Andrew Aidan, Our Fighting Warrior!

Andrew Aidan and his dog Beemer have been the pride and joy of their parents, Michelle & Roi ever since they were born. AA loved to take walks outside, play with his best friend Beemer and his Thomas the Tank Engine set of toys along with any other plane, helicopter, car, truck toy he can get his hand on. For those that have met him, they saw the soul of a mature adult in the body of a sweet, loving boy with a beautiful smile. He bravely battled an aggressive, inoperable, rare form of brain tumor called Atypical Teratoid Rhabdoid Tumor or AT/RT that spread to his spine as well. This type of cancer effects less than 50 children a year in this country. He has been an inspiration to us and we are sure he will be a vessel of motivation to those in similar situations. Thank you God for protecting our boy!

Thank You!
Andrew Aidan (R.I.P.) , Michelle (Mother), Roi (Dad) & Beemer

Wednesday, August 31, 2011

I can't wait until my son is no longer neutropenic. I cried all morning as AA laid on the bed for 3 hours watching cartoons not moving much as he looked so weak. After his 3 hr nap he woke up with a little more energy. Took him for a walk with my sister and got to see my mother and brother in law...so glad they got to see AA...they missed him so much.

Tuesday, August 30, 2011

AA had a good day yesterday and today :). Went to Sloan today....no transfusions needed :) But is completely neutropenic :( Germs stay away from my son!!!

Sunday, August 28, 2011

Since AA is stable he doesn't have to go to Sloan tomorrow....yeah we have one day off...wish my hubby was off from school but at least he was off this weekend and we all got to spend it together :)

Saturday, August 27, 2011

Before my son got diagnosed I was the type of mom that didn't allow him to eat fast food, any type of junk food including candy, or even juice (besides his one cup of OJ for breakfast) today he ate a cheeseburger with fries, apple juice (from Mc Donald's) and a lollipop and I am the happiest mom to see that he enjoyed his lunch without throwing up.  The nutritionist said that during the week of chemo allow him to eat whatever he wants and so I do :)


Friday, August 26, 2011

AA had a rough night with nausea then when I gave him anti nausea medicine and he threw it all up ;( At Sloan now waiting for chemo to start...threw up here again so they just gave him medicine by IV...his happetite has also been bad the last 4 days :(

Thursday, August 25, 2011

So happy to be finally home after 1 long week at the hospital....AA tolerated the blood transfusion well today and now is running around the house touching and playing with everything in sight....he looks so happy to be home again. Beemer is also happy to have join us at home as well:)
Ok...so there is a delay in discharging AA home...he will need a blood transfusion...they are premedicating him now :(

Wednesday, August 24, 2011

Yessssssss!!!!! Chemo with rescue drug is finally over and AA had no allergic reaction this time....God is good :) IV Fluids tonight and lots of blood work tomorrow then home by the afternoon....I hope :)
AA is resting comfortably right now as they started the rescue drug....will be staring at him as I pray for the next 8 hours
Getting a little nervous as we wait for AA to get his last chemo for this admission. Since he had such a severe reaction (anaphylactic) to the rescue drug the last time...they are setting up emergency equipment in his room, and they are premedicating him to try to prevent any reaction. They decided to keep him until tomorrow afternoon just to make sure he is ok for 24hrs after receiving this med. Then back on Friday for outpatient chemo and home this weekend.
Bonding with my dad as we both donate blood for our favorite little man...we love you AA!!!

Tuesday, August 23, 2011

AA tolerated chemo like a champ today...didn't eat breakfast or lunch but at least he hasn't thrown up, drank 3 bottles of milk, and made it up with a good dinner :)

Monday, August 22, 2011

Central Line is in his left upper chest area and correct placement was confirmed ...first chemo just started now.
I am a big ball of mess as my baby went to get a central line placed and the Broviac removed :(

Sunday, August 21, 2011

After crying for hours I have no choice but to accept the fact that Sloan does not carry the proper equipment to fix my son's Broviac so now he will need two surgical procedures. The first one will be tomorrow to place a temporary port then in a couple of weeks to place the permanent one.
What a night.... I haven't slept since AA woke up at 2 am and went back to sleep at 4 am where he was immediately woken up by his nurse....long story short his Broviac (where he get chemo,IVF, blood work) is not working....they put a temporary line in his hand which already fell out and Surgery was called to see if they can fix it....I am sleep deprived and now freaking out about possible surgery to put a new Broviav in...so stressed.

