Monday, April 30, 2012

I shall not want

Tonight I was staring at Ty's sleeping face and thinking about how lucky I am to have him.  And, how much I want him to enjoy life.  It occurred to me how much fun I've had, always, and how incredibly blessed I've always been.  I thought about how I took everything for granted.  I have no regrets for carelessly enjoying life.  It's more like I reflect with a wry smile and find gratitude for all the fun I've had in my previous life.  And all of the fun I intend on having in the (near!) future.   

I always knew I was lucky to have my loving family and friends.  To have my health, my education, my opportunities.  But still, I always wanted more.  I worked like crazy.  I stressed over money.  I wanted more time to myself.  I wished for everything in life to be just a little easier. 

It still amazes me that it wasn't until my son got cancer that I stopped wanting.  That I understood Psalm 23.  That I even read Psalm 23 with understanding and depth. 

Of course I want Ty to be cured.  But I accept that aside from giving him the best care I know how, what the future holds for him is out of my hands. 
Tonight I am very worried about him.  His speech is so slurred that I had a very hard time understanding him all day.  I can't be sure if it is actually worse, or if I'm noticing it more now that he can speak a bit louder and more frequently. He is sweating a lot.  He doesn't have much of an appetite.  His physical improvement is so slow and so minimal.  However, if I look back to three weeks ago - he is certainly doing much better in every way. 

We are all set for discharge on Friday.  Just three more painful nights after tonight!  Yippeeeee!  This has been one of our longest and worst stretches inpatient.  It won't be until we are home for a few days that we will really know how Ty is doing.  It takes such a toll on Ty on so many levels - I expect to see his greatest improvements once he is in the comfort of his own home again.  Let the countdown begin!

Goodnight everyone.  As always, thank you so much for loving Ty and encouraging us to keep fightng.  Never stop believing!  XOXO. 

Sunday, April 29, 2012

Weekend in Wolfeboro

Gavin and I had a wonderful weekend together while Lou was with Ty at the hospital.  We went for a road trip to New Hampshire, and it couldn't have been a more beautiful weekend for it.  I'm so, so glad that I went.  I was very unsure if I was up for the trip because I've been so physically exhausted, but mentally it was really good for me to spend quality time with my cousins who I haven't seen in so long.  I had a great time, and I left with the most beautiful, sentimental gift from my cousin Susan.  It's a prayer card that has a very long, very special history and I will cherish it.

My cousins grew up in Wolfeboro, New Hampshire and I have so many fun memories of visiting when we were kids.  Being back there this weekend and being surrounded by all of our beautiful children reminded me just how much fun it was being a kid... dirt under my fingernails, scraped knees, messy hair and belly laughs over the silliest things.  I smiled a lot over the past two days :)  I want so much for Ty to have that kind of fun, too. 

My Grandma Ruth Zimba celebrated her 100th birthday today (my Dad's mom).  She still lives in NH and my father planned a nice party for her.  Some of us got together last night for dinner and drinks, we woke up early and went on a nature walk through the same trails we explored when I was a kid, then we all celebrated at a restaurant this afternoon with the whole gang.  Every time I see my family in New Hampshire I remember how much I miss them and wish we could do this more often.  We will!





I spent a lot of time in the car today, but it was worth it.  It was a relaxing ride, really, and me and Gavin had fun together.  I got him home around 8PM and then ran to be with Ty at the hospital.  He was tired when I got here so we said our prayers and he fell fast asleep before we could even finish.  Did I ever tell you that he knows the Our Father by heart?  It is the sweetest thing.  Lou taught him, and every night he begins his prayers by whispering this in our ears.  I was happy that he was still awake so we could snuggle when I arrived.  He always reminds me when it's time to say prayers - he never ever forgets. I missed him so much this weekend and I thought about him non-stop during the ride home. 

