Tuesday, November 30, 2010

Post #100!

Wow.  I can't believe this is the 100th post to Ty's blog.  With the exception of a couple of difficult days here and there, we have tried to post updates on a daily basis which would mean we began this painful journey more than 100 days ago.  After 20 days in the hospital this time around, it's beginning to feel more like 20 years... but when I look back to the days when our daily routine involved picking up a buttered roll on the way to preschool, and sunset trips to the beach after picking up the kids at the sitter, it feels like those normal family days were just yesterday. 

We weaned Ty off of his IV morphine today, and converted his pain meds to oral.  It's been difficult to manage his pain, so we won't go home until tomorrow.  But, regardless, WE'RE GOING HOME TOMORROW!!!  Based on our previous experiences, I think just leaving the hospital will lift his spirits and help him to feel so much better instantaneously. 

The doctors met with us around 3PM today and they said the cytology report has not been posted yet.  We will hear from them tomorrow morning whether or not Ty's cancer has become systemic, meaning whether or not it has spread to his CSF and the rest of his central nervous system.  If that is the case, we will have a lot of difficult decisions to make - but we will never lose hope and neither should you.  Right now, we obviously hope that the cytology report comes back negative.  If not, well, we will cross that bridge when we come to it.  In the meantime, keep the prayers coming, cross your fingers and toes, rub your favorite good luck charms and send positive light our way.  We love you all and we can't thank you enough for your support. 

Here is a video of Ty when he was 4 1/2 months old.  He was always the sweetest boy in the world.  I will never understand why cancer can attack such innocence and beauty.


Sunday, November 28, 2010

Patience

We are waiting for cytology on Ty's CSF, and we don't expect to be able to provide you with details until Wednesday.  The cytology is an examination of all the various cell types in his CSF in an effort to try and figure out his otherwise unexplained head pain.  In the meantime, we are patiently waiting for surgery tomorrow, and even more patiently waiting for discharge.  Ty continues to suffer from setbacks, the latest being an extreme bout of nausea and fevers, but as of this evening he was able to keep down his tylenol and now he is like a new little man.  He's happy as can be.  Here is a picture I took just minutes ago of Pop-Pop in bed with Ty.  Today he had him looking through toy catalogs and building upon his long list to Santa. 


Speaking of Santa and the holiday season, a great friend recently suggested that I post a message about what we expect from our friends and family during the holidays.  It's true, I imagine some of you aren't exactly sure what to do.  Should you send photos of your smiling children and holiday greetings filled with cheer while we are going through such difficult times?  Yes... absolutely.  Lou and I would very much like you to.  We love to hear from our friends, especially around the holidays, and it brings us joy to see how big your kids are getting, how cute your dogs are, how your family has grown, etc.  Please don't hesitate :) 

Tomorrow Ty will be having a new, sterile VP shunt placed.  If all goes well with his recovery and pain management, we expect to be discharged on Tuesday.  We can't wait to take Ty home.  He always does so much better when he is back in his element. 

Saturday, November 27, 2010

Today we got some difficult news.  I don't have the energy to get into the details, but I will be sure to update everyone soon.  Don't worry, though... Ty is a fighter.

On days like this, it's very easy to get angry.  I hate the world around me.  I am mad at God and at all the differents Saints that I've prayed to for all of their different causes.  But luckily, these feelings are fleeting.  I just have to look at Ty and I am reminded that he is a gift.  That those long eyelashes and perfect pillowy lips are to be cherished, and that we are all so blessed to have him.  This photo is Ty sleeping at 3 months old, but it might as well be Ty sleeping at 3 years old.  This is God's work. 

Friday, November 26, 2010

Brotherly love

Today was an incredible day.  Ty is feeling great!  His headaches seem to be gone altogether, he sat up a couple of times, he was wide awake all day and talking about how he's ready to go home soon.  "As soon as they get the tubie out of my head," he says. 

