Hello my friends =) Well we made it through Christmas and New Years. Alec continues to be stable. We'll take it. We continue to work very hard with him pushing him everyday, although he does get some down time. He still remains off high dose steroids and is just on a maintenance dose. We haven't had his cortisol checked in a while so I'm looking to do that and also have his crp checked again. We get that done in between MRI's; it measure if there is any inflation in the body, which in terms could be a sign of tumor.
I have joined the parent board of Kidsvcancer. I don't know how Nancy finds the time to do what she does but she truly is amazing. Kidsvs cancer is doing some awesome research with brain tumor tissue. I like to stay in the loop, it's an insurance policy for me. No surprises will ever be thrown our way. I had fun organizing the Kids Bowl A Thon with great assistance from Cans for Cancer.. THANK YOU GUYS!!! It's was a really good turn out and the best part was that Alec was involved. Pictures are posted on my facebook page. I was also very excited to hear that Guardian Brain is teaming uo with Schneider's for a Brain tumor support group. I think the kids need it to which is something I was discussing with Mary. Not so much as to sit in a circle and talk about their "feelings" but the younger gang, like Alec, Hannah, Danny, and our new friends Tanner. Can, well just be kids =) The supposrt group is primarily in Nassau but looking to come out here to Suffolk which is great!! They too are getting really involved with research and you know I am going to be all over that. Guardian Brain is having a fundraiser on April 18th at the Brokerage Comedy Club in Bellmore. I can't wait!! Tickets are only $20, you can call me/ e-mail or of course facebook me (Amy Carlin Mardjani) if you are interested let me know so I can start forming tables. It is going to be a fun night.. whoo hoo!!!
Good News... Alec's PA is expecting and having a girl. Alec laughs when I talk to him about it. I'm not exactly sure why, I guess he kinda thinks as Dr.s and those in the medical profession as such.. I guess they can't be parents if they are Dr.'s.. LOL not to sure what he's thinking but he laughs and that's all I care about.
He is doing great with his Dynavox (His touch screen computer device for communication) It is taking alot of time to tweak how he can use it, but he's getting there and is not objecting.
Alec really has a great team this year in school between p/t, o/t, speech, vision and of course Mrs. B (Buccos) Alec still can't tolerate anymore than a 9:30- 1:00p.m day I sometimes this he's just trying to get home to play the wii or x-box. His day is always jammed pack with therapies and even once home. I drop his ng tube for supplementing feedings and hydration. He has to ride his bike (motorized pedals), go in the stander, vibration therapy. It's non-stop.. but it's going to work I know it is. He gets a kick out of the vibrating mechanisms I attach on his hands for stimulation. I call hum a ladybug and he cracks-up. We try to get him into the pool for water therapy. He actually needs a flotation suit better than the life jacket he has. His life jacket is just to restrictive. We found one in the abilitations catalog we'd like to get him. We are trying to get him into see an orthopedist. We are concerned with his head drop and being that he had radiation to the spine we want his spine monitored as he grows. Also of course his hips and he is turning his left foot out. It's hard to explain. He has braces but without them on his position is really bad and to me has gotten worse not better. I was told thats what the braces are for, well duh I know that. I have an appt. in March =/ that was the earliest appt. I could get. His MRI's will be shortly after that. I can't believe it's peeking nearly 3 years since dx. 2 years left and I will feel better. I met up with another mom, Litia and her son was diagnosed at 3 with Medulloblastoma. He didn't walk for nearly 8 years he's 11 now and walks fine. She restored my hope and just thinking about that keeps me pushing Alec. She to of course said it's a lot of work, but look he's doing great and he is 11 now =) and still cancer free!!!
It's been along time since Iv'e seen Alec's wholistic Dr. she of course doesn't take our insurance. But I want to take him back. Alec has been stable with his supplements he's on now, but I'm wondering if their is more we can do to perk him up a bit. I'll keep ya posted on that one.
Kevin is doing well in school for the most part. We've had some concerns that we have addressed with his teacher and the principal and I'm hoping we are on the right track now. In September Sean starts pre-school... Holy cow, to even type that. He is still in Early Intervention but aging out of it. Being that he is turning 3 in April he will have to get his services through the school district. We are going through the evaluation stages now. I think we are going to send him to St. John's Catholic School for preschool.
Well sorry to cut this short but I have to go pick up cookie.
<3 Amy

Season"s Are Changing

Here we are. Cooler weather is upon us on this chilly October morning... which today is my husband's 40th birthday WOW!! :-)
I started alternating clothes, out with the summer in with the fall/winter.

When I found out we were expecting Sean I slowed down on discarding Alec's clothes. Yet now; I can't see that Sean will actually wear them. Alec's raincoat, Clifford, his shoes and my favorite outfits to see him in remain together. I can't see ever being able to put them on Sean. It's a weird feeling, an over protecting feeling I can't break.

As for Kevin, my little trombone player. Well he is growing like a weed, almost as tall as me. We have now reached the bottom of my nephew's hand me down's. Which is another hard situation also. Seeing their clothes, reminds me of my nephews whom I never get to see because of stupidity and heartless words spoken at one of the mose difficult times of our lives. So be it. Okay- enough venting onto more important things.

Our friend Hannah just had her MRI and CLEAR.. Whoo hoo, go Hannah. All though her MRI's remain clear which thank the Lord for that, her radiation and chemo aftermath continue to take a tole, it appears that growth hormone injections are in the near future as they are with Alec.

Now our friend Stanley, he made a trip to ICU recently because his heart was racing, he is now stable and back on Med 4, whew. They wanted to send him home on hospice but Christine is not hearing it! I don't think I would either. His latest scans after receiving chemo and radiation showed no improvement, no growth either which to me is good. I did some research for her, some of which I have as an insurance policy for Alec "Just in case" as of right now they are going to start him on more high dose chemo. The problem is they don't know how much his heart can actually take. Christine feels; if it's his time, God will take him. Stanley told Christine he is not ready to give up, he want's to keep fighting. My God it's so unfair!
Looking outside of the picture I can see both sides, the quality of life concern on the Dr.'s behalf and the save my son's life at whatever it takes Christines view. Pediatric Oncology how does one have the heart to chose that field. I mean I know it's the hopes to make a difference. Save children's lives. But to lose one, I don't know I couldn't do it.
Well I could go on and on but I have some calls to make, Alec's blood pressure has been low lately????? He's off of his Norvasc, and he is very sleepy. He has a cough and Mark is concerned about pneumonia, so chest x-ray today and we'll see what specialist were off to first call to Ms. Alyssa.

Oh but one more thing his new aide in school, Ms. Donna AMAZING!!!!!! They pair up really nicely and of course Mrs. Buccos is still his teacher. His new physical therapist is just what he needs. She is blinded by his disease and just focuses on what he can do and really pushes him :-) FINALLY!!!!! Some people are intimidated by him. Like he is this fragile little egg and what he needs a good kick in the butt!

He is also enjoying his Transformer bowling league, and is an amazing bowler. He even faired well yesterday after Sean dropped a bowling ball on his foot....OUCH!!! and then Kevin accidentally poked him in the eye :p poor kid, but yet still laughs about it when he's awake. He has been so sleepy lately????

Okay gotta run and make some calls.

xoxox
-Amy

Hi all, sorry I know it's been a while. Recently we lost an amazing man in our family. He was a kind hearted, hard working, gentle man. He had battled Alzheimer's for some time now until he could no longer fight.
More research needs to be done. There are medicines out there to slow the disease down, but there is no cure, more needs to be done!!!! The problem is as with most research projects is getting the funding necessary to find a cure. Support, Support, Support- these research foundations such as Alzheimers and Kids v. Cancer so we can find a cure. Really it's up to us.
Some more bad news, our friend Stanley whom we went through chemo and stem cell transplant with has recurred for the 2nd time. It has traveled rfom his kidney's to his heart. He is scheduled for a biopsy on Mon. I went out to see them at Schneider's last night. He is amazing, he told my friend Christine just give me more Chemo so I can get better. It's heart braking and so unfair!!!! I felt guilty leaving the hospital, Alec has his problems but we are home, and it's like they are starting all over again. I feel so helpless, I just want to hug them both and make it go away. I feel Christines pain, and it's burning. I'll keep you updated as i find out.
School's in session, Alec continues to go part-time. We are looking into more p/t for him. He's stable right now, but we want to see him stronger. I have an appt. tomorrow with him in Huntington at a pediatric gym, I'll let you know. I know this is short but i gotta run.
xoxox -Amy

MRI Results

I already updated my facebook page and now on to the blog. Tumor board met and a slight improvement where the ventricles are concerned. The necrosis appeared to have stopped forming, no new areas of concern or improvement where that is concerned.
The c-spine remains stable, no growth in this area. I have a really cute picture of Ms. Alyssa from HEMOC clinic to post. She let the kids cut her hair. Some of you may have read the article already, it was in Newsday. When I have more time I'll post it.
Oh, and Alec also hasn't had any further bouts with his vision since that scare. Not sure if I mentioned it here or just on facebook, but Alec lost all of his vision a few days before his MRI. We rushed him to the hospital. He had a ctscan that looked fine and he regained his vision. We were so scared that this was it. His eye Dr. said he could lose his vision any time or remain low vision forever, it was to hard to tell. For now everything is okay.
Till next time.
-Amy

A Powerful Poem

I have been on the internet lately as we approach the countdown till Alec's MRI's. I came across this powerful poem that I am compelled to share with you, although it's speaking of a mother, it also goes for fathers:

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.
~Author Unknown

Enough said. I am confident my next post will reveal all good news. Alec has been really tired lately, but I was talking to Mark about it and we think he is just going through some brain repair. Mark was playing with him at the kitchen table and Alec told him he wanted to draw, he doesn't draw any shapes or anything we can make out clearly, but it is ART! He snapped some pictures. Alec still can't figure out if he wants to be a lefty or righty, he always seems to use both hands, see for yourself. In the photos he's holding his Poke 'mon cards as he's drawing. Such a good multitasker :-)
-Amy

Okay vision therapist worked out nicely, very impressed! He is alot better than his original therapist during the school year. Speaking of school year I can't believe how fast everything is sneaking up on us. MRI is right around the corner, kids need clothes for the fall, jackets etc.
Alec has been having his night frights again. If he would just sleep at night he wouldn't be so tired during the day. I'm gonna mention this on our next Dr.'s visit next week. We just don't know what to do. He is convinced someone is in his room to hurt him. Still working hard at trying to get him to walk. He is improving with his fine motor skills. When he draws he has smaller strokes than he used to. He has more control :) yay!! I was at a meeting last night at play fit stay fit and Mark said he sat for 2 hours drawing. The meeting or focus group they call it was good. We cried laughed and made some suggestions on how to possibly improve the program. Play Fit Stay Fit is his physical therapy he gets outside of school twice a week funded by the Lance Armstrong foundation. I suggested maybe doing a 10 min. cool down session; I know Alec really needs the one on one which is GREAT!! But he also needs to be brought into the group. There great there so it will be fun to see what they do in a few weeks, can't wait. Ray, one of the program directors donated to us a special needs stroller, it's light and convenient and unlike a wheelchair, it will fit in Marks trunk. And best of all it's light. Did I mention it's light, HAHA. My arms are so big from lifting Alec and his broken down wheelchair all the time, it will be a nice break. It's not something he could spend all day in though because it lacks the supporters he needs, but perfect for quick store run ins and stuff. Other than that just waiting for MRI's and actually to see if he is producing his cortisol yet. Okay gotta run.
-Amy

Summer school is off to a good start. His teacher is a doll, Ms. Dudah. He goes from 8:30 to 11:30. Then he comes home and get's his usual speech, OT, PT, and vision therapy. Not the same day. Some on the same day, sometimes only one service like speech, but luckily everything really fell into place. With the exception of his vision therapist, I don't know about this character. I haven't met him yet and our telephone conversations haven't given me that warm and fuzzy feeling. He planned on visiting Alec in school and Alec is suppose to receive all his services at home, as recommended at his IEP meeting AND documented in his IEP. Which leads me to believe he didn't do his homework on Alec.
The other give away, he failed to look at his paperwork is he wanted me to drop Alec off a 1/2 hour early at school once a week so he can service him. WHAT?? Okay had he actually read Alec's case he would clearly see Alec needs an aid, he can't walk, has a speech impairment. This guy doesn't know our son from a hole in the wall. Who is going to help him go to the bathroom. Not to mention what gives this guy the right to use the building before hours? Not to happy to say the least.
Yesterday we went to St. Charles for wheelchair clinic. YAY!!! Alec is going to get a wheelchair that suits his every need. The one he has now was meant to be temporary and he was 30 lbs lighter, did I mention 30 POUNDS lighter. I still believe he will walk someday, but the truth is he needs a real wheelchair. While working in school, going on trips. He needs addition lateral support, tilt. I am so excited.
We are working with Alec alot on his walking. Well mostly me, Mark is a wimp, LOL. No just kidding, he's not like me though, I push, and push Alec. The minute Alec tells Mark he's tired, Marks like okay and stops. We are going to be starting aqua aerobics soon, so excited. His PT said how great it is and I saw how well he did in the water in North Carolina. And best of all he loves it. He goes on the treadmill for about 5 min intervals. And various other things. We are still working in getting him familiar with his Dynavox, his communication device. He is getting use to it, but another thing to learn.
When I was dropping Alec off to school I noticed some construction going on outside of his elementary school. YAY, a ramp and new walkway. There use to be steps going into the school. Just a few and we did fine getting Alec up them. But the walkway I have to say was for the pits. It was weathered like anything else, but the cracked cement made Alec's wheelchair hault and he would jerk. My poor baby. But look at it now, WOW!!! Thanks Center Moriches for passing our budget to make these little things possible. And also to the staff and faculty for all they do to make our lives a little easier :0)
I don't know if I mentioned it before but they had replaced the doors in front of his school sometime in the winter wheelchair assessable. Alec's medical condition has really been a learning experience for everyone in our small little community. The best part is Alec is still with us to see how much he is loved.
I also attached some beach pictures, I love our beach :-)
Take care.
-Amy

Another beautiful day, Alec had a rough night. He's been hallucinating again. Sometimes he see's a man, sometimes tinkerbell, last night it was a bear. He got really scared and Mark couldn't convince him there was nothing there. He started crying and looked in the distance with fear in his eyes.

