AA Tuesday Update

Hi everyone,
Hope you all are doing great. We are doing as well as can be given the situation. AA over the last couple of days has had the chemo therapy induced sores come out really bad in his mouth. For the first time yesterday we saw blood in his mouth but he is still hungry asking for food but obviously unable to eat or drink. He also is unable to nurse with mommy which usually means he has it really bad. Poor thing. He has also gotten a very large amount of blood and platelet tranfusions since the surgery due to his natural defenses being low due to the chemo he had 2 weeks ago. He was also placed on some round the clock pain medicine to help him cope with the pain he appears to be in. We do not know how much longer we will be here but it does not matter as long as we get him healthy. So far he seems good from the surgery. We will have a hearing and kidney test tomorrow in order to see how he is there. Thanks.
Roi

48 Hour Update After Surgery

Sundays! I remember when Sundays were simple days. They were great for church going, eating at diners, going to my little league games or getting ready for the upcoming week.  In my modern and present reality, Sundays are just like every other day, they are days that I pray, wish, implore, beg God and the universe to totally cure my junior co-pilot in life, my buddy, my son, my AA. My wife will tell you and even I admit it in my ripe old age of 35 years, I have always gone after what I wanted, and usually in a rather selfish way, sometimes sacrificing things that I shouldn't have, but all of that changed when I became the first person to hold Andrew Aidan.  Now I feel like everyday is not Sunday but Sonday (the day of my son).  I am sure that most parents can agree with that sentiment.  
Today, Sunday, AA is doing better he is more alert. Still cranky or not eating or drinking.  Thankfully he has not had any fevers while at Sloan eventhough we were a bit worried when we saw his eyes moving in a weird manner. The doctors, neurosurgeons came by and assured as that they are fairly certain that this type of behavior is common after brain procedures and should go away soon.  One of his primary physicians, Dr. Gilheeney even came by and spent some time making us laugh and being as positive as he can without promising anything. You learn rather quickly that Dr.'s cant really promise the world because let's face it they would probably be sued left and right.  We were happy to have him come by and feel lucky to have some really thoughtful, caring and talented M.D's by our side.  AA just finished getting some platelets in order to help him stay healthy and continues to be a wonderful example of resiliency and strength.  We love you AA and so do so many more people.  I leave you with one final thought before I sign off tonight: 

""When you want something, all the universe conspires in helping you to achieve it.""

Paulo Coelho

Thank you Lord and good night. 

Roi

Back At Sloan

Well, it sure has been a hectic 24 hours for us with all that AA has been through. Thankfully he is looking so much better today. We actually have to say a BIG thank you to the Neurosurgical team at New York Presbyterian-Cornell especially Dr. Mark M. Souweidane, MD, Andrews Neurosurgeon. He did a wonderful job
re-assuring us that this procedure was the best for his current medical condition and for his long term survival. We also appreciate the PICU nurses, Anesthesiologists and PICU Doctors for watching over our boy.
Meanwhile, arriving back at Sloan feels like returning to your old neighborhood, where every face has a name and a story, a place where we really do not have to explain much because they know us, they know Andrew Aidan. It feels good and thankfully we got our old bed back, good old 926-A. It's the best. Even AA felt comfortable as soon as we walked in he seemed more relaxed while across the street at Cornell he seemed upset at everyone and everything. Over here he has had a bit more to drink and seems to be a bit more settled. We will work on getting some nice pics of him tomorrow and posting them for you. Lastly, I feel inclined to remind people of the sensitive nature of the VP Shunt AA had placed. He had this because there are issues with flow of CSF (Cerebral Spinal Fluid) through his spine and brain. The importance of CSF is amazing for the following reason. This fluid that flows up and down our brain and spine serves many functions, but one function that it serves is to cushion these two living organs from the rigors of being alive inside a human body. Good night.
Roi

