Showing posts from February, 2011


Lou and I are so anxious to begin treatment, we want to jump out of our skin.  Poor Ty is just not doing well, and we are filled with horrifying thoughts of this evil tumor growing back fast and furiously before we even have a chance to treat it.  I know things are happening at the tumor site because Ty complained that his tongue felt numb today and his speech is extremely low and getting more slurred with each passing day.  It's so frustrating for all of us when he is trying to tell us something and we can't understand.  We usually figure it out, but it can take a while and it can be upsetting at times.  Tomorrow we return to Sloan Kettering to discuss radiation therapy as a next step, with a low dose chemotherapy regimen happening simultaneously.  Boston will be discussing his case on Thursday, but we don't want to lose any time at Sloan if it turns out that Ty isn't a strong candidate for Proton Beam.  If that's the case, we will sooner stay in New York and beg

Update from Friday's appointment

We had a long day Friday, filled with doctor visits.  Ty was so scared that we would have to stay at the hospital it breaks our hearts, but then to see how excited he gets when we are able to fulfill our promise and say "it's time to go home now," it was totally adorable.   His doctors think that Ty is slowly improving, but they had few answers for better managing his pain and nausea.  Unfortunately, they believe Ty is suffering from what is called "pressure waves" resulting from the fact that he still has some residual tumor on his brain stem.  There aren't any options in treatment that will better address his pain because it is something that is completely unpredictable and we wouldn't want to keep him on a steady, high dose of morphine in anticipation of pain, but we will continue to give him pain meds as they occur.  He will continue to have good days and bad days. If you're wondering why he is experiencing pressure if he has a shunt that is

Small Town Sweetness

Since we moved to Pawling, I haven't had much of a chance to adjust to the new neighborhood because we have spent so much time back and forth, in and out of the hospital; but lately I came to realize just how lucky I am to live in such a friendly, close-knit community.  First, we have so many neighbors that have stopped by to wish us well and offer to help in any way.  In fact, one of our neighbors, Ginger, is a Nurse who used to work at Sloan Kettering.  She recently spent over an hour with Ty in order to help me change the access needles to his mediport.  It was after a large snowstorm and I didn't want to have to take him all the way into the city.  We had never even met, but she posted her phone number in a message to me on this blog and I was in a bind.  Immediately upon meeting her, I knew Ty was in good hands.  She was sooo good with him and so kind, because she is a loving mom of two herself and she understands.  It was great. Then, two days ago Ty received an amazi

Chutes, ladders and belly tube feeds

We played Chutes and Ladders over a dozen times tonight. Ty was experiencing another one of his famous winning streaks ;) Every win was followed with him saying "I want to pway again," to which we all gave an exaggerated moan and set up the board again. I wish I could say that we enjoyed every minute, but in truth it was pretty torturous :) We had to feed Ty Pedialyte and baby formula through his belly tube all day today. It made him sick several times, but we just didn't want to go another day without any nutrition and little hydration. Especially given the fact that the only thing he ate over the past two days was some pineapple. It was sad for me when I took out the pump and pole. We hadn't used it in so long and some of the parts were still packed in boxes from when we moved late last year. I guess I just hoped we would never need it again. It's okay, though. It will help to make him strong. Other than that, today wasn't much different than wha

Getting better day by day

I am sitting in bed listening to Lou read Ty a bedtime story.  It is music to my ears to hear Ty chime in on his parts during "The Little Mouse, the Red Ripe Strawberry, and the Big, Hungry Bear."  It's such an adorable book, and Ty smiles from ear to ear with every turn of the page.  This is normal, 3 year old stuff, but less than two weeks ago I wasn't sure I would ever see this again.  What a gift.  So far, each day at home has been difficult, but getting easier.  Ty is still suffering with head pain and nausea/frequent vomiting (as should be expected), but he has an amazing fighting spirit that keeps us all going.  I am looking forward to telling you all about how amazed we are with him one week from now, when he will be even more active and even more outstanding considering all he has been through. Next steps are unknown.  I spent a lot of time pulling together a ton of reports and imaging to send off to Mass General for proton beam radiation therapy.  We don

A tough weekend filled with blessings

Ty and I drove home from the hospital Thursday evening grinning from ear to ear and leaving a trail of dust behind us.  We don't need to return for a follow-up appointment until Friday and we were so excited to sleep at home after 12 nights sharing a hospital bed.  The past three days have been tough because Ty still has a long road to recovery, but it's also been sprinkled with enough beautiful moments to allow Lou and I to appreciate how lucky we are.  Like when Ty opened up a package from a complete stranger (sent via an old friend of Lou's) that included this Nemo doll.  The doll is the same that another little boy names Carson carried around when he was diagnosed with cancer at 3 years old.  He is now cancer-free at 7 and his mother was inspired by our little fighter to send this very special memento to Ty.  Nemo's character represents everything that our little boy is, a fighter who is filled with love and never gives up :) Or, the time that Gavin climbed on top

Home a day early - can you believe it???

