Our Final Admission

Hello everyone...
It is with extreme sadness that we have to tell you that today we have been admitted for the very last time during AA's battle with cancer. We have decided to stay because AA has been on a very rapid rate of decline and the doctors all believe that his time to move on with the Lord will be coming very soon. Last night he was vomitting quite a bit and we had to come in to the hospital this morning to get him some fluids he was in need of. We are preparing him now for his promotion to the position of Angel/Saint in Heaven which can happen at any time. He has been a remarkable man through out and He is now needed for much bigger work in Heaven. In these upcoming days as we near his transition to his new and pain free life I would like to invite any and all to send him a brief note via email in order for us to read it to him as encouragement for his wonderful new life. May God grant us peace and strength.
Michelle and Roi

Heading Home

Just want to let everyone know that we are going home in a couple of minutes. Thanks for the support and well wishes. AA is doing better thankfully.
have a good night. Love you all.
Roi & Michelle

Time

" A grain, a second...A memory...a lifetime..."

What do you do when when the grains of time slowly slip through the worn cracks of your hands? Or the sad winds of loss call to you like a haunting memory? The voyage through the desert is a long one that many do not last but grateful are those that do...We have been on our caravan through this horrible desert for quite a while now and as we finish this spiritual safari we are preparing for our next trip in the next desert. The desert of loneliness as one our team members, AA prepares for a new and wonderful journey as one of God's Angel and Saints. We have to be happy for him because he will finally have some peace in terms of his health. He will be able to protect us from heaven as we continue to honor his time with us through our lives. He always was the reason why we lived and will continue to be as he goes on to the next phase of life, because we hope to be with him one day as we all see the sun set in the desert dunes together.

This weekend  sure has been an eventful one. I am going to start with Sunday's events...AA has been doing better at home...He has been eating and drinking while speaking a lot more. He said some new words such as, "no More", "Blue", "Orange Juice"...So happy to see him have some progress and he even stood up...Amazing given that his body is really taking a beating from this horrible monster called AT/RT...We wanted to thank Fr. Jack from Our Lady of Fatima Roman Catholic Church for coming by and giving us all a special blessing. AA was happy to see Beemer too. Beemer was very overprotective of him and laid right by his feet as he protected his buddy. AA sat up on his high chair this weekend for at least four hours which was the longest he has ever sat up in months. 
Although we are in hospice care right now we still feel like we are still at Sloan because Dr. Lightner calls every other day to see how we are. He has been in pain at times, we have had to give him pain meds that work well for him...at this point he doesn't need hard core pain meds yet so we are happy that Dilaudid works well for him....We also want to thank Michelle's parents for really helping us out with breakfast, lunch and dinner everyday...it has really taken a load off of our pockets and time...we are able to spend all day with AA as a result... We were also hoping to take AA out more being that he is not neutropenic. As we were heading out to take him on a walk he started to shake his hands and head slightly. We decided to bring him in and put him on the bed and Michelle thought that he might be having a seizure and then his mouth started to twitch, she was right. She gave him two doses of anti seizure medicine but that didn't work.  As a result we had to call 911 and the FDNY and EMS came to our house and helped break AA's seizure with some Valium. We then rushed to Sloan. We were surprised how calm Michelle was during this because she gave him the appropriate medicine and stabilized him.  Unfortunately, two dosages of Ativan did not work. We want to give a special thanks to Dr. Lightner (and her husband Chris) again who left her family to come see how AA was and ordered all the appropriate tests. She then went to have dinner with her family and then came back to spend time and observe him. After his seizure his right side was very weak (similar to stroke patients) but it resolved in hours as opposed to days, quicker than the Doctors thought. I am telling you, AA has made almost everyone in this hospital earn their salaries. All the doctors were surprised how quickly he got better.  AA was really scared for the first time  when the seizure started. He asked Mama and Dada to stay by his side because he knew something was going on. That really broke our hearts. To put more salt on our wound, the CT scan given to him last night showed that the brain was not bleeding but that the cancer has really spread like wild fire...given how bad the disease has spread the Doctors and we are totally amazed at how well he looks given the situation. They marvel at his willingness to fight.  This warrior was even given a high dose med for seizures that should of knocked him out but it didn't.  That dosage was equal to one pint of vodka for an adult and he was wide awake until 6am while we were falling asleep. On top of that, the dvd player in the room didn't work and that made matters worse.. All he did was slap us silly in the face and tell us to wake up to put the Chugginton dvd on. He obviously didn't understand that it was broken...Yesterday was the second time, I had to just walk away for a couple of minutes..I was so mad at this whole crappy situation for our boy, but never at him he is the light of our lives and souls. 
The docs were also nice enough to let us stay last night and gave us the option to stay for another day but we want to get home ASAP... Our hospice nurse Kristi is amazing. She rushed to our home once we called about the seizure and flew by our side as we went through this ordeal. She went with us to the hospital and left the hospital at almost 11:30. She really has been a great emotional and medical help. We also wanted to thank Michelle's parents, sister, my aunt Linda, Uncle Mario and my mom for coming by our side yesterday. Thanks for the support. Until next time!!!
AA, Roi & Michelle 

AA's First Seizure.