It's 10:50PM and as I write this our roommate's aide is snacking on an aromatic, lip-smacking rack of babyback ribs. I have to get out of here, it's grossing me out and making me hungry at the same time :)  He's a perfectly nice person and very respectful of us - he can snack on whatever he wants - it's just hard having roommates over such a long period of time.  Lou feels the same way, we can't take it much longer and we are hoping for a discharge by the end of the week.  It has to work out because we both have our hearts set on being home by Friday.  We just need to arrange for some loaner equipment to come home with us and convince the doctor's that Ty is strong enough to withstand the rigors of a full-day outpatient program.  I totally have a plan and I'll keep you posted. 

XOXO.  Goodnight. 

Thursday, April 26, 2012

Missing home


Medical updates
I wanted to post last night because so much has happened and I had so much on my mind, but Ty said "I want to snuggle" and to my complete surprise fell asleep with him at 9:30!  I woke up to regular hospital stuff throughout the night, but was otherwise too tired to get up and we both slept really well.  So good, in fact, Ty did NOT want to wake up for hyperbaric oxygen therapy today.  He started telling me last night that he doesn't want to go in the rocketship anymore.  That he doesn't want to be in the hospital anymore, either.  It breaks my heart.  But he is improving, and that keeps us going.  We had a similar routine every day with radiation treatment, and that was a lot worse.  We will get through these treatments, too.  He really doesn't mind once he's in the chamber, and the medical team there are very, very good with him.  He is in great hands.

His head pain is really getting better.  Finally.  He was suffering every single day since March 2nd, but I think the last two or three days were virtually free of head pain (aside from minor discomfort).  There is nothing worse than watching him in pain, so this improvement makes all the difference.  At the same time, nothing makes us (Lou and I) stronger than when he is suffering.  Somehow we always muster up the strength to help him through, and that's not because we are amazingly strong - we are just parents and it is a God-given natural instinct that kicks in. 

On Monday, we started chemo again.  So far our little superhero continues to tolerate it very well.  He is on a reduced dose of cyclophosphamide so he shouldn't be too nauseous, he won't lose his hair, and he shouldn't suffer from mouth sores or the countless other side effects.  Still, I worry about the long-term.  Will it stunt his growth again?  Will his teeth continue to break down?  Will the toxins lead to new cancer? (One of the scariest side effects of chemotherapy is that it can cause new types of cancer to form).  I have so much hope for better treatment options in the future.  For cancer to become a chronic illness rather than a terminal one, until it can be cured altogether.  Some day. 
Ty is also on the final week of his steroid taper.  Friday will be his last dose and then he's off of them completely.  Hopefully forever!!!  That would be amazing.  Those adorable chubby cheeks might shrink a little, but he's been eating really well so maybe not!

We were at Sloan Kettering for an Avastin infusion yesterday.  Ty's doctor has raised the dose on his Avastin so we can go every three weeks now, instead of every two.  Next time we go, May 16th, it will be time for Ty's full cranio-spinal MRI as well.  Oh boy.  Nothing conclusive came from the collective minds at Tumor Board yesterday, so we are on the "wait and see" plan.  No one is sure of exactly what happened to Ty in March to cause all of this damage (necrosis, disease, virus, etc.) but at least his oncologist and neurosurgeon are hopeful that we've seen the worst of that episode and Ty is recovering from it.  Since we can't be sure what it is, Lou and I like to think that the sky is the limit and we continue to believe in Ty's full physical recovery.  Five minutes ago I overheard a conversation where a man said "I never gave up hope.  You can't ever give up hope because without that, you would be lost."  How very true. 

Update on emotions
Poor Ty.  All of this back and forth to various hospitals is taking a toll.  In the past year and nine months, Ty rarely complained about being in the hospital.  Never, in fact.  Yesterday, on our way back to Blythedale from our clinic appointment at Sloan Kettering, was the first time it happened.  "I want to see Mely and Ga-Ga."  He said.  It took me a few tries before I understood what he was saying.  He misses Mely, our babysitter, and Gavin very much.  Then he said "I want to go home."  This goes to show you that he is feeling better, because usually Ty says "my head hurts too much to go home."  It was so hard to hear this, and then the repetition started...

