Happy 2012 To All

2011 was not our best year, in fact it was our most difficult. Thankfully it is coming to an end and taking with it all negative experiences. We truly hope and pray that it will be a great year to all and that we may find the precious gifts of life, health, happiness and peace in 2012 and above all a cancer free Andrew Aidan. Love you all.
Roi

Blood Transfusion Miscommunication

Afterr many phone calls we found out that the blood we donated was given to 2 other peopel. Although we rather some else use it instead of it going to waste we got the wrong information, which is so annoying. We were told that the blood we donated would be held for 30 days for AA and if not used within that time then it would be dispensed to someone else,today we find out that they only hold it for 23 days. If we would of know that we would of have our friends and family donate last week...grrrrr. Anyway AA is now getting his blood transfusion and looks better than yeaterday.

Transfusions

Up since 5 am since AA's platelet and blood count drop again so now he needs 2 transfusions. Platelet is being given now and they are trying to find the blood Roi and I donate for AA so they will give him that transfusion later on in the morning....when they find it. Going to leave the donor room a "nice message"(being sarcastic) to make sure they find it ASAP.

Rough Day

Getting use to crying myself to sleep every night again as I recap on the day events. AA's MRI showed that the spinal fluid flow between his brain and spine is not normal because the cancer in his spine got a little worst. This means he will not be able to get chemo directly into his spine instead he will continue getting it through the port, he developed a fever one time today, he finally had no diarrhea but has an eye infection as I brought it to the doctors attention, lastly the mucositis/mouth sores are so bad that he can't even swallow or talk properly, his cheek are swollen and his neck glands as well. Crying hysterically as I beg GOD for the same miracle every night.

Waiting for Our Warrior

Waiting for AA to come out of his MRI. He should be coming out any minute. Today was a two hour event because they were doing both brain and spine. Generating only good vibes for the results which will be positive all the way. Its human nature to want to have the most direct path to our desired destination but the detours and delays give us a chance to appreciate the scenic part of the trip that we would otherwise miss if we took the expressway straight there. Positive, positive, positive.
Roi

Prayers Are Needed

Just found out that both of AA's port were infected :( the good news is that the antibiotic he is on seems to be working :) AA just went to get an MRI of his brain and spine...needing all the prayers in the world for his results NOT to show an obstruction. Spoke to the doctor about starting him on a medication to protect the lining of his stomach since he is not eating, drinking and has diahrrea and they FiNALLY agreed.

Infected Port

These people can't make up their minds....now the doctors are saying that the port is infected...feeling like a yo-yo.... so frustrating.

Possible Obstruction

Not sure how much bad news we can take but just received a call from AA's doctor who said the repeat Flow Study showed that there is a possible obstruction between his brain and spine. They are trying to schedule an MRI ASAP...our heart are aching but continuing to pray and not losing hope.

No Infection In His Port

Just spoke to the doctor and now they are saying that AA DOES NOT have an infected port. They believe the 1st culture they did was contaminated by the person who drew it bec the other ones they did are negative which makes sense since he has never ran a fever. They said they will still give him antibiotics as a precaution.

Infected Port

Just got an update from my hubby...AA has an infected port...poor baby :( They just started him on antibiotics, at least they found the source of the issue :(

Update

Last night was a little rough as AA had diahrrea 2 times and threw up once. He also woke up 3 more times because he was nauseous. They have been giving him his nausea med around the clock again so hopefully today will be a better day. His Co2 levels are better but his potassium level has now dropped, he is also completely neutropenic (has no type of defense) BUT at least he is not running a fever. The other results are not in yet hopefully they will be in this afternoon so we get some answers to what exactly is going on. I am really praying that it is only the diahrreaHe/vomitting/not eating that has his levels wacky. AA can't eat this morning since he has to get an MRI today so it makes no sense for me to call out sick from work if I can't be with him since all he wants to do is nurse when I am around and he can't until after the test.