The visit with Uncle Bill, Aunt Lorraine and GA-GA was great.  The nurses broke the rules for us and allowed Gavin to come into Ty's room - which was such a blessing.  Ty was so happy to see him, and when the doctor asked him, "how is your brother?" Ty replied "BIG!"  Lou and I think so, too!  Not sure what Aunt Theresa is feeding him, but she did tell me he ate two slices of pizza for dinner the other night and I noticed it is going straight to his thighs :)

This was the best I could capture with my phone.  Brotherly love.  Doesn't Gavin look huge?


Tonight Ty said something that made me run out of the room to cry.  He called me in close for a hug and a kiss, and after I gave him an extra long hug he asked, "MaMa...You want me to get bedda?"  I got so choked up immediately, I could barely answer, "Yes, baby.  I want you to get better more than I want anything in the entire world."  I hope God was listening.

Thursday, November 25, 2010

We are thankful

We are thankful for our incredibly supportive family and friends.  We are thankful for the doctors and nurses who give Ty love.  We are thankful for Ty and everything he does.   We are thankful for our baby Gavin and his happy attitude through all of this. 

Today we spent Thanksgiving at the hospital, and it was a good day.  We are so grateful for the time we have with Ty, especially when he is feeling well.  Today he had a good stretch of about 6 hours where he was awake, happy and without headaches.  It was a blessing.  There were several volunteers who served a delicious Thanksgiving feast in the playroom today that Lou and I particularly enjoyed.  All things considered, we had a nice holiday!

Tomorrow Gavin is coming to the hospital!!  Today was the first day that Ty talked a lot about his brother, so I am excited to get them together tomorrow.  He wanted to see pictures of Gavin, and he said "I miss Ga-Ga."  I really wish I was able to record it, because it was so sweet I almost cried.  Lou and I miss him beyond words, too. 

I just know Ty is feeling better because this morning he wrapped his arms around my neck and insisted I hug him, face-to-face, for three hours.  I cherished every minute of it (despite the neck cramp and the twisted back from the awkward position I was in).  One of the hardest things about Ty being sick is watching him in pain.  Before this disease turned our lives upside-down, I remember fondly the sleepless "sick" nights when I would hold and snuggle my babies through fevers and bad colds.  How I could rock them to sleep and cradle them until they felt better.  When Ty is suffering, he can't be held.  In fact, he can barely be touched.  It hurts so much because I just want to hold him into the wee hours of the night.  The hugs this morning made my heart sing! 

Enjoy this picture of Ty with his chocolate turkey that Nana gave him.  See the smile?!  He is doing well!


Thanks to all of you for reading Ty's blog.  It means so much that you care enough to follow him on this journey of strength and courage.

Tuesday, November 23, 2010

Turkey Day at MSK... but it's okay

Well... we will not be going home on Thursday, but it's okay.  Ty had some setbacks today, including head pain and a scary episode where his heartrate skyrocketed.  My poor baby just can't catch a break.

We spoke to neurosurgery and decided to hold off on the surgery that was originally planned for tomorrow.  Not because of what happened today but because the neuro team remains baffled by the amount of CSF fluid that is draining.  It continues to decrease, and it is at a level now that is practically insignificant.  Yet, he does not have an increase in intra-cranial pressure.  These two things alone would lead them to deduce that Ty does not require a shunt.  But, as I explained the other day, the enlarged ventricles that show on his CT are still a big concern.  We want to give Ty a bit more time to see if a slower weening process might help his body to learn to reabsorb CSF fluid without straining the ventricles.  We are going to "experiment" over the next couple of days and if it doesn't work he will have surgery on Monday.  If it weren't for the holiday weekend it would be as early as Friday, but our surgeon won't be here. 

We won't see our family on Thursday, but Gavin is going to come spend the day with us at the hospital on Friday and that will be such a great day.  We are really looking forward to it.  Thanksgiving isn't a holiday that Ty really understands, so he won't miss it.  And Lou and I are actually looking forward to a quiet day together, just us and Ty, with minimal interruptions from the hospital staff.  We are going to just enjoy each other for one whole, quiet day. 

