Monday, February 28, 2011

TICK TOCK

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 begin ASAP. 

In the meantime, Ty is surrounded with love.  He returned from the hospital on Friday to a package that included a beautiful handknitted elephant that Ty named "Humphrey" and he received a bunch of new arts and crafts from friends over the weekend and in another fun care package he today.  Here he has a cold pack on his head and is surrounded by just a few of them.  Today was a terrible day, he slept most of the time and had a lot of headaches, but when Lou returned home from work and brought in his package full of goodies, he asked to color in one of his crafts... something he hasn't had the energy to do in weeks.  That one will definitely be going in Daddy's keepsake box.  Iwas very special seeing him with a marker in his hands again and the final product was pretty good, considering.  Slowly he will continue to turn around, I know he will. 


God bless and good night. 

Sunday, February 27, 2011

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 intended to relieve that pressure - join the club.  I'm told the shunt is working properly, but That the receptors controling his intracranial pressure are located on his brainstem and doing wacky things. The pressure waves do trigger the shunt to drain, but the reaction isn't always quick enough to avoid the resulting pain and nausea.  Who knows, I get so much thrown at me during these discussions (it's a stomach bug... it's from the surgery... he's dehydrated... he's doing great... he shouldn't be so tired... it's fine if he sleeps all day...) I don't know what to believe anymore.  But I do know he is one tough little kid and I do know that his doctors are doing everything they can.

I just sent off the last package to Boston to see if Ty is a candidate for Proton beam therapy. you wouldnt believe all of the records I had to pull together and what a fiasco it was.  I hope we will know by Tuesday whether we are going to Boston or staying in New York for therapy, we'll see.  We are meeting with the pediatric radio-oncologist at Sloan early next week in order to move forward with a plan on next steps for radiation and corresponding chemotherapy in New York in case it turns out that Proton Beam isn't an option (based on the location of his tumor).  Bottom line either way, we are preparing to begin radiation in as little as two weeks.  We want to take advantage of the fact that there is minimal residual tumor post-surgery and we don't want to give this disgusting disease any time to grow again.  Our oncologist used a great analogy of the cancer being a weed, and we are ready to go after every last bit of it with everything weve got.

Thanks for all of your support and love.  Hope you enjoy the rest of the weekend :)

Thursday, February 24, 2011

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 amazing package filled with Get Well wishes from Pawling Elementary School.  What a treat it was.  Thank you so much to all of the boys and girls in Kindergarten through 3rd grade who made a card for Ty.  Especially Mrs. Gallagher's, Mrs. Maloney's and Mrs Divitto's classes.  Ty loved them and we enjoyed reading them together.  In case you can't make it out below, one of our favorites reads: Dear Ty. I'm happy the surgery is over.  I'm glad you're okay.  Now that you're okay, I hope you feel as good as a monkey eating a billion bananas.  Sincerely, Nick

It doesn't get more adorable than that.

I also discovered a local pharmacy, Resolution Rx (next to Hannfords) and the pharmacist there, Anthony, has gone completely out of his way to help out.  His is the only store that carries some specialized products that meet Ty's needs.  He also worked with my doctors to come up with a solution to his nausea (he packaged meltaway tabs that I can simply put on his tongue for faster relief - no one had ever suggested that before), and he has given me a level of personal assistance that I would never, ever get from a large pharmacy like a Target or CVS.  He delivered medication to my home without payment and without my insurance.  He is a gem and I am grateful.

What are you looking at?
This one goes out to Sissy and Colleen. 
Read the bib.  Yes, that's Gavin with a piece of pear in his nose.  Yes, he ate it soon afterward.  What a clown he is :)  XOXO  More updates after Ty's appointments tomorrow. 

Wednesday, February 23, 2011

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 what we've experienced since getting home from the hospital last week. Physically, Ty is pretty weak, suffering from head pain and vomiting frequently. Mentally, he has been getting sad, but it passes quickly and he is in really good spirits the majority of the time. He is happy to be home... We all are.

Next visit to the doctors is scheduled for Friday, so we plan to just lay low until then. Hugs and kisses to all from Ty.

