http://www.stbaldricks.org/participants/AmyMardjani
(Copy and Paste above in your browser)
As some of you know Kevin is going to shave his head for the above St. Baldrick's cause =) You can copy and paste the site in your browser and donate your tax deductable donation on our site.
We are so proud of him and Kevin is... well a little nervouse =) He has made his decision though. I keep asking him are you sure, are you sure? And he said yes. Above is a direct link to our St. Baldrick's site, you can make a donation there. I know I mentioned this before but St. Baldrick's has the most pediatric cancer research after our government.
I am so excited to be a part of this event. I am in charge of the chinese auction, so anything you can contribute if not monetary than a basket/ gift card/ your professional time. Anything is appreciated. If you want to shave your head please call me so we can get you registered and you can get sponsorships yourself. It's going to be a great family day. Local vendors have volunteered their time and food for the event. And a Hannah Montana impersonator is going to be there!! My sister is registered as a shaver because of her certification you can do so.
Pete's Haircutting here in Center Moriches is also lending a hand and Signature Homes.
Besides getting ready for this event we are getting back into the swing of things after our school vacation. It was so nice to not have to run around in the morning getting everyone fed, bathed and off to school. Ahhh... But it's back to the grind now.
We did accomplish alot though, Sean is officially potty trained =D I was truly blessed with the easist kids to potty train. We have also found our way back to our amazing library. It is so beautiful since the expansion it's nice one on one time with us. Puppet playing, puzzles and computer. We are going to register for the next events coming up and he will be attending Our Lady Queen of Aposles in September.
The freckles we were concerned about with Alec checked out to be okay. My friend Kim was telling me about Gorlins syndrome. I've been reading up on that also. Always something. But Gorlins leads to medulloblastoma. It comes back to genetics. A gene is inherrited by one of the parents and it can lead to brain tumors both non-cancerous and cancerous. Also mentioned Medulloblastoma. Well my time is up here, Sean;s speech teacher has just arrived.
Dates to remember:
March 20, 2010 at 12 noon Celtic Tavern St. Balrick's
April 18, 2010 at 8:00 p.m. Brokerage Comedy Club, Bellmore (Tickets onlt $20) This comedian was seen on Comedy Central and Saturday Night Live.. it's gonna be a whoot!!
http://www.stbaldricks.org/participants/AmyMardjani
Tuesday, February 23, 2010
Wednesday, February 17, 2010
So excited, Laurie my sister has volunteered to be a shaver at a St.Baldricks event taking place on March 20th at Celtic Crossings in Kings Park. So many locals have volunteered their time, heads and yummy pizza for the event =) You can Facebook me if you need more information. (Amy Carlin Mardjani)
Also, don't forget Comedy night for The Guardian Brain Foundation only $20 a ticket on April 18th. I will get some tickets and have them on the day of the St. Baldricks event. They are a big supporter on brain research and neurology. It will be so much fun I can't wait =)
Kevin even volunteered to have his head shaved =O I'm so proud of him. I was telling him about the event and he was all cool about it and said, I'll do it. I was shocked. He said its to raise money so Dr.s can find a cure for Alec and kids like him. Sometimes he just amazes me. I'm going to see if I can send a flyer home from the school.
St. Baldricks funds the most research for childhood cancers more than any other, with the exception of the Government. As you know I am big on research hence the reason I am a supporter of Kidsvcancer. I think it's great that St. Baldricks does this amazing research but brain and spinal tumors is where my heart lies for selfish reasons.
Alec has been really sleepy lately. Mark thinks he is coming down with something. Sleepiness is his pattern, but we will just keep a close eye on him. We have an oncologist appt. tomorrow and an orthopedic appt coming up also. We continue to be concerned with his head drop and rolling to the left. He picks it up when prompted but when not prompted he just lets it drop. Mark wants an extra support added on his wheelchair. which we will discus with the Dr.'s
He is handling his liquids a bit better. We have to have another swallow test preformed which I will discus at his oncologist tomorrow. He is not coughing as much. Still coughing but doing really well. But overall he doesn't take in as much liquids or calories that need to meet his needs. He just doesn't want to eat. His portions are next to nothing and then he wimpers he is full. It's hard to gage if he is just tired or truly full. We still drop an ng tube for hydration and have bumped up his tube feed now with PediaSure. He gets about 2-3 can a day which is about 500-750 calories added. He is just looking to skinny to me. Mark says he's fine but agrees on the supplements.