It's hard to know what to do; Do you talk to the vision he see's, which I've done before. I tell him okay tell tinkerbell she has to go now, and he does and then he's fine- sometimes. There is nothing there so I don't know if I'm doing the right thing by acknowledging there is something or just keep convincing him there is nothing. It almost seems having him say, you have to go now, works better than trying to convince him.

When I spoke to his PA about it, it was a tough call. He does have brain damage and we are not exactly sure what he can see; he's also at that age where you can have an imaginary friend. I actually use to hallucinate at his age, always at night also and would see animals, tigers and bears walking toward me. I remember it like it was yesterday and I was the same age. Tinkerbell we don't mind, but when he starts talking about a man is in the room and he is going to kill him, that scares us. He also gets reality and imagination crossed. When he plays with his light saber and drops it he thinks he cut himself. It doesn't happen all the time but on occasion.

We went to my cousins the other day and out of no where he started crying and asking, "Am I gonna die?" I don't know where that fear came from. We don't talk about anything in front of him. It's also not the first time he has had an episode like that. I suppose he does know that something is different with him. I asked him before if he feels different or the same and he responded the same. The good thing is that he is showing all emotions, which took a really long time after his last brain surgery. He laughs, cries, gets angry (Kevin thinks it's funny because he troughs a temper tantrum and rocks back and forth) and is a clown at times. He started doing raspberries out of know where; it's hysterical and he cracks up as he is doing it. He use to do this funny voice but he is getting bigger and it is harder for him to do it so now he does the raspberry thing. It's almost like he's rapping, LOL.

Well now to plan the day.

Take care.

-Amy

Happy 4th of July! YAY! Sunshine has finally made it's way across Long Island. We were out enjoying it yesterday, Alec was bike riding and playing basketball in his walker. He tired quickly, but enjoyed being outside. I even got on the teeter totter with him. A little nervous the swingset wouldn't hold me- but it did.

Kevin won 4th place yesterday at his track meet. This is his first year joining track and he is really enjoying it. Sean on the other hand is just enjoying exploring the great outdoors. He doesn't like to be kept inside. 24 hrs a day he says, (side, side.)

While we were enjoying our day yesterday; another brain tumor claimed an innocent life. A strong little man named Mykah earned his wings after he lost his short battle- just a 4 month battle. This was a friend of my sisters whose 9 year old nephew in Oregon was diagnosed just months ago. Surgery was unsuccessful, they were unable to remove the entire tumor and they started radiation and chemo. The tumor was unresponsive, and he lost his battle.

I can't imagine what Mykah's parents must be going through this holiday weekend; listening to all the life around them and fireworks going off, parties, laughter, and just life. They are planning a funeral for there 9 year old son at the same time keeping a chin up for his younger brother. How do you do that? My heart aches for them.

Pray for them.

-Amy

Clinic visit was quick, really quick. The longest part was the drive, it took us and hour and a half to get there when usually it's an hour to the minute. In any case visit went, ahh okay. We met with Dr. Atlas, I was bummed to see his lymphocytes only at .9 normal range is 2.5- 3.5. His over all count was higher in his last blood draw, but still down. And Quest LOST his mitogen response blood. What idiots, they do this all the time, I mean scary who is behind the scenes sometimes.
We were advised to keep him on his Acyclovir and Bactrim for this reason. Dr. Atlas wants to retest his cholesterol, lymphocytes next month. I also want to have another cr-p done. He kind of took that finding with a grain of salt, if there is inflammation anywhere his cr-p will be elevated. Our concern is there should be no inflammation. But he was probably just getting at it doesn't necessarily mean tumor. Which is good, we like that thinking but still get nervous.
Alec's MRI are scheduled for the beginning of August, we are having them done without sleepy juice a.k.a sedation. Anesthesia will be on hand in the event he needs it. There is a continued growing concern with this because with each scan he has pauses in his breathing more and more which means we are getting closer to them saying he has to be admitted and intebated, something we don't want or Alec. I pray he will do okay with this.
On an even more nerve racking note, as some of you know Marks job hit some extremely scary times, alot of lay offs. They are down to a skeleton crew. We have weathered a huge pay cut including no more commissions. Now we get word health insurance changes.
I know that his company has to do what is best for them to keep them a float but we have hit rock bottom. Our normal household bills are the same with less income and now a possible plan includes a prescription cap of only $3,000 ad I'm not sure on medical yet. Mark has been feeding me all this information to contact Dr.'s, Specialist, Surgeons, Medical supply places to see if they take this new insurance. As it turns out they do which is good; but we will have $500 deductible for each hospital/er visit, $50 copay for Dr.'s and then the prescription cap. According to our medical supply place, between his feeding pump, oxygen, ng tubes, syringes, pulse ox machine, bipap machine, suction machine just to name a few we will be maxed out in 2 months.
We'll see nothing is in place yet, Mark is still asking alot of questions. And our new Social Worker, Lauren, at the hospital is a tremendous help, once I get some paperwork on this she's gonna help us sort through it.
We've been doing some talking and it pretty much comes dow to if Mark looses his job, a move to North Carolina might be inevitable. I'm looking at a children's hospital down there, Levine. Checking out schools and where Alec would go. It's just to hard to live here on Long Island, Mark doesn't want to do the city run and I can't blame him. Plus, the commute from our house, forget about it.
Anyhow, on a brighter note we had a nice day at the beach the other day, Alec made sand castles, Kevin was catching some horseshoe crabs and finding shiny shells and giving them to Alec. Sean on the other hand is a beast, haha. He's 2 what more can I say. It's quit comical at times.
He is getting speech services, still not speaking a whole lot. I'm sure he just needs some more time. Well Alec is calling me and we have some running to do.
Take care.
-Amy

Road trip was amazing! Before we left I made a stop at one of our favorite places to go; the library. Anyhow, I took out some short children's books on CD and Harry Potter and the half Blooded Prince on CD (17 discs) Let me tell you what a difference this made in our drive. Our last road trip prior to Alec's diagnosis we drove to PA, Ohio, and DC, an exhausting drive. You become one with the road and antsy and restless. Listening to this book made a HUGE difference. You ge sucked into the story and actually visualize whats going on. Mark also said what a difference it made.
We drove to North Carolina visited some family and made our way to Florida. My first and the boys first drive to Fl. it wasn't that bad. I actually feel a family vacation is so much more meaningful when you drive. Granted due to all of Alec's machines, oxygen, pulse ox, feeding pump, wheelchair, etc. we didn't have a choice anyhow. But I definitely recommend taking more time to drive to your family get away than flying.
Alec's lymphocytes are on the rise and decadrone completely off the table; peeking 2 months now :-) the longest in over a year.
But some numbers causing concern, his CR-P is elevated. According to Jeane Wallace it should be <.1.0 and it's 1.6 and normal range is <0.8 according to Quest Diagnostic. His cholesterol is also very high 228 his cortisol still is not even enough to really register which means his adrenal gland is not producing yet it's own cortisol and for that he is supplemented by his endocrinologist. We are slowly weaning him off this steroid with he hopes his adrenal gland will wake up after sleeping for so long because of the decadrone.
As far as his cholesterol is concerned, we will continue to keep him on a high fiber low fat diet and retest in a few months. As it turns out Decadrone used for a prolonged period of time can raise your cholesterol level. The dangers of high cholesterol is it is used by tumors to make more cancer cells and of course can cause heart attacks and strokes by blocking blood paths to the brain and heart.
And the cr-p means inflammation which can lead to angiogenesis and tumor progression. We added Bromelain to Alecs supplements another anti-inflammatory. Norwegian Dr.s studied the effects of this on Glioma cells and it reduced cell migration. We'll test his cr-p again in a few months.
He is due for his next series of MRI's in July. We don't have a date yet. Well I must run, school is still in full swing, winding down for Kevin and a 2 weeks break for Alec.
-Amy

Pictures are worth a thousand words :-)

Click one at a time over to the left; make sure your volume is turned up. This is one of the supplements I give Alec as I mentioned before, check out this broadcast. I signed up with this company so I can get it for distributor pricing. If anyone is interested let me know and I can do the same for you. I give Alec the Original but I'm going to start giving him the Active, it has the Glucosamine in it, it helps with joint mobility and contrtols inflamation. The Pulse is heart healthy, I'm gonna start taking that one because of my issues.

Other than that everyone is doing well, anxiously getting ready for our road trip. I have an appt. with Alec on June 2nd to check his counts and meet with everyony in brain tumor clinic from oncology to endocrinology and every ology in between :0) We are going on a field trip tomorrow with his school. He is pretty excited to be riding on a bus with his friends. I don't know if I mentioned it before but Alec will be attending East Moriches Elemenatry this summer for a few hours. There will be 4 other kids in his class and his nurse will be with him. It's nice he'll be able to make some new friends.

He has become really friendly with this little boy name CJ in his class. He has had a few playdates with him. CJ kept saying Alec is my best friend, it so cute. Playdayes are really good for him, but really hard. Mostly emotionally for me that is, he can't run or even stand for that matter. But Alec still finds away to have a lightsaber fight sitting down :p

Well I hope this finds you all well.

-Amy

Well another day down. Alec is doing very well off decadrone, YAY! Although I am afraid to say that too much. By now I am sure you all of heard of the Mom who ran off with her son to avoid a court ordered chemotherapy treatment. Tough call on this one. Mark and I were talking; and I for one feel who the heck are the courts or a judge to decide what means a family has to take to treat their child. I mean, it's really a fine line. Obviously if nothing is being done and a child is suffering, well then something or someone needs to intervene.
I came across a few cases online with similar diagnoses of the missing boy. A specific case in Virginia, similar case of a 17 year old. he wanted to treat his disease wholistically. Wouldn't you know it a year later, not one cancer cell in his blood. No chemo, no radiatio, no joke and now no cancer!
Mark and I do believe there is a cure for cancer, Mark feels that it could be as simple as the bark on a tree, but it hasn't been tested. And I for one do to. As for denying Alec the chemo and radiation; I don't think I would have done that. To continue to treat him wholistically like we are doing now, hands down we will be doing this for the rest of our lives. I see a difference, the scans are proof and his blood work is proof.
I actually have to place another order for his MonaVie, it's the acai berry drink he gets. This little berry is stronger than the blueberry! it's AMAZING!! If you want more information on it, just e-mail me. The people of the Amazon are virtually disease free. I mean it's amazing, and packed with so many benefits.
He's still on the Ashwaghanda, Boswellin, Selenium, Mushrooms, Flaxseed oil as well as Codliver oil. Calcium with Magnesiem, his Greens First shake, and the Immune shake by the German Dr., Acytyl- Carnitine, just too name a few. Our meats and dairy continue to be organic and we are a green home. Just a little FYI the Green Works products, not so green.
Labels, Labels, Labels, you have to read them. We use Next Generation for all our soap needs dishwasher, detergent, fabric sheets. It's a little on the pricey side, but you can't put a price tag on your children's health.
We use Method as our hand washing soap. I mean think about the increase in breast cancer and autism, there has to be a connection. A friend of mine just told me a name of a website for cleaning products, I am going to check it out and I'll let you know.
Well I'm pretty tired and everyone is sleeping, I am heading to bed myself.
-Amy

Well we got a stroke of good news recently, it appears that after brain tumor board met, it was agreed by his usual radiologist who reads Alec's scans; that there is a slight improvement since last time. Hey, any bit of good news we'll take.
Alec will also be attending a summer program at East Moriches Elementary for 6 weeks, he's pretty excited to be going to the same school his cousin Justin once attended.
Our schedule continues to be packed with therapies, therapies, and more therapies; but they keep him and us going right. Kevin has been playing double headers lately on Sat.; he really has a passion for the game. He also wanted to sign up for track so he'll be doing that in June.
He also wants to play football, YIKES!! We didn't let him last year but we are going to give in this year. He's never played before but has a strong interest in the game.
Sean will be starting speech services within the next few weeks, and we continue to attend our local library programs for socialization and the Leeway school. He is really shy, I mean really shy. The library looks so beautiful since they expanded the children's dept.; it's definitely one of my favorite places to take the kids.
Well gotta run, heading to Alec's personal trainer, Thank you Lance Armstrong! Oh and they are working on getting a harness for him to utilize a treadmill. We go next week to Stony Brook for a two part evaluation to see if he can tolerate it. They are really emphasising on moving all his extremities and incorporating weights. Weights are so important.
Okay well bye for now,
Amy

MRI Results are in

Stable, All is stable in the brain meaning the necrosis has stopped forming and there has been no further improvement since the last scan. As for the lesion in the spine, that too is seen as stable.
I must apologize for not updating sooner but March has always been a month from hell for us. We tried to stay low key and get through it. March marked the anniversary of his diagnosis, 2 years now and the to the date the necrosis caused hydrocephalus. We proceeded into April cautiously, Alec spiked a fever here and there as the end of the season illness made it through our home. Alec escaped it for a short time though, surprisingly considering his immune system. We celebrated Sean's 2nd birthday in the hospital; Alec was still experiencing some steroid crashing and sleeping a good 18 hrs a day. We took him in for a quick scan because sleepiness is a sign of hydrocephalus and he had one complaint of a headache but with our experience one is all we need. Scan came back fine as his Oncologist PA, Ms. Alyssa and Dr. cited it would but as always, completely understands our concern. His steroid was bumped up, decadrone, uurghh! But with a semi quick taper. He's back down to his usual extremely low dose with hydrocortisole and doing well. As we now apporach mother's day; it's another mark for us. As you remember, we lost him last year, in my arms sitting in the hospital as Mark screamed for the emergency staff to do something! While Sean and Kevin sat in the room next to us with a nurse, So May not another good month for us.
Kevin started baseball, and what an amazing player he is. His game has really improved since last year, he wants to join track this year because and I quote "It will teach me to run faster so I can do better at baseball". How could you say no to that.
Sean will be getting speech services soon, we had him evaluated through Early Intervention and he qualified. They are also recommending a Mommy and Me program for him because he is lacking some socialization skills with other children, and considering he is always around them caused some concern. The meeting to draw up his IEP is in 2 weeks.
Other than that all is the same here, with the exception of me :( I've been battling flu like symptoms for 3 days now. Of course there is some concern being that my niece goes to the school where the 3 cases of swine broke out in Deer Park. But chin up, air purifiers on full blast, and I am quarantined in our upstairs bedroom and husband is in full control.
May is also brain tumor awareness month so wear your gray to show support.
Gotta run hope this finds you all well.
The Mardjani Family

