Getting Ready For Another Hospital Stay

First I want to apologize to all my family and friends for not updating sooner. My days are filled with getting Alec up on his feet and caring for Sean who is peaking a year old already, YIKES! In any case all good news, Alec's feeding tube was pulled last week. He is eating really well, although it could still be a decadrone effect, but we'll take it. We are off chemo for now. Biopsy on the brain is a definite negative for metastases. We are not sure about the c-spine though because once again we can't biopsy it. He will have a Ctscan in about 2 weeks and an MRI in about 2 months, we will be watching very closely.
He was put back on decadrone; a steroid not, not the kind you are thinking of that athletes abuse this type has the opposite effect and tears down the muscle walls and depletes vitamins and minerals. Sounds really bad I know but when we were weaning him off this he experienced really bad headaches and was crying. The wean was to fast and he still had meningitis, not bacterial so please don't get nervous. He still has some inflammation and water in the brain and just needs a little more time. In another week we are going to start to wean him again but at a much slower rate. He complained of a headache today on and off, but hey we all get headaches right. He appeared comfortable though.
His current meds are as follows:
Acyclovir 3x a day (prophylactic from transplant)
Bactrim Mon-Wed-Fri 2x a day (prophylactic for pneumonia)
Reglan 2x a day (helps move his digestion faster and helps with his vomiting)
Deacadron 2x a day (the evil steroid)
Holistic meds
Thymus spray 2x a day supports thymus gland which might have been damaged from radiation.
Selenium 1x day, helps inflammation
Ashwaganda 1x a day promotes stem cell production and brain repair, neurologically
Bosweilien 1x a day, for inflammation
NOW multivitamin 2x a day this is given 2 times a day because of his decadrone, sometimes altered though is he has a can of Nutren Jr.
Monavie (acaiberry)antioxident, immune support
Goji, immune support and known for it's happy berry effect
CodLiver Oil, in a yummy berry flavor he really likes this one
Mushroom extracts from 18 different types, ya 18 who knew there has been studies in which tumors have shrunk from using this method alone!
PaleoMeal, extra protein to replace what the decadrone is doing
GreensFirst, has grass, dandelion, anything you find growing out of the ground is in it.
Flavin7, berry extracts from Hungary
Flaxseed Oil
We are being admitted into St. Charles on Monday at there rehabilitation center. Alec can't walk at all, or even balance as he was able to do before. His neck muscles are still really weak from his craniotomy. He has a hard time reaching for things or even holding onto things he shakes a jerks his hands alot. He still wants to do everything himeself though, go him. He knows he needs help and he is fine with it, but wants that feeling of accomplishment. We will be at St. Charles for about 2 weeks. He will be getting intense physical therapy as well as occupational and speech.
He seems to be okay with going into the hospital, just concerned about getting his bologna we get at Wholly Natural, the local holistic store in East Moriches I shop at for him. I do get to Trader Joe's also, but for a quick pick up it's nice and close. Tonight when I was tucking him in he said, "make sure you bring enough food for the hospital". He has accepted his diet and doesn't mind it.
As for the butterflies, OH MY GOSH, I still don't have a total but tomorrow I will post a picture of Alec with all his butterflies. There has to be close to 2,000 of them though. Aquebogue Elem, our cousins friends and family. North Fork Bank, well Capital One now :0) it is amazing how many people showed there support. Thank you.
Well I need to go fold some laundry, what else is new.
Bye for now,
Amy

Home Sweet Home

We are home which is wonderful. Alec is doing well with his feeding tube. I have to hook him up at night and then 3 boluses during the day. He is eating, but very little. Today he slept alot, so much so that I phoned his neurologist. He isn't complaining of any headaches, but he is dizzy. He had an episode earlier where he kind of gazed out the window and I asked him if he was okay and he wasn't there with me, weird. And then he looked at me and didn't make eye contact, you could tell he was not feeling right. At that point he said he was dizzy. I took his temperature and it was normal. He can't sit without support, so I put his walker in front of him at the kitchen table to act as a barrier and a pillow behind him and a no slip pad on the chair (we have wooden chairs, very slippery). It is working out very well, he was drawing Darth Vader yesterday and Luke Skywalker, what else is new, my little Jedi.
Okay while I was typing this his neurologist phoned me back, she said he is probably still adjusting to the shunt and the pressure. When he gets up gravity takes over for the shunt.
Well my little man is calling me and Sean just woke up also, off I go. By the way I can't believe how many butterflies we have gotten. I havn't actually counted all of them yet but it's definitely in the neighborhood of 1,000+. Thank you so much! I don't think he has enough ceiling or wall space for them :0)

GREAT NEWS!!!

