Tuesday, March 29, 2011

Happy Boy!

Today was totally great.  Ty was so happy!!  He's feeling great, his infection is under control and they stopped injecting the antibiotic directly into his shunt (at least for now).  Now we just need to wait and see to be sure the infection doesn't flare up in the absence of those injections.  As long as the infected shunt is in place, he is at risk of the infection returning.  But, we need to get through radiation first so we are keeping the shunt in place for now - one step at a time. 

Just look at this smile... taken this morning while he was waiting for his super hero treatment.

Monday, March 28, 2011

Getting bedda

Ty had a pretty good day today.  Although he is still on a PCA (a machine that delivers IV morphine by allowing the patient to press a button as needed), he only pressed the button half as often as he did yesterday.  That's a great improvement for the little man, and it makes me hopeful that if he continues this trend, a day without headpain is around the corner. 

The most recent culture on his CSF fluid has not grown anything yet, which is a great sign that the infection is under control.  He started this week's radiation without a hitch and he smiled at silly jokes a LOT throughout the day.  It was great. 

All is quiet tonight, Ty is already asleep.  Lou and I skyped with Gavin tonight so we were able to say goodnight.  All is well with the Campbell's.  Thank you all, goodnight and God bless.

XOXO Love, Ty

Sunday, March 27, 2011

A quiet weekend

Lou and I had a nice, quiet weekend with Ty.  I also took time on Sunday to go home for the day and spend it with Gavin.  It was very special to have that one-on-one time with the baby, he is getting so big, we had fun!

Ty's staph infection is cleared from the bloodstream but not yet under control in his spinal fluid.  He continues to be visited by neurosurgery twice a day... once to tap the shunt and pull off some fluid to test the level of antibiotics... then to inject the shunt with additional antibiotics accordingly.   We will be staying in the hospital for the rest of his radiation therapy (three more weeks) because these injections need to be done in a sterile environment under close supervision and until Ty is well enough to have the shunt replaced, the infection won't be under control unless the antibiotic regimen remains the same. 

I am very happy to report that Ty is finally coming off of his steriods.  Slowly but surely, he is on a slow taper and we hope to be completely free of them by the end of these three weeks.  Steroids cause infections and high blood pressure while masking fevers, so they are likely responsible for Ty contracting all of these illnesses in the first place.  His swelling in the brain should now be under control gven we are halfway through radiation, so his doctors finally felt comfortable with taking this important step toward his recovery.  I am so excited. 

I cried a bit while I was home today, just looking at Ty's place on the couch and wishing things were different.  Gavin, who is not even 2 years old, got on his tippy toes, pulled down a box of tissues from the counter, and handed me a tissue.  I smiled, he smiled, then he walked away saying "MaMa".  It was so beautiful.  Maybe that says something about the person he is going to become as a result of all of this.  Strong, supportive, sweet and loving.  I love him so much and I miss him beyond words during these long stretches in the hospital. 

For those who have asked about whether or not the radiation is working yet, we were told that there's really no way of knowing until after it is completed.  In fact, the results aren't expected to peak until 3 months after his therapy is over.  The best way to tell is by his clinical behavior/improvement.  Unfortunately, that is hindered due to his infection, but I can say this... Before we began radiation, Ty's tumor was growing rapidly and causing a lot of neurological issues.  Those issues have subsided, so at the very least we can say that the tumor is not growing and the radiation (in that respect) is working.  It's no use scanning him at this point to look at the tumor because it is too difficult to decifer between living tissue and dying tissue, tumor inflammation versus tumor growth, etc.  We just have to be patient which is the hardest part of all. 

Thank you for keeping track of Ty's progress.  Our sweet baby Ty!  Here he is in early 2010 after a good nap.  That's some of the best bed head I've ever seen.  Makes me laugh.

XOXO Love Ty

Friday, March 25, 2011

No news is good news

Ty had a pretty uneventful day today.  We had one minor scare around 8PM when his face and arms turned red as a lobster, but I remembered hearing about "red man syndrome" before and it is associated with the antibiotics he is on... so I wasn't too concerned.  The nurses came in, followed by a slew of residents who ordered a gazillion unnecessary tests.  All he needed was a little benadryl and Ty was back to normal.