Monday, November 22, 2010

Ty's Turnaround Day - FINALLY!

Ty was awake from 9AM until 5PM today.  He was happy the entire time, and he didn't have a single headache that required additional morphine since 2AM.  What a breakthrough!   I enjoyed him so much today.  We laid in bed together, I sifted through my magazines while he sifted through his toy catalogs.  We started to cut out pictures of the toys he wants and paste them up for his letter to Santa.  I tried to get a video of him saying how he feels "bedda" but he wouldn't cooperate.  Take my word for it, it is music to the ears... and so adorable in his little voice.

So... the good news is, we are probably going to get out of here on Thanksgiving day!  If that works out, I will be the most thankful of all, that's for sure.  Thanks so much for all of your prayers.  The bad news is that he still needs surgery to replace his internal shunt, but maybe that's a blessing in disguise.  Surgery is scheduled for Wednesday and if all goes smoothly we can hit the road the next day.  We are most likely on track to start chemo on Monday, which means all of this pain and suffering really isn't going to end up delaying treatment much.  Again, thank you for your prayers!

Sunday, November 21, 2010

Night #11 in the hopsital and counting

Well... it doesn't look like we will be getting out of here for Thanksgiving, but there is still a small chance, and I'm holding onto that until we meet with the neurosurgeon tomorrow. 

As of this morning, Ty was showing great signs that he wouldn't require a new shunt.  The neurosurgury team was so enthusiastic about how little CSF has been draining since they externalized the shunt, that we were even talking about the possibility of removing the hardware and going home before Thanksgiving.  Then they did a CT scan and came back with the opposite conclusion.  His ventricles, which channel the fluid in his head, were swelled up to about 4X the size since his last CT scan.  This shows that the fluid is indeed building up and that he does require another surgery to have a new shunt placed. 

The worst part about all if this is that the original shunt hasn't grown back any signs of infection on the cultures, which means that the entire process of removing it was futile.  No one can explain his headaches, either.  We need Dr. House to figure this out for us, because it's really making me crazy.  I just continue to chalk it up to tumor destruction, although the MRI doesn't show any significant inflamation or pressure on the brainstem. 

Who knows.  I just know that I want him to feel better, I want him to be able to get out of bed, I want him to play and I want to see Gavin more than you can imagine.  That is what has been hurting Lou and I the most this past week.  We miss our baby GaGa so much.  And we miss having a normal day: cheerios all over the floor, off to work, dinner, bath, bed. 


Saturday, November 20, 2010

Another quiet day

There is still very little to report.  Ty has been sleeping all day long, waking up occasionally.  But he is in pain when he is awake so it's better that he just continues to sleep it off.  Of course, we know what this means.... he will probably start to feel good around 1AM and want to watch movies, eat animal crackers, and he will say "don't sweep Mommy!" if I try to close my eyes.  :)  We have been down this road before. 


This picture was taken at home a couple of weeks ago.  Ty is showing off a bracelet and necklace that he made a few months ago when he was still in preschool.  He misses his friends and his teachers from Kids by the Sea very much.  Hugs and kisses to everyone from Ty. 

Friday, November 19, 2010

Let's make Ty famous!

We don't have much to report from the hospital today.  The testing of his intracranial pressure has been postponed until after the weekend because he drained a significant amount of CSF fluid overnight and his neuro team wants to err on the side of caution.

In the meantime, please share Ty's video with everyone you know.  We posted it a few days ago, and we hope you will share among your friends and family.  We want everyone to follow Ty's story, and we plan on making more compilations as his journey continues.  We want Ty to have as many supporters as we can get because the power of prayer and positivity is unmeasurable.  Thanks!

Ty Fights Cancer

Thursday, November 18, 2010

Successful surgery today

After a completely sleepless night last night (Ty maybe slept between 4:30 and 6:00AM), we finally took Ty to the OR around noon today.  Needless to say, it's been a looooong day. 