They of course are enjoying some time off from school. Kevin welcomes it.. LOL It's nice to have them home. I am going to get Kevin back into his DodgeBall playing through the Community Center. Center Moriches is just amazing, I can't imagine ever leaving here. It's just such a close town filled with caring people.
I'm still going through my own issues with my migraines and ear pain. It has gotten really bad and truly unbearable. The queasiness and well, I can't really put in words but just not fun. Mark is so supportive though. Kind of suffocating at times though. He pushes me to go to the Dr. but it's hard to find time for me to be able to do so. I am sure you parents can relate.
Well on that note I gotta run.
Take care.
Wednesday, February 3, 2010
Hello my friends =) Well we made it through Christmas and New Years. Alec continues to be stable. We'll take it. We continue to work very hard with him pushing him everyday, although he does get some down time. He still remains off high dose steroids and is just on a maintenance dose. We haven't had his cortisol checked in a while so I'm looking to do that and also have his crp checked again. We get that done in between MRI's; it measure if there is any inflation in the body, which in terms could be a sign of tumor.
I have joined the parent board of Kidsvcancer. I don't know how Nancy finds the time to do what she does but she truly is amazing. Kidsvs cancer is doing some awesome research with brain tumor tissue. I like to stay in the loop, it's an insurance policy for me. No surprises will ever be thrown our way. I had fun organizing the Kids Bowl A Thon with great assistance from Cans for Cancer.. THANK YOU GUYS!!! It's was a really good turn out and the best part was that Alec was involved. Pictures are posted on my facebook page. I was also very excited to hear that Guardian Brain is teaming uo with Schneider's for a Brain tumor support group. I think the kids need it to which is something I was discussing with Mary. Not so much as to sit in a circle and talk about their "feelings" but the younger gang, like Alec, Hannah, Danny, and our new friends Tanner. Can, well just be kids =) The supposrt group is primarily in Nassau but looking to come out here to Suffolk which is great!! They too are getting really involved with research and you know I am going to be all over that. Guardian Brain is having a fundraiser on April 18th at the Brokerage Comedy Club in Bellmore. I can't wait!! Tickets are only $20, you can call me/ e-mail or of course facebook me (Amy Carlin Mardjani) if you are interested let me know so I can start forming tables. It is going to be a fun night.. whoo hoo!!!
Good News... Alec's PA is expecting and having a girl. Alec laughs when I talk to him about it. I'm not exactly sure why, I guess he kinda thinks as Dr.s and those in the medical profession as such.. I guess they can't be parents if they are Dr.'s.. LOL not to sure what he's thinking but he laughs and that's all I care about.
He is doing great with his Dynavox (His touch screen computer device for communication) It is taking alot of time to tweak how he can use it, but he's getting there and is not objecting.
Alec really has a great team this year in school between p/t, o/t, speech, vision and of course Mrs. B (Buccos) Alec still can't tolerate anymore than a 9:30- 1:00p.m day I sometimes this he's just trying to get home to play the wii or x-box. His day is always jammed pack with therapies and even once home. I drop his ng tube for supplementing feedings and hydration. He has to ride his bike (motorized pedals), go in the stander, vibration therapy. It's non-stop.. but it's going to work I know it is. He gets a kick out of the vibrating mechanisms I attach on his hands for stimulation. I call hum a ladybug and he cracks-up. We try to get him into the pool for water therapy. He actually needs a flotation suit better than the life jacket he has. His life jacket is just to restrictive. We found one in the abilitations catalog we'd like to get him. We are trying to get him into see an orthopedist. We are concerned with his head drop and being that he had radiation to the spine we want his spine monitored as he grows. Also of course his hips and he is turning his left foot out. It's hard to explain. He has braces but without them on his position is really bad and to me has gotten worse not better. I was told thats what the braces are for, well duh I know that. I have an appt. in March =/ that was the earliest appt. I could get. His MRI's will be shortly after that. I can't believe it's peeking nearly 3 years since dx. 2 years left and I will feel better. I met up with another mom, Litia and her son was diagnosed at 3 with Medulloblastoma. He didn't walk for nearly 8 years he's 11 now and walks fine. She restored my hope and just thinking about that keeps me pushing Alec. She to of course said it's a lot of work, but look he's doing great and he is 11 now =) and still cancer free!!!
It's been along time since Iv'e seen Alec's wholistic Dr. she of course doesn't take our insurance. But I want to take him back. Alec has been stable with his supplements he's on now, but I'm wondering if their is more we can do to perk him up a bit. I'll keep ya posted on that one.