AA is being admitted

Crying my eyes out....on my way to Sloan as my little baby never made it back home. He lost so much weight this week you could see his rib cage sticking out and his spine as well....cried myself to sleep last night after I gave him a bath and put him to sleep, hubby broke down as he explain to AA's doctor that he was not eating at all...it hurts us sooooo much to see "our gordito" so skinny and not eating at all for a week now. Was told by the doctor that AA has mucositis and believe that is the reason why he is not eating. His blood pressure was very low today and his carbon dioxide level as well, they hoped it would get better by the end of the day but instead it for worst. They are admitting him as they run many test on him to make sure it is not his kidneys getting messed up or an infection. Begging God to help us through this as I approach Sloan now.

Thank You To The NYPD

Thank You NYPD ESU West Side!

I just want to take a moment and say thank you to the officers that helped us out today when I locked Andrew Aidan in the car while he was in his car seat. I went to open the doors on our loaner car since ours is in the shop again and did not realize that the loaner has a different locking set up than ours and instead of opening the locks I closed the locks and locked myself out while he stayed inside the car. Thankfully he was strapped in his car seat and was not that bothered and eventually fell asleep. I want to thank PO Colon and PO Mitre from the 20th Precinct for their help they really got the Emergency Service Unit (ESU) to us in less than five minutes and calmed us down as they got into the car in less than a minute. As you could all imagine Michelle wanted to kill me because we were at the Vet for Beemer because he caught a bacterial infection (she was worried about that), I had to ask a total stranger to use his phone because I left my phone in the car, not to mention the scene of people that quickly surrounded the car and took videos on the corner of Amsterdam & 83rd Street. Leave it to me to create a scene. I could not believe it. You could imagine how the ride home went. I apologize to my AA and my wife. Sorry and I love you guys!
One Embarrassed Dad
Roi

Christmas Day 2011 Set 3

Beemer, snack attack!

Good Boy!

Christmas Day 2011 Set 2

Christmas Day 2011 Set 1

Christmas Gifts 2011 Set 2

Let me wash my hands

Thanks for the train set grandma

Beemer let's open these gifts!

Christmas Gifts 2011 Set 1

Roi & the Boys with Grandma, Grandpa & Tia

Michelle, AA & Beemer with Grandma, Grandpa & Tia

One egg, sunny side up comin' right up!

Let me call Papa and ask him for the recipe.

Merry Christmas To All-Feliz Navidad A Todos

Christmas is Believing!

We wanted to take a moment to wish everyone a Merry Christmas this year. We truly appreciate the help, prayers and well wishes we have received from everyone. We hope that the Spirit of the Lord be with you today and during this Holiday season and may you enjoy your time with loved ones. Christmas is the day that soo many celebrate the birth of Jesus Christ as do we, and it is a festive occasion if that is your belief. For us Christmas is also a great opportunity to remember, regardless of Faith, that everyday is a new beginning. I by no means consider myself to be a holy man, but I do believe in the wonder of the spirit and in the beauty of our soul and it is this eternal beauty that we all posses that we should always cherish for it can change the course of our existence. You can make everyday to be your personal Heaven on Earth, no matter what adversity you may face. It is something that we try to do everyday as we walk through our journey with AA, he has shown us not to be afraid but to be brave, hopeful, loving and to believe in the "impossible". It is amazing how he has helped us to cherish life more and get closer to our spiritual purpose everyday. We truly wish that you fight to make your life happy and worth while. Enjoy the things you do and love those special to you. May God Bless you all and  may this day and everyday be filled with happiness, purpose and love. Thank you all for your support!
Merry Christmas & Feliz Navidad!

The LeGar Family
AA, Michelle, Roi & Beemer

Merry Christmas to All!

Home Sweet Home

Thank God we are home. Ready to enjoy some down time and enjoy AA. He is doing really good and is taking his nap now. Thanks for the prayers. Glad to be home.

Roi

Our Little Hero Is Even Dancing

Our Champ Is Walking Again!!!