Other than that, it was a nice, quiet day.  Ty began his steroid taper today, which is the most promising news we've had lately.  We have steroids to thank for that gorgeous dark hair that's coming in, but we also have steroids to thank for the infections, the mood swings, the myopathy and those beyond puffy cheeks!  Ty will begin looking and acting more like himself once he is off the steroids.  And, we will be able to begin a more aggressive physical therapy regimen to work on the atrophy in his arms and legs.  The atrophy has gotten so bad that his poor arm is covered in broken blood vessels just from the blood pressure cuff.  That just started happening today.  I can't wait to see him build up his strength in his limbs again.  I think it will do wonders for him mentally.

Here are a couple of recent pictures.  Super Ty at home in full costume thanks to an amazing care package Ty recently received, and there's another one from him in the hospital today when he first came back from radiation therapy. 

Goodnight wishes, hugs and kisses from TY!

Thursday, March 24, 2011

I can't believe it - another CNS infection

POOR BABY!  Ty's blood cultures and the culture of his CSF fluid have confirmed yet another staph infection in his system.  I am just so upset.  To stave off another bout of meningitis, he is now being treated with three different antibiotics that are upsetting his stomach and we have been discussing strategy around radiation and surgery to change out the shunt.  I wish he didn't need the damn shunt anymore, but he's had so many infections in his central nervous system at this point that his brain has too much scarring to effectively absorb the fluid without one.

Since the shunt is now infected with staph, it needs to be replaced.  However, Ty is in no condition for another surgery, nor can we afford to delay his radiation treatment.  There have been some experimental findings that support intrathecal treatment with antibiotics (which means injecting the shunt directly with the drug on a daily basis) and in some preliminary studies there are cases where that approach worked in clearing the infection from both the CSF fluid AND the shunt without having to remove the hardware.  It is a shot in the dark, but we decided to go for it.  So, poor Ty has to have a needle injected into his head once a day until his radiation therapy is complete (three more weeks) and we will most likely need to stay in the hospital for the duration. 

I just feel so beat up.  I am missing Gavin so much already, and Ty asked me three times today if he can go home yet.  He bounced back so well these past couple of days, I never expected this.  Luckily, Ty isn't aware of the severity here and he says he feels "bedda".  God bless him.

Wednesday, March 23, 2011

A good night's sleep (and antibiotics) can work wonders

Ty woke up feeling much better today.  Last night his fevers hit a high and they started him on some additional antibiotics.  I think they are kicking in because Ty was feeling much better today and his fevers seem to have subsided.  Hopefully he will continue to improve and we can be home for the weekend. 

The biggest concern is whether or not he has an infection right now (nothing has grown on his cultures, but his symptoms are highly indicative of one) and if that infection has penetrated the CSF fluid.  This is always such a huge concern because then the shunt would have to be replaced again.  I can't even believe I am writing about the shunt again, but it forever haunts us.  As long as he has these foreign objects, they are susceptible to becoming infected and causing complications.  They drew a sample of his fluid earlier today, so please help me in praying that there are no signs of an infection in his central nervous system.  Argh! 

Other than my growing concern over the potential infection, clinically Ty is really feeling well and I think we've seen the worst of this one.  I hope so, anyway.  It's exhausting talking about this yet again... I imagine it gets exhausting reading about it too!!  :)  Such is the life we are living these days.  His neurosurgeon said that he suspects Ty will be ready to get back on his feet and put this behind him in time for summer.  From his mouth to God's ears... wouldn't that be amazing?  He certainly deserves it, there's no doubt about that.

Monday, March 21, 2011

Off to a rough start

This week is off to a rough start, but I think the radiation is sure to help and Ty will improve as the week goes on.  We ended up being admitted because Ty ran a fever this afternoon.  It isn't a bad thing because I wasn't very comfortable with the possibility of taking him home when he was breathing so poorly, anyway.  Ty is getting used to the daily trips to the hospital and he isn't as reluctant to be here as he used to be.  In fact, he settled into his bed nicely and he's already fast asleep. 

His fever went away on its own (no tylenol), so that's a great sign that it isn't likely the result of an infection or anything.  His head pain is still pretty severe, but I think today was better than yesterday and his breathing sounds better tonight than it did last night.  I hope to be saying the same things tomorrow. 

Tonight Ty toughed it out and made a trip to the toy room for a game of Monday night Bingo.  It was sad for me, because he was in so much worse shape than the other 3 and 4 year old's at the table.  Some of the kids who are here for their first and second rounds of chemo reminded me so much of how Ty was when we were here in October and November, and what a difficult road it's been.  I can only imagine how that makes him feel, too.  But... he was determined to win a prize and he sat there until he was able to yell "Bingo".  It was adorable how his face lit up when he won.  I can't wait until he can sit up at the table and play with kids his age again.  Neither can he, and that fighting spirit of his will help to get him there. 