"I want to go home!  I want to go home!  I don't want to go back to hop-widdle!  I want to go home!"  He whined about this for an hour on our way back.  It was so hard.  Lou and I debated swinging by the house on the way home, but then how could we ever convince him to go back in the car to return to his room at Blythedale.  It was better to just get him back ASAP.

There are a lot of details that need to be sorted out with regard to arranging for outpatient care before we can leave, but I am going to keep the ball rolling and see if we can accelerate the process.  Even if staying inpatient guarantees him the most rigorous schedule as far as therapy goes, it's not worth the emotional toll it is taking on Ty.  Lou and I are going to work toward discharge, but we don't expect it to be for at least a couple more weeks. 

Speaking of Lou and I, driving to and from Sloan Kettering together yesterday was one of the most quality days we've spent together in weeks.  We caught up on so many things and we finally enjoyed a good chunk of time together, rather than just relieving one another from our "shift" at the hospital.  Of course we wish the circumstances were different, but it was a nice day nonetheless :)

The ACCIDENT
You may have heard that Ty was in a minor car accident.  Don't worry, he's totally fine.  I feel very compelled to share the history leading up to our recent accident in an ambulette, so I apologize in advance for the over-abundance of detail.

Lou and I have had an ongoing debate with Blythedale over transportation.  Last week, the Chief Medical Officer (CMO) overheard a conversation about a family (aka - the Campbell's) who were driving their child - in their own car - back and forth for hyperbaric oxygen therapy (HBO).  I can completely understand why a red flag may have gone up: she didn't know how big Ty was so didn't know whether or not his car seat was safe, and she didn't know where we were going for HBO or why.  Also, she didn't know the Campbell's - yet.  HBO is rumored to treat a wide variety of ailments that have not necessarily been proven, and there is a range of different caliber of machinery/facilities available - some more credible than others. 

When we met with the CMO to discuss the issue, we explained that HBO was recommended by our oncologist at MSKCC because it is proven to be effective against radiation necrosis, that we researched several facilities, and that we chose Phelps because the doctor has a wonderful reputation, the facility is top notch and the medical crew was prepared to treat Ty even if he had a medical crisis while in the chamber.  When she heard the level of research that we did in choosing this therapy, she agreed that it was a good idea.  The only stipulation she made is that we take an ambulette to our clinic appointments rather than driving our own car.  Driving our car is against policy because it is a liability to the hospital.  Lou immediately balked at this and said something along these lines, "Do you mean an ambulance, or an ambulette?  Because if you mean an ambulance - that's fine - it is a safer option because there is a medical team on hand.  But I've seen the ambulette's parked outside and they are just beat up vans with terrible drivers."  I can't recall where the conversation went from there, but to our chagrin we left knowing that we had no choice but to take an ambulette to each appointment.   

The next day we take a beat-up ambulette to Ty's first oxygen treatment, where the driver got lost and was looking at his phone the whole time.  Then we had an appointment at Sloan Kettering for his MRI where we asked to try a car seat instead of strapping down his wheelchair because car seats are intended to be safer on impact (whereas his wheelchair only has a lapbelt).  Unfortunately, Lou and I didn't like the way the car seat was secured in the van... there are no anchors and the seatbelt it was attached to was too loose/couldn't be tightened.  On the way back, Lou took photos and video to prove our point on safety.  He showed them to the CMO when we got back and she was very nice about it.  She promised she would look into it further, but the next day told us that the legal team still insists that we take an ambulette.  That driving our car creates too much of a liability.  What about our child's safety!?!?

Well, the universe was listening, even when I wish it wasn't.  Tuesday morning the ambulette was a half hour late to pick me and Ty up at Blythedale.  The driver had the music blaring, and I mean blaring as if he were dee jaying a dance party.  Even after I asked him to lower it, he kept the same inappropriate radio station on where expletives were bleeped out in every song and the topic of conversation on the talk show was "what do you do if your significant other hits you?"  So there were people calling in saying things like "send the b*tch to jail" or "I'll kick his a$$ in with a frying pan."  I can't make this stuff up.  So, I'm taking notes and can't wait to build on our case against this mode of transportation.  The ride home closed the deal - we are never setting foot in another ambulette. 