Friday-Day 5 Progress Note #1

This was us last night...Aghhh

Well good morning everyone,

I have to say it is a great morning given that AA has been doing good given the circumstances with all the "medicine" they are giving him. My wife and I are happy that he is fighting so hard everyday. I have to say that we are happy that we are giving him the same happy, loving and positive environment we were giving him before. Any day we have AA up and doing pretty well is a great day. On another note, last night was a pretty crazy night. Due to our roommate and his mother being so inconsiderate (bright lights on while sleeping, loud tv, loud phone conversations, opening and closing the door loud and more ) AA woke up three times while trying to sleep. The third he woke up at about 11pm and didn't fall asleep until 3pm when I bribed him with some Bob The Builder. After a couple of episodes of laughter and chuckles I was able to convince him to sleep and he just woke up at 8:30. I am glad that he slept but we did not get much sleep because we needed to change his diaper every hour for urine tests. If any one has an old school boom box please drop it off for us tonight I am in the mood for some revenge tonight. Just kidding.
Have a great day.

Roi

Roommate Issues

AA had a good day...although he is not eating or drinking...he didn't throw up or have diahrrea which is definitely a plus. We also almost made it through the week with no roommate until today. Feeling pissed off as AA's roommate (8 y/o male) has woken him up twice as he is yelling over the phone. running in and out of the room slamming the door with all the lights on and tv blasting. The worst part is that the mother does not say anything knowing my son is sleeping, meanwhile it is 1130 at night....hellooooo have some consideration...this is a hospital not a hotel!!!

Christmas Photo At Sloan

Day 3 Update

What a day full of ups and downs. On a good note, AA had no vomitting or diarrhea today, still eating and drinking even if it is a little, although he was napping during Santa Clause visit he left him a big nike bag full of toys, AA was also was napping during the carolers visit but they took a pic next to his bedside,we also took a professional family pic. On a not so happy note, AA is not walking on his own since yesterday, we also found out that the Spinal study they did yesterday/today was done wrong and now it must ALL be repeated again next week which means he can NOT get the chemo injected into his spine tomorrow. Really sucks cause now he will not only have another lumbar puncture and be put under anesthesia 3 more times but also have to be admitted again probably in two weeks to get the chemo. Trying to look at the positive of this and realize I rather they have messed up than to have something more wrong with AA's spine and besides at least we will be home for Christmas since he will probably get discharged on Saturday if all goes well.

Day 3

Our little hero did greatest last night although he had diahrrea 3 times from the chemo yesterday, he had no vomitting and so slept through the night :) He is under anesthesia right now for an MRI, glad it is being done early so he can come back to his room and eat and play.

AA's Day 2 Progress Video

Hello everyone,
Just wanted to post a nice video of AA playing with some toys that he was given today by Allison his Child Life specialist at Sloan. She has always been so nice to him. He is doing pretty well this time around when compared to the other two times we were in the hospital. It makes our day to see him be himself and just re-affirms our belief that he is going to beat the odds and be one of the survivors of this type of cancer all with God's grace and help. Sometimes people say "all will work out, if God wills it" but I believe that God does will for us to live a good, happy, healthy life. We are confident that he has beaten this already through the power of the Lord and positive thought. Enjoy the video and thank you for the love, positive thoughts and prayers.
Roi

Day 2

AA had a peaceful night...he already had the lumbar puncture this morning where a dye was placed to make sure it flows properly. He did great he even helped the doctors give himself the propofol (the anesthesia) by pushing it into his line...such a good boy, didn't complain or cry once. He still is not allowed to eat yet (4 more hours) until he get anesthesia for an MRI to see how the dye they injected is working. After this chemo begins again for 24 hours.

Update

After a long morning and afternoon in the outpatient setting AA got all his meds to prevent the severe reaction he had the last time from the med he is getting now, he also got all his meds to prevent him from throwing up. We are finally setting in his room and so far so good....he has not have a reaction, no throwing up and he is even eating dinner...AA is a happy camper making mommy and daddy happy as well....love u all for your prayers and positive thinking.

Building Up Courage

With positive thoughts as we look into AA's smiling face we build up courage as we approach Sloan. Our little hero gets admitted today to begin chemo ASAP.