Saturday, August 20, 2011

Had a good day although for the past couple of hours his body temperature is on the low side so they are checking it more frequently....snuggling next to him giving him body heat and praying it is nothing.

Friday, August 19, 2011

As I snuggle next to my baby I thank the LORD for a great day...1st day of chemo over and he has not vomitted once...the anti nausea meds are actually working so far :)

Thursday, August 18, 2011

As I watch my son having fun with his BFF and all his cars....I can't help to break down....I am hurting so much now as I know what a rough week his has a head of him....I haven't broken down like this in almost 2 weeks....GOD please help me be strong for my son that needs me.

-Michelle

Wednesday, August 17, 2011

AA passed his hearing test today (yes chemo has not affected his hearing) and he is no longer neutropenic so his BFF comes home tonight (see u after your bath Beemer) 2nd round of chemo got delayed until Friday so we get to enjoy both of our boys tonight and tomorrow all day :)

Tuesday, August 16, 2011

Another great day at home resting before the storm because cycle 2 of chemo starts tomorrow. Blood test and hearing test before chemo. Looking forward to the end result.

-Michelle

Monday, August 15, 2011

AA is still neutropenic so have to give him an injection in his leg today and tomorrow to bring up his levels :( The good news is that he has not lost any weight and ONLY 10-20 percent of children receiving chemo actually grow...AA grew an inch...that's my little man :)

-Michelle

Sunday, August 14, 2011

Sunday!

An other good day at home. AA was really happy today and being real playful. He ate well, probably the best since we have started this chemo therapy. So happy to have our little boy acting like his normal self. We love you...

Saturday, August 13, 2011

Saturday

AA had a good day today! Was walking outside with Dad on his own and also walking all over the house as well! His appetite is almost where it used to be and we are trying to get him as heavy as we can before the 2nd round of chemo starts on Wednesday! We are happy to see him like his old self ! 

Friday, August 12, 2011

AA's blood pressure was VERY low during the stem cell collection so they stopped it until they got it to be stable and then was able to be finished. Unfortunately, they were not successful in collecting enough stem cells so AA has to repeat this in one month :( He also needs a blood transfusion today :( On a positive note, he was a champ during both procedure :)

-Michelle

Thursday, August 11, 2011

Today couldn't have ended any better. AA did not have any reaction to the platelet transfusion, his kidney test showed that the chemo has not affected his kidneys, and he started to walk on his own again... LORD you have blessed us with a fabulous day!!!

-Michelle
They will collect AA's stem cells tomorrow for future bone marrow transfusions so genus getting platelet transfusion nowto boost him up for tomorrow's procedure... they pre medicated him to decrease the risk of having a reaction to the platelet transfusion...praying he does well.

-Michelle
Today's MRI results are GREAT!!! Brain surgery for the hydrocephalus is still working and the tumor is already shrinking...THANK U LORD for not abandoning us :)

-Michelle

Wednesday, August 10, 2011

Your Help Is Needed

Thank you so much to those of you that have helped us to date! We truly appreciate the support!

Enjoyed AA's day off yesterday as he walked a bit more and had fun at Astoria park watching the skaters fall down. At Sloan now waiting for the nurse to give him chemo :( At least he doesn't need any transfusion :)

-Michelle

Tuesday, August 9, 2011

Today was an exhausting yet positive day. Started with Father Jack coming to our house and give AA and us a special blessing. (Finally felt at peace with God) Arrives at Sloan where AA got blood work (did not need blood or platelet transfusion although he is still neutropenic) Got a CT of the head done (showed surgery is still working) By the time he was evaluated by Neuro, he was already starting to walk on his on (they suggest a repeat MRI later this week to determine the cause of his symptoms on Sunday).