The procedure to externalize his shunt was successful and Ty has been sleeping it off.  It was expected to take couple of hours so Lou and I were able to get outside and grab some lunch together!  Tacos and beer.  I can't find the right words to express the guilt we shared knowing that we were, in some ways, looking forward to surgery so we could get away for an hour and go outside.  It's embarrassing to even write those words, but it's true.  The only times during our multiple hospital stays that we are ever able to get out together is when Ty is in surgery (and, of course, when we go home sweet home). 

Sometimes it's hard to fathom that our life has really come to this.  That giving him a kiss, and telling him every thing is going to be okay while he stares into our eyes with horror has become par for the course as we watch him being wheeled away by strangers down a long, scary corridor.  That we see our 18 month old baby Gavin by Skype every once in a while, and in person every week or two.  That we sit in a cramped, dark hospital room for days on end, eating from vending machines and going for days without taking a single step outside.  That on some nights, we have to listen to Ty say he's hungry and beg for snacks for hours on end because he is not allowed to eat for 12 hours before anesthesia.  I'm only sharing this perspective because I'm very, very tired today and not feeling as positive as I usually do.  Lou and I were just talking about how it is very hard having a child with cancer (of course), watching him suffer and knowing that things may not turn out well... but what's equally hard on a day-to-day basis is living with the lifestyle changes to our non-existent daily routine that we have experienced.  Like, showering in a bathroom shared by 30 people, using up my 10th travel size soap and shampoo because each time we're hoping for a short-stay. 

Tomorrow, the neurosurgery team will be testing his intracranial pressure to see if he will require another VP shunt.  Please pray that he is NOT shunt dependent.  If all goes in our favor, we will be able to clamp the shunt that is now externalized, his body will prove to be able to reabsorb the CSF fluid without increased pressure, and we will be able to remove the new hardware over the next couple of days.  If it turns out that he needs another shunt, we will be in the hospital for a minimum of another 14 days, and his treatment with be delayed until all of this nonsense with the shunt and the CSF infection is resolved.  We are on a winning streak with the chemo right now, and we don't want to slow down for even a second.  We want to go, go, go!!!  THANK YOU for your thoughts and prayers. 

Wednesday, November 17, 2010

More setbacks among some really good news!

The good news first or the bad news?  The good news?  The MRI report shows significant reduction in the tumor size, so the chemotherapy is still working!!!!!  Not just keeping the tumor under control, but shrinking it.  We are so optimistic, but also very anxious because this type of tumor has a bad reputation for responding well to chemotherapy, and then becoming resistant further down the road.  So, we hope to get a good enough margin after the third or fourth cycle so we can plan for radiation as soon as possible.  And our doctors think that we are well on our way!

The bad news.  The bad news is just so hard to share in detail because I don't even want to talk about it.  Ty is suffering through another bout of meningitis, and it's just so unfair.  The pain he is experiencing is unbearable to watch.  He is running high fevers, he is sweating profusely, he is terrified of moving even an inch because of how much it hurts, and he is often nauseous from the head pain.  Tomorrow he is having surgery to remove his shunt (which is now undoubtedly infected) and we hope that will help reduce some of the pressure he is experiencing.  He also had a procedure done last night to externalize the bottom portion of the shunt.  Lou and I were in the room to help Ty through it because he was concious with a local anethetic, but you know how it goes with Ty... what is supposed to be a quick and simple task turned into an hour-long, painstaking event where the surgeon was about ready to give up -- but thankfully he didn't and was ultimately successful.  And, on that same note (you know how it goes with Ty), he was amazing.  I could never be so brave as my three year old son.  Lou was incredible, too.  He kneeled by Ty the entire time, talking him through it every step of the way.

I have learned that things change rapidly, and we can never "plan" for anything or know what to expect ahead.  There are many twists and turns that we have no control over, but this little boy is rolling with the punches.  In fact, my doctor today reminded me of how my husband and I came to Sloan Kettering with the attitude of... "we want to be as aggressive as we can be... we're not messing around..." and he said that the chemotherapy regimen that Ty is on is much stronger than what any adult would be able to tolerate.  I didn't know that until tonight.  He said a grown man would never be able to handle the side effects.  That just confirms what we've been saying all along, that Ty has amazing strength and that he is a true fighter.