As always, thank you for keeping tabs on our little fighter!!  XOXO, love Ty.

Ready to begin week 3

We had a very tough weekend.  Especially yesterday.  Ty had a lot of head pain, so much so that he wasn't able to sleep much at all.  His breathing is also worse as of last night/this morning.  Right now we are waiting to see his team at the hospital and he is sleeping so peacefully that I suspect he might make a liar out of me when I tell his doctor's how terrible he's been doing :)  I won't mind one bit as long as he continues to feel better and sleep better. 

When he suffers from headaches it is simply unbearable.  He tells me, "Mommy I have head pain" over and over and over and over and over again.  I give him medicine, I put cool rags on his head, I try changing his position but nothing helps.  It's a terrible feeling when your baby cries out to you for help and there's nothing you can do.  It makes me want to jump out of my skin. 

We are looking forward to starting up another week of radiation so we can get back in the game of beating up the cancer.  After week one Ty seemed to bounce back over the weekend break, but this time around the break seemed to do more harm than good, so we want to keep up momentum and I'm sure he will improve over the course of the week. 

By the way... why is it so cold again?  Here is a photo of Ty last summer.  He loves the warm weather and I just can't wait to get him outside more. 

Friday, March 18, 2011

On the road again

Thank you SPRING!  Ty has a new found love for his stroller again.  After his diagnosis, he was very reluctant to go in the stroller because it was "too bumpy" and would cause him head pain.  In fact, I had to CARRY all 30 pounds of him (at the time) all over the theme parks when we had his Make a Wish trip to Disney this past December.  He refused to go in a stroller of any kind. 

Since we began radiation treatment, I have been loading the double stroller that I keep in the car with all of our stuff so I can easily push it along while carrying him (you wouldn't believe how many bags I carry around with me on a daily basis).  Just recently, I tried padding it was blankets and I convinced him to take a ride.  He got nice and comfy and even fell asleep.  Later I was able to talk him into taking a walk outside in the city.  He whined and complained when I went through any particularly rough patches in the sidewalk, but he otherwise responded well.  Then, just yesterday we took a long walk around the neighborhood with his brother and he really enjoyed it.  I am just so happy that he is "mobile" again because getting him outdoors on beautiful days like today will work wonders on him. 

Week two of radiation is over and done with, and Ty is doing great.  He looked better today than he has in months.  He woke up wide eyed and happy this morning, and he is talking better.  His voice is very low and strained which may be a result of the radiation, but he is otherwise showing few side effects this week as opposed to last week.  The radiation oncologist said the first couple of weeks are usually the worst, and we are so glad that they are now behind us.  We are looking forward to enjoying the weather this weekend and getting outside with our boys for some vitamin D. 

Thursday, March 17, 2011

Everything seems to be going smoothly

Ty and I decided to take my friend up on her offer and we stayed at her apartment in the city last night - thanks Matt and Juliet!!  What a nice, quiet day we had together.  We went out to a fancy dinner last night and Ty was a true gentleman (as usual).  All of the other women in the restaurant were looking my way with envy and I felt like the luckiest girl in the world ;)

The most exciting part for me was that we stayed just two blocks away from my old apartment on 81st Street, so walking through the familiar streets with Ty was so fun!  I was also looking forward to a good night's sleep for a change because we were able to wake up at 6:45AM instead of the usual 4:45AM, but it didn't matter because Ty began sighing and telling me "I can't sweep" starting at 3AM.  We've been up watching Nickelodeon since then.  Now my eyes are red and countless kiddie songs are running through my head. STEROIDS!!!! 

Our appointment with his radiation oncologist yesterday was very promising and we hope to begin tapering Ty off of his steroids early next week.  I hope that goes smoothly because I am very eager to get him back to himself as quickly as possible without compromising how far he has come with his eating and speaking over the past few days.  As always, I will be sure to keep you posted.   So far so good!!

Tuesday, March 15, 2011

It's good to be home again

Ty had his radiation treatment early this morning and we were discharged around noon.  His team was very happy with how much he has improved, but not as happy as Lou and I.  Once home, he even ate a few bites of steak, four teeny tiny meatballs, a couple of pieces of cashews and four bites of cheese.  That's more than he has eaten by mouth over the past four weeks! 