-Michelle

Monday, August 8, 2011

Sat was an ok day for AA didn't throw up once and started to eat better :) Sun started odd the same until I realized that he couldn't walk again and started to have sunsetting eyes again, cried all morning and afternoon then made the clinical decision to remove the ace bandage from his head and switch his neurologist from LIJ to Sloan. I need all of AA's doctors to be on the same page in order to provide our son the best quality of care.

-Michelle

Friday, August 5, 2011

Happy to bring AA home today...did not need any blood or platelet transfusion BUT so sad that he is now neutropenic (has zero immunity to fight off any infections). Praying to GOD he does not come down with a fever or an infection...do not want him to get admitted to the hospital...he is so happy at home....LORD please help us!

-Michelle

Please Help Andrew Aidan!

Leaving the neurologist office with a smile...AA does not need a shunt for now (praying he never needs one) just need to have his head wrapped with an ace bandage for two weeks which should resolve the fluid collection in his forehead. :)

-Michelle
AA had a good day yesterday...only vomitted one time and took all his meds :) At the neurologist now...I pray to God that everything goes well here then headed to Sloan to see If AA needs a blood transfusion...I pray that he does not

-Michelle

Wednesday, August 3, 2011

We are sooooooo happy to finally bring our son home after receiving chemo today. He is so happy to be home as well...can't stop smiling. He is going nuts playing with all the new cars his God Parents (Frank & Kathy) brought him..thank you guys for putting a smile on his face.

-Michelle
The biggest luck we have had with this whole ordeal is that her great medical sense caught the tumor in its very initial stages. I love her so much for that.
Very thankful for a beautiful day of life that allows us to continue this fight for AAs life. Very thankful of my wife for being such a great practitioner
Today was an ok day. AA only vomitted once and his Neuro Opth appt went well. MRI results was not not bad nor good....ugh! Results are being sent to AA's Neuro Surgeon in LIJ and an appt was set up for this Fri after it is compared to his previous MRI. (praying really hard)

-Michelle

Tuesday, August 2, 2011

Please Help Andrew Aidan!

Positive energy=Positive results=beating the hell out of cancer.
In human nature there are people that settle . Settle for what life gives them. Against cancer you can not settle. You Fight until you get your way. Never quit
Yesterday was a better day for AA. Two new chemo were given and he did pretty well. Had a little reaction to one rescue medicine but doctors figured it out.
Good morning. Today we stand up once again to fight against cancer. It invaded our family a month ago and we look forward to the day when we are the victors.
Today has been one of those long days that all I did was cry. It started off this AA's Neuro Surgeon requesting an immediate MRI because there is a possibility that one of the brain surgeries done on him is no longer working and therefore if it is true,he will go back into the OR to have a shunt placed, to help drain the fluid in his brain. MRI is scheduled for tomorrow at 10am. Then AA ends up having a bad allergic reaction to one of the medications that was given to him. This medication was not one of the chemo meds but a rescue med (medication to preserve his kidney and other organs) being that he really needed the doctors chose to premedicate him with all these other meds to prevent another reaction and 30 mins later start the rescue med again

-Michelle

Monday, August 1, 2011

Thank You For Spreading The News!

We appreciate the sharing of AA's condition as we strive to help him and the other children with this condition!
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Sunday, July 31, 2011

Please Help Andrew Aidan!

Technical Difficulties

Family Pictures @ Sloan



Roommate Issues

AA had an ok day with chemo day 2. He ate extremely little and threw up one time so far. So glad I have not left his beside as I had to advocate for our son today. I found out his roomate had pneumonia...so I flipped out and made sure she got taken out of our son's room immediately.

Weekend at the hospital

As ok as I can be...AA and I have not left the hospital since Friday morning....he just received his chemo again today...waiting for his lab work to come back before he gets the second one.

Saturday, July 30, 2011

Not Bad after a Chemo Day! This Kid Is One Tough Cookie!

Watching Bob
The Builder
And He's Off!
The Wheels on
The Bus...

36 minutes ago via Facebook Mobile 

Feeling Happy!

Feeling happy...AA had a good day today :) He had chemotherapy and although his appetite is not great, at least he has eaten and has not thrown up since yesterday.