Tuesday, February 22, 2011

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't even know if Ty is a candidate, but we are hoping it will be an option because proton beam is specifically geared for situations like Ty's where there is a focal tumor in a dangerous place (i.e. sitting on the brainstem).  It would allow us to treat with a much higher dose of radition without the same level of damage to the vital areas of the central nervous system.  If proton beam isn't an option because of the residual tumor that still exists on his brainstem, we will either be following up with an alternative radiation treatment at Sloan Kettering with simultaneous chemotherapy at a lower dose, or we will be taking our chances at another round of high dose chemotherapy in the hopes of shrinking the tumor prior to radiation to reduce the long term side effects and increase the chances of getting to Boston for proton therapy.  No matter what we decide, we will need to give Ty at least another 2 weeks to heal, so we will keep you posted on all of this. 
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In the meantime, Ty says "bye bye" and goodnight with all of his love.  XOXO.  Thank you so much for caring and for keeping tabs on our special boy as he continues to fight this courageous fight.


Sunday, February 20, 2011

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 of his brother, laid down and closed his eyes as if to take a nap with him when Ty first got back the hospital.  That routine got old quick, though, and resulted in Ty yelling and me pulling Gavin off of his brother over and over again throughout the weekend.  Typical brothers.  Gavin likes to grab Ty's hats and run away with them.  Ty does NOT think it is nearly as funny as Gavin does.  Still, we enjoy those very normal moments of annoyance in the household.  Speaking of Gavin, look at the mess he made for his poor Dad this evening. It's hard to make out, but that is a piece of corn on his forehead. Menace!  :)
Ty is amazing.  The picture below was taken only 8 days ago, yet he was sitting up all weekend, telling jokes, smiling a lot and we even made it out to the dollar store and the supermarket today.  Ty did get sick and throw up in the dollar store, but we were prepared and he brushed it off immediately.  He asked for a Ring Pop and we were on our way. 


Last night, Ty allowed me to hold and snuggle him for the first time in weeks.  He is usually too apprehensive about moving his head around and he thinks it will hurt if I hold him, so I know he must be feeling better.  He fell asleep as I cradled him and I just couldn't help but begin weeping and weeping.  The tears just wouldn't stop.  He's grown so much over the last six months (and in so many ways), but his face is the same face I've been staring at for hours on end as he lay in my arms since the day he was born.  He's the most beautiful thing in the world.  Please God, don't ever let my arms be empty. 

Wednesday, February 16, 2011

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 suspected in December.  His critical state just last week forced us into a very high-risk and "heroic" surgery that resulted in a new chance at life for our baby boy...  Amazing.

It really has been a complicated medical case, and Ty's doctor's often shake their head in disbelief or sheer confusion.  I love it and hate it at the same time.  I love to know that he will have this amazing story of survival to tell, obstacle after obstacle... and I love the fact that he is often the topic of so much debate and discussion at tumor board every week.. but, of course I do wish it was an easier path. 

I like to tease his doctors, too, about how I would happily lend them his story of survival someday for a feature in the Memorial Sloan Kettering bulletin or newsletter.  :)

Hugs and kisses for Ty's hospital bed.  HOME TOMORROW!!!

Tuesday, February 15, 2011

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!

Monday, February 14, 2011

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 even home by next Monday.  Fingers and toes and eyes and everything else crossed.

LOVE TO YOU ALL.  <3 XOXOXOXOXOXOXOXOXOXO <3

Sunday, February 13, 2011

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 watched the whole thing through the window (as any mother would) and it was really quite quick.  He did great.  His throat is sore and scratchy, but he is talking and really recovering well. 

I don't expect to have any definitive updates on next steps until later this week (i.e. whether or not he will be going straight to Boston for radiation or if we will return to his original chemo regimen for a while), but I do know that his surgical team is eager to give him a new VP shunt no later than Friday and we may even be able to go home soon after that.  For those who are keeping track, this will be his fourth VP shunt. 