I also offered him a blue ring pop which he happily accepted.  It was too big for him, though, so I had to melt it down under running hot water for several minutes.  Then, we opened a thoughtful package from some of Ty's favorite fans here at our local bank!  The girls at Chase in Patterson had been setting aside the blue lollipops in a box marked "Ty's lollipops" because those are his favorite.  They began to really add up since we haven't made it to the bank in quite a while, so they mailed them to us along with a care package and Ty's mouth dropped when he saw what looked like 100 blue lollipops!!  It was very sweet and very thoughtful. 

I also received my own package today in response to a recent post.  My friends Caryn and Mike felt bad when they read my blog post about my crooked glasses, so they sent me some new ones to choose from.  I let Ty pick out the glasses for him, Gavin and me - see below.  He's such a sweetie because he gave me the prettiest ones :)  I can't post these pictures without also sharing that another friend, Beth, works at Luxottica and has hooked me up with some major discounts on some "real" new glasses, too.  THANK YOU.  In the meantime, I will make due with the glasses Ty picked out for me below.  They aren't too bad :)

Ty's glasses...

Gavin's glasses

My glasses.  

Monday, March 14, 2011

As usual, I spoke too soon

Whoops!  We did not end up getting discharged today as we thought.  It's okay, though, because Ty is doing really well and that's all that matters.  He was awake and active for the majority of the day today, and his speech has drastically improved.  We are here because it turned out that he needed a blood transfusion to replace some of the hemoglobin decifits resulting from radiation therapy.  Then our primary doctor came to examine Ty at the only time of day when he was extremely irritable and uncomfortable.  He felt that Ty should be observed for one more day and we were fine with it because by the time the transfusion was done it was already evening rush hour.  So, Lou came into the city and we kicked back with sushi, beers and Backyardigans. Ty is already asleep in bed with Lou and holding his hand sweetly.  Hopefully we will have a good night's sleep.  Goodnight all!

Two more nights in the hospital, but all is well. Ready for week #2

We were admitted into the PICU at Cornell very early Sunday morning (around 1AM), and we were moved across the street to MSKCC later on Sunday.  Most importantly, Ty is okay.  We were just worried about him on Saturday because he was sleeping all day.  I mean ALL DAY.  There have been times where we felt like we waited too long to bring him in, but this time we think we probably should have stayed home.  Regardless, it was good that we came to have him monitored and put our minds at ease.  Now we are just waiting for our escort to take us down for his radiation treatment and we expect to get discharged soon afterward.  Home in time for a late lunch and to give Gavin hugs before his nap :)

The doctors did perform a useless test on Ty yesterday that just made him miserable, but given his neurological symptoms (his eyes have been jumping around quite a bit), they wanted to be able to rule out seizures as a potential complication.  Lou and I never suspected seizures to be an issue, but Ty was a good sport about it and at least we can say that we know it isn't contributing to his current symptoms.  Here he is getting the monitor hooked up.  Poor guy.  He is such a sport.

I don't know exactly what the acronym for the test stands for, EEVG, but it has to do with monitoring his electronic activity of the brain while video taping him to watch for any small indications of seizures that could otherwise go undetected.  Here's a snapshot of Ty behind the monitor.  That is the simultaneous video in the bottom left corner. 

The first couple of weeks of radiation are the toughest, but I think the break over the weekend helped Ty to bounce back late Sunday.  He was smiling and speaking much better.  He was awake and playful which we haven't otherwise seen much of all week.  Lou and I really had a nice day at the hospital yesterday.  The three of us spent time watching movies, snuggling, reading books and doing anything we could think of to make him smile.  It was a nice, relaxing day.  It doesn't hurt that we scored a private from at Sloan - what a luxury!!

Thank you for always checking in on Ty.  He is doing good and tolerating the radiation therapy as good as can be expected.  We hope to report improvements in his symptoms over the next month or two.  In the meantime, trying to be patient is the hardest part!  XOXO from all the Campbell's.

Saturday, March 12, 2011

Big huge THANKS to the Robert Manzoni Memorial Fund

Before I jump into details about the amazing night we had at the third annual Robert Manzoni Fund dinner, I want to apologize because I didn't get to share an update on Ty's appointment yesterday like I promised.  It turned into such a hectic day, I wasn't able to get online until now.  Long story short, we ended up being in the hospital from 7:30AM until 4PM because his doctor ordered a CT scan along with multiple tests before we were able to get clearance for home.  I am happy to report that the results of the scan show no significant change in the tumor.  Sure, I would love to say it was smaller, but that isn't to be expected so quickly after radiation.  As long as it isn't getting any bigger, Ty will continue treatment and he will keep on fighting the fight.