Finally, Ty gets a break.  He is going to be discharged tomorrow afternoon (Thursday).  He is beyond excited.  His doctors say that Ty has bounced back from this surgery in a way that they never ever would have expected.  Especially given his previous history.  I told them it is because Ty has EARNED this gift. Throughout this whole incredible, albeit horrific experience, Ty has had setback after setback.  Yet, with each setback there was also a blessing in disguise.  For example, his MRSA meningitis was such a severe infection that it actually attacked the tumor as well and kept it from growing during those difficult weeks.  His hemorrhage in October was devastating, but it also meant that there was drastic tumor necrosis taking place.  His shunt removal in November led us to discover the problems he suffered due to hydrocephalus and helped us to explore new options.  Our decision to provide palliative radiation therapy led us to find that his disease had NOT metastasized as was sus

Ty continues to amaze us

Ty had his fourth ventricular drain placed in his skull today, and he is doing SO GREAT! Right now, Ty has three huge incisions on his head, one smaller incision and several other open wounds from where sutures held his drain in place. He has another new, 2-inch incision on his stomach from where they snaked the tubing from the the valve in his skull to pour out into his abdomen. He has holes all over his hands, wrists, ankles and feet from the various IVs that were placed (or attempted to be placed) during his past two surgeries, two of which are still in use. He is covered in bandages, bumps, bruises and bacitracin. Know what he did today? He ate pizza, he played "i spy", he watched Bambi and he read books. Know what he didn't do? Complain. Not once. Ty, you continue to amaze us all. Keep fighting my sweet, special boy. Home on Friday!

With love to you all

Ty and the rest of our family would like to take this opportunity to send a message of love on this Valentine's Day.  We are so grateful for the outpouring of love we have received from all of you, and we wish there was a way to reciprocate.  I know I've said this many times before, but we look forward to the day that we can put all of this behind us and pay it forward.  The biggest lesson we have learned so far is that people are kind and good and full of love.  Thank to all of you for your loving words and acts of kindness over the past six months.  Ty is resting.  He faces another surgery tomorrow.  He will be getting his fourth (and hopefully final) VP shunt placed tomorrow.  He still has a ton of pain from his crainiotomy, but I guess it's best that he goes through another procedure now rather than waiting until he feels better only to knock him down again.  If all goes well, we should be able to move out of the PICU to a step-down unit later this week, and maybe eve

Ty is doing well

Yes, this picture of Ty and Gavin was taken TODAY.  Doesn't he look amazing? Ty's breathing tube and bandages were removed yesterday.  It was a difficult experience for me and Lou to witness his extubation, but such a relief when they wheeled that ventilator out of his room.  We were told that Ty was going to have to wake up completely and show signs that he was capable of breathing on his own before they could attempt to remove the tube.  When his vitals were stable the day after surgery they stopped his sedatives in order to rouse him.  Within a couple of hours he became more and more conscious of his surroundings.  His face told me he was absolutely horrified and confused.  He couldn't speak, he wanted that tube out of his throat and it appeared as though he was gagging.  I just kept apologizing to him, caressing his face and telling him they would remove the tube as soon as possible -- and they did!  We had to step out of the room during the actual process, but I watc

Our little fighter indeed

Ty is out of surgery and doing well.  He remains intubated until tomorrow, but his doctors feel that his vitals and repiratory signs are very strong, so we expect him to be extubated after an MRI tomorrow.  We were prepared for him to be intubated for a much longer period of time, so this is really terrific news.  The surgeons were able to debulk and resect tumor without any damage to Ty's cranial nerves or his brainstem - which were the biggests risks associated with this surgical approach.  THANK GOD!  They also feel they were able to remove up to 90% of the existing tumor, which is pretty amazing.  The only downside is that the tumor was right up against his brainstem and "sticking" to it, so it was too risky to scrape away at the disease in that area.  Not sure what that will mean as far as whether or not radiation is an option as a next step or if we need to consider additonal chemotherapy to see if we can get some sort of a margin between the tumor and brainstem