It's really too soon to say what's next, but I am hopeful that we will go home soon and get a week or so of quiet time before jumping into the next course of action.  We need Ty back in tip-top shape beforehand.  Just seeing how well he is doing after his craniotomy convinces me that he will continue to win this incredible battle... he's one amazing little man. 

Thursday, February 10, 2011

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 (and if that is even a possibility).  Lots of unknowns, but we are taking this day by day and today we are very relieved.  Our little fighter is amazing.  He is in and out of conciousness right now, and he looks us in the eyes nodding when we tell him how much we love him. 

We look forward to updating you more following a number of post-op imaging and conversations with his various doctors.  Thanks so much for your prayers and keep 'em coming :)

Wednesday, February 9, 2011

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 OR today (he had a minor surgery to remove his VP shunt... again...  in preparation for tomorrow). 

And, here's a shoutout to his brother Gavin.  He climbed on top of Ty and pretended to be sleeping just the other day and I thought it was adorable.  Look at his smile, who does he think he's fooling?  We will miss him so much during this extended hospital stay. 


Please pray for Ty and pray for his surgeons.  Thank you so much for caring.  With love to you all from Ty and the rest of the Campbell's.  XOXO. 

Tuesday, February 8, 2011

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 roadmap indicates what type of chemotherapy will be received, when, for how long, radiation details, timing, etcetera.  I thought this meant we had a plan, and that things would go according to plan.

Prior to Ty's diagnosis, we were a super busy working family.  I was an organized person who liked having control over everything.  I thought I could keep working on a limited basis with sporadic time off for doctors visits and sick weeks during chemo (and I did try to hang in there for quite a while).  I thought we would know what to expect from treatment… so he has surgery, then he starts his first round of chemo in September, round 2 in October, round 3 in November, then we would be off to Boston for radiation December - January, followed by a couple of low dose rounds of chemo before we could wrap it up and put all of this behind us.  Anyone who has been following his story knows that not a single thing on Ty's "roadmap" went as planned.  With every step forward, we faced two steps backward.    Despite this, he has also beaten so many odds.  He has completely surprised and baffled his doctors on many levels.  For this reason, we are going to keep fighting.

As a result of countless setbacks, Ty has not been treated with chemo since early November.  Because of these delays in treatment, Ty's original tumor site has recently experienced a lot of activity, meaning there has been growth in addition to dying tissue in a place where there is simply no room for the resulting changes in the size and shape of the tumor.  Chemo has caused spontaneous hemorrhaging and when the tumor site bleeds it causes significant pressure on Ty's brainstem.  This has led his doctors to decide that continuing with chemotherapy is no longer an option.  It's just too dangerous.  So, we are going to try to remove the rest of the tumor surgically so we can still get him to radiation.  It is our only chance for a cure… and we are told it is risky and it is a long shot.  We are scared beyond words, but if we do nothing at all the loss is just as great, so how could we not go ahead with this incredible leap of faith? 

I hope that provides some background as to how far we have come, and why we are now faced with a plan that requires us to essentially start over.  Please keep the prayers coming. Ty is such a trooper, and I have a feeling that he will continue to amaze us all. 

Throughout the course of Ty's painful journey, our amazing friends and family have been so supportive.  To every single person that reads this blog, checks up on Ty via facebook, reaches out via email, or posts comments - whether we have met you in person or not - we are tremendously grateful.  I say this all the time and I mean it… we want as many people as possible to be touched by Ty's story.  Thank you for caring, for walking alongside us down this difficult path, and thank you for sending your positive thoughts, your prayers, your energy and your love.  XOXO to all. 

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 anesthesia.  As a result, our doctors at Sloan Kettering told us that treatment is no longer an option and that we reached the end of the road.  We discussed, in detail, taking him home and what we can expect over the course of the next few days/weeks.  Obviously, no words can describe what we felt. 

Then, the neurosurgery team at Cornell/New York Presbyterian presented us with a surgical option, and  Lou and I were faced with a decision that no parent should ever have to face.  On one hand, there is hope… there is a chance.  On the other hand, it is a long shot and we don't want to force any additional pain and suffering on our baby boy.  When is enough, enough? 