Kevin is doing well in school for the most part. We've had some concerns that we have addressed with his teacher and the principal and I'm hoping we are on the right track now. In September Sean starts pre-school... Holy cow, to even type that. He is still in Early Intervention but aging out of it. Being that he is turning 3 in April he will have to get his services through the school district. We are going through the evaluation stages now. I think we are going to send him to St. John's Catholic School for preschool.
Well sorry to cut this short but I have to go pick up cookie.
<3 Amy
I have joined the parent board of Kidsvcancer. I don't know how Nancy finds the time to do what she does but she truly is amazing. Kidsvs cancer is doing some awesome research with brain tumor tissue. I like to stay in the loop, it's an insurance policy for me. No surprises will ever be thrown our way. I had fun organizing the Kids Bowl A Thon with great assistance from Cans for Cancer.. THANK YOU GUYS!!! It's was a really good turn out and the best part was that Alec was involved. Pictures are posted on my facebook page. I was also very excited to hear that Guardian Brain is teaming uo with Schneider's for a Brain tumor support group. I think the kids need it to which is something I was discussing with Mary. Not so much as to sit in a circle and talk about their "feelings" but the younger gang, like Alec, Hannah, Danny, and our new friends Tanner. Can, well just be kids =) The supposrt group is primarily in Nassau but looking to come out here to Suffolk which is great!! They too are getting really involved with research and you know I am going to be all over that. Guardian Brain is having a fundraiser on April 18th at the Brokerage Comedy Club in Bellmore. I can't wait!! Tickets are only $20, you can call me/ e-mail or of course facebook me (Amy Carlin Mardjani) if you are interested let me know so I can start forming tables. It is going to be a fun night.. whoo hoo!!!
Good News... Alec's PA is expecting and having a girl. Alec laughs when I talk to him about it. I'm not exactly sure why, I guess he kinda thinks as Dr.s and those in the medical profession as such.. I guess they can't be parents if they are Dr.'s.. LOL not to sure what he's thinking but he laughs and that's all I care about.
He is doing great with his Dynavox (His touch screen computer device for communication) It is taking alot of time to tweak how he can use it, but he's getting there and is not objecting.
Alec really has a great team this year in school between p/t, o/t, speech, vision and of course Mrs. B (Buccos) Alec still can't tolerate anymore than a 9:30- 1:00p.m day I sometimes this he's just trying to get home to play the wii or x-box. His day is always jammed pack with therapies and even once home. I drop his ng tube for supplementing feedings and hydration. He has to ride his bike (motorized pedals), go in the stander, vibration therapy. It's non-stop.. but it's going to work I know it is. He gets a kick out of the vibrating mechanisms I attach on his hands for stimulation. I call hum a ladybug and he cracks-up. We try to get him into the pool for water therapy. He actually needs a flotation suit better than the life jacket he has. His life jacket is just to restrictive. We found one in the abilitations catalog we'd like to get him. We are trying to get him into see an orthopedist. We are concerned with his head drop and being that he had radiation to the spine we want his spine monitored as he grows. Also of course his hips and he is turning his left foot out. It's hard to explain. He has braces but without them on his position is really bad and to me has gotten worse not better. I was told thats what the braces are for, well duh I know that. I have an appt. in March =/ that was the earliest appt. I could get. His MRI's will be shortly after that. I can't believe it's peeking nearly 3 years since dx. 2 years left and I will feel better. I met up with another mom, Litia and her son was diagnosed at 3 with Medulloblastoma. He didn't walk for nearly 8 years he's 11 now and walks fine. She restored my hope and just thinking about that keeps me pushing Alec. She to of course said it's a lot of work, but look he's doing great and he is 11 now =) and still cancer free!!!
It's been along time since Iv'e seen Alec's wholistic Dr. she of course doesn't take our insurance. But I want to take him back. Alec has been stable with his supplements he's on now, but I'm wondering if their is more we can do to perk him up a bit. I'll keep ya posted on that one.
Kevin is doing well in school for the most part. We've had some concerns that we have addressed with his teacher and the principal and I'm hoping we are on the right track now. In September Sean starts pre-school... Holy cow, to even type that. He is still in Early Intervention but aging out of it. Being that he is turning 3 in April he will have to get his services through the school district. We are going through the evaluation stages now. I think we are going to send him to St. John's Catholic School for preschool.
Well sorry to cut this short but I have to go pick up cookie.
<3 Amy
Subscribe to:
Posts (Atom)