Had to be rushed to Sloan because AA had his first seizure a short while ago. Not a bad one but it will be something that can be happening more frequently as he gets worse. Will stay they night at the hospital for observation. More updates to come.

Thank You For 10,000 Blog Visits

We truly wanted to thank everyone for helping us promote AA's blog and the greatness of his story and the way he has touched the lives of soo many people around the world. 10,000 views in almost 8 months is amazing. I promise you I did not look at the page that many times. Thanks again and thanks be to God and his many angels and saints for coming to our side during this experience. You have all been magnificent. Thank you.
AA, Michelle & Roi

Thank You All for Your Support

Over the last two weeks we have seen the amazing ability of humans to pull together during extreme circumstances such as the battle we are currently in to save our son's life. We have had people from across the globe come to our site and view AA's story. Such as been the response that some have felt compelled to help us in this battle. We appreciate the fact that many are spreading the word about AA's story as we prepare for the next phase of life. Thank you very much!

AA, Michelle & Roi

Food For Thought...

AA's day was pretty good today...We were at Sloan today to get his mediport lines changed and to get some blood work done. Gotta say he did pretty good. He ate a good amount of food today and was in pretty good spirits. He has been sleeping for a bit and here I am thinking...thinking I was very happy for him and was glad to see him show off his million dollar smile again on a number of ocassions. He has been a true champ throughout this whole process. Loved he is, beyond measure.
Thinking...about how I wished all of this could have been different. I only hope that God has a miracle up his sleeve. Well I came across this quote that rang true to me and just wanted to share it with you. Have a great evening everyone and we will keep the updates coming. Stay true to yourself, appreciate those who are strong enough to stay by your side and enjoy every single moment as much as you can....
Roi

" Solitude is the profoundest fact of the human condition. Man is the the only being who knows he is alone and the only one who seeks...To realize himself in another ".

Octavio Paz (1914-1998)
The Labyrinth of Solitude

Cartoons & Bread With AA @ 3am...Priceless

12 midnight IV changed done..spending time eating bread and watching Chuggington at 3am with AA my cancer warrior...Priceless. Dada Roi.

AA's You Tube Channel, More To Come...Spread the word....

www.youtube.com/user/musicforandrew

Just wanted to thank everyone for seeing "AA's Videos" via the You Tube video viewer on the left hand side of our blog. If you would like to see his full You Tube Channel with all of his videos please view the web page below. Thank you for honoring our little man's spirit and life by viewing his videos. We will be putting up videos from past and present. We are also trying to raise funds by having many, many people view these videos, so if you may spread the word to all of your friends and family we would greatly appreciate it. Hopefully the positive vibes these videos create will reach Heaven and God could perform his miracle of keeping him alive.

Thank you all!

Roi & Michelle

Guess Who Is On Twitter...Andrew Aidan Is...Follow us!

@Andrew_LeGar

Hi Everyone.....

Andrew Aidan is now on twitter....We look forward to spreading the word on the amazing story of AA and of the belief in Love, Hope & Miracles.  We look forward to the support and ask that you follow us if you are on twitter. Please spread the word....Thanks!

Roi

A Special Thank You To My Family From Puerto Rico That Came To Visit

I wanted to say a special thank you to some very special people that were kind enough to fly from Puerto Rico & Orlando to visit Michelle, AA & myself during a very difficult time this past week, Carlos, Vivian & Raul. All three are very beautiful people that have been in my life for a very long time and have shown how special they are. We love all three of you very much. ¡Muchas gracías a los trés! Los queremos mucho!
AA, Michelle y Roi

Looking Ahead

Well, we are enjoying our time at home very much. We were discharged yesterday and got some good news from AA's eye doctor at Sloan. His eyes are in perfect working order. Everything was great and the issues he has been having with his vision is due to the cancer growing. At this point in the game we will take all the victories we can get. This helps us out also because one of the few things that keeps AA entertained is his  love of his favorite cartoons. At least he can continue to see them and have fun.
As always we were very happy to have a nice send off from our friends at Sloan. Dr. Gilheeney, Dr. Lightner, Dr. DeBraganca, Cynthia (la Nutritionista), Alyson (Child Life), Daniel, and Juliana all came by to say bye to us. We thought it was cool and it always helps us out in coping with this situation.
We started the next phase of AA's care last night which is hospice care. We had a great admission RN come visit us, Kristi. She was amazing in her ability to understand our situation and the varied emotions and feelings that we have felt and feel. We wish all RNs were like her.
We are also feeling sleep deprived today because of AA's medication which is administered every six hours via IV. This is the antibiotic for his port infection. We both woke up to help each other but that doesn't make sense. As a result, the infusion nurse came by today and both she and Michelle showed me how to work the new pump and be able to administer the IV meds. Please that was easy, I am a pro already after almost 9 months of this battle. The good thing is that Michelle and I will do the day shift together, then I will do the midnight shift and go to bed and she will do the 6am shift and I can stay sleeping. Lord knows we need as much rest as we can get.
Yesterday and today have been pretty good days. AA is still eating very well. He ate croissants, mozzarella sticks and even had some of his grandma Alicia's rice and meat sauce which he loves. He only ate a bit of that because he was already stuffed from the bread he ate. He also had a bowel movement which was awesome. He also was smiling a lot and chuckling to some of his cartoons and I even caught him singing to some songs as well, especially the Shakira song, "Loba" which he loves.  He also loved seeing Beemer again...
Another thing that surprised us was that he was not scared of all the visitors he had yesterday in the hospital  or from the nursing services. So far today seems pretty good and will keep you all updated later on again today...
Roi & Michelle