This comes to you a short time after my Grandmothers passing, My Great Uncle, her brother, Barney McGeary has just passed. As some of you know, he loved horses and was an actor. He had some small roles in movie's: Hot to Trot, Kiss of a Killer, Fatel Judgement, to name a few. I was able to down load from YouTube a short part he had in The Golden Girls. If you click on the 3rd square, he is the priest when the time played was at 4:29, Father Callahan. He and my Grandmother remained close even though their was 3,000 miles between them. They are together today.
xoxo -Amy

Hello on this snowy day. As long as we are inside I don't mind it. Meatloaf is on the menu for today, a nice hot wintery meal. Anyhow, Alec's swallow test went really well. He did great with solid food, his rotary motions to chew and break down the food are back with no aspiration, to solid foods that is.
We attempted again thin liquids, well just a regular glass of apple juice. It still is not happening. He aspirated the juice. I have to continue to thicken his liquids and hydrate him through ng; at least for another 3 months until our next swallow study. He is doing very well in school. When I picked him up he was writing R's it was so cute, you could see him really concentrating. He is truly enjoying his school life and new friends to the fullest. He still gets tired during the day and needs a good 2 hour nap. Unfortunately it interferes with therapies sometimes but his rest is needed as much as them. And his therapist are so understanding, it's great. Well gotta run he just woke up.
xoxo -Amy

MRI Day

Whew, what a day! Everyday is like that though. Alec's MRI yesterday did not start off that good, Mark took the day off thank goodness. As it turns out Alec did not tolerate the anesthesia. His breathing decreased, his breaths per minute dropped when he got the first bolus of propofol. They had to wake him up and Mark left the room to come get me, I went in to see what was up. This never happened before with him, he was always fine. So I was told that he was going to have to be admitted, intebated and then sedated. This comes after I told Alec his throat won't hurt when he wakes up. Anyway I asked if we could try scanning him while he was awake, and of course the awesome team of anesthesiologist there agreed and would monitor him. I explained to Alec everything and how important it was for him to stay still for his pictures because we need to make sure there are no cancer buggies, as we call it.
HE DID IT!! 2 hr study. He was in and out alot to change the coils administer the contrast and such. I stayed in the room with him the entire time of course and was right there when he came out. I, of course remained nervous until the results were in because again we never had this issue before, so all kinds of things started running through my head.
End result:
IMPROVEMENT :-) The middle area of the necrosis that had significant uptake previously showed less uptake this time. The necrosis stopped forming. His spine remains noted as "stable disease"
I didn't see the report yet but Dr. Atlas' PA, Alyssa called me. Thank God for her because brain tumor board doesn't meet until Tues. I'll find out what the consensus is from the board then. But she was pleased with what the report had to say.
Some of Alec's supplements are suppose to repair damaged tissue to the brain and probably hyperbaric treatment still showing it's effectiveness.
Then of course leaving the hospital, our battery died, never a dull moment.
Well I gotta run.
xoxo
-Amy

Hello, we are one day away from our 3 month MRI scan. I know Alec is doing AMAZING but Mark and I are still nervous. I was scanning the caringbridge website which should be blocked to people like me and YES you too Kim =} and of course I come across this one boys site, well now a teenager. Once treated at St. Jude's for Medulloblastoma and went there for his yearly scan and after 6 years had a recurrence, it's inoperable. He was feeling fine no signs whatsoever and BOOM! That is when I turned off my computer.
But we remain strong and he does, I continue to treat him holistically. There is website link I added today to the left, click on it, you have to read it! Anyway I came across a product called "complete Immune" designed by this Dr. and Alec will be starting it with any hope this week.
Sean is completely off bottle's and is growing by leaps and bounds. I mean I don't even remember his infant years they just, whew flew by. Kevin also just shot up, he is so tall. Alec use to be just a head shorter than Kev but now Kevin really towers over him. Of course I know it because of radiation treatment he had to his spine, it will keep him tiny. I'm not sure when Alec will be evaluated for growth hormone injections, I think 10, I have to ask and do some research on it. I'm in no rush to have to give him injection after his GSF shots.
Well I gotta run.
xoxo
-Amy

Well what a day yesterday, Alec went up and down the stairs. He discovered when he puts his left foot up the step he goes faster. We laughed about it; and he looked at me and said this leg is stronger. What he doesn't seem to realize was there was a time when he couldn't even bear any weight on his right leg. Even though his left is clearing the stair alot faster, his right leg has to bear the weight while he is doing it. Mile stones just keep getting hit.
Ths morning while we were eating breakfast we were talking about how we are getting a new president today, and I was explaining to Alec the best I could or at least the best he could understand it. He had no care or interest in how we are making history with the first African American president; his only concern was: and I quote "Is he a nice man?" He looked at me with squinty confused eyes, and when I replied yes, he smiled.
Kevin was concerned on missing the inauguration, so he wants me to DVR the ceremony, he even said if there is no room left I can delete some poke'mon episodes :} Kevin was also concerned that now his president books are now out dated, ha ha. He is very much like his father in so many ways.
Well as my home remains quiet I am going to take this opportunity to yet again attempt to fold and put away laundry.
Some people ask about our good friend Hannah, her website is: http://hannahpro.blogspot.com/
or you can just click on Hannah's blog link above Alec's picture to the right.

Jacob's service was beautiful. I can't imagine what Nancy and Mike are going through right now. When Alec was first diagnosed we had the emotional support of family and friends, although only 1 month in, after the first round of chemo- it was expressed how "stressed out" some people are. That is another subject entirely. How some people you thought would never be there for you suddenly were; and people you thought were your rock, suddenly fade away into the night.
Anyway, as much as the majority of people tried to console us, we didn't find, or atleaset I didn't find comfort from anyone but my husband and those I met at clinic.
It's really hard to express how you feel to someone that hasn't experienced what you have. The running to get the puke bucket at all hours of the night, because Alec was getting the "yuckies". Temperature taking and being ready to goto the ER at the drop of a coin. Having to hold your son down and count to 3 for his injections, medicine, chemo, and food intake, what his current anc, wbc, hemoglobin, and platelets counts were currently at.
When it was okay to give Alec fresh fruit and veggies and when they are off limits. So many things. Anyway my point is, this is a whole new chapter for Nancy and her family. As I stood there and she asked how Alec was doing, I felt guily. Here I am with my son getting stronger and she lost hers to the same cancer.
There were no right words I could say that would bring Jacob back or that would have really truly consoled her. She has entered another realm that I pray everyday I never have to face. What she doesn't know is how much inspiration she is to me, and how the strength and courage Jacob had is in my heart and I will carry it and convey it to all I meet.
They started an organization and if you have a moment please look at it:
http://www.kidsvcancer.org/
She is on a mission to find a cure, and she has the medical background and feelers out there to do the research.
Well keep those Gold flags flying high to continue to raise childhood cancer awareness and Gray for brain tumor awareness.
Bye for now,
Amy

God has chosen another Angel

http://www.caringbridge.org/visit/jacobfroman
(Cut and paste above into your browser)
The above-mentioned website is that of a couragous young man, Jacob, who lost his battle to brain cancer; same medulloblastoma as Alec. Words can't even describe the feeling Mark and I are feeling since we heard of his passing. We can't even imagine what there household must be like at this very moment.

It's not right that these children go through so much. They are robbed of there childhood and their education shifts from adding and subtraction to ml's and cc's the focus goes from twinkies to bactrim.

I am not feeling up to updating Alec's progress, although very significant in all area's yay :} We just ask to pray tonight that our friends, the Froman family that, I don't even know nor can I find the words, just please pray for them.

-Amy

Grandma Nicholson Passes at 84 years young

On an extremely sad note; last night my Grandmother passed away. Those who knew her, knew my Grandmother as the feistiest woman around. She was stubborn, proud and would never ask for help. She always had to do things herself and her way, hmm sound familiar.
I am still in disbelief that my Grandmother is no longer with us. My family was in no way shape or form the "Clevers." We were more like the "Adam's Family." But fights and all we were still our own kind of family; to us it was the norm.
I don't know what the arrangements are yet, I will post them as they come in. For now I am planning a trip down to North Carolina.
I actually bought my plane ticket for a surprise visit on her 85th birthday in January, she never knew I was coming to see her. Needless to say I am no longer a fan of surprises.
Sorry to bring such sad news this time of year.
On the upside the boys are getting psyched for Santa. Alec continues to get so strong. We visited his classmates today. Mrs. "B" had a pancake breakfast for them, and she makes one mean pancake :) Alec had a great time and even joined his friends for some quiet reading time on the carpet. He is loving his new friends and they are so kind and sweet to him. He is expected to rejoin his classmate in January.
Bye for now,
xoxo
-Amy

Ports Out, YAY!!

Well today went off without a hitch. This is a picture of Alec leaving the recovery room with Daddy port free :}
Dr. Glick successfully removed Alec's entire port. He asked me if I wanted to keep it; and of course I said yes. This little thing was his life line for a long time. It's pretty interesting looking and you can see the impressions from all the times he was accessed.
After surgery he was uncomfortable they gave him some phentonal, sorry not sure of spelling, and he is doing much better now.
Alec said to Mark when they were leaving, now we don't have to come back here anymore, Marks eyes filled up with the tears because he or I can't even say never, but we are in a good place right now with him. Alec is in a good place now. Everyday some more imporvements. He is eating peanut butter and jelly sandwiches, just regular sandwiches nothing mushed or watered down. And his favorite is fried eggs with ketchup he eats eggs praticlly everyday.
He continues to build strength, balance of course is a big issue but Dr. Atlas said if he has the stregnth it will help him with his balance.
On an educational note, a new nurse was hired and she is only available 3 days a weeks. Thats okay because as it turns out she is one of the awesome nurses from PICU at Stony Brook. We had 2 favorite nurses while we were there, Jason and Pat. So of course when she called I was jumping for joy. I feel soooo comfortable having him in her hands, I know he will get exacly what he needs, she is such an amazing person.
Well I hate to just throw this all at you but I am trying to fit as much in as I can in the short amount of time I have available.
Thanks for your continued prayers. And please pray for all those still fighting.
-Amy

Thank You

Thank you also for all of Alec's Birthday wishes, he is 7 tomorrow, WOW!! 7 =)

Whew, Thanksgiving is over and way too many calorie's were consumed =} It was so nice though. No hussle bussle, dressing the kids in there Sunday best, just us, Football and yummy food.
We have made some wonderful strides these past few days, well since our last hospital stay, yes we were in the hospital last week for a few says. Alec spiked a fever and was going through steroid withdrawls so Dr. Atlas felt it was best to put him back on Decadrone for the time being. The radiation necrosis concern is still on the table so for now, we have to keep the steroids on board.
The really good news is Alec's counts really went up, not talking about just the white blood count which will go up with the steroids alone but his lymphocytes is at 1.01 the highest its been EVER!! The steroids wouldn't effect that well it would but heading in the opposite direction. Thank you holistic medicine!!
Other than that we are doing ALOT more walking. He walked all the way into clinic today with his walker, and with help. But we did it, he did it! And today he ate lunch unpureed. straight turkey and cheese rolls, chewed and swallowed, YAY!!! He is amazing and getting better and better everyday, it's like he's coming back. It's really hard to put into words; but it's truly breath taking.
The count down is on, he is schedule for the port to come out Dec. 8th, yay!!!! which means what you ask, when Alec spikes a fever no more running into New Hyde Park, not that I mind, I would rather; but he can just be a kid sick.
Well as always things to do. Keep praying, your prayers and mine are being answered.
xoxox Amy

A fun video before he was diagnosed

TV Debut

Just got word Alec will be making his TV debut on NewYork TV55 at 11am this Saturday. Other than that we are doing well, school is setting in. Well mornings are crazy trying to get the boys already and of course I am driving him. He gets tired easily but today he really perked up =) Well hope all is well.
xoxox
Amy

Some recent pictures

Of course we have Halloween in there, can you guess who Alec was, LOL A picture of Dr. Hynes and Ms. Moran making a visit to our house to say hi to Alec. This was Dr.Hynes day as our school principal and he wanted to say goodbye to Alec. Our school, Clayton Huey is amazing and we have been so lucky to live in a district with caring and loving teachers and school personnel. Alec's teacher this year is Ms. Buccos, aka Ms. B Alec has a hard time pronouncing her name. She is warm and gentle and caters to Alec. She understands him pretty well even considering his speech impairment.
I am working closely with Ms. Henninger to get Alec a communications device for school. So far it's down to the Tango, I think it is the best for him. He actually was talking about in all night. It will take time for him to learn how to use it, but I feel it's the best choice.
Other pictures of course is Kevin making pumpkin pie with his classmates. And then you see our hospital friends from a couple of weeks ago, Ms. Alyssa, Jan and Ms. Meg talking to Alec's classmates about Alec returning to school and how he is just like them.
Alec has a modified day, he is only in school a short time and gets all his pt/pt/speech at home still. His immune system is still low and he is fatigued alot so this is best for him right now.
He is doing well on his bipap machine. That took alot of tweking fitting that in his day. His pulmonary Dr. recommended it over night, well he hydrates overnight so no good, so when he naps during the day and at night for a couple of hours before I drop the ng tube he is on it. His diaphramn is pushing up into his lungs so the bipap machine pushes pressure in while he is breathing to exercise the diaphram so to speak. He still needs hydration over night his recent MBS showed he does aspirate thin liquids still but his swallowing is improving everyday. I even stopped his robinal, drooling medicine and he is doing well. Occasional drool drips but so much better.
Well I gotta run ENT and then off to swallow therapy.
Keep the faith,
Love,
Amy

Alec's First Day of School in a year and a half =)

WOW, so much time has passed~As Always Keeping busy

Huh, where to begin. Well a couple of weeks ago while Mark was away Alec spiked a fever, low grade 100.4 but right on the cut that I had to take him in for his antibiotic drip =( All went well though. It's that stinky port that gets us every time, but..... It's coming out, YAY!! He is scheduled for Dec. 8th at Schneiders to have the port out. Thank you Dr. Atlas. When he spiked a fever and I brought him in Dr. Atlas felt there is no need to keep the port in at this point but I had to check with Alec's pulmonary Dr. because of course the fear of not being able to extabated him came up. He will be getting an LMA, he won't be completely intubated just a little breathing tube stopping before his vocal cords.
I can't wait, it's one of those bitter sweet things though, it's a comfortable access sight for him, now he will need an iV if hospitalized.
Oh, while scanning the internet I found the following article:


Posted on: 10/18/2005

Autumn Birth Linked to Childhood Brain Cancer Possibly, report Duke University researchers, who studied four different groups of medical records from various regions of the country and found that children born in late summer and fall were more likely to develop an aggressively malignant brain tumor called medulloblastoma.