Tough Decisions Tough Times

Yesterday was a tough day for one reason. We had to make a very hard decision regarding AA's next phase of treatment. Due to the recent development of cancer spreading to 2 places in his spine we had a meeting with AA's doctors to review 3 possible new treatments. There was one treatment that made more sense to us and we hope that AA will see that as well one day. It is an extremely dangerous path to take because it can cause many severe side effects to our boy. Long term side effects. We believe it offers that most aggressive option to beat this cancer, not keep it down temporarily. This cancer has no remorse for anyone and why should we have any for it. It will not claim our little man. The treatment requires intense chemo with very frequent testing along with chemo placed directly into the spinal cord area through frequent spinal taps. It will be hard to get through at times, we will probably see some dark days before we see the light but we believe that we will see that light together as a family. We thank everyone for their support and would like to thank Dr. L and Dr. G from Memorial Sloan Kettering for caring so much and for their support, understanding and efforts. We appreciate having them on our side. We are on our way towards beating cancer for AA. Together, united, strong and faithful with courage and love we committ ourselves once again to the greatest purpose of our lives, saving the boy and man that is our life, AA. We love you my son and we wont back down. Thank you everyone and special thanks to the Lord for his love and guidance in caring for AA.
 
   "The road of life twists and turns and no two directions are ever the same. Yet our lessons come from the journey, not the destination."
                             
                               and

"When somebody challenges you, fight back. Be brutal, be tough."

Courageously,
Michelle & Roi

More Bad News

Trying so hard not to be angry with God...trying so hard not to lose hope...but at a time like this one it is extremely hard as not only did my miracle NOT come true today but we got MORE bad news instead. AA's tumor in his spine had grown a lot in one week, so much so that now his MRI of his spine also shows it. There are 2 places on his spine where the tumor has spread and now he can not start the chemo he was suppose to receive. They are not even sure where to go from here so much so that they said we can get a second opinions if we like. AA's case will be discusses today amongst many specialist in order to see where to go from here. Whatever it is, it has to be done fast as this is growing so quickly. We will not be answering calls from anyone as you all can imagine we have been hit with such devastating news and although people mean well, so many questions are always asked....questions where right now there are no answers to.

Waiting

Waiting for AA to come out of the MRI. They just went down to get him and bring him up to the procedure room for the Lumbar Puncture. He was very playful this morning and actually did not cry or complain once this whole time. I was actually surprised how calm he was as we entered the MRI room. As usual he is doing his part and being as strong as ever. That is why we are doing our best to be positive and strong, so he can copy what he sees and be stronger, happier and positive as well. Will keep you all updated.
Roi

Sitting in my cold car waiting for the car to get towed while my hubby left with AA to Sloan. Although I am very sad that my baby is going under anesthesia TWICE today to repeat the MRI of the brain and spine and to have the Lumbar Puncture done again I am praying with all my might for my miracle to come true.

What a day...started with our car not turning on, now it has to get towed, we got to Sloan one hour late so the parking lot was full, AA had to get blood work, kidney, hearing and his heart test done again since he didn't start his chemo on time...it hurt me so much to see him cry as he got poked and probed again for all these tests, he was also so cranky since he did not take a nap because of all the testing been done to him, we didn't get home until 5pm just to deal with more nonsense. Hoping tomorrow is better.

Not Down, Not Shaken

This was a difficult weekend everyone, but now it is part of the past. Today is our future and we have made it here because of faith, strength and support. The support we received this weekend was immense and great to have by our side. The prayers, well wishes and positive energy we are holding on to as ammunition against the bad days and this horrible cancer which we can not stand. This is probably the only thing we can say we HATE. We HATE cancer and what it is trying to do to our AA but no way are we going to let some small cancer cells hurt our son any further. We will continue to be Positive and we will continue to support our brave little man in this fight. Our sole purpose in our lives is to save our son's life and with the power of positive thinking, prayers to God and your positive thoughts and prayers we will do this. We will WIN even if it's the last thing we ever do.  We will come out of this better, stronger and most importantly with love and life.