Looking brighter!

AA has not vomited since yesterday....poor baby is on 3 different anti nausea medications around the clock....I hope it continues to work as his chemo went up 30 mins ago

The LeGar Family

Sleeping With Dad
Watching TV in My Room with My Mom
My foot rest!
July 15 at 9:26pm via Facebook Mobile









Has never lost his smile...was on the way to LIJ emergency room...July 3rd


Best Friends For Life!


Loving my new hair cut


Love my 3 boys!!!


AA enjoying a lollipop his grandma Yvette sent him


Feeding himself lunch :)

Feeding himself lunch :)

Andrew Aidan Happy To Go Home!

Andrew Aidan Happy  To Go Home!

July 26 at 9:32am

5 hours ago via Facebook Mobile

AA has not vomited since yesterday....poor baby is on 3 different anti nausea medications around the clock....I hope it continues to work as his chemo went up 30 mins ago

15 hours ago via Facebook Mobile

AA didn't have such a good day yest....threw up all day despite the three anti nausea medications he received. I couldn't help to break down as I saw my son so weak and helpless. Then got admitted last night at 7pm...they decided to medicate him around the clock with the 3 anti nausea medications since he will get chemo again today. He is now resting comfortably next to me as I am praying he has a better day tom.

Bob and Baby Bob; Thursday at 11:57am via Facebook Mobile

Bob and baby bob

Thursday at 3:14am via Facebook Mobile

Note to self: make sure to get some rest no matter what time AA goes to bed. So it's 230 am and AA is up and ready to play...although I have only slept 2 hours I am overjoyed to see him walking around and not throwing up.

Wednesday at 7:41pm via Facebook Mobile

We finally got discharged from the hospital but he got sent home on IVF because of all the vomiting and diarrhea he had...3 blocks later he starts to vomit and have diarrhea again...Need to get home ASAP to give him more medicine....I am so trying to be strong but it is not working right now

Wednesday at 5:57pm via Facebook Mobile

Should of been on our way home by now BUT our poor baby has not stopped vomiting...7 times so far, diarrhea twice and 3 medications against nausea and nothing....hoping one of the medicines kicks in soon....it's breaking my heart seeing him so weak and pale looking

Wednesday at 11:25am via Facebook Mobile

Freaking out....nurses are double checking AA's chemo to be given now

Wednesday at 8:46am via Facebook Mobile

On our way to Sloan...Have to be there at 9am so that means our baby should get his first chemo treatment btw 10 and 11 :)

Postings From Last Week!

Hello everyone,
Just wanted to let you know that we will be posting some updates from earlier in the week that were not posted earlier due to technical difficulties. Thanks for the support and thoughts! We are very grateful for all! You have all been truly Amazing! God Bless!
Roi
The only down fall is that he will sleep alot. He is currently sleeping and he also had some Food today as well. Dad
My little man is doing really good so far. His body is really getting the toxins out of his system quickly. andrews dad

Today starts a new round of chemotherapy. We are optimistic that it will do it's purpose and hope there are not too many side effects that bother him

Good morning!

Wednesday, July 27, 2011

Freaking out right now....nurses are double checking to hang AA 's chemo now

Tuesday, July 26, 2011

To all our friends and family that have reached out to us....we love u...we are now headed to Sloan as our son starts chemo today at 930am

Monday, July 25, 2011

AA passed his hearing test :) Doctors gave us the choice of starting chemo today or starting it tom and involving him in the research protocol to make a difference to other children that may be affected by this horrible brain tumor....we choose to make a difference and so we are on our way home and will be back tomorrow for the chemo.

-Michelle
We are so nervous and scared as we now head to Sloan for a baby's 1st chemo infusion...hubby decides to ask AA who is your dad, he replies,"BOB" lmao apparently bob the builder is his daddy...moments like these are priceless

-Michelle

Sunday, July 24, 2011

We took our son to the Queens Zoo. Not sure how but our pictures got deleted from our camera.. it is ok because AA had a BLAST!!! We also went to church and our priest have Roi, AA, and myself a special blessing as we begin the journey tomorrow in the fight against this ugly disease...so please continue praying for us especially for our precious little one.