Saturday Morning Post-Op Update

Good morning everyone....
Just wanted to let everyone know that considering all things AA is doing pretty well. Neuro-Surgery is happy with his progress up to the moment and all was well with his 8am Cat-Scan this morning. The scan went well enough that they will be discharging us from New York Presbryterian and letting us go back to Sloan to recover further. He had a slight fever last night but after an operation that is very common to have within the first 24 hours. His temperature has now gone down and is more stable. He has now been approved to drink clear fluids like water and apple juice. He so far has had 1/2 an ounce of water which is great and we will try apple juice once he wakes up from his nap. He has already watched his Thomas the Train show and his other train cartoon Chuggington while being pretty alert to his suroundings. We also wanted to thank one of AA's doctors, Dr. Lightner for coming to see us on her day off. She came to visit us and see how Mr. AA was doing. We truly appreciate the gesture because we were able to spend an hour with her and it was amazing because she sacrificied an hour away from her husband & son in order to see how AA was doing. Not too many Doctors do that any more. Thank you soo much Dr. Lightner. We love you. We will keep you all updated as we get more info.
Roi

AA Is "All Done" With The Procedure

Everyone,
AA just got out of the procedure and is looking very good. So far waiting for the surgeon to come up to brief us but the anesthesia doctors said that all went well. They were amazed that as soon as he awoke and they removed the intubation tube that the first thing he said was "All Done". We now hope that we all are "All Done" with anything else for a while as we get a step closer to getting AA CANCER FREE. Thank you all for the prayers and faith we love you all.
Roi. ��

AA Just Went Into The OR

AA just went in to the OR. Please, please , please Lord protect our boy and your Angel. In Jesus name we pray.
Roi

Decrease potassium and magnesium

AA potassium and magnesium was low so they had to give it to him through the IV then have blood work then the OR...I can't stop crying...Roi also broke down...so glad my mother is always by our side to comfort us. Dad told us that Beemer is crying at home for no reason...we think it's for AA

AA's Brain Procedure Tonight

This is the procedure that AA will be having today in order to relieve the pressure that is building up in his head. The pressure is building due to blockage.
Roi

Emergency Surgery

This nightmare does not seem to end...AA was transferred to Cornel Hospital pediatric intensive care unit (PICU) 10 min ago to have emergency surgery. He will shortly go into the OR to have a shunt placed in his head to relieve the pressure that is building up again :( My poor baby :(

Slow But Steady

Hello everyone!

We hope that you are having a good week. Well, for us it has been a slow but steady week in terms of AA's progress. He is starting to feel the wear down effects of the chemo and has been really tired, weak, sensitive and cranky. Simple things like too many lights on, or too much noise seems to irritate him more these days and he even gets bothered if I (his Dada) eat near him (many chemo patients are bothered by smells such as perfume/cologne, food smells, etc).  He may be starting to get Mucositis (internal sores in the mouth, throat and intestines caused by chemo) again because his food and liquid intake has gone down. His appetite has not decreased entirely, but instead of eating three times like he was last week, he is now eating 1-1.5 meals a day. I will take that over no meals. The amount of gray hairs I grew last month from the stress of him not eating is ridiculous, and let's face it, they probably don't look as good on me as they do on George Clooney. 

His crankiness could also be related to his lack of naps. Since we've been home for the last couple of days he has not been taking his normal 2-3 hour naps that he has taken his whole life. He seems to be having problems sleeping for long periods this week and woke up often during his night sleep on our first day home from Sloan. Good news is that today he had his first hour and a half nap since being back and last night slept much better throughout the night. Hopefully he just needs to get used to home again.  Hopefully that's it.