The driver who picked us up the next time was a true professional and I was so relieved.  He really took good care of Ty and what ended up happening wasn't his fault but it was horrible nonetheless.  When we pulled up at Blythedale, the wheelchair lift in the back of the van wouldn't work.  This happened once before and the driver had to use a crowbar to crank it down manually.  This time, the driver couldn't access the manual lever inside the van without moving Ty's wheelchair out of the way.  So, he unlatched it from the straps on the floor so it could wheel forward, no longer secured.  After a while, I had to step out of the van, too, because I was in the way and he was still having trouble.   I was watching from the side where both doors were open when the driver hopped out and went around to the driver's side of the vehicle to release some sort of lever in an effort to get the wheelchair lift working.  I have no idea what happened, but he pulled something, I heard a snap, and then the van just took off - rolling forward with no one inside but poor Ty rolling freely in his wheelchair while all the doors were open.  The van crashed into another vehicle that was parked a few feet ahead, Ty's wheelchair rolled and stopped when it hit the seats in front.  Everyone was fine except for me because I was so shaken up.  In fact, when we got back to the room I was such a mess I thought they were gonna put ME on a stretcher :) 

Everyone at Blythedale handled the situation perfectly fine.  In the end, Lou and I were presented with a waiver to sign off on so we can take our own car (of course) and the facility is using a new vendor for transportation.   Just for reference, here are some photos of one of the vehicles that we took beforehand to build our case for driving our own car.  I wish this had been enough proof in itself!!

One side of vehicle

The other side

Pretty bald tire
Thank God that's behind us and everything worked out okay.  For the past two days everything has been going really well, and we love having more control over our schedule now that we can drive ourselves.  Ty has been saying and doing the most adorable things.  I am just loving him so much.  I miss Gavin to death, but this alone time with Ty is just very special.  He makes the cutest jokes sometimes, it makes me realize just how much he is growing up!  He also decided he wants to win a goldfish at a carnival, and he is going to feed his fish candy (of course).   Best kid ever.

Tuesday, April 24, 2012

Chinese water torture

What a rough night.  Not for Ty, don't worry.  Somehow he is sound asleep through what has turned out to be one of the worst nights I've had at Blythedale so far.  I never know what timezone "blogger" thinks I'm in, but it is 3:35AM and it is simply impossible to sleep.  I wish I never took an Ambien because it only amplifies the fact that sleep is not happening tonight. 

The small boy who shares a room with us is ventilator dependent.  Tonight, one of his machines has been malfunctioning.  It is beeping a series of five notes, very loud, every single seventeen seconds for the last hour and nine minutes.  I learned that when I'm tired enough, I can actually get to the cusp of falling asleep in less than seventeen seconds, only to be drawn back out of sleep by the incessant beeping every single time.  This is chinese water torture.  I googled it and found this amazing image that perfectly conveys what I'm feeling right now.

by Yanik Chauvin

But, I didn't create this blog to complain to you all when I'm tired and grouchy.  It's to share updates on SuperTy so here's the latest.

What a great day!  The best yet (which makes the awful night seem that much more unfair).  Ty was such a good boy at his oxygen treatment this morning, and he was excited to participate in therapy today.  That was a first!  He has never shown interest in playing with his therapists before.  He usually cries and requires a lot of coaxing.  Today he said he couldn't wait to play and have fun with them in therapy village.  I think it came as a little bit of a shock to all of us :)  In addition, here is a short list of some slow improvements I've taken note of...

1.  Ty's appetite is improving and the feeding therapist taught us to be tougher with him on his diet, and she was totally right.  He is introducing new foods by mouth and I'm so happy.  It's a fight every time, but worth it to see him eating a wider variety of food again after so very long.

2.  Ty's ability to drink out of a straw has improved.  This is a big deal because it means the muscles in his mouth are getting stronger, and that he has more control.  Down the road, this is important for improved speech, improved chewing and safer swallowing as well. 