The second we heard the words, "you can go home now," Lou and I zipped off to Long Island so we could attend the dinner.  What an incredible event it was, Lou and I are grateful beyond words. I woke up way too  early today (with a bit of a hangover :) and I couldn't go back to sleep because I couldn't stop thinking about how much fun we had, how many wonderful people we met, how great it was to see our friends and how much I truly miss everyone.  I couldn't hold back my tears several times throughout the night - not because I was sad but because I was so overwhelmed by everyone's kindness and support, because I was so happy to see so many people I love, and because I was so honored to be part of such a special event.  Lou and I will remember last night always.

Thank you so much to everyone who made this event such a success, and especially to the founders of the Robert Manzoni Memorial fund for choosing to honor Ty at the event.  We were so honored.  Although we never met, Robert Manzoni was clearly an incredible person.  He grew up in Long Beach and has touched the lives of so many that his memory will be ingrained in the community for always.  Long Beach lost Robert in December 2002, when he was only 27.

When Robert Manzoni was diagnosed with brain cancer, he amazed his friends with his ability to accept what was happening and take it in stride.  He used to tell his friends that what bothered him more than his own devastating diagnosis was seeing how many small children were suffering with cancer.  His fund was created to help those children in his honor.

I learned that his friends called him "Smooch" and when I look through his pictures on Facebook, I can see in his eyes what a warm person he was.  I can also tell from the activities taking place in those photos that he was clearly a fun person to be around!  The type of person that everyone would gravitate toward because he could make you smile.  Lou and I are so lucky to have been brought into this very special circle and to be introduced to Robert's story in such an incredible way.  Thank you, thank you, thank you.

If only I had pictures!!  I will be sure to track some down and post them soon.

Friday, March 11, 2011

Week one completed. Five more to go

Some mornings I look in the mirror and I think I look 100 years old!  This whole situation sucks the life out of me sometimes and I don't have the motivation to fix it by getting my nails done or my hair done because my only priority is to sit at Ty's side 24/7.   In fact, it had been SEVEN months since I had a haircut and the ragged ponytails with crooked glasses that I've been sporting are not the best look for me. J  Then, yesterday I received the best treat!!  A great friend of the family, Liz, came to my house and cut and highlighted my hair.  I feel like a new person!!  Gavin also got his first haircut.  It was down to the middle of his back so it was about time.  He looks like such a big boy now!  I have pictures to post as soon as I have a chance to upload.  Next I need to get a new pair of glasses.

I brought Ty upstairs later in the day because I had to try on clothes and he was so sweet.  I would try something on, then bring the clothes over to Ty and help him to point to the ones he liked best.  His speech has been absolutely terrible over the past two days (to the point where we often can't understand the difference between yes and no), but our little fashion show turned out to be a nice distraction for him.  At one point he pointed to a black dress and I smiled and said "don't you think that made me look chubby?"  He said, very loud and clear, "No!"  He is the best boy in the whole world who will make the greatest husband some day if God gives him the chance J

Ty and Gavin also received a very special package all the way from a ministry in Louisiana a couple of days ago.  It's amazing how far his story has travelled.  The package included two very special stuffed turtles that are intended for small children with chronic illness/injuries because they are the perfect size and softness to use as positioners or to elevate their legs.  The first turtle was used by a beautiful little child named Sam who had a near-fatal drowning accident and his favorite turtle was used to prop up his legs while he was in the PICU from March - May 2007.  Ty and Gavin both loved the gift and we use Ty's turtle in the same way to get him comfy on the couch in front of the TV. 

We have an appointment with Ty's doctor's after his radiation treatment this morning and we are very anxious about it.  Of course, the Hutchinson Parkway and the Bronx River Parkway were both closed due to flooding this morning so our drive in is miserable.  Anyway, Ty has improved drastically in some ways, but he suffered rapid declines in other ways.  His headpain and nausea are practically gone!  We have waited four months for Ty to have a day without headaches again, and finally we are there.  It is such a relief, but it doesn't come without a price.  As a trade off, his myopathy has gotten worse, his speech is gone, he can't take anything by mouth - not even a drink - and he is very depressed about it.  He cries so much it is absolutely heartbreaking.  Lou and I hope to hear that this is expected and that these side effects will diminish over the next week or so.  We are just very worried.  I will be sure to post an update later this afternoon to let everyone know what his team says. 