Heading Home...Discharged

It's always great when you get to go home like we are today.
Roi

Another Day

AA & His Buddy Bob The Builder Say "Good Night"

AA was supposed to have two procedures (mediport removal & central line placement) today but he did not. This morning we were told by Dr. G that the infection was being controlled by the antibiotics and it had not grown back since the 18^th, so no surgery is needed for now.

Last night AA had a procedure called a Shunt Tap. This is a procedure performed by the neuro-surgery department to see if his shunt is working. It was done because there was a concern that he may be having increased pressure in his brain. Michelle had to leave the room because she could not take hearing AA’s cries, I don’t blame her.  The neuro-surge team put a needle into AA’s shunt which is access through his head. He was not happy and his screams were heard on the other side of the floor. I had to stay to help him be as calm as possible and get the procedure done without him causing the Dr. to injure him since it was not done under anesthesia. After all was done, his inter-cranial pressure was within norm for his age. They took three samples of his CSF (Cerebral Spinal Fluid) and we are still awaiting those results.

Seeing our once vibrant boy starting to wilt away is totally gut wrenching. It is living a tortured existence.  He is having his eyes roll back possibly caused by nerve damage due to the cancer growth in his brain and has not had a bowel movement since last Tuesday. We did give him some Miralax yesterday and some today, hopefully it starts to work soon.

Got some bad news today as well. Yesterday's CT scan showed that the cancer is growing further in his brain. This is the first time that a CT scan has shown growth. We are worried and scared because we do not want our AA to be in any pain or discomfort if this is the route that God wants AA to take.

AA also had a blood transfusion today and some potassium and magnesium given yesterday. Things seem to get worse day by day but we have faith that God is watching over us all. In regards to his eating he has been eating everything in sight. He basically is eating nonstop, everything from croissants, mozzarella sticks, quesadillas, chicken broth, chicken, chicken nuggets, french fries...We are now told that we are going home tomorrow and we will have to administer antibiotics at home. We hope that is the case as we are all ready to get out of here. We will give more updates as we get them.

On the positive side of life, we were notified that the genetic testing performed on AA determined that his cancer was a matter of “Bad Luck” and not the case of Michelle or I giving him this disease. This also means that we do not have the gene for this cancer and are free to give AA as many brothers and sisters as we can handle without worrying that we can cause any of our future children to experience what AA has gone/is going through. Finally, some good news!

Roi & Michelle

Visit AA's Channel on You Tube

Just wanted to thank everyone for seeing "AA's Videos" via the You Tube video viewer on the left hand side of our blog. If you would like to see his full You Tube Channel with all of his videos please view the web page below. Thank you for honoring our little man's spirit and life by viewing his videos. We will be putting up videos from past and present. We are also trying to raise funds by having many, many people view these videos, so if you may spread the word to all of your friends and family we would greatly appreciate it. Hopefully the positive vibes these videos create will reach Heaven and God could perform his miracle of keeping him alive.

Thank you all!

Roi & Michelle

http://www.youtube.com/user/musicforandrew

AA's Story On Another Web Site

Just wanted to share this pretty cool news that AA's story is being posted on the website for Inspiration Through Art. Inspiration Through Art is an organization that allows families with children with serious illnesses the opportunity to have free photo sessions in order to prevserve family memories. He will also be featured in an upcoming book called "100 Reasons-The Book"..
Check out their website...
http://www.inspirationthroughart.org/

Roi

Sunday Update

Central Line AA will get on Monday

Happy Saturday everyone...
One thing that I can say from our experience with AA during this war with cancer is that it has always kept us on our toes. AA has a continued infection in his port and will need to have his mediport removed on Monday. He will then have a central venous catheter (see above) placed in his chest. He has had a rough weekend. On Friday he threw up four times, Saturday 1 times and today once...The neuro-surgery team will be coming in today to see him and he will also have a CT done today...They want to make sure that the VP Shunt he got recently is still working properly. That's it for now and will keep you updated as we get more info. Thanks...
Roi

Friday Morning Update

Just a brief update every one.
AA is doing much better now. The port infection is being controlled with an anti-biotic called Vancomycin. Thankfully he has not had any more fevers. He has been eating a great deal of food as well. Wednesday he had four meals and yesterday three big meals.Yesterday it felt like he was eating for basically all of the day. He ate mashed potatoes, sausages, bananas and bread. We were very happy to see that. He has been more like himself lately. We hope that this is the beginning of God's miracle. We would like to ask everyone one favor today. We would greatly appreciate it if you could please share our blog address with all of your friends and family from all over the world. Getting AA's story out to the world is very important to us and it is a great way to honor his amazing strength. We would especially appreciate sending the flyer with the request for help. Please see the flyer and his blog address below. Thanks!

http://www.andrewlegar.blogspot.com/

Roi

A Helping Hand During Difficult Times. We Could Sure Use Your Help!

