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

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

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

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

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

So happy to be finally home after 1 long week at the hospital....AA tolerated the blood transfusion well today and now is running around the house touching and playing with everything in sight....he looks so happy to be home again. Beemer is also happy to have join us at home as well:)

Ok...so there is a delay in discharging AA home...he will need a blood transfusion...they are premedicating him now :(

Yessssssss!!!!! Chemo with rescue drug is finally over and AA had no allergic reaction this time....God is good :) IV Fluids tonight and lots of blood work tomorrow then home by the afternoon....I hope :)

AA is resting comfortably right now as they started the rescue drug....will be staring at him as I pray for the next 8 hours

Getting a little nervous as we wait for AA to get his last chemo for this admission. Since he had such a severe reaction (anaphylactic) to the rescue drug the last time...they are setting up emergency equipment in his room, and they are premedicating him to try to prevent any reaction. They decided to keep him until tomorrow afternoon just to make sure he is ok for 24hrs after receiving this med. Then back on Friday for outpatient chemo and home this weekend.

Bonding with my dad as we both donate blood for our favorite little man...we love you AA!!!

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

Central Line is in his left upper chest area and correct placement was confirmed ...first chemo just started now.

I am a big ball of mess as my baby went to get a central line placed and the Broviac removed :(

After crying for hours I have no choice but to accept the fact that Sloan does not carry the proper equipment to fix my son's Broviac so now he will need two surgical procedures. The first one will be tomorrow to place a temporary port then in a couple of weeks to place the permanent one.

What a night.... I haven't slept since AA woke up at 2 am and went back to sleep at 4 am where he was immediately woken up by his nurse....long story short his Broviac (where he get chemo,IVF, blood work) is not working....they put a temporary line in his hand which already fell out and Surgery was called to see if they can fix it....I am sleep deprived and now freaking out about possible surgery to put a new Broviav in...so stressed.

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

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

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

-Michelle

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

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

-Michelle

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

-Michelle

Sunday!

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

Saturday

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

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

-Michelle

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

-Michelle

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

-Michelle

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

-Michelle

Your Help Is Needed

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

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

-Michelle

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

-Michelle

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

-Michelle

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

-Michelle

Please Help Andrew Aidan!

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

-Michelle

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

-Michelle

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

-Michelle

The biggest luck we have had with this whole ordeal is that her great medical sense caught the tumor in its very initial stages. I love her so much for that.

Very thankful for a beautiful day of life that allows us to continue this fight for AAs life. Very thankful of my wife for being such a great practitioner

Today was an ok day. AA only vomitted once and his Neuro Opth appt went well. MRI results was not not bad nor good....ugh! Results are being sent to AA's Neuro Surgeon in LIJ and an appt was set up for this Fri after it is compared to his previous MRI. (praying really hard)

-Michelle

Please Help Andrew Aidan!

Positive energy=Positive results=beating the hell out of cancer.

In human nature there are people that settle . Settle for what life gives them. Against cancer you can not settle. You Fight until you get your way. Never quit

Yesterday was a better day for AA. Two new chemo were given and he did pretty well. Had a little reaction to one rescue medicine but doctors figured it out.

Good morning. Today we stand up once again to fight against cancer. It invaded our family a month ago and we look forward to the day when we are the victors.

Today has been one of those long days that all I did was cry. It started off this AA's Neuro Surgeon requesting an immediate MRI because there is a possibility that one of the brain surgeries done on him is no longer working and therefore if it is true,he will go back into the OR to have a shunt placed, to help drain the fluid in his brain. MRI is scheduled for tomorrow at 10am. Then AA ends up having a bad allergic reaction to one of the medications that was given to him. This medication was not one of the chemo meds but a rescue med (medication to preserve his kidney and other organs) being that he really needed the doctors chose to premedicate him with all these other meds to prevent another reaction and 30 mins later start the rescue med again

-Michelle

Thank You For Spreading The News!

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