Monday, November 15, 2010

Peace and Quiet (sort of)

After a long day with a lot of whining on Ty's part, he is finally sleeping peacefully and without an incident of pain for the past four hours or so.  I feel so relieved, I can finally relax a bit, sort of.  The "sort of" is because we are sharing a room with another 3 year old who just woke up after a quiet, sleepy afternoon on her part and she sounds like Ty did all day long -- whining and yelling :)  They are taking turns.

I always prefer to share a room with another 3 year old, because it makes me feel better about my little Ty-rant's behavior.  Whenever Ty shares with an older kid I feel so bad because I can only imagine how awful it must be to be super sick and trying to get some sleep next to my 3 year old who is up all night making demands.  At least when there are two of them together, as parents we can give each other that look that says... "I know." 

Ty's white blood cell counts are on the up and up.  They took him off his neutropenic diet today, and if he can last for 24 hours without a fever we can go home (although, that's not looking very promising just yet).  Tomorrow is bound to be better. 

Sunday, November 14, 2010

Thank you

Lou and I would like to extend our most sincere thanks to everyone who attanded the event at The Public House last night.  And, a special thank you to Charlie for organizing everything, and to all those who donated items for the silent auction.  Your thoughtfulness and your generosity moves us to tears.  I wish I could have been there more than you know.  I miss you all so much.

Ty is doing okay, but not great.  He has had a lot of significant head pain today, but his shunt tap showed no signs of intracranial bleeding this time around, and no signs of infection on the cultures that were drawn (at least, not yet).  These headaches may end up being par for the course, which is a shame, but better than repeat bouts of meningitis or bleeding.  We'll see. 

He is hooked up to a constant morphine drip again, and sometimes he requires additional medication when it gets bad, but his incidents of pain have been isolated and he is otherwise feeling good.  He is still eating well, doing arts and crafts, watching movies, and being funny.  In fact, he interrupted the doctors today to say "Muze me" (excuse me).  The first time we ignored him, so he said it louder... "MUZE ME".  We stopped talking and I asked, "what is it?"  He said "I fart" and gave us all a big smile.  He is a character.   

Thanks again for keeping tabs on our little fighter.  Your loving support keeps us strong.

Saturday, November 13, 2010

Missing everyone tonight

My cousins Chris and Susan came to visit today.  They drove all the way from New Hampshire and Maine to support Ty, and I can't tell you how great it was to see them!  I am truly touched.  When they got to the hospital, Ty had just started feeling better after a severe headache episode.  I was so happy that he was doing okay because I wanted to spend some time with them, but of course we got whisked away for a CT scan right in the midst of their visit so it was cut short.  Regardless, Ty is still asking about them and playing with the toy dinosaurs they brought... it really brightened our day.   Thank you Chris and Sue!!

Uncle Harry and Aunt Theresa also stopped by and Uncle Harry decorated the wall in his room with a picture of the one and only Rocky Balboa.  Ty thinks it is soo cool.  He really is surrounded by so much love and support, he is one lucky little guy.

I was really hoping to get out tonight to see everyone who is coming out for the benefit in NYC, but Ty has taken a downturn so I had to stay with him here at the hospital.  He has been having bad headaches more and more frequently, and I want to be here for when that happens.  It's not fair that a little 3 year old boy should have so much pain.  I feel so helpless, but at least I can hold his hands and whisper in his ear how much I love him until he feels better.  I know that Lou will represent us well at the benefit :)  To those of you attending tonight, we love you to pieces and we can't thank you enough. 

Ty made Lou and I so proud today during his CT scan.  When he learned he was getting a scan, he got very fearful that it would require a needle (which it doesn't).  He was so scared, he asked me to cover up his hands so the doctors wouldn't be able to pull up his sleeves to give him any shots.  I put socks on his hands.  Then, Lou explained to him that he had to hold very still during the CT scan, and we never thought he would do it.  He has always been under anesthesia any other time, but this was an emergency because of the headache he had this afternoon and the docs wanted to get him in there ASAP to rule out any dangerous intracranial bleeds.  We expected him to totally freak out once he was placed on the table and under that huge machine - but he didn't!  He barely even cried!  He held still for the duration of the scan, and he amazed all of the doctors with how well he understood and adhered to their instructions. 