"Medulloblastoma is more common in kids with autumn birthdates, even after correcting for the higher frequency of fall birthdays," said the study's lead author, Dr. Edward C. Halperin, vice dean of the school of medicine at Duke University Medical Center, in Durham, N.C.

Halperin and his colleagues suspect that something these children were exposed to in the womb during a period of crucial brain development may have contributed to their cancer. Pesticides are a prime suspect, he said, since they are commonly sprayed during the springtime.

Not everyone agrees, however. Dr. Mark Souweidane, vice chairman and director for pediatric neurological surgery at Weill Cornell Medical Center/New York-Presbyterian Hospital in New York City, said that while there "seems to be a marginally higher rate of children born with medulloblastoma in the fall, there's no good basis for saying that it's from pesticide exposure."

According to Halperin, other studies done in Norway and Japan have found an association between fall births and medulloblastoma. And, he added, other research has also shown a link between pesticide exposure and childhood brain cancers.

Medulloblastoma is the most common type of pediatric brain cancer tumor, according to the National Library of Medicine. Symptoms include headache, vomiting, uncoordinated movements and extreme fatigue.

For the current analysis, Halperin and his colleagues examined the medical records of nearly 1,200 children diagnosed with medulloblastoma between 1974 and 1999.

Ninety children were registered with the Central Cancer Registry, and information on 122 children came from a Duke University database. Information on 922 children came from the national Surveillance, Epidemiology and End Results (SEER) database, and details on another 75 Los Angeles-area children came from California SEER data.

The researchers compared birth data for the children with medulloblastoma to seasonal birth data from either North Carolina or from the National Center for Health Statistics.

They found that children with medullablastoma included in the Duke University database had significantly more autumn birth dates. Thirty-six percent were born in the fall, vs. 27 percent in the summer, 19 percent in the winter and 18 percent in the spring.

The statistics for the North Carolina group were similar, with 38 percent of children with medulloblastoma born in the fall, compared to 28 percent in the summer, 18 percent in the spring and 17 percent in the winter. The data from Los Angeles was also similar: 35 percent were born in the fall, 19 percent in the summer, 19 percent in the spring and 28 percent in the winter.

Only the national data didn't show an association between medulloblastoma diagnosis and autumn births. Halperin said he suspects that is because if you look at the nation as a whole, you are lumping together different geographic regions with different agricultural seasons.

Results of the study appear in the current issue of the Archives of Environmental Health.

Halperin stressed the results of this study don't mean "that people should stop spraying their crops or only drink bottled water," but the association between birth dates and cancer development is one worthy of further investigation.



Interesting right considering Alec's birthday is Nov. 29th. He is doing amazing though these days, laughing, playing. He continues to work hard during all his therapies. His teacher asked him what he promises to do if he was president...he put his hand over his heart and recited the pledge of allegiance, how adorable is that.

Well I really want to type more but I am so tired and Alec will be up in a bit, he usually needs a bathroom run at 1Am.
I'll try to update more tomorrow.

Keep the faith!
Love,
Amy

Yummy Fund Raiser Info, hope to see you there!

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Good evening after yet a very long and frustrating day in the medical field, urrgh!! Well today Kevin had an eye dr. appt. as I mentioned he had been getting frequent headaches which might be associated with his eyesight. Well being I was taking Kevin to Dr. Cossari figured I might as well have him look at Alec, now mind you I am changing opthamoligist, to Dr. Kodsi in Great Neck. Well anyway along with my story, Kevin is fine, no glasses needed. On the other hand Dr. Cossari examined Alec, and Alec couldn't answer as fast as he wanted and coupled with that he was falling asleep during the test, thats right very tired. Right away Dr. Cossari is like his vi son is decling, blah, blah, blah. He got Dr. Atlas's office on the phone and spoke with Alyssa, his PA and blah, blah , blah pressure to the optic nerve, ya, da, da, da. Mark stopped by at lunch time freaking out of course and as he waited in the exam room with Alec, in walks Dr. Cossari, didn't even acknowledge Mark or Alec picked up the phone and started talking to someone about writing a resume, what the heck is the matter with this guy.
Needless to say I left there once again disgusted, and now we have to go for a ct scan tomorrow that he probably doesn't even need because of this joker. Well done with him. And of course tonight while tucking Alec in he looked about 20 ft across the room and told Kevin he like his picture it was beautiful. This 8x11.5 felt board picture Kevin colored in? Well thats the story. Alec is suppose to get an MRI tomorrow, excuse me and MRI on Oct. 2 and 3, just his 3 month check up, and now a stupid ctscan tomorrow which he probably doesn't even need. I'll keep you posted.
Please say a special prayer tonight for our friend Jacob in NYC, he is having a really rough bout right now and is expected to go another round of chemo I believe next week.
Hang your gold ribbons high!
Love,
Amy

Updates :)

Well, Alec just celebrated his 1 yr. birthday on Sept. 19th. That is what they call transplant patients, another birthday. Mark is like well 1 yr under our belt, as we are told 5 yrs is the goal to make and chances of Alec's cancer returning will diminish. Only 4yrs left, thats a car payment, and we know how fast that goes.
It was of course bitter sweet. I get greedy, I question our decision to not get the shunt sooner, always what if's, what if. Mark and I had this conversation today. I sit there and somber when I see Alec's friends, it's hard, he should be running with them, going into second grade and dammit just being a six year old child he shouldn't have to worry about what if I miss a dose of medicine. Mark put Alec to bed the other night, I had stepped out for a bit and he told Mark NO, I need my medicine. Mark told me when I came back.

Decadron update, we tried to wean him down to .25 in the evening, well on day 4 his balance started to be off and he was having a hard time swallowing his food, it was coming out his nose, we had to stop his feeding therapy and just worked more on his oral exercises for his speech. I spoke to Alyssa, Dr. Atlas PA and of course she told us to bump him back up, which I knew, so that night I actually gave him a little stress dose and gave him 1mg instead of .50 and earlier than usual and the next morning back to .50 mg and that night back to .50. He is doing fine, well. His pulse ox keep dropping, he has been on oxygen here and there. I scheduled an appointment with pulmonary through Schneider's. He is also really bothered by his allergies right now and we started up zyrtec. In the past he has needed nebulizer treatments this time of year, so considering his history, time of year and symptoms I am not really to worried. I pop him on the pulse ox machine about 3x a day just to check his saturation and he is usually 95 or 96, which isn't to bad. I have been giving him nasal rinses and giving him saline nebulizer treatments and he appears mor comfortable after that.
As some of you are aware September is pediatric cancer awareness month, I was just on our friend Hannah's blog and ironically enough I was thinking the same thing. Pink, pink, pink, everywhere pink for breast cancer, which please do not misunderstand me I think it's great that so much awareness has been brought about this, as well as autism. But I am sad to not see one gold ribbon on the bumper of any car, supporting pediatric cancer research. I mean, none. I don't understand.
Oh, well back to the decardon saga, Alec does not produce his own steroids, his cortisol level is really low and he can't fight natural inflammation responses, another words he has become steroid dependent. My problem of course is the more I read into the decadron there is also eye damage possibilities, well Alec is legally blind now, how much more damage are we talking. I anxiously await my appointment with endocrinology to see what to do, and his immune function are still suppressed because of it.
I of course have started him on some more supplements to see if I can boost his cortisol and immune functions. Please pray it works without and more drugs.
He continues to work very hard during the day, between pt/ ot/ speech/ resource room, home school, he goes all day.
We received his new walker, thank you Mary from Guardian brain tumor foundation. I have to upload some pictures. It is really neat, he does well in it and it really works him. After 20 min. he gets really tired and wants to come out. His legs are stronger, its balance, balance, balance, that is a huge issue. I try to imagine what it's like to be in his shoes, and I just can't. Somehow this little bumpkin manages to smile and, just be Alec everyday. He has started to converse, I mean sparking little conversations. He basically asks questions, shows you something and says what it is, and that's about it. But he likes playing games, looking at cards, like trading cards, and of course eating.
Well on that note I must run.
Keep heavy prayers for all our friends, Hannah, Danny (spunky), Stanley, Joseph, Tia and all our HEMOC friends.
Love,
Amy

Hello Again

Hello all, yes I actually have a minute between baths to drop you a line of update :0) We went for another bike ride, about 40 min. On the back of Alec's bike there is this little trunk and a third strap which he doesn't use and I actually strapped Sean into it and he came for a ride also. It was so funny, I took a picture, I'll try to upload it later. Alec thought it was funny also he was grinning ear to ear.

We had our clinic visit today, all went well, counts continue to rise, although those stinky lymphocytes kind of dragged, I was actually a little disappointed. He was accessed today and did very well with it, they drew a complete immune function on him and crp and vitamin D level. I of course was told I have to get endocrin involved because of decreasing the decadrone, i've been good though, very slow. Anyway they truly are vampires, it was about 8 vials they had to fill. I am hoping his t-cells are up, it takes a few days to get the results back, I'll let you know.

On a depressing side while I was there I ran into a Mom, forgive me but her name escapes me. Her daughter was recently diagnosed with Wilms, I met her during one of Alec's stays in the hospital, Willms is a solid tumor that spread from the kidney to the lungs. Fortunately Wilms is a very curable childhood cancer. While I was there I saw she had 2 blue sheets in her hand, these sheets are given to us to schedule our next appointments, well let me correct myself we are given 1 not 2. I was puzzled and asked her how everything was and she told me her brother, the little girls brother was diagnosed with the same, a peach size tumor found on his kidney. This was only discovered because she questioned her pediatrician to have him checked out, no signs or anything mind you, nothing!! Of course I freaked out in the car, I mean it is bad enough that Kevin has been getting headaches lately, alot. I am waiting for his pediatrician to call me back. Mark told me to calm down he might just need glasses. I mean this is it, once cancer enters your life it's like you can't escape it. All we can do is research, research, research! Luckily I have been able to reach out to so many supporters and look into so many other possible cancer cures or immune boosters outside of prescriptions. The down fall is they are so expensive, it's a shame that insurance doesn't cover it, but there are just some things the gov't can't control and the supplements that Alec is on is one of them. Luckily we are truly blessed to have supporters such as Joey's friends to help us, thank you so much guys!!!
Well I have to run Alec's bath is ready. Keep the faith.

Love,
Amy

September- is Childhood Cancer Awareness Gold Ribbons People and Gray for Brain Tumors

First off I have to remind everyone although everyday should be childhood cancer awareness, September is our "designated month" here is a cut and paste of what will be on Friday evening, September 5, 2008.
The networks will donate one hour of primetime for a history-making interactive television special, uniting the nation as we Stand Up To Cancer, including:
Performances by legendary recording artists.
Over 50 of the biggest names in TV, film, sports and music will participate in the live phone bank, answering calls from viewers who want to donate.
Segments on cutting-edge research -- likely to be reported by network news anchors Katie Couric, Charles Gibson, and Brian Williams -- will include intimate dialogue with the renowned scientists who are making the big, potentially life-saving discoveries.
Celebrity performances and participation in special live and filmed pieces designed to educate, inspire and entertain.
http://www.standup2cancer.org

Okay now on the home front, I am afraid to say it, but Alec continues to do amazing!! I have mastered dropping an ng tube every night down pat. He gets his pm meds, sleeps with it, then gets his am meds and I pull it out for the day. Kevin doesn't like to watch, he said it really gross, ha ha.
Alec meds and holistic supplements are as follows:
Decadrone (evil steriod) .50 2x a day, slowly weaning
Acyclovir (antibiotic)
Bactrim (antibiotic)
Norvasc (for high blood pressure)
Celebrex (studies show effective on reducing radiation necrosis)
Robinul (helps his drooling)
Dandilion (natural diuretic, he retains alot of fluid, thanks decadrone)
Ginko, memory support
Whey Protein shake through his ng tube in the am
Calcium
Multivitamin
Selenium
Melatonin
Greens First
Metal Free (metal detox)
Thymus
MonaVie
Flavin7
Garlic
Acetyl l Carnetine
Ashwagandha
Boswellin
Zyflamend
Flaxseed Oil

I hope I'm not forgetting any, but I believe thats it. Most of his supplements I get at this amazing organic store in East Moriches, Wholly Natural. The people there are amazing, so helpful and caring. It's really nice.
Alec rides his bike everyday!! He is more excited that school is starting. Although we are trying to transition him slowly, with his enthusiasm maybe faster than we thought, we'll see though once he gets there and sees all new faces. I put a request in with his school for this starlight para, Tracy :-) Mark and I would like to see assigned with Alec. We'll see, just plead is all we can do.