Please Lend A Helping Hand!

As you all well know, in July 2011 we learned that Andrew Aidan was diagnosed with a rare inoperable malignant brain tumor, called Atypical Teratoid Rhabdoid Tumor. AA has endured multiple brain procedures, extensive chemo & radiation therapy and now has multiple tumors on his spine. The doctors say that there is nothing more they can do for AA and that his days with us are numbered from weeks to months. We now hope for a miracle from above. It is due to the reality of not having our son with us for much longer that Michelle was forced to take a personal leave from work and together with me, focus on helping our son enjoy what's left of his life with us. We would greatly appreciate any financial help you can provide us during this very difficult moment in our lives. Thank you.    

Michelle & Roi         

Make Secure Online Payments With Credit Cards & Even  Checking/Saving Accounts

You could donate on our blog on the upper right hand corner via the PayPal "Donate Now" Secure Payment System or mail a check to:

Roi & Michelle LeGar

21-19 77th Street Apt: D1
East Elmhurst, NY 11370          

If you would like to spread the word and need a copy of the flyer, just e-mail Roi at the following e-mail address and I will get you a PDF version right away.

Roi's E-Mail Address: r.legar@gmail.com
   
Have a great day!

Getting Admitted

Definitely want to let everyone know we are getting admitted. The team is still not sure if the port is going to be removed. They want to try to avoid removing it just in case AA may need to get some pain medicine down the road.
The team is trying very hard to see if they can start his anti-biotics here then have us continue the cycle at home.
Roi

Infected Mediport & It Will Be Removed Soon

Morning....
Here is the latest update. AA's mediport, the medium that is used to withdraw blood, give IV or give chemo is infected. This is the second infection it has gotten. It will be removed. It is a good time to remove it given that AA will not be receiving chemo or any type of IV anymore. If they ever need to get blood or give IV they can do it the old fashioned way. We will be heading to Sloan today where they will probably treat him with anti-biotics until he is well enough to have surgery sometime this week. This infection will explain the fevers he had again last night. The good thing is that after this is taken out he will not have any further infections caused by the mediport. I guess this is God's way of making sure we trust in him and not go back to the failed ways of medicine. We hope that the Master Repairman has a fix for this repair. As always we will keep you all updated through here.
Roi

Broken Heart | Broken Day

Broken Heart | Broken Day

Today was a rough day for a number of reasons, but I will get to that in a minute. Some of you may be asking how is AA? What is his current state? Well, to tell you the truth, surprisingly well overall. He has been improving on a daily basis in regards to his eating and behavior. Behavior wise: He has been more animated than he has been in a while and was actually up laughing the night away last night until 11pm watching some of his favorite cartoons such as Chuggington and Mickey Mouse.  You could definitely see he loves being home. Meal wise: He has been eating more and more each day. Yesterday, he ate two meals and today he ate three times. We are definitely happy about that. We hope that this improvement could aid him in being happier and who knows, maybe God has a trick or two up his sleeve. At this point, I would really love for God to prove all the nay sayers wrong.
How was today a rough day? Well here goes.
AA:
1) Since we have been home on Saturday, AA has been on IV supplements called TPN. TPN contains various nutritional items to help him stay up to date with his nutritional intake. Well TPN can cause some people to have either very high or very low sugar levels in their blood and this could be very dangerous. It seems that this caused AA to have a blood sugar level of 27. Any of you diabetics out there know that those levels are extremely dangerous. The nursing service had another RN come out to do a blood retake and again his sugar level was a bit higher at 40 but still very low. At this point, Michelle and I were extremely worried and addressed this to the MD team. They believe that the TPN could be the problem because AA has never had this problem. They decided to send us a new IV pump that will control the flow of IV TPN to AA a bit differently than the previous pump. This should help they say.
2) After having this happen, I noticed AA was slightly hot after waking up and let him wake up a bit before taking a temperature. Thankfully I did, because he had a 100.4 F reading, for pediatric cancer patients that is a fever. Well, I got AA ready ASAP and rushed to Sloan to make sure that he can be seen. His temperature went down on it's own. They checked his blood levels, All was okay there. They performed bacterial cultures on his mediport to see if he has an infection, results are not back yet (takes about a week for full results). He also had a throat swab to make sure he doesn't have a throat infection, results are not in yet either. He was given an anti-biotic as a precaution and was given some fluids. They also did a urine analysis which came back negative (negative in this case is a good thing). We should have some more results back tomorrow given that we are going back for a second dose of anti-biotics and will also get some fluids as well. Now he is stable and is sleeping and had a much better night at home.
Now For Michelle:
It actually has been an ongoing struggle for her, given that she has had to go back to work numerous times in order to help provide health insurance for AA and the house for us due to me leaving work and school to care for AA.  Then with the recent news we received last week of the long term prognosis for AA and his battle with cancer it got worse. Yesterday, she had to go prepare all of AA's bereavement arrangements, funeral home, cemetery plot, church mass. That's a lot for any parent to have to bear. This morning started with AA's sugar level scare, then on her way to work, she got off the bus four stops before her stop and was then disoriented as to where she was. The stress and worry has been obviously bothering her. Well, when I called her that I was going to Sloan with AA she finally decided she had enough worry, stress and anxiety. She approached her HR Dept about taking a personal leave of absence due to the over whelming emotions related to what the doctors say will happen with AA within weeks to months. They approved her request for the next month and we will have to see what happens after that. It will be a leave without pay BUT her company was nice enough to let her keep the health insurance for AA's treatment. At this point what is more important, a couple extra dollars or irreplaceable time with AA. I believe I do not have to answer that question for you. You see, medical professionals may not do physically demanding work, but mentally they receive a beating everyday. It is definitely a mentally draining job. She can not afford to have an off day, because that off day can cause her to lose everything she has worked so hard for while also damaging the reputation of her company. What are we going to do to get by? Who knows? Some how God will get us by...
As for me:
Nothing major happened to me thankfully, except for what appears to be a broken crown on one of my teeth. There is now a nice space over a portion of my tooth that was not there before.