Afterward I was so upset with the neuro team because they decided to tap his VP shunt to get a sample of CSF fluid for cultures.  I understand being cautious and ruling out the possibility of another CSF infection or shunt infection, but I just wish it could have waited because as far as Ty understood, he thought that if he held still for the CT scan he wouldn't get any needles.  Then an hour later, in walks the doctor with a needle to poke through his scalp, followed by his daily G-shot to boost his white blood cells :(  I hate this so much. Ty is my hero. 

It's been an exhausting day.  For everyone who went to the Public House, I hope you had a drink for me!  I am throwing them back with you all in spirit :) 

Friday, November 12, 2010

TY FIGHTS CANCER - The first video compilation of our little fighter



Please enjoy this short video that we pulled together with the help of our cousins Pete and Debbie at DV Depot, and their creative video editor, Nayim Saati.  Ty has watched it over a dozen times and he just loves it.  He is a HAM, and his face lights up whenever I encourage him to show it to any of the hospital staffers! We are still in the hospital, but he is in pretty good spirits, thank goodness!  We expect to be here for as long as he is running a fever, so who knows what that means.  Fingers crossed that we get to go home fairly soon.

Thursday, November 11, 2010

Exhausted in the ER

Awww, poor Ty.  He had his first episode of severe head pain just after dinner tonight, and it was so alarming we rushed him off to urgent care (grandma came over to watch Gavin).  We gave him some heavy duty painkillers beforehand, and now he is doing just fine - no worries.  Unfortunately, though, he is running a low fever and we are being admitted for the next couple of days.  We will be here for as long as he runs a fever.  He was doing so well!  I really thought we might get through this cycle without having to stay overnight.  I am just hoping that the pain he had was an isolated incident and that he won't have to suffer from any more headaches any time soon.  It's just not fair. 

Here we are, all three of us with bloodshot eyes, waiting to get checked into our room which we are told won't be until after 1AM.  We got here at 9.  Argh!

Lou and I were just talking yesterday about how nice it is to have our family back.  We had Gavin home with us for such a nice long stretch, it's sad to think that we are back in the hospital overnight again.  Hopefully this will be a short-lived stay, and Gavin won't even notice we're gone.  Here's a recent picture of the little guy who is, by the way, getting HUGE!

Wednesday, November 10, 2010

Neutropenic but still home with us

Ty's bloodcounts are low.  He is neutropenic which means he has no white blood cells and we have to be very, very careful with him.  Not so easy during cold and flu season when you have a little brother who is always full of boogies, but we are managing okay :)  We have to essentially treat him like a newborn because it is very dangerous if he gets sick. 

He hasn't needed a transfusion yet, which is great news and a huge surprise.  Last time he was already running fevers, having daily transfusions and suffering from headpain at this point in the cycle.  He's doing so much better this time around and we pray this trend continues. The doctors suspect he will require platelets and red blood cells on Friday, so we will be back at the hospital to do that in a couple of days.  All in all, Ty is doing awesome.  He has been such a sport about it, and he just loves being home.  THis is the longest stretch in which we have all been home since August 8th.  I even went into the office today!!  It was so great to put on work clothes and high heels.  It felt soooo normal.  Lou and I are cherishing every moment, however short-lived this normal time at home it may be. 

We are so blessed and lucky to have such an incredible support network.  Thank you for following us in this journey.  We look forward to sharing this with you until the day we can put this nightmare behind us.  And, when that day comes, we look forward to paying it forward for the rest of our lives.  This experience has changed us forever, in a very good way.  THANK YOU!