My prince has been getting comfort from Fentinol, not sure if my spelling is correct. We have gotten some really great news. Dr. Egnor came out of surgery very pleased, as it turns out they had to reopen his original incision sight, cut away bone from his skull in the cerebellum region to allow room for his brain to breathe so to speak because he was severely inflamed. Dr. Egnor feared that the swelling was pushing on his brain stem which could have resulted in death.
Of course these findings only came after Mark and I demanded an MRI because he was in pain. Then the surgical procedure changed from 3rd ventric with possibility of a shunt to a needed craniotomy decompression. We were hoping that this would solve the hydrocephalus but it doesn't look promising. We have O.R. time scheduled for Thurs. for the possible shunt.
In any case the most awesome news is Dr. Egnor reported to us immediately after surgery that he feels strongly it is NOT recurring tumor in the brain. That it is as Dr. Atlas and Dr. Gardner from NYU concurred, it is radiation scar tissue.
That's right you read correctly NOT :0)
We are still waiting for the official pathology report to come back but Dr. Egnor said there was very little blood, and recurring tumor would have bled. For those of us who are unfamiliar with solid tumors, they have blood vessels that feed off of mostly sugar and foreign chemical hence the reason for low sugar, low carb and organic koscher diet.
Also, report is in on spinal fluid:
NEGATIVE for disease, :0)
We are heading in a really good direction. His wholistic medicine will continue. We still don't know what the spinal lesion is. It can't be biopsied, but it has been stable.
Alec had an ingie tube dropped today (feeding tube) he tolerated pretty well. This was a long time decision coming. Since he always seems to be NPO he hasn't eaten in 4 days. This is a really good thing though. He will be getting his nutrition while he sleeps, and we will encourage his eating when he is awake. I want him released from the hospital with the tube for a little while; so I can do tube feedings at home with him as well for a little bit til his weight comes up.
Thank you for all the prayers that have been said and candles that have been lit. I know God can't ignore us our prayers stretch from Long Island to Connecticut to North Carolina to Vegas to California even as far as Ireland.

1 year later and here we are again

Here we are exactly one year later to the date, had this not been a leap year. Alec was rushed to the hospital after waking up with an excruciating headache. Alec never complains about pain, EVER! He is so amazingly strong, so when he said his head was hurting while in tears and holding his head we knew something was wrong.
He was admitted immediately and taken for a CTScan, he has Hydrocephalus aka, water on the brain.
He was given Morphine for the pain and brought into the operating room within 2 hours. The Dr. put an external cathader from his brain to a drainage to releave the pressure as a temporary fix. He was scheduled for an exploration of another 3rd Ventriculostmy with the possibility of needing a shunt.
We were taken down to the OR and Alec decided he didn't want the procedure today and spiked a 103 fever from being normal the whole time, even from the ride from PICU to the OR normal. Of course the operation was postponed and here we sit in ICU until Monday, where he is scheduled once again to go into surgery.
He is not eating and had an awful reaction to the morphine. I demanded that it be stoped and him given Tylonol. He was irritable, whining, restless, his face broke out into a terrible itchy rash. After giving bennedryl and stopping the morphine he looked and felt alot better.
He is not eating that much, well really not at all. He was NPO yesterday because of the operation and by the time we got back to the room it was 4:00 pm and getting late, he had some Pediasure but vomited it up a short while later and of course the force from vommiting caused him some more head pain. I am going to start him back on the Reglan, it was working really well for him at home. It helps his gut move faster. Well I will try to update again later.
I got some beautiful butterflies from Florida, thank you Jake and Luke. Also from Cody, Marc, Greg, Aunt Irma, and Raol :0) must be a new family member.
They are hanging in his room already.
Take care.
Amy

PetScan Results

I know it's been a while since I updated, as usual there are not enough hours in the day. In any case the consensus is that the "uptake" that was noted from Alec's PetScan can still be scar tissue from radiation. The only was to know for sure is to continue to be scanned and monitored. Seeing how we have no previous PetScan to compare to, he could have had uptake the whole time. He will have another PetScan in about 6 weeks. I am not a big fan of this test as it produces radiation. Alec's Dr. feels and I quote with his heart to hearts that this is not a sign of recurring tumor. Alec, at the time was improving, walking better, balancing better, speaking better, all around improving.