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