We hope for a miracle from above and for health and peace for our lives for all three of us and Beemer of course. Have a good evening!
Roi

Angel of Miracles

Lord God,
Today Monday we come to you once again to praise your name. You are good in good times and bad times. We ask that you forgive us of any wrong doing we have committed and ask that you continue to watch over your angel AA. The doctors of science, medicine and logic say that there is no possible way that AA can last much longer than a couple of weeks to months. We disagree. You have always walked by our sides even though we felt alone and always had your angels surrounding us from much greater harm. We ask you Father to please perform a miracle of restoring AA's health for no one else's glory but your own. Miracles are far and few between today but that does not mean that your abilities have diminished. You are the awesome God who is capable of great and wonderous things. I believe that you are capable of doing this. Please send your miracle angels to deliver into AA your wonderous healing powers and spirit.
We love you. In Jesus name we pray.
Roi

Going Home

Heading home.....
Roi

Snowflakes Salute The Warrior On His Way Home

As I sit by the window of our room in Memorial Sloan Kettering I can't help but truly appreciate the moment. A moment in which I get to see my wonderful and unique son rest as I see the individual snow flakes fall in the background. I listen to one of the most beautiful quartets in opera as Addio dolce svegliare alla mattina! – "Goodbye, sweet awakening in the morning!") from the third act of Puccini's La Boheme fills my heart and soul with the knowing that this next phase is only temporary. We are as beautiful and pure as snowflakes while falling to the ground in order to fuel the growth of the upcoming spring. My son you will always be my snowflake, you will always be my only AA, you will always be my fuel to live. Each and every tear or smile I ever have for you will be as original and unique as our memories together. I promise you my boy, my friend that we will roll in the grass again and laugh till it hurts again. Thank you for teaching me what is true love. I love you and I am forever grateful of your gift to us. Now let's enjoy our time together gordo.  Mama & Dada love you Gordo. Springtime is just around the corner.

