on march 12th. If the jaw isnt healing well. (which i think it is) It will have to be wired shut. So toothless and recovering and moving on like a champ. We have many test coming up to take before we got to the netherlands. We have a brain MRA/MRI, He also has to have his regular APF Bloodwork done, and his abdominal ultrasounds that we do every 3 months to check for Wilm's Tumor. X-ray's of his leg length difference need to be taken, and everything has to be current to send off to the netherlands so the doctors can be ready for us. We leave April 1st and will return April 12th. We are currently still fund raising BIG time. 3 more weeks to go and we are very very behind. As most of you know charlies hours were cut and he no longer works fridays. This really has put a strain on our 1 income family. But we do what we can. Anyway, We have a wonderful group of friends that have really pulled together and are currently trying and working on getting us the funds before we have to go. God Bless you all. As always if you would like to donate you can do so by PayPal on this site or Donate at any EVB Bank Thank You, Lisa and Charlie.

Well Van hasnt had any lesions in the past 3 weeks or so, so we are happy about that. He has had a few break outs but no pits in the skin as of lately. He got really sick for awhile and we are happy to report that he is back to his wild little self. He has begun saying sentences and putting very orginal thoughts together. currently he has quite the black eye poor thing. he was riding with his sister on a four wheeler and she slammed on the breaks and his face hit the handle bars. he cried more that i took him inside to check it out than he did for it hurting. he is one tough little guy for sure. I wanted to say thank you to Kimber and Nai which have really been there for our family lately and I am so happy to have found her. She was a childhood friend from high school that we just recently reconnected. She too has a special needs child and has been a true kindred spirit. I would also like to thank Carrie because she is going to help us get the word spread a bit more about cmtc. We hope that one day a doctor will be able to look at a child and know what they are looking at. we hope that they will be able to properly educate the parents of the potiental risk of cmtc and not depend on the google system and out dated information. We hope that if not for my child but my children's children that one day we can explore new discoveries and have a USA based CMTC center for the children in the united states. God bless you all. We so appreciate your prayers. we know that your prayers are what have gotten us this far. all our love

Lisa

Hey Everyone!!!

On Monday September 1st we are having a cookout at our house, if you live local and would like to come you can call 804 201 3208 for directions. All money will be donated to Van's Medical Fund. For $5.00 You get a Cheeseburger or Hamburger a bag of chips a drink and fun day of activities. There is Horseshoes (two pits) a volleyball court, sandbox for kids, and face painting.

The day starts at 12:00 noon.

Tournaments are going to be set up for the horseshoe pit later in the day. 5.00 to be in the tournament. Winners split the pot with Van's medical fund.

We would love to see you there. Invite Friends!!!

We would like to give a special thanks to Ryan Gault for all his hard work in building the horseshoe pits and Greg and Tammy Robinson for allowing us to use their field for parking for the event and Krystal Johnston for setting up the face painting table.

If you need more information call 804 201 3208 or 804 201 3206 (Charlie or Lisa)

We are located in King William County in the city of Manquin on Dabney's Mill Road.