-Michelle

Friday, July 22, 2011

AA is doing well today walking a lot better, practically running. As for myself and my husband.we didn't do so well today. I broke down all morning and afternoon and my poor husband broke down at dinner time :(

-Michelle

Thursday, July 21, 2011

A spinal tap, lots of blood work, an echo and a kidney test was done today....9 hours later we leave Sloan happy because we saw AA walking around on his own today with out holding on :)

-Michelle LeGar

Wednesday, July 20, 2011

AA is doing better than his parents..as he gains he confidence back and is starting to walk again on his own. Neuro appointment today went well. he got his staple removed from his head and although his neurologist said he is not out of the woods with the Hydrocephalus situation until the tumor is completely gone and not causing an obstruction...he looks and is doing good considering he had major brain surgeries less than 2 wks ago. Tomorrow AA undergoes a spinal tap and blood work with a possible kidney test. We will also talk about his chemotherapy treatment and we need to speak to a social worker for financial help as my hubby is not working, was a full-time student until this occurred and now I on FMLA for 3 months yet I am not getting paid because it is my son that is sick and not me (can't we get a break) all we are trying to do is be there for our son. Monday AA has a hearing test and shortly at beginner his chemotherapy will begin. His treatment will be Mon-Fri

-Michelle LeGar

Tuesday, July 19, 2011

Thank You Letter

Hello Friends and Family:

As many of you may have experienced throughout your lives, life is full of unexpected events that forever change the way we live our current lives and future. Such an event happened to us recently when our loving son Andrew Aidan was diagnosed with a rare inoperable malignant brain tumor. Never in our minds would we have ever thought that something like this would have happened to such a loving, sweet, intelligent young man that truly enjoys life. We have experienced every possible emotion a person can feel when given news of this nature. While living this nightmare on a daily basis, we have had the blessing and fortune of having some very special people support us through every step of the way. In particular, our parents, grandparents, siblings, cousins, Aunt Linda M., Andrew’s God Parents, Frank & Kathleen Rotondo, Veronica L., Wei C., Lissette M., Ronald McDonald’s House of Long Island (Thanks to Matt Campo & Brian Adames), Barclays/Bloomberg/Take Care Health Employees, Pace Alumni & Faculty, ATP Faculty & Students, Garden Bay Neighbors and extended family and friends. We have seen many old friends reach out to us in support and have made some new friends who have really shown their unconditional support of helping Andrew Aidan defeat this diagnosis. Some have reached out via email, face book, phone calls, in person visits and via text messages. We truly appreciate it all! Please do not take offense if we have been slow to respond but it has been an extremely painful experience to relive every day while we tend to his current medical needs as he still recovers from recent brain surgery. We truly appreciate the well wishes for a speedy recovery for Andrew Aidan.

We are very positive and believe that he is in the right hands, God's hands. We pray that the doctors at Memorial Sloan-Kettering Cancer Center will do everything possible to help us in curing AA, as we like to call him. We have had the amazing honor of calling Andrew Aidan our son for the past 19 months and will be extremely honored to continue to do so once we have totally destroyed this disease from his body. His spirit for life has been astounding and his resilience truly admirable. He is a very strong young man that fights for what he wants and this will prove extremely valuable as we fight the biggest battle of our lives together. A hard battle that will require much sacrifice, but we will win and Andrew Aidan’s experience will help to inspire new stories of hope and victory in the future through his living testimony of being a Cancer survivor.

Thank you so much for holding us in your thoughts and prayers. We truly value you thinking of us and wish that you receive that wonderful positive energy back in your lives soon. Please remember that the lives we live are so short and fragile and can vanish in a blink of an eye. Appreciate your life for what it is and make it better, love those around you with passion and conviction while striving to be a better person to yourself.

We will provide updates to our battle with Cancer on a frequent basis through the following website:

www.Andrewlegar.blogspot.com

We wish you nothing but the best! Thank you!

Andrew Aidan, Michelle, Roi & Beemer (Our Dog/Andrew Aidan’s Best Friend)