Preparing for a very big day tomorrow

I don't know why I just wrote that as the title to this post.  There really is no way to prepare for tomorrow's surgery.  We aren't doing anything different other than trying not to think about it too much and saying silent prayers every chance we get.  Knowing that tomorrow could go very well or very poorly is something I try not to even think about in order to get through the night, so instead we have spent the day doing pretty normal things.  We read books with Ty, we ate pizza, we had lots of visits from family and we are wrapping it up watching Toy Story 3 and Curious George.  If you've been following Ty from his previous surgeries, you may recall seeing pictures of him with the special "stickers" on his head that provide the GPS mapping to guide the endoscope.  It's really pretty amazing.  Here's a photo of Ty with his stickers for tomorrow.  I think he looks so strong and so beautiful in his "hat" that they made from a towel in the O

Ty Beats Cancer - Part 2

Essentially, Ty has come full circle and we pretty much landed back where we started from… we're back at square one, heading toward a major surgery with the hopes of removing enough tumor so Ty will be cleared for proton beam radiation treatment at Mass General.   The difference is that we have so much more knowledge and experience being a "cancer family" this time around, and that will help us through the tough road ahead.   When I think back to the time we spent in the hospital prior to his first major surgery (debulking and resecting his tumor in August), I remember having this idea that we would follow some sort of schedule.   I couldn't have been more wrong or more inexperienced in dealing with a chronically ill child.   Anyone who has had the unfortunate experience of suffering through a cancer diagnosis with a loved one knows that there is something called a "roadmap" that doctors present to the patient in an effort to lay out the treatment plan.   A

When is enough, enough?

Yesterday was the worst day of our lives.  Considering all we've been through, I never cried so much or felt more pain than I did over the last 24 hours.  When we arrived at the hospital on Sunday, Ty was still relatively okay.  He was able to speak (not very well, but we could understand him) and he even ate a chicken nugget and a couple of French fries on our way in.  We knew there was likely an additional hemorrhage pressing on his brainstem that was causing his increasingly slurred speech and overall weakness, but we thought with another steroid boost and close observation at the hospital that he would be feeling better in no time.  By the time Ty woke up on Monday morning, he was completely incapacitated with uncontrollable shaking and severe lethargy.  He was unable to respond to commands, he had severe pain and he was wetting the bed.  He spent the majority of the last 24 hours completely unconscious and unresponsive.  He was even able to go in for an MRI without anesthesi

Super Bowl Sunday at Sloan Kettering

Yes, that's right.   We are back in the hospital with Ty.   I haven't been able to update my posts because things became really difficult at home over the past few days.   Early this week, Ty's condition started worsening.   He was getting more and more sleepy, his speech was getting worse and he was increasingly weak.   His breathing began to sound labored on Thursday and by last night we were on the phone with his neurology team discussing whether or not we needed to rush to the hospital again.   Instead, it was suggested that we try to increase his steroid at home, see how he does.   Lou and I saw little improvement, so we knew we would have to come in. I was stalling all day today, we didn't even leave until 3PM and you should have seen how long it took me to pack our bags.   On one hand, I was a nervous wreck over his condition and wanted desperately to be in a place where I know they can address any urgent medical issues, but on the other hand I have been so upse

Luckiest mom in the world

I stare at Ty so often throughout the day that he is starting to roll his eyes at me. It's funny. He is just so beautiful and so special to me, I can't help it. Despite everything, when I am looking at his soft, innocent face I know I am the luckiest mom in the world. I know I'm not alone. I think most parents feel this way and it's a great feeling. What life's all about, really. Not knowing what was happening with Ty was a wonderful escape when he was inexplicably improving, but now Lou and I are getting very anxious. We have an MRI scheduled for Tuesday and we're hoping that a good amount of blood will have been reabsorbed so we can have a more accurate picture of what we're dealing with at the original tumor site, and what might be the best approach (i.e. surgery, vs. continuing his original chemotherapy regimen, etc.). Unfortunately, we are afraid the imaging next week will not show us any significant change because he hasn't changed very much clin