Alec has his 3 month MRI scheduled for Oct 2 & 3. Please pray for excellent, clean results. That all those hours spent in the hyperbaric chamber has paid off for him. His swallows are very strong and he continues to drink from his sippy cup, with Thicken Up a honey consistency. We are still seeing his swallow therapist in Babylon, he is so excited with how well Alec is doing, he's not the only one of course.

He has a urology appt coming up, still has a hard time urinating, I don't know if it's physical or just a cognitive issue. We have our next clinic visit this Thursday, I can't wait to see his counts. I'll probably ask for a t-cell drawing being his Lymphocytes are up.

It's been pretty quite other than that. I miss talking to our friend Alyssa, :-) It's his PA from the hospital. He misses her too, it's so funny he asked at dinner time when are we going to see my hospital friends, I asked who he said Mr. Rob, Ms. Alyssa and Jan. I hope he doesn't spike a fever to see them sooner.

I can't believe his transplant birthday is coming up, Sept. 19th will be 1 yr to the date he received his harvested stem cells back. A friend of mine asked if I did a time line from the beginning until now, I think alot about the journey Alec has encountered and I am amazed on how this little boy, in this little body, just keeps going. He is such an inspiration I can't even tell you. I was talking to Mark the other night about it, like what does Alec think of all this, and Mark thinks he is just too young to really understand what has happened. It still difficult to watch him struggle to see, he rubs his eyes once in a while, I guess hoping it will clear things up for him. I wish so badly to give him his full-sight back.

Well as always keep the faith.

Love,
Amy

Alec was so excited to attend his best friends Jacob and Nathans B-day Party!

Being fiesty in his stander :), Playing with Kev in Toy Closet and This is waht he looks like at swallow therapy, Not always happy though.

No New Is Good News, Right?

Well I am happy to report, although that hasn't always been the case with us, it is right now. Alec is doing really well and speech is improving very slowly, but a definite improvement. His swallows have become so powerful that his swallow therapist advises to put the g-tube placement on the back burner. He is making really good progress and alot quicker than he anticipated. He is on an all puree diet and needs no tube feeds right now. We were advised to just drop an ng tube when Alec needs his meds, he's on some really important ones for blood pressure and stinky steriod, but he needs it and for some hydration. Anyhow, after he gets his meds pull it out for the day. He was very excited to hear this, Alec that is. I am just waiting on the supplies to do so I might need another script from his Dr. for daily NG tubes.
He is so anxious to get back to school, he packs a lunch box everyday, he is so funny. Oh and some other good news, his numbers are coming up, yay!! His LYM read 1.06 and normal range is 2.5- 3.5 we are almost there. We will probably run a t-cell check on our next clinic visit in 3 weeks, yup 3 weeks, can you believe it. It's exciting and sad at the same time, Alec likes to see his clinic friends, Alyssa, she always gets the, "Can I have____________ questions from Alec, it's so funny. Then there is Mr. Rob- who makes a fingerstick not so bad, and Jan, Faye and the HEMOC nurses, and all of our HEMOC friends.
Alec continues to get his herbal supplements as well. I really feel it's helping his whole demeanor pick up. He plays so nicely now, and enjoys it.
There is always some depressing days, like when we were on our way home and having this wacky weather there were double rainbows in the sky and Alec couldn't see them. I snapped some pictures with my phone, but he still has a hard time narrowing in on it. He has been complaining about his vision more these days, he gets frustrated with it. This morning Sesame Street was on as always, our 7-8am ritual and we paused the TV, ya paused that alone is weird, but just to see if he could see the number on the TV and it was 4 and he got it. So it's so hard to understand what he is seeing.
Well enjoy some pictures, till next time keep the faith.
Love,
Amy

Greeting From Home, Yay!!

Let's see to give all of our family and friends a quick recap. Hyperbaric is almost done, a very bitter sweet thing, we have made some wonderful friends that I hope will remain in our lives forever. They are amazing there. His swallow therapy is going really well, slow moving but we are making progress. The vital stim I think is really helping him. I am told it will be a long tme coming before he will be able to eat and swallow enough to meet his nutritional needs, so Mark and I are looking into the g-tube. His swallow therapist, Steve Astrofsky, said he didn't think he would need to be intabated as previously mentioned, something we are going to look into.
Alec got his braces for his legs and right hand. His braces are sooo cool they have spiderman all over them, and they were really helping him. I say was because his PT, Ms. Eileen said to have them tweeked a little bit so now we are waiting to get them back, she knows best on how they would benefit Alec, she is wonderful, we are really luck to have such amazing and caring people in our lives.
His speech I think has improved, seems a bit clearer.
Well he is calling me, I'll try to update later!
Bye for now.

Almost Home

Well we are still in ICU at the momment. We were going to be released today but then there was some blood pressure issues, and the equipment couldn't be delivered to my house today; I want a pulse ox and oxygen on hand "just in case".
A couple of things to vent about, there is this really stupid rule that from 8-9 pm you have to leave the ICU. I mean how do you tell a parent who has a child in the ICU that you have to leave while we change shifts, I mean how rediculous. I brought Alec's wheelchair to his room today and took him for a stroll around the floor to get him out of his jail cell of a room. He was happy to be out for a little bit but very upset when I told him that we weren't going home today. As I strolled through the floor I passed other patients on vents and my heart crumbled. Why, why would God let this happen to these innocent little babies and let criminals roam the streets, I don't understand this.
In any case not to jump around from one thing to another but we did manage to avoid a tracheotomy, I don't remember if I mentioned this before but the PICU Dr. wanted Alec to get one and his HEMOC Dr, Dr. Atlas said he wants to avoid it for now but he will most likely need one in the future. Sorry but I'm not a beliver of that, don't get me wrong I fully agree with Dr. Atlas in this instance except for the future thing. I feel therapy will help him, there is something that will help him I know it. If he was to get the trach he wouldn't be able to talk.
He is so happy these days playing with his cards Pokemon and Star Wars, in the box out of the box, he is so funny and Connect 4. His fine motor skills in his left hand are really good, I'm impressed. We have to work on the right hand though, all in time, we have plenty of it.
He wants to get home and see his friends, I asked him who he wants to play with first and he said all of them, with a smile :0)
He is still tube feeding through the ng, we are avoinding the g-tube for now (surgically placing a feeding tube directly into his stomach) it requires intubation and the last time he was extabated all the drooling started, urrrgh!
Okay lets see what else oh, they started him on robotal, sorry not sure of spelling to help dry up his secreations but I am a little nervous about this drug, it doesn't just dry him up it can thicken up the saliva making it difficult for him to cough up, hmm not too samrt so we'll see I might have to do some mommy tweaking medicines when we get home. We are going to start up his blood pressure med again, its a low dose and it's better to be safe than sorry hence the stupid steriod. Well thats where we are now. Say your prayers and kiss your kids, remember the power of positive thinking is the only way to see the light, tears are okay to shed as long as they are tears of happiness, he is still with us, he can't walk without assitance but someday he WILL, he can't chew and swallow food but someday he WILL, and his speech is slured but someday he'll be writing speeches, his right hand is week but someday he will throwing 90 mph fast ball with it.
Goodnight to all!

ICU

Well I felt like a ping pong ball yesterday, we were moved from Med 3 to our HEMOC floor on med 4, only to be moved 3 hours later to Med 2, ICU. Alec had some awake periods but not speaking, he is also unresponsive to neuro checks, he doesn't squeeze your hands, I mean he knows these tests and would do the in his sleep.
He needs an MRI but there is major concern about sedation with his breathng and lethargy.
He was given a small dose of decadrone the "evil" drug, last night, urrgh! But if he needs it, he needs it. I am not sure what the plan is for today, ICU Dr.'s want an MRI which I think is really necessary, something is going on. He had an chest x-ray, there was fear of a lung collapse but all looked okay but concern he is not taking in enough oxygen. I really didn't want the chest x-ray, As a parent to keep subjecting him to radiation with all he has gone through, I can't even tell you how much I cringe and my heart crumbles and aches and stomach twist during every ctscan and xray, I mean this is my baby, my perfect little angel I carried for 9 months, my little boy who has done nothing wrong except be a child, an amazing one at that! He takes on everything thrown at him and doesn't resist one bit. It's not fair, it's just not fair!!
His HEMOC team thinks he just needs the steroids, but why?? How long can he go on with the steroids for. Endocin checked his cortisol, I was so hoping it was that and it was fine. Neuro tapped his shunt, but feel its not related, so what is it, whats going on?
He was also scoped by ENT and they saw some inflamation in the back of the throat, but the decadrone would help that. Also he is still on ng tube feeds, but there is some g- tube talk now, it would help his passage way and think that is smart to consider. Even though he is still seeing a swallow thereapist who knows how long it will take.
I'll update later, hopefully with some answers.
Pray hard,
Amy

Possibly Home Bound

Well after a rough night, concerns with Alec retaining alot of fluid I contacted the fellow on call and asked for some tests to be run to look at his kidney functions and he was going to order a lasik, it will make him get rid of the excess fluid and to heplock him, take him off iv fluids for a bit see if that helps with the swelling, retaining fluid.
ENT was in this morning to see him, good news all looks okay from their point of view, s02 is good in the 90's.
Oh, and he did get sick last night so they stopped his feeds, strange. Only happened once, but it happened and Mark said quite alot.
He will be start zantac today for his belly. Mark just phoned me about his creatnine and it is low, .29 and thats down from .32 on June 22nd. We have tyo wait and see what the HEMOC team says about it.
I meet with a urologist this week which is good so we can see whats going on.
Well gotta run, heading up to the hospital.

Another Holiday Spent at LIJ

Well Alec is doing better, well with the fevers anyway. His blood pressure has been great lately, and I stopped his blood pressure meds when I got word that the MRI showed nothing touch the brain stem.
Also, we are off of the "evil" decadrone.
His breathing has improved, he is not making that sighing noise anymore, he is still sleeping alot though. I think it is coupled with a few factors, first- he is off of the decadrone so he is out of that insomnia state of mind, plus- he is a six year old boy presented with a fever, so something viral going on. And also, he's on vanco and needs to be premedicated wih benedryl and tylonol. So this is the issue, no fevers, but is it because he's getting tylonol every 8 hours, hmm. And bennedryl knocks him out to begin with and now through tylonol and sickness in the game, well there ya go.
ENT was in to see him, Mark was there and I guess there was some mention of apnea?? He was scoped but the ng tube prevented a complete diagnosis. Then some mention of puting him back on decadrone- NOOOOOOOO!
Urghhh, it's not gonna happen. A sleep study needs to be done to rule out some of these findings. I also want to meet with his ENT in Pt Jefferson also to get his input.
Alec had a ct scan of the brain and abdomen done yesterday as well. The ct of the brain looked great, even better than the previous one, they keep getting better and better, thank you HBOT :) And the abdominal scan looked fine.
I met with another opthomologist this past week also and she concurs that Alec is legally blind. He has optic atrophy, he only see's light after about 15 feet. I wish I could see what he see's because sometimes I am surprised at what he see's after his dx.
He still puts his head down alot, I wish he would lift it more, all in time. He started swallow therapy, and the vitastim to help him with sensation. I really hope this helps him.
Not this coming week but the following he will start to get the vitastim therapy on his lips to help with his drooling, it will teach him to keep his mouth closed more.
Well I must leave you now, Mark just called and has me very concerned, I have to call Med 4. Be in touch later.
Amy

WOW!! Time flies, huh. I have been wanting to update this blog for weeks now. Great news, the brain swelling has decreased and there is nothing touching the brainsetem. The scare tissue from radiation has decreased in size and pulled away from the brain stem. What does this mean you ask, it's working whoo, hoo!!!
Eating is still another story we are seeing a swallow therapist to reteach Alec how to chew and swallow so he continues to get fed though his ng tube and helps me puree his foods.
Ughh, another story though, it likes to clog :( but the nurses gave me a little secret, gingerale, and guess what it works!! Thanks girls. Those HEMOC girls, so smart.
I know this is short and sweet but I have to run out, what else is new though. I have uploaded some new photos though.

Hyperbaric pictures and CSF fluid crossing in front of his face after shunt revision, he still keeps smiling!