Roi

The Sun Always Shines Above The Clouds

> When the sky turns dark,
> Does it mean the sun is gone?
> When the clouds are grey,
> Has the Sun's radiant flame come to an end?
> The eternal sunshine of the Sun is ever present over our planet and over our souls. Although, the enormomity of our situation has yet to even begin, we are glad to have the support of many beautiful people in and out of the hospital. Today is our last full day in the hospital during AA's current state of health and during the course of the day we had so many people come see us. Dr. Lightner (we truly love you, see you in Kentucky soon), Dr. Gilheeney (watch out for the Purell), Mary (you are an awesome NP but shhhh don't tell Dr. Lyden), Juliana (hospital dinner is on us next time), Alyson (don't take it personally sweety, AA plays hard to get with all the ladies), Keri (hope you texted Leah that you saw us), Leah (hope that you texted Keri about your secret trick with AA), Carmen (good friends are forever), Jennifer (Friends of Karen are lucky to have you, you are great), Raul (gracias por venir de Puerto Rico a estar con nosotros amigo y hermano del alma), Dr. Forlenza (thanks for looking out for us) and last but not least, all of the awesome nurses who took care of us including Elayne (we love you patient advocate), Julia (your munchkin sends you a besito), Dana (mail merge, mail merge), Larissa (get well soon), Dorothy (Corona time), Jennifer P (go towson), Lisa (smarter than most residents), Courtney (How's Jackson?), Daniel (we gotta get together to see Chuggington again), Jackie (good luck in the night shift) and all the other great and helpful RN's.
> We also wanted to thank the nursing assistants, Jenna (good luck in school), Keisha (Kashmir is lucky), Connie (thanks for the stories), Sherryl (fashionista), Kate (dive in the bag), Katy (thanks for helping me with the bed), Cherry and Michelle. Food services reps Branden (thanks for the wheat crackers,lol), Andrea and Judy. Houskeeping: Sara (please clean the windows, from the outside), Sandra (¡Gracías!), Karen (thanks for the candy), James and Frank & the Candy Crew (thanks for the Sweet Tarts). I now feel like one of those artists that fill half of their CD inserts thanking half of the world. Go figure but these wonderful people took excellent care of us. Thank you all soo much.
> Having all of these wonderful people and more reach out to us today and over the last couple of days has really helped us realize that all three of us touched so many lives. AA (with his mean corner of the eyes look and his besitos, all done and bye-bye gestures), Michelle (with her countless RN/NP stories) and myself (and my super human Super Dada strength, lol just kidding of couse). It has helped the whole process slightly easier in knowing that we have the support of soo many more people that we can't even begin to mention.
> The reality is that our lives will never be the same. It will be entirely different but we will take the happiness and love of our AA as our main source of Strength in our march forward in life. Each day will be a day closer to being with him again. Till we meet again!
> Roi

An Introduction, A Dream & My Son

Good morning everyone,
Please take a moment to read an article I was lucky enough to write for a stay-at-home-dad-group that I am a member of. They gave me a shot to share AA's story, our story. Enjoy the read and please support the group.
Thanks!
Roi

http://www.nycdadsgroup.com/2012/02/introduction-dream-my-son.html?m=0

Judging God

Judging God
For my whole life I have yearned to know more. More than the simple human life we all live. Are our lives so mundane that we are basically a bunch of Sim characters to God. Being told what to do and how to do it in the most subliminal way, but we are taught that we have free will and choice. How can we have free will and choice if there is predestination or the book of life is already written for us. Isn't that contradictory? We are being judged for something that we did but God knew we were going to do it anyway. Our whole spiritual existence depends on our actions that were permitted by God to begin with. You see, herein lies my problem with God and I think that as he judges us according to our actions that he already knew we were going to take that we should be able to tell him what we feel and how we think he could of helped us do better. Or how he could have done a better job. Why not? Why did he permit certain things to happen? Like my son getting cancer and pain. What's the purpose of him suffering? If there is a purpose or plan why not share it with us so we can feel more comfortable with the situation and then decide if we want that. That is free will! Not the illusion that we are spoon fed or the puppet show we are a part of. Come on, he made the perfect machine in human beings and you are telling me he can't fix us. Of course he can, but he does not want to. We have to roll the dice on prayer. We just can't go to a high priced repair shop and fix the issue. Trust me, we just did and that had not worked. Instead, we have to torture our souls to try to hope for a miracle and that is still not a guarantee. Some of us even bargin with Mephestophiles (The Devil) for another chance. You will be surprised what a person is willing to sacrifice for Love. You know, I did nothing personally to bring the jerk of the Devil to this planet yet we all have to pay the consequences for his actions and the actions of Adam and Eve. God could just kill the devil. The devil is one useless disgruntled angel who did not like his job and decided to give it up. He is the one that went "postal". That should be his problem not ours but he gets to continue to do what he is good at and we get the raw end of the deal. Jesus said that he is the way and the light, I like Jesus he gave him self up for me. I can relate to that because I would do that for AA but why did God have to throw his son under the bus when he could have just stopped the madness from the beginning. God has a sadistic and destructive side, a side that we also posses because we are molded in his image. I feel that we are pawns in a personality disorder that God has with himself. God could be both the Devil and God. He is bi-polar. For whom did Lucifer come from, God. Listen, I do not doubt God, I believe in him. I just don't agree with him. I only believe that if I do have suppossed free will, I can tell him how I feel. If I can tell my mother, my father and all my other family members how i feel why not my spiritual father.
Today...well how can I put it...as parents we received the worst news ever imaginable....our Big Man AA is on limited time with us...we are trying to get home ASAP in order to get him nice and fat and get him back to some of his old habits and comfort zones....this way we could celebrate the wonderful joy that he has been in our lives. The amount of strength, courage, love and happiness he has demonstrated is amazing and everyday we are soo happy to have had him for this time. Obviously, we are extreme dissapointed with this but as parents and friends to AA we had to make the tough decision of going this comfortable way for his sake than to try and throw more salt on his already wounded body. It was the hardest decision to make but we had to make it for him and his welfare. We always wanted him to be happy and loved. We are lucky because we will now have our personal guardian angel watch over us as we continue on this journey together and hopefully give him a couple more little brothers or sisters to look after. He will be waiting for us in heaven with open arms one day and hopefully pulling God's ear for putting him through this. We love you AA and we know you love us baby. You are the best!
Roi

Change

Medically, all we are waiting for to leave the hospital is for AA to start eating and drinking and we are free to go. He is still very weak and fragile and just wants to be with us all the time. I don't blame him we are some cool parents. Just kidding.