So, the decision was whether we take him home for what is expected to be a relatively pain free and peaceful passing, or do we keep fighting knowing that any number of things could go wrong at any point (something we are all too familiar with).  It was simply too much to take in yesterday so we told everyone that we needed to sleep on it, to talk it over amongst ourselves and to come to a decision in the morning.  We are currently in the Pediatric ICU at New York Presbyterian hospital.

Less than an hour ago, I was sleeping next to Ty and he started to moan and stir.  I asked him if he was awake, and he clearly said "yeah".  He started crying and I asked him if he had pain and he clearly answered "yes," once more.  I hit the ceiling in excitement/panic, called his nurse for some pain meds, and began asking him questions.  He was responsive!  He was talking to me!  He cracked a smile!

After a while, Lou and I began to explain to Ty that we had a big decision to make.  We needed to know if he still wanted to beat the cancer up.  We told him that we love him and we know how hard he's been fighting.  We know he's been in a lot of pain, and that if we keep fighting it would mean more pain and more time in the hospital.  Then we asked him if we should keep fighting and Ty said "yes."  We asked him if he wants to beat the cancer up and he said "yes."

So, we are going to keep fighting the fight… at least for now.  Ty is going to have another tumor resection on Thursday with the goal of going straight to Boston for proton beam radiation treatment afterward.  Obviously, we don't know how this will turn out, but we know we have an excellent team of confident surgeons, and we know that God will continue to guide us as he has done every step of the way so far.  Of course, we are terrified beyond words. 

I just overheard Lou talking with Ty and asking him if he remembers anything about yesterday.  He asked if he remembered seeing all of his grandparents in the room or holding still when he got his "picture taken."  Ty said "no," and that is good.  I am relieved to know that days like this will not haunt him as they do me.  He deserves to be happy and think three-year old thoughts, like what's on the next page of his favorite book that Daddy is reading him. 

Sunday, February 6, 2011

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 upset seeing my baby like this and so scared of the unknown that lies ahead that I have been reluctant to face this reality.  At least while we are home I can be positive and hope that he improves with each passing day.  Here at the hospital I know he will be faced with a number of blood draws, imaging under anesthesia, endless exams from countless doctors, flashlights in the eyes every 20 minutes… followed by the serious discussions with his doctors about risk versus benefits and what our next steps should be.

Will Ty be in surgery a couple of days from now?  Maybe.  Will Ty be in the hospital for weeks?  Months?  Will they advise us to do nothing at all at this point??  I can't bear the thought. 

Ty showed us that he was facing similar anxiety over coming back to the hospital.  He kept saying he didn't have to go the hospital, that he was feeling better, even though he could barely keep his eyes open or get the words out.  When we pulled up to the hospital he said he wants to watch a movie when we get home.  Lou and I could barely hold it together to tell him that we were going to have to stay over for a few nights.   

Ty's medical condition is still so complicated.  His new shunt is said to be working properly, but his CT scan from this evening shows that his ventricles are still very enlarged - in fact slightly larger than his last scan.  That means he is still suffering from hydrocephalus.  His scan also shows that his tumor is - for the most part - stable, which doesn't explain why his condition would be worsening.  Lastly, they drew some CSF fluid for cultures and we are told that the stain is already coming back "gram positive".  This means he likely has another infection in his cerebral spinal fluid.  Unbelievable.  Really.  He's been on antibiotics since January 18th, how does that even happen!!  My poor baby.  He is so amazing, I don't think I would be able to do what he does and still have a smile on my face like he does. 

At least he is sleeping peacefully.  I wish Lou and I could do the same.  He is an angel.

Tuesday, February 1, 2011

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 clinically since we returned home. That would just complicate our medical decisions with more ambiguity. We were hoping for faster improvements on many levels. The good news is, his pain has decreased significantly. FINALLY! The kid gets some sort of a break.

So, until next week, we are very unclear on next steps, timing, etc. It is completely nerve racking. Thank you for your continued prayers and positivity. Please keep it coming :)