So Much To Report

Alec has really been through so much this past month. Well we started hyperbaric treatments and after 4 treatments on Mother's Day, May 11th as we were wondering through the mall in Smithtown picking out some baseball gear from Kevin Alec just happened to have taken his hat off to adjust it. Weird I thought so I peeked around at the back of his head and he had a huge hematoma protruding right along his center incision from his resection and decompression.
We dropped everything and rushed him to Stony Brook, it was the closest hospital. I ran into the ER with him and we were in a private room in minutes and a ct scan was being ordered. He wasn't in any immediate pain then but did start to complain about a headache. We got into the ct room where I met my friends brother Chris for the first time who was our tech. In any case, we got Alec on the table and was trying to position him and he screamed like no tomorrow.
We were taken back to the er waiting room and neruo surgery was contacted. I was holding him in my arms and the were connecting all his leads and he just passed out. He went from screaming to sleeping and lead weight in minutes. Mark and I were trying to wake him up and he wouldn't wake up. His respiratory rate dropped and they have to intabate him right then. He had stopped breathing and was solely on a respirator.
He was in the OR in about an hour. This one idiot tried telling us it was tumor. Dr. Gutman came in and said it was a hemorrhage.
Alec was taken into the or stat and the blood clots were removed and blood vessels tied up. He came out of the o.r. breathing on his own, which was the biggest concern.
The next day we were told that the shunt has turned against him and was draining to much and was causing the dura to separate from the brain/ skull region and was pressing into the brainstem as he was bleeding on the outside.
We headed back to the o.r. again because the ct scan revealed he was still bleeding. More clots removed, shunt revised with a programmable one and burr holes drilled in his skull to sew up the dura.
Alec's right side had been completely effected. He had strength but a hard time making the brain and movement connection. He is unable to stand on his feet flat, he pigeon toes his right leg, of course minimal pressure is put on his legs because he is still unable to walk.
Released from the hospital and a couple of days later fever, vomit and headache complaints. Back to ER, now meanwhile he finally was weaned off the decadrone, so of course he was given a stress dose of it. Chest x-ray showed something but nobody seemed able to give us a straight yes or no pneumonia. I noticed that his eating habits had changed everytime he was eating he would cough. He couldn't so much as take his medicine through a syringe without me physically coaching his lips through.
Speech came up and took him down for a barren and swallow test. As it turns out he is aspirating. Meaning food and drinks are going into his lungs instead of his esophagus and also up his nose cavity. They stopped the test immediately and put him on NPO and tube feeds only. He is drooling profusely and aspirating what saliva does go down.
Friday morning more changes occurred with is eyes, they started moving back and forth very quickly in sink like windsheild wipers and his speech declined even more. Now at this point I am having a hard time understanding him. A ctscan was ordered and there is fluid in the right hemisphere of the cerebellum. There was some concern of a stroke considering the new symptoms. We were moved from the general hospital floor to PICU and an MRI and MRA was ordered.
Good News, stroke ruled out, radiation necrosis is once again causing him problems, it's pushing on to the brain stem. We were told that there is nothing that can be done about it and as of yesterday neurosurgery at Stony Brook cleared us to leave, now I wasn't up there that morning Mark stayed the night and spoke to the Dr. when I got up there and saw what condition he was in, I was very uneasy about taking him home.
We had him transferred to Schneider because we felt like Stony Brok was like well thats it, it is what it is. So upon arriving at Schneider we were set up in Med 4 and quickly moved down to PICU because he was sleeping so much and his neurological state had changed and declined so much in the past 24 hours.
A ct scan was done and showed some swelling but nothing alarming, that alarming part was when they did the x-ray to lower his shunt we found that his shunt is set at 30 instead of 180. Besides this shunt being a royal pain in the a_ _ because we constantly have to take x-rays to see if it's in position, now it might even be malfunctioning. They tapped his shunt and drew out csf fluid to check for white blood cells and protein to check for infection. But after they took 6cc he seemed to have woken up a bit.
I don't know we are at a stand still right now and again with no answers.
We were also told that there is some concern that there might be tumor within the necrosis considering how bad he has it. I was also told that to remove the necrosis was not really an option.
Well this is where I must leave you, I am exhausted and need to get some shut eye for tomorrow.
Thank you Margie at Center Moriches Library for the books, I am still reading them, I had a 911 call to the library to self educate myself on what the heck is going on. And thank you to our friends and family for being there when we really did and do need you.
xoxox
Amy

A special visitor, Thank you Larry, Christine and our friend!

Quick Update

Okay good news, NO seizures. An eeg was done and Alec's brain waves are a little abnormal but nothing more than you would see in someone who is experincing migraines. He was put back on the "evil" drug decadrone and is doing so much better. The shunt is fine no malfunction or infection, thank God!
An MRI was done and there is more necrosis from radiation still forming. The radiologist said he has never seen so much necrosis develop in a child before, the hyperbaric oxygen tank is a definite option for Alec to help repair some of the radiation damage. I meet with the Dr. at North Shore Plainview in a week. I was already informed that there is a good chance insurance won't cover it but we'll find away to get him what he needs.
During his stay at St. Charles they had this tricycle with a high back belts and velcro on the pedals and he loved to ride it, we are looking into getting his one for home, I will post a picture of it when I down load it from my phone.
He is coming home today :) We have the option to transfer him back to St. Charles but he needs to be home for a little bit, he needs to see and apend time with Kevin, they miss each other so much.
Kevin is doing awesome at baseball, he had the best hit the other day. He just finished a report on Scotland, his favorite part of course was the Loch Ness monster. He typed everything himself, I helped him make photo copies but he did it all himself, I am so proud of him!
Well till next time.
Special prayer request to some friends we met along the way:
Katie, who just passed away Tues. from a prot infection while battleing Leukemia
Delton, Who is on a resporator in PICU, his lungs have failed on him during transplant he was our neighbor in transplant
Jacob, A special little boy battling medulloblastoma
Danny, Our spunky little friend who just keeps on going!
Hannah, our special little fighter, who just got her port out and wating for the Dr.'s to send it to her, I think she is going to ride her horse over it :)
Stanley, A trooper
Tia, who finished her chemo, you go girl!!
And all our HEMOC friends, there are alot of newly diagnosed cancers up on Med 4 during our stay, it's not fair.
Chin up keep the faith!

Seizures??

Well we are settled in here after our transfer from St, Charles to Schneider's. Alec spiked a fever yesterday and is having alot of head pain. St. Charles, a wonderful hospital for his rehabilitation is not equipped to handle his required medical necessities. They tried to access his port and was unsuccessful after many attempts. They did however send him down for a CtScan which revealed the usual large ventricles.
Alec followed the pattern he did last month with the not wanting to sit up, sleeping all day, and crying. Only this time he is also experiencing quick tremors and then cries.
Neauro
surgery was just up here and said they don't think it's a shunt
malfunction because his scans are the same as they were last month
after the shunt placement. They are going to do a series of x-rays
tomorrow to determine if there is any breaks in the shunt down the
path, not happy about the continued exposure to radiation! She also
mentioned after observing his tremors that he might be having mild
seizures; she is going to set up an eeg to be done.
Alec asked me a
very disturbing question tonight, he asked me how to sleep? What does
he mean, he told me he was tired so I told him to go to sleep, and he
said how?? I am not sure what he was referring to, was it because the tremors keep waking him up or is it something more?
Well am looking at my baby resting so comfortable right now and feel as always content and worried all in one.
I'll post more as I find it out.

St. Charles Rehab Update

Well Alec has gained a whopping 12 pounds, he is weighing in at 48 pounds :0) His appetite won't quit, eating and swallowing is no longer an issue. He wants to go back to school in the worst way. Soon my baby, I am hoping by the end of the year to have Alec in a "classroom setting" if only for an hour a day. He really needs the interaction.
We had a beautiful visitor, our friends Hannah and Kim. Hannah and Alec met up at Schnieder and had the same surgeon and Oncologist strange enough :) You see her here at this posting. She had her port taken out today and was so brave, we are so proud of you Hannah!
Alec has a little crush I think, it's really cute, he picked out this heart bag and filled it with some of his favorite things, he told me he wants to give Hannah a kiss on her cheek, LOL He even specified her cheek, I can't even tell you how cute it sounded.
He is working hard at rehab, it's hard on him though, he gets tired so easily. He is getting into a routine now though. We told him to be like Rocky and he makes this rrrr face it's so cute.
You will see him here with a smile on his face with his PT, Bill; but trust me he is not always smiling, although today was a good day for him! He is not even close to walking on his own yet or even with a walker, he has alot of trunk weakness.
Speech is going well, we are working on having him speak louder; he yells into his American Idol microphone we call it. OT is hard because he has the shakes still really bad in both his hands, arms and head.
He has been enjoying the wii lately though, the use it as therapy, amazing therapy at that, WOW! We might get him one for home, I heard they were sold out for a while but my friend Kim mentioned Walmart. We have time yet though before he comes home; he stopped playing x-box a while ago and won't play with Kevin, but with the wii he just moves his hand and the character does the move it's alot easier for him and work his fine and gross motor skills. His favorite games so far are Spongebob (of course) Atlantis, and Shrek.
We will be in the hospital I think for a few more weeks. He is just starting to get the schedule down and be cooperative, they don't want to rush us out too soon when a longer stay he will benefit from.
Well enjoy the pictures!

Butterflies Are In

Alec was over whelmed by all the butterflies, he of course had some favorites, an E.T. butterfly, a mobile of butterflies and of course their were some amazing Star Wars butterflies. There are just too many to count to give you a grand total, but thank you ALL for your support!

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.

Well we had a brief stay in the hospital last week. Alec ended up spiking a fever and with a mediport we can never chance it because we don't know if it is a line infection or not. Of course as usual though after spiking a 102+ fever Mark trecks out in the snow and sleet to Schnieder and upon arrival no fever. But his anc dropped to 575 from 1,400 earlier that day. He needed platelets and a blood transfusion during our stay though.
We were released on Friday and Alec had his PETscan. That was also a scary time. Not the scan itself, but what I encountered. For those who are unfamiliar with mediports, when not accessed heparin need to be put in the line to prevent clotting in the mediport or there would be big trouble and the line would be useless and have to be pulled.
In any case, I left him accessed when we were released from the hospital because we were going to get sleepy juice, aka sedation for the scan. I told the anesthesiologist while he was still sleeping he can deaccess him to avoid yet another painful ordeal. He agreed.
I was sitting in the waiting room and this feeling came over me, I can't describe this feeling, it was so intense, like someone was telling me not to have this man do that. So I interrupted the technician who was doing the scan because I wanted to stop the anesthesiologist from de accessing him. He opened the door and I told him nonchalantly to leave him accessed, just heplock him because we have some blood work to do over at Schneider’s, he said oh I was just going to flush him with saline and take the needle out I have no heparin. WHAT!!!!!!!!
I tried not to freak out but was ready to ring this guys neck, no heparin how he can not have any heparin on his little wheely cart. All that kept me positive was his platelet count was low. Then they had to transport us by ambulance over to Northshore hospital, the main entrance because we were over in the Feinstein bldg; and when we got there I told them I needed 5ml of heparin put in his mediport ASAP. Then a short time later we were released I drove like a maniac to clinic and had them pull out what they out in to make sure there was no clot in his line, then reflushed and heplocked.
Any how we are home safe and sound now, Kevin is sick though :0(
Alec is back on his GSF shots daily and his chemo is on hold until his counts rebound a bit. He is still on Bactrim, Acyclovir, Clyndomiacin, and all his wholistice drugs.
Well Sean is crying and Kevin needs a temp checked. Bye for now,
Amy

Please take a moment to print out, color, mail or drop off to me the butterfly. This is not just any butterfly, it represents brain tumor week in March. Please color not only for Alec, but for all those who have been effected by brain tumors. In memory for those loved ones we have lost and in honor of those ones who are still fighting and all those who are in remission but will spend the rest of their lives with uncertainty.
To dedicate your butterfly to a loved one please write their name on it. All the butterflies will be hung from the ceiling in Alec's room.
Lets get everyone involved schools, libraries, churches. At the end of the month I will post a picture of Alecs room along with the total number of butterflies.

Some Very Special Friends

I wanted to share with you just some of our very special friends we have met along the way. You hear me speak of them often. Hannah and Alec in the play room with Kim (Hannah's mom). Also our friend Stanley, Alec and Stanley enjoying a game of memory.
We had a lonnnnng day at clinic yesterday. Alec ended up needing a blood transfusion becuase his hemoglobin was low. He is transfused at 80 and below; below 20 for platelets.
He seems very tired today, he consumed about 800 calories, not nearly enough to make me happy. He didn't vommit as much today, I am trying to give him the phenergen every 6-8 hours.
While at clinic they drew his immune functions, again. No wonder he needed a blood transfusion, 8 vials whenever we walk in he door.
Being that he is not eating all that well, I wanted other tests run as well. A recheck on his cortisol which was 14.4, yeah!! And his albumin, copper, magnesium, calcium, and thyroid.
All came back fine, well no word on he copper or t-cells yet.
Well gotta run, chemo calling.
xoxo

MRI Results

I wish this posting contained better news. To date Alec's brain MRI's have been clear, that has changed. There is some patchiness in the cerebellar region which may represent radiation necrosis. Then slightly to the left of the medulla there is an abnormal supratentorial enhancement. It's noted as recurrent disease. The spinal lesion has not changed, it remains the same size.
His Dr. is calling these findings possibly radiation necrosis, or new tumor growth. The brain tumor board is meeting on Tues. to discus it further and to get other opinions on it. Meanwhile we are being told that he will be rescanned in another 6 weeks instead of 3 months. Then I was given some lame excuse that being he was scanned in another facility it makes it hard to compare.
Bull, pardon my hostility, but I hand delivered the scans. They have them how hard is it!!
In the interim I have been in touch with NYU again, and I am sending a copy of his scans to the Dr. we have been seeing there. She mentioned doing a PET scan to see if these new findings are in fact tumor regrowth or if it is in fact just radiation necrosis. Alec will be injected with a sugary substance, being that tumors feed off sugar the tumor would gobble up the sugar and highlight. Confirming or denying findings. This test was never discussed with us by his Dr. at Schneider.
I just feel they are giving up. The protocol he is on was because it was something discussed with NYU. I have lost all faith in Schneider Children's Hospital.
Meanwhile his spirits are great, his walking is great with help. His tick seems to be a bit more pronounced again. His hearing aids were readjusted agiain, Ihave to give them about a week, it has to do with compression his Dr. was telling me. He may need aids that don't compress as much. We will see how he does though.
I am going have his t-cells drawn in a couple of days, hopefully we will know by Friday how they are recouping.

Genetic Testing

Well thanks to my new electronic friend Nancy, I started to explore genetic testing on Alec's initial brain tumor. As it turns out there is a gene linked to breast cysts/tumors and brain tumors; both cancerous and not. I was reading about this one family, I can't even go into detail it just brings tears to my eyes, and I have to stay positive. But it without a doubt needs to be tested.
These genetic finds are being targeted as a way of treatment. Research is always an on going battle, I am just so afraid to miss something. It's amazing how fast 2 a.m really rolls around.
In any case this is the eve of Alec's MRI. I remain confident and of course nervous. Alec of course is just psyched to have sleepy juice tomorrow, hmm should I worry now :0)
He is having a good day, eating here and there. He had fun today playing ball with Jack. He is so good with him, he knows to be gentle with him, it's so cute to watch them together and the smile he brings to his face I can't even tell you.
I set up an exercise bike for him which he really enjoys, I brought his bike in the kitchen op[ened the blinds to the sliding glass doors and propped his training wheel up on an encyclopedia so now when he peddles, the back wheel just turns and he gets some sun light at the same time. He has the coolest exercise bike around, he puts on his sun glasses, it's so cute.
Well thats it for now.
Below is a poem from one of our friends blogs, it keeps me strong so I wanted to share it with you:
Cancer you monster
let go of my son,

We won't let you take him,
don't think you have won.