The last two days have been some of the hardest ever for Michelle and I. We have started to understand that we need to let go of this horrible situation and let God do his work. This is something that has caused me extreme anger and disappointment with God. He knows it I have told him. Today I am letting go of the anger and hate. I am sorry for doubting his plan. It's just hard to do when you see your little boy getting ready for the next phase of his spiritual journey. One concept I always believed in, is what I call Spiritual Continuity. Something I came up with when I was younger after probably having one too many cups of red wine. I always thought that our Spirit/Soul was and is the true essence of who and what we are and that we have a definite cosmic purpose in achieving our goal. Our Andrew Aidan has been amazing to us and he will always be with us. He has taught us the beauty of love, understanding, sacrifice, joy, happiness, pride, wonder and soo much more. I guess it is his time to get his mama and dada ready for the next phase of life, whenever that may be for us. I am done being angry with God. I am making up with him because if I don't, guess what I will never be able to see my AA again in Heaven. We will see him again. We have tried almost everything possible with science and now let God be the one in charge from here. Only his miracle or willingness to keep him around will fix AA now. We are understanding that and are working on accepting that everyday. As I lay here next to him as he sleeps I marvel at the beauty of this little boy at the power he has to bring soo many together in one thought in one song of prayer. We love you AA and through your loving actions over the last 26 months I know you love us too. We still hope and pray for God to make you healthy again and to restore your health to full strength.
Roi

Letter To My Son

Andrew Aidan,
This is Dada. I just wanted to tell you a story that means soo much to me. It's a story of you and me. You are everything I ever wanted in life. This is how the story goes. Your mama and I always wanted a beautiful amazing son like you and everytime we dreamed of you we really did see you the way you are today. You see on March 21, 2009 I was turning 33 years old. We only had a couple of family members over because it was a weekday and I have never been one for big parties. Basically, all I wished for that evening as I blew out the birthday cake was you. You were what I asked God for as a birthday gift. I wanted someone special that I could share a part of me with. Someone that was part of me. Guess what, God granted me that wish. Little did we think of it but that very night God made you through our love. The doctors confirmed it when we went to find out you were growing in your mama's belly. Amazing no? I love you so much. It was a great feeling to come home everyday and speak, sing and read to you every night after work while you were in your mama's belly. It was wonderful. I know you enjoyed it as well. I can never ever imagine my life without you. You have been my buddy since you were born. I was even the first person to hold you. It was the most amazing moment of my life. You and I have been attached to the hip sver since. Spending almost every single hour of everyday together. An amazing blessing. Now I need your help, God wants to take you back to heaven with him. Why does he want to do that? Why does he want to break our hearts and souls? I need you to speak to him Gordo. I need you to tell him that we are good and decent people that love you more than life it'self. Just like he loved his son. All we want to do is fill you with the love we have for you. Please tell him you do not want to leave. Please stay my baby. The doctors are saying that the chemo is not working and want to give you treatment to extend your life not save it. Please my son you are our pride and joy. Please ask him for a miracle because I do not know if hears us anymore but I am sure he hears you. My gordo there is so much we still have to do. I love speaking with you in bed, I love taking walks with you and hearing that crazy laugh of yours We must fight together. We must live and love together, please stay, please tell God to let you stay. Please God, we love him and we love you. Please, I will do want ever you want. Please. I love you always my son. Please speak to God okay. Get some rest.
Love eternally,
Your Dada

Wars Are Not Won In A Day

Hey guys....
Apparently our prayers, positive energy, countless tears, AA's constant pain, suffering, weight loss is not enough yet for God to perform his miracle. His results were not good at all. 1) The original tumor in the pineal region (center of the brain) has grown more. 2) The tumors on the spine have also grown. Right now we have to focus on getting AA healthy enough to leave the hospital and start eating again. We are waiting for Wednesday's tumor board meeting at Sloan before we know the next step. The tumor board is a group of cancer professional at the hospital that help decide the appropriate treatment for a patient if things need amending. Chemo for Friday is oficially off the table

Meanwhile, we are totally numb. What else can I say? We are running low on so much of the spiritual fuel we need and keep coming up against soo many bumps in the road. Our front line in this war is taking a huge beating and it really does suck that we have no re-enforcements to call in and help us fight the battle. No secret cure, no miracle drug. Just faith. I hope God hears this because sometimes it feels like he doesn't because try explaining the concept of Faith to a tumor, they just don't get it.
We continue to have faith that God will help us through this and that God helps us keep our promise to AA that "everything is going to be alright baby, God is with us". Everything is going to be alright. I sure hope so.
Roi

Waiting Game

AA is up from the MRI....I am waiting for him to come out from recovery now. I am literally outside the door waiting. Can't wait to see our boy...after this we have to wait and see the positive results the doctors will be reviewing and bringing our way. Wait.... Here he comes...got him...daddy has him. ...
Roi

AA Is In The MRI.....