Tuesday, November 9, 2010

Fingers crossed for a good visit to the clinic tomorrow

Ty has an clinic appointment first thing tomorrow, and we are looking forward to receiving positive news from his oncology team.  Of course, they won't know how effective the chemo has been as far as diminishing the tumor is concerned, but we are so happy that he hasn't been running a fever yet and that he hasn't been suffering from any severe head pain since we started the second cycle.  Hopefully, this is a sign of what we can expect moving forward with his treatment plan. 

Ty has been home from the hospital for 11 days and he has been "tubie free" for 5 days (no needles in his mediport).  He took a couple of fully submerged baths for the first time since August because we didn't have to worry about getting all of his "hardware" and bandages wet.  Although he was very apprehensive about getting in the tub, I can only imagine how good it must feel for him to get all nice and clean in a warm tubby.  Snuggling him in his towels and smelling his super clean head is just heavenly :)

We look forward to updating you after our appointment tomorrow.  In the meantime, enjoy this funny little snippet from a couple of months ago.  I just love Ty's face when he realizes he's on video, he slows down and looks over like... "I don't care, I'm not going to smile..."  :)

Monday, November 8, 2010

How cute

Ty is still feeling pretty good.  He got his bloodwork done today and although his counts are getting low, he doesn't need any transfusions just yet and he is still feeling really good.  Today Ty asked me why people have been giving him presents, and I told him that it's because a lot of people know about his cancer, and they know it hurts sometimes, and they want him to feel better.  Later today, he asked me to tell everyone about the needle he got this morning when they did his bloodwork because it "weelly hurt".  I told him okay, that I would post it to his website so everyone could read about it.  Then he paused for a minute, and said... "Mommy, I want you to also tell everyone who got me presents 'thank you.'"  So... TANK YOU.  XOXO, love Ty.


Ty was just potty trained this summer right before we first checked into the hospital.  Now he is lazy and hooked on using a pee-pee can instead of going on the potty.  In an effort to break the habit, I bought him a new potty seat, which the goofball proceeded to put right on his head.  Always a funny guy.


Sunday, November 7, 2010

Happy birthday to Lou!

We had a great weekend.  Yesterday was Lou's birthday, so Ty was very excited to pick out a card and a cake beforehand.  Card had superheroes all over it, the cake had strawberries on it.  He loved singing happy birthday so much, we did it again tonight at Grandma's with the half of cake that was leftover. 

Happy birthday to Lou, who has been my rock through all of this.  He was able to enjoy a fun night out in Long Beach with his best friends for his birthday.  I was so happy he was able to get out and celebrate after we had such a nice night out on my birthday just a month ago.  I was afraid he wouldn't be able to because what if something happened where I need to take Ty to the hospital, but Dawn offered to sleep over and we had a great night, too, just chatting away until the late hours. 

Ty is still feeling really, really good.  He is so smiley and he has fun throughout the day that it makes me forget there is anything wrong with him.  I can't tell you how amazing it is to feel normal at times throughout the day, even if just for a few minutes.  It's just round 2 so we still have a long road ahead -- Ty is scheduled for 7 cycles of chemotherapy with 6 weeks of radiation at the halfway point -- but we'll take the good with the bad.  And these past few days have been SOOOO good.  He is getting off the couch and walking across the room, he learned to play a few games that he loves (he is crazy good at Hungry Hungry Hippos), and he is cracking jokes left and right which is just so funny.  For example, we ate dinner at grandma's house tonight and she made carrots.  I jokingly said to Ty "I can't be-LIEVE Grandma thinks you're gonna eat CARROTS!!"  because he hates carrots.  He giggled... then hours later at home he called out to me laughing hysterically and he said... "Mommy!!  I can't believe Gamaw thought I was gunna eat CAWITS!" 

Friday, November 5, 2010

What a wonderful day!

Ty had an amazing day.  It was as if he didn't just undergo treatment at all. Now, I've been warned by others who have been through this that some individuals tend to feel really great just before they get slammed, and I'm prepared for that -- we just wanted to enjoy his great mood to the fullest today, and we did. 