Thought you could sneak in
like a thief in the night,

Trample our spirit,
then take my child's life.

You started this battle
but we'll win this war,

We caught you red handed,
you'll live no more.

We fight you with chemo
it's making him ill,

Your time here is short,
its you this will kill.

With courage and faith
his fear he'll walk through,

There is no surrender,
just the death of you!

Back from Florida

Hi all,
I know it has been a while since my last post, time and my days go by so fast. Alec has just started round 3 of his new chemo protocol. He is fairing it okay, we had some bouts of vomiting which comes with the chemo territory. He is back on phenergen and doing pretty well with it. He is still on Acyclovir and Bactrim. We go on Friday for his MRI, I am so nervous. I found out the imaging center down the road from his hospital can scan the brain and complete spine in one day and in just over an hour. It is a newer machine and they don't have to switch out and coils and move him. It's amazing what you are not told unless you complain and talk to hospital administration.
In any case, I am still waiting for his latest t-cell counts from his transplant to see how his immune functions are recouping, but....
They lost his blood AGAIN!!!!!
7 vials need to be drawn from him a 3rd time!!!
His wholistic Dr. is great, he continues to follow his organic diet, although from the vomiting bouts he has lost some weight. He is doing well with his walker, and he looks so handsome in his hearing aids.
Disney was amazing, very hard but amazing. We made one trip to the childrens hospital for his weekly counts which were really good, his anc is 2,900. His platelets and red blood cells keep regenerating and no transfusions have been needed lately.
Well my time is up I must start cooking dinner. I will try to write more tomorrow.
Enjoy some Disney photos until then.

Started New Chemo

It was a rough start this morning. Alec's retnoic acid comes in the form of a pill with liquid in side. Usually they are capsules and I pop them open or pills I melt in water, but no... the pill is the size and shape of a jelly bean to give you an idea. I tried popping a hole in it and squeezing out the liquid but it's a thick liquid and alot was left over in side that I could not get to. So we dreaded it but we had to get Alec to swallow this pill. A huge chore, he kept swallowing the water but not the pill. After about 30 min. and 3 pills later. I kept taking them out after a few tries because he would attempt to chew it and I didn't want it to burst then we are stuck with how much did he get and should we give him another pill. Finally he did it, in tears, but did it. The chemo was easy enough I just dissolved it in water and gave it to him.
He is doused in Aquphor right now and chap stick, I have been reading how much the retnoic acid dries out your skin. He had his zofran and is doing well. Actually playing x-box lego star wars with Kevin right now.
Well I'll keep you posted.
Keep the faith.
xoxo
-Amy

Hello My Friends

Hello, I know it's been a while since my last post, and for that I apologize. But I wanted to wait until I had some really good news to share with you. Our holidays were great! Santa was good to the boys and why not they have been so good.
As some of you know Alec had some adrenalin issues and his endocrinologist wanted to keep him on cortisol for a couple of months, and he was also placed on the hydrocortisole for swelling in the brain and some "radiation effects" well; I took him off it ALL! It was not helping him, so ultimately it must be hurting him.
He has been on his organic diet, gluten, wheat, dairy,and sugar free with wholistic supplements prescribed to him from his wholistic Dr. we started seeing in Plainview. And what a difference! His adrenalin gland is now producing cortisol all on it's own, thats right, no drugs! Imagine all those unnecessary steroids he was on that was just tearing him apart, ripping down muscle walls, it's disgusting. I just kept researching and researching and today he is upbeat, smiling again, laughing, real belly laughs. All this with just a 1000 anc, which is really low, and 40 on platelets, we get transfused at 20, most likely next week at clinic we'll need platelets.
He has finished his 1st round of chemo, Tomador and celebrex, which went extremely well! No vomiting :0) We start retnoiac acid and cyclophosimide tomorrow, he takes it 2x a day for 21 days and then starts a new cycle.
Alec is still unable to walk by himself, his balance is a big issue. It's hard because he wants to go and can't. He is so strong willed it isn't even funny, I am always finding him scooting across the kitchen on his rear end or off the couch getting something form the coffee table or crawling toward something, which is a big deal that he wants too. It took a long time to get here. His memory appears to be back, he doesn't seem to be so confused. His speech is still slow and it does take him longer to process things, but so much better.
Alec's walker has arrived, they are coming to the house actually tomorrow to exchange it for one that rolls, it's to heavy for him to pick it up and walk with it, he tried. He is very excited about it, it will be a hand toward his independence.
His hearing aids are ordered, A BIG THANK YOU JOEY'S FRIENDS, he was excited he got to pick out any color he wanted, he chose red of course, Darth Vader's lightsaber :0) He has to have special hearing aids to attach the fm system to it for school. The teacher will be wearing a small microphone that will be connected to his hearing aids so when the class is noisy he can still understand instruction clearly.
He still cannot goto school of course, possibly spring, he gets his home tutoring 5 days a week for an hr. He gets occupational therapy 2x a week, physical therapy 3x a week and will be starting speech 2-3x a week. Then to squeeze in Dr's in all those, whew!!
Regarding his eating, Alec is still a very slow chewer. He is weighing in at 37 lbs, down from 39. But I know he is getting everything he needs. He is on a special protein shake 2x a day and green supplements and berry supplements. Dr. Stills, his wholistic Dr., is monitoring him very closely and working with his chemo protocol. His next MRI is scheduled for Feb. 28 and 29th.
Alec is getting excited for his Make a Wish Disney trip in a couple of weeks, he is going to train to be a Jedi, what a surprise and he wants to shoot Zurg. Kevin is really excited too, maybe more that he will be missing school. I got information already for the children's hospital in Orlando, "just in case" and it's great because where we will be staying there is a medical staff on hand 24/7.
Well I think I have it all covered for now. I'll let you know how his next round of chemo goes. I'm a little nervous we got really spoiled this round.
xoxo
-Amy

Home From Our Hospital Stay

We are finally home agin from yet another hospital stay. Dr.'s still anxious to put Alec through another surgety, a shunt. He had an MRI that still revealed some swelling to the brain and radiation effects to the brain tumor site. Another spinal tap still negative for disease, thank goodness and very little pressure.
Alec continues to have a really hard time walking, he can only walk with help. His speech is still slured pretty bad, we often have to have him repeat himself. He is still trembeling in his hands and his head. His memory is shaddy to, he was upset today becase he couldn't remember how to play his all time favorite game, Lego Star Wars. I wonder if this is why he doesn't ask to play x-box any more. Even in the hospital he never asked for a game system. His memory is really bad. That is actually what prompted our hospital stay. He was on the kichen chair asking for a tissue (he has a little runny nose) so I wiped his nose and he pushed my hand away. He said No, a tissue, so I tried to wipe his nose again. He was really upset and started to cry, he said No, I want a tissue, so I thought I was giving him the wrong tissue, so I took his hand and said show me which one you want. He walked over to the Christmas tree and pointed to a candy cane.
Then in the car on the way to his holistic Dr. he kept asking for chicken nuggets in the diaper bag, they were his veggie chips )like potato chips) So I called his Dr. and they admitted him right away. He is still having a hard time, but is clinically stable so we were allowed home.
We met with Dr. Atlas, and as of today, Alec is on more chemo. He started the Metronomic therapy today. I was so nervous this morning mixing his chemo together, but tonight I felt a little more comfortable. Alec has no signs of vommiting, yet.
His eating is still fairly poor, I have to cook soups and puree them, then he drinks them. He is on a solely organic diet. We had to cancel our appointment with his holistic Dr. and his ENT this week because of our hospital stay so I have to reschedule them this week.
Great News >>>>>>
Our friend Hannah finishes her last round of chemo this Monday!! Hannah you are so strong, keep up the good work beautiful! If you want to meet our friend, go to her website:
http://hannahpro.blogspot.com
Alec just called me down stairs to turn on his SpongeBob nightlight, he smiled ear to ear when it went on, uhh it was such a sight.
Well keep happy thoughts.
Amy
xoxo

NYU Response

Hi all, well...I spoke to NYU last night; Dr. Gardner concurs that there is tumor growth. It is not a blood vessel. Based on August scans and the most recent one, there is definite tumor growth occurring. She advises us not to wait on delaying any treatment based on the aggresionness of his type of cancer.
The fact that his spinal fluid still tests negative to disease is a good sign. She said that the tumor is still very small and if you didn't know where the previous spinal tumor was located you could actually miss it. We discussed a few options for Alec but we are going to go with the retnoiac acid and tomodar approach. I will have to give it Alec oral chemo from home for 6- 12 months and he will have to have more frequent scans.
She told us that LIJ could still treat him, it's not therapy that we would have to go into Manhattan for. My time is limited this evening, so I will update you all again soon.
Until then please pray for him!
-Amy
xoxo
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Look At How Much I Have Grown

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A New Week, A New Tale

Alec has had a rough week. We met with the ENT again, hearing is as stable as can be. We were recommended speech therapy because he will have some difficulties hearing the t, f, sh, th sounds which will overall effect his reading.
I was gathering copies of records on Tuesday from LIJ and I stoped in to see his Dr. to just give him a heads up on his unstable walking and shaking of he hands while eating or drinking and shaking his head like a Parkinson's disease shake, not seizures or anything, and his speech seemed a little slurred almost like how he spoke after the tumor was originally removed. He was concerned and scheduled him an emergency MRI the next day, Wed. and immediately started him on decadrone for swelling. As it turns out Alec is having some radiation effects to his cerebellum area of the brain, the original tumor site. He has some swelling and fluid build up. I have to keep him on the decadrone for a couple of weeks. His Dr. tells me that it shouldn't be permanent. The lesion on his c-spine is still stable, no change. Now he tells me that it might even be a blood vessel, so he doesn't want to treat it. We will just keep watching it.
Meanwhile...................... we have the folks at NYU looking at the scans, they will be calling me tomorrow to let me know what they think, and we'll go from there.
Alec is officially off his magase, thank goodness. Mostly by my doing. He is eating, forcefully, but eating enough to maintain his weight. We meet with Dr. Stills in Plainview next week to work up a holistic plan for him, she came recommended by our friend Samantha, Josephs Mom, thanks :0)
In the interim I buy mostly organic foods now, milk, cheese, butter, cereal, meats etc. The fruits and vegetable go bad faster and taste a little different but we are minus antibiotics and growth hormones. It's a lifestyle change, but you do whatever it takes when it comes to your children. Well thats all for now.
I'll update you on NYU dx as soon as it comes in.
-Amy
P.S. Thank you Friends of the Center Moriches Library for our private sessions, Alec really enjoys it :0)

I anticipated this next post to read nothing but good news. It is not so, Last week I had gotten a phone call from Alec's transplant Dr. at 9pm telling me that his cortisole level was .1 another words he is not producing his own adrenalin, hence the reason all he does is sleep and is always in a depressed state.
Not producing adrenalin in an immune suppressed state can be life threatening. I had to run up to CVS and give Alec a "stress dose" of hydrocortisole. I was told to watch for excessive vomiting, fever, and abnormal blood pressure.
We had to bring him in to the hospital the next day, Wednesday to meet with his endocrinologist. After my excessive research on the internet that night; as it turns out his "appetite stimulant" can cause adrenalin suppression. They had just recently increased his appetite stimulant, magase to 2- 40mg pills 2x a day without checking his cortisole level prior knowing. I have been saying for weeks that Alec seems to be depressed all the time and just lays there. In any case I told them I want him off the magase. We are working on weaning him off because you can't just stop it. Then in a couple of weeks we will be weaning him off the cortisole to see if his body stars producing it on it's own. I am told that these effects from radiation usually don't occur so quickly, yet here we are feeling the effects.
During this same visit we went to his oncologist office because we wanted to know the results from the MRI,we were taken into a private examining room. You could hear mine and my husbands heartbeat pounding down the road. We still remained optimistic. In comes walking Dr. Atlas, his PA Alyssa and our Social Worker. I knew it, I knew it, why is my social worker here. NO NO this can't be please tell me my baby is fine, Oh God please NO. Mark our baby is going to be fine please tell me our baby is going to be fine. We were told that the last remaining spinal tumor that had begun shrinking was still there. Not only is it still there but it has begun growing again. The stem cell treatment did not work. It would have done it's thing by now. We had to bring him in Friday, the day after Thanksgiving for a spinal tap because his Dr. thinks it might have also spread now into his spinal fluid, where it has been negative for disease since prior to chemo and radiation. Of course Mark and I were fighting the tears as hard as we could because the kids were with us. We meet with a team of Dr.'s tomorrow at Schnieder we will have the results from his spinal tap then and from there I am scheduling an appt. with NYU as referred to us by our friend Kim, then to Boston Children's hospital. We are also going to start wholisic treatments, in Nevada or Arizona.
We transferred his hearing care to our local ENT we brought our older son Kevin to for years. Alec's hearing continues to decline due to nerve damage, he does need hearing aids, it is not just his high frequency that has been effected it is also his overall hearing. We go this Friday for another hearing test and to be fitted for hearing aids. With any hope we should have them by Christmas.
His mind is processing things alot slower, his short term memory has been effected. He has asked me 3 times this morning why the Christmas tree is set up.
He is eating though, he has gained weight, he is up to 39.5 lbs, up from 37 and we actually made it through the entire day yesterday with no vomit.
Please understand for those whose calls I have not returned and e-mails that have gone unanswered; it is too hard for us to keep repeating the same thing over and over again. We need too keep strong, Alec needs us to stay strong. We can't be around solemn voices and faces. We have to keep going. I will try to update this blog more often.
Until then please keep Alec in your prayers and all our HEMOC friends, Hannah, Stanley, Danny, Joseph, Teeya and all those on Med 4 and in transplant.