3.  Ty's head pain is a little better!  This is a big one.  He still requires Oxycodone every four hours, but today he didn't need any extra doses to combat breakthrough pain.  In fact, he didn't complain much about head pain all day.  Maybe just three or four times the entire day, and he said it only hurt "a widdle". 

4.  His head control is getting better.  In fact, we went for a nice walk this evening with his chair tilted almost straight up, and he didn't need his neckbrace.  See?  Here he is during our evening stroll, after he got all washed up and sparkley clean.  But don't tell Ty.  He only likes to be "dirty" (such a boy) so I have to tell him I'm using dirty bathwater and putting on his smelly, old pajamas afterward. He totally gets a kick out of that. 


His extremities are still pretty much the same, but I expect them to follow suit eventually.  I do believe he will recover.  With all of my heart.  I just think it's going to take a very, very long time.

Today we started his chemotherapy again.  Cyclophosphamide and Accutane for the next 21 days.  I was very torn about it because I hate seeing him ingest all of those toxins, but after such a long time off treatment I was also very scared not to.  I hope it doesn't start to make him tired after the positive progress he's been making.    Hopefully the dosing remains low enough that it doesn't affect him much.

It's now 3:57 and I think it stopped!  Yes, it did!  The alarm that started at 2:24 this morning has finally ceased and I think I might be able to get a couple of hours of sleep before we get up for oxygen treatment at 6.  I'm excited so I'm going to sign off for now.  More soon!  I'm just going to leave you with two adorable pictures of the best boys in the world.  Thanks for your continued love and support.  And thanks for the ear when I had some complaining to do tonight.  I can't exactly pick up the phone at 3AM (not that I ever pick up the phone, anyway, I'm not a big phone person). 



In Ty's picture my Long Beach friends might recognize the tie-dyed Michelle O'Neill tee from the year we moved upstate.  He was randomly wearing it today and then I saw on FB that it is her 40th birthday!  

Saturday, April 21, 2012

Ty Campbell, Rockstar Astronaut

I saw this posted to another cancer mom's Facebook today and I watched the video.  I didn't expect for it to hit home so much.  This couldn't be a more perfect depiction of what life has been like for me, Lou and Ty on this most painful journey.  It's 100% true and I can relate to every word written.  

WATCH THE VIDEO HERE

My days of watching childhood cancer youtube videos had to be stopped (for my own health), but I'm glad I came across this one because it just goes to show you how many people are watching their children fight for their lives like this.

"I wanna walk!" 
I spent a lot of time stretching Ty's legs yesterday.  At one point I had him wiggling his toes and trying to push on my hands.  Despite his severe weakness, there is some very slight movement and that keeps me hopeful for improvement.  I was cheering him on and at one point I said something about walking again someday to encourage him to keep trying.  I immediately wanted to take it back because it's just not the right time to get him excited for something that's so far out of reach, but Ty heard it and latched onto what I said. 

"Yeah, I wanna walk!" he said.
"Oh good, baby.  With that attitude, some day you surely will" Big smile.
"No, I wanna walk now"
"Oh, I think it's too soon.  When I said you'll walk again, I meant maybe in a few months or so," trying to be vague.
"No, I wanna walk now.  Mama, let me walk.  Take me off bed."
"But, you are still so weak baby.  I don't want you to get hurt."
"That's okay, Mommy.  You can just hold my hand."

Ugh!  Heart... spoon... you know what those words felt like.  But at the same time I was so proud of his can-do attitude and couldn't stop smiling and staring into his eyes while I struggled for an answer. I decided to take him out of the bed and sat him on my lap.  We brought his feet to the floor, it was not easy for me to do this because his entire body is so wobbly, but we managed and he seemed satisfied with that.  My big boy.  Such a trooper.  Lou had walked in while we were in the middle of trying to "walk" and he helped me hold him steady.  As always, we were both so happy to see him striving to get better.

The photo I shared of the oxygen chamber the other day was just something I pulled off of a website as an example.  Here is the real deal.  Ty in his "space suit" as we call it.  Tonight I suggested that if anyone asks him what he's gonna be when he grows up, that he should answer "ROCK STAR ASTRONAUT."  If anyone can pull that off, Ty can :)  I love that.  My little rockstar astronaut jamming on the moon and taking the galaxy by storm.