Wednesday, March 9, 2011

So tired

Wow.  Commuting to the city for daily radiation is exhausting.  Not so much for Ty who sleeps there and back and then again on the couch after we get home (due to the after effects of his daily anesthesia), but I am totally pooped.  We have to get up very, very early because all of the babies get radiation first, which means the appointments are around 7AM every day.  We have a pretty long drive and I feel very drained.  I have a feeling, though, that this is going to fly by.  I am so, so  anxious for him to get off steroids and begin feeling better.  I keep thinking "just a few more weeks!"  I think I might be more anxious now than I was when I was waiting for his due date (but I'm not sure because that was pretty damn exciting).

So many special things happened today, but I don't have the energy to share this evening.  I know you understand and I will be sure to share more tomorrow :)  Thank you so much for always checking in on my Ty and for caring so much. 

Here is a photo I took this morning while we were waiting to see his doctors.  I know I say this all the time... but look at those dreamy eyelashes! 

Tuesday, March 8, 2011

So far Ty is doing well

It was hard to figure out a way to explain to Ty what is happening.  Why we have to go to the hospital every morning and why he has to go into that scary room with the huge machine, go under anesthesia and then gear up for the long drive home. 

Lou was great.  He told Ty that he has to go for Super Hero treatment every day, and that we have to be patient because it's going to take a long time before the super powers begin working.  He said that Spiderman had radioactive blood, and that Ty's radiation will make him strong like Spiderman.  I guess at 3 years old that is a good enough explanation :)

So far, everything is going okay.  Ty doesn't seem to be suffering from any side effects, and he comes out of the treatment feeling pretty good.  His bigger problems lie in the steroid myopathy that he suffers from and the fact that his brainstem is still so inflamed.  He isn't able to eat lately because of this, even when he wants to (we feed him formula through his G-tube) and he still has bouts of nausea and head pain.  It sucks, but it can and has been so much worse so I am happy that he is doing as well as he is. 

In fact, today Ty took a bath.  I put on a bathing suit and I got in the tub with him because he is otherwise too weak.  It was a very special moment, one that I will always cherish.  He hasn't actually gotten into a tub since December and he really enjoyed the feeling of being submerged in the warm water.  He even smiled wide and told me I was tickling him when I washed his feet.  Just knowing he could feel me washing his toes, and that he was enjoying it was so reassuring.  At one point he when he was quietly staring out the window I asked him if he wanted to get out and he softly said "no."  It felt great to be able to give him that time doing something that felt really good.  He deserves that.  Obviously he deserves much, much more than that... but for now we will take it.  Baby steps are okay with me, as long as they lead him to recovery. 

Tonight, the top of his head smells even more delicious than it did when he was a newborn.  I can't stop putting my nose to him.  Big smiles :)

Thanks to all of you.  Here is just a very short and sweet video clip of Ty back in November during his second round of chemo.  He says "thank you everybody!" 

Sunday, March 6, 2011

A moment to reflect

Tonight I just want to reflect on how much love we feel from everyone.  In the comments from this weekend alone we heard from some of our new friends in North Carolina, Baltimore and Canada. I want each and every person who cares enough to check in on Ty every once in a while to know that you are the reason he/we are able to stay strong through all of this.  Thank you, thank you, thank you.

We will be on the road at 5:30AM, heading down to the city to begin our first full week of treatment.  As much as I want to hold onto every second of every day, I also have such anxiety over this.  I am anxious for this six weeks to be over, for the treatment to work wonders, and for Ty to begin feeling well again.  I can't stand watching him like this.  I just want my baby to feel remotely good again.  I know he will because I have very clear visions of him enjoying the warm weather on his feet this summer, and many more summers thereafter.  :)

We love you and look forward to keeping you posted on how Ty is doing as the week progresses.  Thanks again for all of your loving support.  XOXOXO. 

Saturday, March 5, 2011

Determined little guy

Ty's cousin James is so cute.  He sent Ty a drawing of Super Ty, who is a super hero who embodies the super powers of ALL the best super heroes combined.  So, he has spiderman webs, an iron man chest, a superman cape, batman mask, etc.  Ty smiles so big when we tell him how even though he doesn't feel very strong right now, all of his amazing super powers are in his head and in his heart.  I think he really knows it to be true.