Some more good news is the fact that today he had two normal bowel movements (sorry to be vulgar, but he did number 2). This is huge because for almost a month he had diarrhea and in some cases up to 7-8 times a day. This helps us in knowing that 1) he is eating better and 2) the intestinal bacterial virus he caught in the hospital is probably completely gone and his system is back to normal. Tomorrow we head back to the hospital to check his blood levels and see how well his defenses are, and to get some fluids as he will be getting a chemo called Vincristine tomorrow. Its a treatment that we should be back home from in the evening, being that he does pretty well against this chemo. Glad that I was able to share some news with you all and will continue to keep you updated as the week goes on. We pray for you all in gratitude of the wonderful prayers you send our way. Please continue to pray for all the sick, it's amazing how prayer, faith, and belief can make a difference. We love you all.
Roi :-)

Glad To Say We Are Going Home.

Discharged Home

Blood transfusion went well this morning,the team came by and said they will do the echo in a couple of weeks giving it time for the meds to get out of his system so AA is able to go home in an hour :) he gets one day off as he return to the clinic on Wednesday for blood work.

Blood Transfusion

Up at 520am since they are premedicating AA for blood transfusion. Waiting for the blood to come up as he eats his plate of mac & cheese.

Weight Gain

Chemo finished at 7:30 pm, blood culture was done from that line,echocardiogram set up for tom to make sure AA's heart is not damaged then probably will be discharge with no IV this time since he is eating and drinking so well. So much that he gained almost 2 pounds in one week....yessss...our "gordito" is coming back :)

Congrats to the NY Giants from AA

Day 4 of Chemo

LAA's heart rate is still rapid but the good thing is that the doctor "thinks" it's because of the chemo and the abnormal EKG is because of a anti nausea med so they say if this is true then he will be fine once these medicines flush out his system with no long term effect on his heart....praying this is the case :) AA ate mac & cheese for breakfast (an adults size plate) Chemo should finish to tonight at 730pm and if all is well we should be getting discharged tomorrow.

Chemo Day 3

Day 3 of chemo...AA is doing well although his heart rate is elevated since yesterday. He usually runs between 110-120 and he is now running between 160-170 :( They did an EKG, a CXR and some Blood Cultures to see what could be the problem :(. Praying it is nothing serious. One chemo is infusing since yesterday which finishes tomorrow. The other one will be started in a couple of hours.

Chemo Day 2

AA ate 3 meals yesterday...had not done that since before thanksgiving :) He did not throw up at all and had diahrrea only twice yesterday. He also slept through the night. This morning he refused his normal breakfast but is having mac & cheese for breakfast instead :) I think the megac (medicine to open up his appetite) is finally working :) He will get chemo this afternoon praying it goes well.

Chemo Day 1

The morning started a little rough as AA cried and plead to go home as soon as we got to the hospital...I cried with him as I saw the desperation in his face :( The afternoon is better as we see AA eating one of his favorite foods pizza or how he calls it PiZZI PIZZI. He had a small personal pie with two cups of OJ...the most he has eaten in a while. Just found out that his kidney test that was done on Monday was good :) Still waiting to get chemo but he already got his premeds (to prevent allergic reactions).

AA Jan 17th Update

Things Have Been Better!

Coming home this weekend ended up being a WONDERFUL idea! As was last posted AA ate for the first time on Friday.  Even though it was one meal it was great to see. He also ate 1 meal on Saturday and 1 meal on Sunday. He also had some orange juice today but did not eat. Well tomorrow is another day.  We did have to come home with IV fluids but it was well worth learning how to change IV fluids and programming the IV pump.  He was a bit more like himself, but not there yet. Today's hospital visit was a check up on his blood levels and his doctors were happy with all of his blood levels. He had a hearing test today and seems to have a lost a bit of his high frequency hearing in his left ear due to one of the chemo drugs he is getting. His doctors are not entirely concerned yet and will continue to give him the same dosage of chemo for the next round. He will go through a new set of scans and tests all over again after the next round. He also had a kidney test that we do not have any results yet of. We hope that he has suffered no damage to his kidneys,as some of his chemo drugs are known to cause kidney failure. 