The most exciting thing we accomplished today was taking him off his backpack of fluids, and having Mommy remove his "tubies" from the comfort of his own home.  Don't get me wrong, there was nothing comfortable about the process, he was totally freaking out when I had to peel the huge bandages and pull out to gi-normous needles from his port, but after we were finished he told me that I do it better than the hospital.  Later today when he had to get his "G-shot" (a daily shot to help boost his white blood cell counts) he completely refused the numbing cream beforehand.  He is one tough cookie.  I had Lou give me a shot first, so he could see that it wasn't too painful.  After he took his own shot like a champ, he was so good he may as well have asked, "what else you got?" 

The cutest thing he said today was about GaGa.  He told me that he wanted to talk to Gavin and tell him about the hospital.  When I asked him what he wanted to tell Gavin about it, he said he wanted GaGa to know that it doesn't hurt too bad.  How sweet!  And, he wants Gavin to come with him sometimes.  Ha!  Easier said than done :)  He tells me that Gavin wishes he had tubies because they are so cool :)

Thursday, November 4, 2010

A restful day

All things considered, today was a pretty uneventful day.  Ty is totally pooped and he slept a lot, but otherwise no complaints.  Yes, he is still getting sick sometimes, but we are trying to stay ahead of it with his anti-nausea meds and he's doing pretty good.  No appetite today, and he's already got some sores in his mouth :( but he doesn't complain about a thing.  I love him so much!!  We all do :)

Here is a cute, very short video from when we left the hospital after his first round of chemo.


Wednesday, November 3, 2010

Ty did great!

Chemo is complete.  We have to come back for an appointment tomorrow to check his fluids and take some blood cultures, but he has otherwise completed Round 2 and he did great.  I just feel bad because he had a pretty rough morning on our way in. We left the house at 6:15AM and the poor baby was sick from 6:30 until we arrived at 7:30.  Lesson learned!  I will never take him in the car like that without giving him anti-nausea meds in advance.  I felt SO bad!  I did give him some medication in the middle of the night, just to be ahead of the game, but it was too soon to give him another dose before getting in the car.  Next time I will time that better :)

Ty ran a low fever earlier in the day, but since noon he has been feeling really good.  Playing games, visiting the toy room, watching movies, and he still has a pretty decent appetite.  I am very impressed.

Ty made a couple of fun Fall crafts with Nana and Aunt Debi today, and he just told me that he wants to give them to his little brother.  He really is so sweet.  We hope to get home tonight before Gavin is in bed tonight so we can give them to him (although they aren't really appropriate for an 18 month old!).  Last night was a late night and Ty didn't get to see him all day.   More tomorrow...

Tuesday, November 2, 2010

A long day at MSK!

Wow.  We checked into the pediatric day hospital at 7:30AM and we won't be leaving until 7:30PM.  Ty gets some very strong doses throughout the day (three different types of chemo) and then a lot of hydration and co-medication to treat the potential side effects of the chemo.  He has been a real trooper all day.  Some whines here and there that he wants to go home, but only when he's tired.  Otherwise he's eating like a champ in between small bouts of nausea, and he's generally happy.  I love that he is getting more comfortable with these processes and with the hospital staff. 

I couldn't get a very good picture of him, but here he is being a champ. Back tomorrow for another long day.  Hopefully we will finish up early on Thursday. 


Monday, November 1, 2010

Anxious for tomorrow

Ty woke up at 3AM last night, and we've been up with him ever since.  In fact, he's still wide awake, watching a movie with Lou and I.  I can barely keep my eyes open, and he's asking me to cook him up some sausage and peppers.  It's true... and it's 9PM. 

Today was a very emotionally charged day for Lou and I.  I'm sure it was fueled by the fact that we aren't getting enough sleep, we are under a lot of stress, we are apprehensive about starting another round of chemo and, of course, we are simply worried sick about Ty.  I'm sure all will go well tomorrow.  I'm so happy about the fact that we are trying to do this outpatient.  I think Ty is going to do better this way.  Thank you, everyone, for your unending love and support.