For example, Ty is limited to only one arm at this point.  He doesn't have the strength to lift it, but he is still capable of bending it at his elbow and grasping things.  You would think anyone, especially a 3 year old, would carry on and say "I can't... I can't..." but Ty is constantly saying just the opposite.  When I try to hold his juice for him, he insists "I can do it myself," and he manages to get it to his mouth even if it takes a while.  When I try to feed him, he also insists on holding the fork, getting the food on the fork, and bringing it up to his mouth all by himself. too.  He hits his cheek and drops the food, but he never gives up.  He is incredible. 

One of my best friends, Colleen, often writes messages to Ty that say, "I won't give up if you won't give up."  Well, just for the record, Ty is not giving up :)  Treatment has just begun so there isn't much to report other than the fact that he has been doing well over the past few days.  Ever since his increased steroids, he hasn't had much headpain or nausea which is a huge, huge relief for all of us.  He has been pretty happy, which is all I can ask for right now.  It will be a while before we know if radiation is effective, and the uncertainty in waiting is already torture, but thanks to all of your love and support we continue to put one foot forward and stay as strong as we can for Ty's sake.  Thanks to you all.

Thursday, March 3, 2011

Radiation begins tomorrow

My Ty.  He is doing very well today.  I have a love hate relationship with the steroids because they work wonders on his neurological condition while destroying his muscle function and bringing on major mood swings.  He is speaking so much better today, he is able to eat and drink and he has been relatively happy all day.  His nausea has also subsided, as did his headpain (thank God).  Here he is enjoying his pizza and taking big boy bites instead of having me cut it up into teeny tiny pieces like I have had to do in the past.

He has made me smile so many times today, but we also had some difficult times throughout the day when we can't understand what he's trying to say.  Today he said something over and over and over again that sounded like "I want may-doe".  We took turns guessing at what he wants... "tomatoes?... play-doh?... you want to play with those?..."  We asked him, "is it something to eat? something to play? something to watch on TV?" and he answered "no... no... no"  Turns out it was something to eat.  It was a bagel.  It went on for almost 20 minutes before Lou finally guessed it.  It was so frustrating for all of us, especially Ty.  Let me just say, though, that his speech is SO much better than it was for the past two-three days.  He really has bounced back and it is so great. 

Ty had his radiation simulation this morning and he begins treatment first thing tomorrow.  They wanted to get in a session prior to the weekend so he will be getting lateral radiation (which is more simplified than the IMRT regimen that is scheduled to begin next week).  Although the long term side effects of lateral radiation are dangerous, we agreed to allow him to undergo a few sessions in the essence of time rather than wait until the IMRT planning is complete (which takes six days in the office of the neurophysicists).  It's really very interesting.  It's such a precise science that is constantly improving.  I am very hopeful about what they can do, and I have a lot of confidence in his radio-oncologist.  Ty is in very good hands here. 

Looking forward to his next big step.  Let the healing begin!  Here is a photo of Ty when he was just one year old.  I just came across it today and it made me smile because he looks like such a bruiser.  He had a fighting spirit even then :) 

Wednesday, March 2, 2011

Switching into turbo gear

Ty's MRI was extremely disappointing. In the 19 days since his surgery, it is growing back and causing significant pressure on his brain stem again.  He has bounced back so many times before, but it is taking it's toll and this time it is hitting him pretty hard.  We need to get back in the ring immediately and we are ready.

Ironically, I received a phone call from Boston (Mass General) just before seeing the latest MRI report.  It turns out that they reviewed his case carefully and did not feel Ty is a good candidate for the proton beam therapy after all.  They said that the dosing with protons would be low, the efficacy is expected to be the same as IMRT (which is what we will be doing here at MSKCC) and the side effects will be minimal regardless of which approach.  So, there wouldn't be much of an advantage to leave our team here in NYC and drag him all the way to Boston for therapy. 

We were disappointed because we were always led to believe that if proton beam was an option, it would give him the best shot at survival.  The radio-oncologists we spoke with have reassured us that this is not the case given the characteristics of his tumor and I just hope they are not sugar coating.  At the same time, we are also relieved because when we received the terrible news about the tumor growth we realized we simply can't afford to wait for treatment in Boston anyway.  Even if he was a candidate, they wouldn't be able to take him for several weeks and in Ty's case every 24 hours is critical at this point. 