Today he got a medicine for the first time that should help him in getting less sores in his mouth, throat and intestines while receiving chemo. These sores that he got during the last chemo round were the main reason he stopped eating as he did. In addition he also was given a medicine to boost his appetite because he has lost so much weight during these past four weeks and we really have to do everything to get him to eat during this next round. We have never been able to see his rib cage and spine the way we are able to see it now. We hope that this next round will be easier than the last.  We will enjoy our next 2 days off at home and then get ready to be admitted again on Thursday for the next round of chemo.

Roi

AA First Full Meal Since Dec 21st

Everyone,
We just wanted to share with you AA eating a full meal for the first time in a very long while. He had some rammen noddles that were very tender and I had to feed him by hand given that his mouth may still be sore from one of the chemo side effects. We were so very happy to experience it. He also had some mac and cheese today so it seems that slowly but surely he is coming back. Thank God as always.
> Roi

Home Is Where The Heart Is

“Home is a place you grow up wanting to leave, and grow old wanting to get back to”   John Ed Pearce

Today Thursday is the first day we are back home since Christmas Day & the day after Christmas. Over the last 25 days we have been in the hospital 23 days, I even knew the hospital menu by memory already. It really feels wonderful to be back home even though it will be for only a short time because we start chemo again next week and do not know for how long we will be in the hospital again. We see this as a good thing and look forward to recharging. AA is doing better, better spirits, still not eating or drinking and his blood counts are getting better as well. Nonetheless, we are home and will still keep you posted over the weekend.
Roi

As My Son Says, "All Done".

Going home going home going home. Yeeeeeeessssssses. Thank the Lord.
Roi

Calm Day

Today was another calm day thankfully. His counts overall are getting better with the exception of a specific part of his white blood cells called ANC. This count is at zero (0) and it needs to be at least at .5 for the doctors to see that he is healing properly. Doctors feel this is normal because he did get some pretty intense chemo medicines this time. His spirits were okay today, he had some Occupational Therapy and some Music Therapy as well. These will aide him in pushing forward towards recovery. We tried getting him to walk but the last couple of days he has not wanted to. Maybe soreness from this weekend's walks or joint/muscle soreness that many chemo therapies give patients. I started massaging him more frequently through out the day and even got him some heat pads to put on his hips, knees, ankles and feet to see if that helps him out. He still has not eaten or had anything to drink but that will be changing soon. I am certain of that. He has been more receptive to food today and even asked me for a piece of quesadilla. He did not eat it but he held it for about an hour. At this point any interaction with food is good. As for roommates, they moved to another room tonight. Just us again in the room. I told Michelle we should just sell our place and move in here. Just kidding of course. I miss the trees and tranquility of our neighborhood and not to mention our other little boy Beemer. Good night and God bless everyone.

Roi

AA Getting Music Therapy

AA Participating in Music Therapy

AA started getting music therapy this week and has enjoyed it even though it is for brief moments. Hope you enjoy seeing him play a bit.  

Roi

New Roomate Is In Extreme Pain

It is sometimes very incomprehensible to me how some parents can let their children suffer more than what they already suffer. Our new roommate is in very apparent pain and all the mom does is hush her son up. Com'on give the boy some pain meds to help. She finally wised up and called the nurse. Let's see if that helps the poor boy. It's bad enough that these poor children go through enough with all the procedures and chemicals they get pumped into their bodies. You and I will probably never understand their pain unless we go through a similar experience. There is no way that being in pain is a positive experience and your body needs all the positive energy it can to heal properly. Pain does not get us closer to happiness or God. God grant peace to this boy even if it's drugged up peace.
Roi

Could This Be The End Of Cancer?

It's a disease that kills millions a year and a slew of hoped-for miracle treatments have gone nowhere. Now scientists say vaccines could hold the key—not just to a cure but to wiping out cancer forever. Please follow the link below to a very informative article that may offer hope to many of our family members and friends that are currently battling cancer. Please forward the e-mail as much as possible, it may just help to save a life one day. Let's Fight Cancer together and try to make a difference. 

http://www.thedailybeast.com/newsweek/2011/12/11/could-this-be-the-end-of-cancer.html

Thank you!