“A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty.”

Winston Churchill

“A pessimist sees the difficulty in every opportunity; an optimist sees the opportunity in every difficulty.”

 Winston Churchill

Bad News

Today we got the worst news in our lives since AA got diagnosed back in July, his cancer has now spread to his spine. He will continue the chemo/stem cell transplant as scheduled possibly starting Mon or Thurs depending when he gets over his cold. There are no words to express how we are feeling right now...we haven't stopped crying since we got the news at 12 noon. Although we are sad now, upset, disappointed, confused and so much more, some how we will get through this. Some how he will make it through and live an extremely long life...he just has to.

AA's 2nd Birthday Set 1

We wanted to share with everyone some of the pictures taken during AA's birthday celebration on Saturday December 3rd (his actual birthday was on the 5th).

Here are the birthday pictures!

AA's 2nd Birthday Set 2

Having fun!

AA's 2nd Birthday Set 3

AA's Full Photo Shoot Pictures

Hello Everyone,

AA is currently taking his nap and seems to be feeling much better. On another note, we wanted to share with you the full array of pictures to AA's photo shoot done in the early Fall. The great pictures were taken by Anel Martinez from Dreamscape Photography. There is unfortunately no way to share them individually but they are available for purchase through the Gallery link. It's a great way to give Anel thanks for providing a free photo shoot to AA and the family. Enjoy the pics!

Gallery

http://dreamscape.zenfolio.com/andrew

Slideshow
http://dreamscape.zenfolio.com/andrew/slideshow

Important Note: Just copy and paste the above links into your browser to view the pics!

Chemo Postponed Until Monday

Good Morning Everyone,
Just wanted to let everyone know that Michelle decided to postpone Chemo until Monday because AA seems to be a bit under the weather. Better to play it safe than sorry given that his immune system is already low. Some TLC and his mommy's med skills will get him ready for Monday.

Roi

Thank You Note

On behalf of Andrew Aidan, Michelle, Beemer and myself we would like to thank everyone that was able to attend AA's small birthday celebration on Saturday. We hope that everyone had a nice time as it was great to see AA do great and enjoy his time as well. We wished we could have had more come but we will do that for next year and his "AA's Cancer Free" party. Thank you all for coming and for the precious gifts given to AA. We love you all.

Roi

Happy 2nd Birthday Andrew Aidan/Feliz Cumpleaños AA

Today is Andrew Aidan's 2nd birthday. A truly wonderful day for such a wonderful young man.
My son, you have been such a pleasure to have in our lives for the last two years ( a total of 724 days ) since you were born. Your mother and I feel so lucky to have you in our lives. You have brought us great joy, happiness, love, caring and affection with you since your arrival from heaven and for that we are so greatful. It is our pleasure to call you our son and we are so very proud of your courage and resilience to fight everyday. Very few parents have childen as strong willed as you and we are one of the few. Today is your day to celebrate your life. May we do everything we can to make it a happy day for you and may you enjoy it as much as possible. Happy Birthday Andrew Aidan. We love you with all our hearts and we look forward to having many more of these great days.
Your Ma-Ma, Pa-Pa and Beemer

Roi

Praying everything goes well today...AA has a lumbar puncture at 11am to make sure the cancer has not spread to his spine...feeling a little emotional as I know this is the last test before chemo starts next week :(

So Far So Good

> Good morning. Hope all is well and just wanted to let everyone know that AA is having a nice week. So far everything seems to be going fine with his testing and there is nothing that worries the doctors right now. They have been very happy to see his progress and are amazed of his strength and resiliency. We look forward to a very nice BDAY weekend for AA. If anyone wishes to send him a birthday wish please feel free to send it to him via Michelle's or my e-mail below. We will collect all the mesages for him and put them in his Get Well folder so he can see all the love and caring that is possible from caring people.
> Thank you.
>
> Roi
>
> Michelle- m.legar@gmail.com
> Roi- r.legar@gmail.com
>
>