Good morning....
AA went into the MRI 10 minutes ago.... Please send out those prayers and positive energy that we see some positive results today. They will be looking for 1) that his shunt procedure is working well and that 2) his tumors have gone down and that there is no other tumor anywhere else on the brain and spine. Lord God please hear our prayer for your little boy and angel and please continue to guide him out of this valley of shadows that he is in and help him get to the green pastures already. We love you. Amen. Thank you.
Roi

Super Sunday Update

Hi everyone,
Happy Sunday. Hope you are all enjoying today either by spending time at church, with family or relaxing. We are still in the hospital but getting better thankfully. AA has been acting less drowsy and less irritable and has been awake alot more. His body swelling has gone down as well but not fully. He hasn't had anything to drink or eat yet but was put on IV nutrition last night. It is called Total Parenteral Nutrition (TPN), it is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formula that contains nutrients such as glucose, amino acids, lipids and added vitamins and dietary minerals. The reason he is getting this is because he is not eating or drinking and he still has mouth sores. We are also getting ready for the next cycle of chemo which starts on Friday. He needs to be as strong as possible. The doctors said we might go home soon because his counts are getting better but they usually will not send us home if he is not eating or drinking. While they just put him on TPN last evening and are already going to take him off it? He will not start eating on his own until later in the week and by then he will be on chemo again. Doctor Modak trully confuses us when he says AA can come off the TPN and be sent home tomorrow. At least our primary Dr. Lightner has spoken to the M9 fellow Dr. Forlenza about making sure the M9 team maintains continuity when taking care of AA while taking in to consideration what Andrew's Primary Doctors thinks he needs. Now we feel better because Dr. Forlenza has already written Dr. Lightner about what they would like to do with AA's next phase of treatment without making any immediate adjustments.

Today he is a bit cranky once again because he has not slept well. Last evening he was fussy when sleeping and this morning too. Something is keeping him from sleeping. We also had an EKG yesterday which was following up a previous EKG and it showed that the result was still slightly abnormal and they will keep observing him. Finally, we ask for tou prayers because tomorrow we will an ultra important MRI of his brain and spine. This scan will let us know if all of this chemo treatment is working in shrinking the tumors and id it is safe to continue on this plan.
Roi

Friday Evening Update

Hello All,
Another tough day at the hospital. AA has been a trooper through this week and we just want to tell him how much we admire and respect him for his strength and will power. He has been really swollen for the last three days throughout his face, belly, knees, legs, ankles and feet. He hasn't eaten in a week but looks like he ate a horse. Obviously something is wrong. Well after countless doctors listening to his belly and telling us that he is ok and that all he needs is to take a poop. Well after giving him countless medicine to go to the bathroom he finally did. He sure was backed up. We got an echo-cardiogram because we were worried that he was having some heart issues due to some readings seen in last week's echo-cardiogram. Thankfully after review by the doctors they saw that his heart is doing well. There are no issues and the irregularities were caused by one of his chemo meds. They will give him a pre-med for the next round to help protect his heart. This has been a frustrating week in part due to the lack of communication within the hospital and it's different departments. We understand it is a big institution with many patients and staff but they really need to take an extra minute or two to make sure that all a patients information is properly in the system and that it is readily available. We are also very appreciative of our Primary Nurse Elayne. She has been soo awesome in taking care of and knowing Andrew while also being a wonderful patient advocate. Dr. Lightner has also been wonderful in helping us advocate for AA as well as helping continue on AA's treatment plan. Found out he will might be getting some chemo tomorrow. Then an MRI on Monday and we will be starting the next round of chemo next Friday. This will be another long stay at the hospital.
Roi

Wednesday Update

Today was a tough day for AA. He has been very uncomfortable due to the following reasons:
• Surgery Recuperation
• Mucositis Mouth Sores
• Body Swelling
• Bad Rash On Lower Stomach
• Constipation
• & For The First Time He Has Caught A Fever.

Catching a fever officially makes our stay here a very long one. They have to make sure they give him a wide range of blood tests while making sure his body is functioning properly. He is now on anti-biotics due to the fever and the possible infection he has. Fevers usually = an infection.
His morning X-Ray went well and there was nothing causing him issues in his belly while his kidneys and bladder are working properly as well. We missed his hearing test because he was very cranky. He got so upset at me when I took away his water just before the test. We will have the hearing test tomoorow now. He still has not eaten but at least drank 6 oz of water with Miralax in order to help him go to the bathroom. He has not done number 2 since Friday morning. We did find out that the Echo Cardiogram which was done on Friday showed that he has some slight abnormal findings for the first time. They say it is caused by the chemo and will be watching it closely.
Hope you guys are having a good day.
Roi