Roi

AA Playing With The Hospital Bed

First AA tried checking his temperature now he figured out how to make the headrest of the bed go up and down. 

Roi

Genetic Testing

Today marks week 3 in the hospital but like my hubby says I don't care if we are here for a year as long as our little boy is cancer free. Today we signed consents for Sloan to do genetic testing on AA. They will check to make sure he doesn't have the gene that produces other types of cancer. I am not even worried because with God's help all the tests will be negative. Happy to say he had a good day, walked around for an hour and a half and got occupational therapy in his room.

The Blue Print of Who We Are, DNA.

God Is Good!!!

AA gave everyone a scare last night where he attempted to walk and he was dragging his right side for a couple of minutes. I prayed all last night and was determined God was going to make him walk today. After not walking for almost one week AA walked for about 2 hours today with no dragging of his right side...God is Good!!!

Blood Transfusion

AA needed to have a blood transfusion today and although my mom donated blood for AA yesterday,it is not available for a couple of days...what a bummer. The good news is that he got premedicated and therefore he had no reactions to the transfusion. No luck with food or drinking today but was is being more and more animated.

Thankful For A Good Day

As I watch my husband holding AA's little hands together and prating pray. I also take a moment to thank God for allowing AA to have a good day. Although he has not eaten a meal since dec 21, he is definitely looking much better everyday. He even participate in music therapy today by playing the tambourine while daddy played the bongos and the therapist played the guitar, I wish I was there to see but I feel just as satisfied to know that our little boy is starting to move around more :)

AA Asking For Meat

We are so happy that AA was actually asking for some food. His last full meal was on December 21st (15 days ago). Thank God for the bread he ate yesterday and the small pieces of meat today. It's amazing how such a small thing as a half slice of bread or a small piece of meat can make a person so happy as we are.
Roi

I can take my own temperature

Missing My Boys

Morphine Allergy

As per daddy, AA had a good day since he ate half of a bread after getting pain medicine, was more active and playful. What I saw when I got to the hospital is my son covered with a red, irchy rash....he had an allergic reaction to a pain Morphine he had gotten. I had them give him Benadryl immediately and I put on some cortisone cream I had from home and the rash is starting to look a little better. AA still has diahrrea and his poor butt looks raw :(

Stomach Infection

We found out last night that AA has a bad infection in his stomach and so they started his on another antibiotic :( Praying to God that it clears up quickly and his count goes up soon.

1 Week In The Hospital

Today Tuesday marks 1 full week of being in the hospital with AA. We see improvement in him, especially from Saturday. Saturday was a rough day for him and for us. The good thing is that he seems better. He does not want my mashed potatoes any more. I guess he got tired of them but he tried drinking Pediasure which is a milk supplement and he actually liked it in both vanilla and chocolate. The Doctors prefer he drink that given that it will get him better quick. His counts are still low and he may be on schedule to get some chemo today but it all depends on his blood cell counts. We will keep you posted as always. So far the first three days of 2012 have been good.
Roi

Missing Your Smile

AA's had a better day than yesterday. He only had diahrrea 3 times today, and his private area is looking much better with the medicine we have been putting on, he still on antibiotics but the infection seems to be gone. He is still not eating, drinking or even nursing because of the pain from the mucositis and he is not walking yet but at least we got to see him clap his hands several times today while watching his show and he even smiled...the smile we miss so much.

New Year Update

AA had NO reactions to any of the transfusions yesterday (although they didn't think he would bec they premedicated him to avoid reactions since he is know to have reacrions often) He started to have diahrrea again yesterday 6 times :( they are going to repeat a stool test on him to make sure he doesn't have a bad infection in his belly (the one they did last week was negative), the antibiotics he is getting for the ports infection is negative so that means the medicine is working :) He is still neutropenic which kills me because his mucositis is NOT going to get better until he is no longer neutropenic :(