Home, but struggling to eat

Although Alec appears to have an appetite, he claims to still not be able to taste anything. I continue to just puree his food with his shake. His weight is maintained, not losing not gaining. I am tempted to bump up his calories a little. He keeps asking for food but when we get if for him or make a meal he wants, nothing. He just spits it out and says he doesn't taste anything.
I ask him what he tastes when he drinks his shakes, I mean after all they are gross, he says nothing just the shake.
I spoke to Chrissy and she said Stanley is tasting food, I'm sorry for those who don't know Stanley, he is an awesome kid we met along the way, he also had a transplant because his cancer relapsed.
I spoke to Alec's Dr. again and they said as long as he is taking the shakes it's fine, as a mother it's not natural to see your grown son not chewing and swallow food. Sometimes I wonder if he is to tired for the effort it involves to chew and swallow food. Is it is easier just to have Mom feed me through the syringe. I am going to start having him drink the shake on his own, as oppose to me hand feeding him, maybe that might encourage him to eat.
Other than that he is just enjoying being home. His favorite teacher started tutoring him again, everyday he asks is Ms. Moran coming today? Academically he is doing well.
We don't have clinic next week, yay. His counts are really good. His platelets went from 93 to 275 on his own, yay!! Go Platelets, Go platelets!
I am sorry I havn't updated sooner but between feeding him, meds, cleaning, Sean and Kevs homework, time runs out. Thanks for all the e-mails though. It took me forever to go through all of them tonight.
Till next time
-Amy xoxox
Please keep our friends in your prayers, Hannah (8), Stanley (8), Teeya (7, I think), Danny (3), Denton (11), Joseph (3), and Gwyn (2) in your prayers as well. Some sweet friends we have met on the way.

We did a driveby to see Jack, and he was so excited to hear Alec was coming home, he made a special sign.

* Thank you Erin, Kevin and the gang for taking care of our puppy, he looks really happy :0)

Thank you to our friends for decorating our home for Alec's arrival!

Nice View and All, But I'm Outta Here :0)

We Are Home!!

It has been a long time coming. Although Alec's fight is far from over 5 years and counting, the Dr.'s feel he is strong enough to come home. His meds are as follows:
Acyclovir
Fluconazole
Xopenex
Pulmicort
Previcid
Phenergen
Zofran
Tyonal
Magnesium
Megase
Bactrim
He is still not eating anything!!! I have to make him special shakes 3 times a day, he drinks them with no complaints. Although Alec has never complained about anything in his life. This morning he tried a scrambled egg and spit it out and then we tried Cocoa Puffs and spit it out. I have made his favorite foods and even foods he never really liked, and still nothing. The Dr. said just keep going with the shakes. I am now adding more ice cream to them and I even snuck in some peanut butter in this mornings batch. I know he didn't get his taste buds back yet because he didn't even notice the peanut butter flavoring.
He is sleeping alot. He has alot of leg pain, his Dr.'s want him to start in home physical therapy, so I am making arrangements for that.
His hearing continues to decline, it is inevitable he will need hearing aids. At the present time I have a baby monitor in the living room and keep the other half near me so I can speak to him through the monitor or else I am yelling. The T.V. is usually blasting when it's on. I can't take him to the Speech and Hearing center yet, his Dr.s are not comfortable with me taking him any where but to clinic.
His blood pressure has been beautiful lately, I just took it before I sat down to type this 99/65 :0) and of course no temperature. His numbers and ANC continue to climb. He is even producing his own platelets now, he went from 79 to 93 on his own, yay!! He is usually transfused at 30. I tried uploading some pictures before but it didn't work, I'll try again when I can. Well I have to run, baby needs a bottle and Alec is due for medication.
Love to all,
Amy

Just passing some time decorating these boring windows!

With good news there is always bad news

So close, Alec had a positive culture come back on his broviack. He is now back on vancomyicin. Another culture was done on his port, we have to wait 48 hrs to see if it grows anything. We were just about set to come home. His ANC has been holding steady and he is taking all his meds by mouth, still vomiting on occasion, but that is to be expected. He has been off of his IV nutrition and his weight is holding steady. He continues to just drink the shake from nutrition which the Dr.'s are satisfied with.
I met with nutrition today and they talked to me about the diet Alec needs to be on once released from the hospital, all of which I knew, no fresh fruits and veggies, no fast food, not even pizza. Everything has to be cooked at home and washed thoroughly. Alec has to have his own condiments in small portions.
Alec was looking forward to going home shortly, so I had to break the news to him that it looks like we might have to stay longer because one of his test from his tubies came back that there was a buggie in it. He was a little upset, but drawing pictures of lions on the window cheered him up a bit. (picture will be uploaded tomorrow)

Antibiotic cutbacks

Alec is off of his vancomycin and cefipime. He is taking Acyclovir and his antifungal. He will be going home on those meds along with Bactrim to prevent pnemonia. His blood pressure meds have been discontinued as well. Blood pressure is holding steady :0) He continues to ask for food, steak and steak sauce, grilled cheese, bologna, but he just keeps spitting it out. He is though drinking the vanilla shakes that come up from the nutrition, that right there is 900 calories. His taste buds are still burnt, he tastes nothing. I spoke to his nurse last night about it, she is a breast cancer survivor and went through chemo, not high doses, but she said the chemo does knock out the taste buds for a while. To date Alec has had 3 nurses who are breast cancer survivors I pray for them also.
He wanted to get dressed today, he is wearing a pair of jeans, he is tired of pj's and who could blame him after a month. The air purifiers (IQ Air)have arrived from California and are up and running. Mark is home continuing to prep the house for Alec's homecomming which we hope is soon.
Alec's MRI's are scheduled for Nov 16th and 19th; 1st part is for the brain second part for the spine. This is going to be the most thankful thanksgiving ever, I just know it!
As always, thank you for all your prayers, calls and e-mails.
Love,
Amy

This is Alec's room in the transplant unit, Mommy decorated it :0)

Here is the picture that our friend Hannah drew for Alec, it is our doggie Jack :-)

Creativity, A beautiful thing!

This Alec drew not to long ago. He is walking Jack, look at how happy they are.

Need platelets

Today Alec will be getting platelets, his labs yesterday were inaccurate about his platelet counts because today he is at 35. He is getting another chest x-ray today and will be discontinuing his albuterol. He will be started on Megase to shake up his appetite a little. He still has not eaten anything yet and they had to adjust his TPN. He is up in spirits though.
My journey of sterilizing my home continues this weekend. The air purifiers should be arriving any day now so I can get those up and running.
Kevin visited Jack (the dog) yesterday and was so excited to see him. Thank you Erin for taking good care of our puppy for the next few months.
Love to all,
Amy

ANC Spike :0) BUT.. Not eating :(

Alec's ANC is off the wall. His numbers are amazing, his mouth sores are clearing up and scabbing but he is a constant picker. I am getting anxious for his MRI. We keep trying to get him to eat but he just won't. He thinks he wants something and you get it, and then nothing. He just spits it out.
He had a little case of insomnia last night, he just couldn't sleep. He is on albuterol treatments which I think is keeping him up. I asked them to change the times and they are 7am and 7pm now instead of 10 and 10.
I still haven't seen a really good smile yet no matter how much I try, it's really hard. I have to hold off on Sean's immunizations because Alec can't be exposed to recently immunized people, especially live viruses, MMR, polio and varicella. Considering we are just confined to home in any case it should be fine. I will be heading home Thursday night and I will post some pictures of his transplant and my lame attempts at drawing Darth Vader on his windows :) Although he thought it was great.
He is actually asking for the cookies that Hannah dropped off, yay I'll let you know.
Thanks Hannah and Kim!
Well I have to run.
Love,
Amy

Mouth Sores

What a trooper Alec is, even with all his mouth sores he continued to try and drink. He still has not eaten anything but continues to try and drink. Several attempts have been made trying to insert the feeding tube and have been unsuccessful.
His plastic tent breathing treatments are still going on, 8 hours a day he spends in this plastic tent, and he is such a trooper he does it. His ANC is still 0 which is to be expected. His body is covered in rashy itchy skin. His skin is also peeling, like a sun tan peel. Our friend Hannah made Alec a beautiful card which I plan on scanning and posting by tomorrow night for all to see, what an artist! She drew a picture of Jack and it looks just like him :0)
Well I must run, keep the faith.
Love,
Amy

Ford Motors

As some of you are aware, my 2002 Ford Expedition was diagnosed of needing a new transmission. This comes from a finanical oil changer. In any case, I took my disappointment to Ford corporate headquarters asking for help, hoping they would reach out at our time of need and knowing that my truck is a necessity being we live so far from the hospital and Alec needs to make weekly trips here after his transplant.
They DENIED to help us. They claim there is nothing they can do. It's sad when you try to continue buying an American made product to support our economy and an American company denies helping a family when they truly need it. Honestly, what is a rebuilt transmission really worth to such a large company. Our family has lost faith in Ford and will never buy a Ford again.
*Stay tuned for a news report on it.

Rough Patch

Alec has been having a difficult time lately. Mouth sores and throat sores are present. His skin is changing colors, very deep, deep tan. They attempted the feeding tube and he vomited it up accompanied with a nose bleed. He has been getting platelets pretty much every other day. His pressure is sky rocketing again 140/100 he is one pressure medicine to control it. Fevers have been in check knock on wood. To date though he has only needed 1 transfusion. He is weak and just wants to go to Disney to train to be a Jedi, soon enough my son, soon enough.
He has not eaten but continues to ask for different foods, like spinach ravioli's from the price club and carrots, which of course he can't have. No fresh fruits or veg tables for a while at least 6 months. He is cheered up by a new favorite movie Spirit, our friends who we met here at the hospital had given Alec a bag of goodies and when he found out it was from his friend Hannah he smiled from ear to ear and couldn't wait to watch his new movie.
I know I have not been keeping up to date as often as I would like to, but I have gotten all your phone calls and prayers thank you so much.
Till next time keep the faith.
Love,
Amy

Fever Has Shown It's Ugly Face Again

It was inevitable that Alec would develop a fever. His counts have bottomed out and he has not eaten in the past (2) days. They had to access his port last night to run blood cultures and make sure there is no infection in his port, it took (3) attempts to access him. He is feeling blue and takes alot of effort to put a smile on his face. They stopped his mouth care temporarily and switched his oral meds to IV. I was concerned with stopping the mouthcare because of thrush and mouth sores but they said he is going to get them no matter what, they want to stop the vomiting and the mouth care makes him get the yuckies, as we call it.
Today is the last day of his chemo, Thipene and VP-16 (etopiside). Then we have 2 days of rest and transplant on Wednesday :0) I am told he should recoup pretty fast after transplant. Alec continues to need 4 baths a day because of the high doses of chemo can leak out your pores and cause sores. Oh, we were also relocated to the transplant unit itself as opposed to the old transplant room. We had some major issues on the floor and the Dr. was not comfortable having us over there because of his age and the attention he requires. Mark and wanted him transferred to the transplant unit. It's technologically advanced for transplant and the air is filtered much better over there and not as much through traffic, as there are only 8 patients allowed in the unit at 1 time and only parent visitors.
Kevin seems to be holding up okay through all this. He is happy this is Alec's last time in the hospital, he said he wants him home. Well I will try to continue to update you.
xoxox
Love,
Amy

1st Day of Chemo Under Our Belt

We finished our first day of chemo, I made sure he started both of the Anti-nausea meds. He is doing great!! He ate just about an entire loaf of garlic bread and some of Mommy's famous spaghetti, Thank you Robusto Ragu :0) He doesn't like any hospital food so the Ronald McDonald house is wonderful, they have volunteers and various restaurants that cater for the residents staying there so I am able to bring Alec real food.
I have been driving the Dr.s a little crazy with what he can and can't eat. He is not aloud to have any fast food, peanuts, fresh fruits and vegtables for a while due to bacteria. He is although allowed to have anything processed. Just so you know Pizza is not considered fast food :0) Any kind of frozen entrees or canned goods he can have, which is good because he ate an entire can of spaghetti o's the other day when my husband was here.
*This eating is also without the aid of megase, his appetite stimulant, just with his good old appetite.
We got some exercises today, we did a few laps around his room. He is in isolation and can't leave his room. We played alot of games and started a daily journal, I just have him draw a picture of what comes to mind, describe it to me, and then I have him draw me a picture of how he is feeling. All smiley faces so far :0)
I was very nervous on how he was going to do with all of his oral medications, he is on 7. They consist of antibiotics, anti fungal, gallbladder protectant. He vomits usually from his meds but we told him about the angio tube and he cried so we are holding off because so far he is tolerating them; with many thanks to an M&M chasers. I am told he will definitely need one but we'll see.
There was a book sale down in the cafeteria I had a field day with. Alec was excited to see even more books. I got him some books he could read to Mommy, I told him it wasn't fair I had to read to him all the time, that I need story time too. He laughed.
Well that is all for now, thank you for all your prayers.
Love,
Amy

Great Start!!

We were admitted yesterday morning at 5:00 am. Alec was excited that he got to spend the night at the Ronald McDonald house with us. I think it was really good for him to know where Mommy and Daddy have to sleep; as we are not allowed to sleep in his room. It's for his own safety.
The broviack was put in with NO complications, yeah!! He was very uncomfortable so he was given some morphine for the pain and then he was fine. He is very excited this is our last stay at the hospital for treatments. He is also very excited that he will be given sleepy juice again to take the broviack out upon discharge.
He ate an awesome breakfast, 2 whole boiled eggs, bread and Gatorade which is really good for him. He is now asking for M&M's
Kevin spent the day with us yesterday, Alec was really excited. It will be hard on both of them to not be in contact with each other for 2 months. They are really close. Kevin can wave to him through the window but it's not the same. Well I have to go get those M&M's, bye for now.
-Amy

The Backyard Theatre

Over the summer we were invited by the very talented Mrs. M, (sorry have to with hold name till I have permission to say so) to watch an amazing performance by a group of local talent that belongs on their own reality T.V. show

Mickey made a sup rise appearance and Alec and Kevin drew him pictures.

Alec was so excited.

Thank you for everything!!