He was given a high dose of steroids this evening, and it has helped significantly (as suspected).  Although it will hamper any strength building in his arms and legs, it will improve his ability to speak and swallow, and it will minimize his nausea and head pain.  That alone will make him so much happier.  We are already seeing improvements just hours later.  He has a hearty appetite for the first time in weeks, he's been relatively happy and having fun (even made it to the toy room for Bingo tonight) and he is having much less pain overall. 

It's a whole 'nother story for Lou and I.  Our anxiety has spiked and we are completely on edge, but once he is in that machine and starting radiation treatment I think we will both be able to breathe a bit easier.  It will work, it simply has to.  His first dose may even happen as early as tomorrow.  We will keep you posted. 

In the meantime, thank you so much for all of your thoughtful comments, emails, gifts and facebook messages.  Even though we have little time to respond, please know that we read each and every one of them and are touched beyond words.  Without your support I don't know how Lou and I would be able to do this.  XOXOXOXO to all of you.

Tuesday, March 1, 2011


SuperTy is not feeling very super.  We went to the hospital today to discuss radiation therapy and ended up overnite because he is just so weak.  His headpain is very significant, his nausea still isn't under control, his speech has been so compromised that I can barely understand what he's trying to tell me (I have to hold up pictures and ask him to point), he still can't move his legs and he can barely move his arms.  My little superhero hasn't lost his sense of humor, though... he just pointed and told Lou he was "chopped liver" because he had to sleep on the chair next to us while I get to sleep in his bed.  He grinned from ear to ear.  I love him so much.

The doctor's may as well have told us that he was drained by kryptonite because they otherwise have NO idea why Ty is so weak.  We went for a CT scan and a series of x-rays to make sure his shunt is functioning properly, and everything looked as it should.  It doesn't look like there have been any changes at the tumor site (THANK YOU, GOD) and his bloodwork looks fine.  So... we will be getting an MRI tomorrow.  Please pray that it doesn't show us anything different pertaining to the tumor.  The doctor's suspect that perhaps his brainstem is swelling as it decompresses and causing some of these side-effects.  The weakness in his arms and legs is a result of acute steroid myopathy which occurred a few weeks ago after our repeat visits to Urgent Care. 

When high doses of steroids are given, it can have some devastating side effects, especially in the upper arms and thighs.  Don't get me wrong, the steroids saved Ty's life on more than one occasion in January, but we have been trying to taper them ever since so he can begin to improve physically.  I have a feeling that we will need to increase that dose again if his current problems are related to swelling in the brainstem.  So frustrating. In the long run, though, I won't care if Ty can't walk for several more weeks... even months... as long as he survives this nightmare in the end. 

When new nurses or doctors review his file, they always express shock when they see all that he has been through over the last six months (six months!!!).  Knowing that Ty has charged on despite so many bumps in the road makes me even more confident that he will get through this.  He is a blessed little boy with an iron fist.  Thank you for following him on this journey. 

I have mentioned before that sometimes I let off steam when I am alone in my car by screaming my head off and crying a good cry.  I usually yell at the cancer, "Leave him ALONE!!!  Get the f___ away from my baby!!!" and it helps me to feel better.  I haven't had any time alone in the car for weeks and I can actually feel the need to yell and scream, but I should probably just go to the gym or something instead.  I must look like a complete crazy person to anyone who pulls up alongside me :) 

I was so happy when I walked by one of the orange rooms on the 9th floor today because a little girl who had been here since October wasn't there anymore.  Her name is Casey.  Of course my heart then immediately sank worrying that perhaps she had taken a turn for the worse.  Later this evening I took a walk around the hall and I saw that she was in a different room, her pictures were taped to the door. That released me from the worry that had been weighing on my mind since I passed her room earlier, but now my heart is filled with pain for her family.  Just when I was reflecting on how many nights I've spent in these rooms, I realized that they have been here for much, much longer.  These poor babies.  They have such an incredible spirit to be able to endure all of this and still fight for their lives.  Each and every one of these kids is an inspiration.  God bless them. 

That reminds me.  Among the most common childhood cancers are leukemia and lymphoma. So many of the children I see here day in and day out are waiting for a bone marrow transplant.  Please consider visiting http://www.bethematch.org/.  You can easily register online, they will send you a kit with cotton swabs for your cheeks, and you can mail it back in a pre-paid envelope.  I did this a couple of months ago and it was so easy.  You have all done so much for me and my family, this is just a small way in which I wanted to pay it forward.  I had never heard of this before I became a "cancer mom" and I just wanted to share information about this amazing organization.  XOXO.