The Chamber

Ty getting ready to go in

Mission Control

Ty inside - Lou took this from the outside looking in




Friday, April 20, 2012

This is a long one...

I've been gone for days, so I have a lot to share!  Bur first, a couple of favors to ask.

Please go to the Gap Casting Call, search for "SuperTy" and "like" him on Facebook.  Imagine how much childhood cancer awareness we could spread if he was chosen!! The winners will be announced on Monday, so we only have a couple of days left. 
CLICK HERE TO "LIKE" TY

Also, one of Ty's beautiful nurses will be running her first marathon for Fred's Team this year.  This is such a huge undertaking.  As you may recall, Lou and his sister Debi raised around $30,000 for the cause when they ran last year.  It is an amazing foundation and the funds raised go specifically to support research for rare cancers (consisting of mostly pediatric cancers).   She needs to raise a minimum of $6,000 and I know you can help her do it!  Even if it's just $5, it would be so appreciated :)  Slowly but surely, she is getting there!
CLICK HERE TO SEE HER PAGE

I'll start by sharing some of the fun photos from Gavin's 3rd birthday party last weekend.  He is getting so big, and I am miserable being so far away from him for so long.  I will be home for half the day tomorrow and I am praying for nice weather so we can go outside and have some fun.

The birthday boy!
The most amazing cake... EVER!

Special boy gets a ride from his friends on the parachute :)

I just thought this was funny

Thanks again, to Jennifer Jackson and Icing Smiles for the most amazing Toy Story cake.  It was so special and Gavin went totally nuts over it.  And to Seaside Celebrations for throwing him a party to remember.  And, to Janice, for all of the beautiful pictures!! 

Now, the long, detailed updates on Ty.  I'll start with how he is doing in general, which is okay.  Lou and I are going to stick it out at the PT facility for at least a few more days, but we aren't convinced that the benefits of therapy received while inpatient outweigh the emotional toll it is taking on him.  Especially with all of the back-and-forth travel we will be doing to Phelps for the oxygen therapy.  We are considering switching to a daily outpatient routine in a week or two so he can spend his evenings at home with his entire family, but there are a lot of details that Lou and I need to iron out first and that could take a while.  If we check out, we want to ensure a smooth transition to outpatient care and that takes a lot of time to arrange (insurance-wise, acceptance from the facility of our choice, scheduling and a number of other annoying details that I don't need to get into).

Ty is in the hyperbaric chamber for the second time as I write this.  Each session takes almost 2 hours.  I need to attach a photo so you can understand what he is doing right now.  This is almost exactly what the chamber at Phelps looks like, only Ty is in there alone with two doctors and he is on a stretcher.  Watching his Max and Ruby DVD (of course).


If he becomes inconsolable I am prepared to go inside and be with him, but so far he has been such a good, brave boy they haven't needed me.  I'm shocked and a little disappointed because I wanted to be in there with him, but also beaming with pride over how amazing he is.  This morning he actually said "Yay, rocket ship!" on our way to the appointment.  Of course, he whines and cries his fair share as he is being examined beforehand, and he hates putting on the hood, but in less than five minutes he calms down and relaxes for the duration of the treatment. 

When I first spoke to the HBO doctor, he told me we would start with 10 - 15 treatments and see how he's doing.  He hopes by that time we will see some slight improvement in Ty's head pain.  If he is doing okay and tolerating the therapy, then we will continue for another 15 treatments and take it from there.  In total, Ty is approved for 30 initial treatments, and that may be extended to 60 is it proves to be working really well.  Wow.  I was not prepared for that news.  I didn't realize what a long, tiresome commitment this would be.  But, if it works we're happy to do it, right?  It is one of only two proven therapies that help to speed up the healing process where radiation necrosis has occurred.  His doctor makes no promises, but he is very hopeful and I certainly like that. 

Just to make matters complicated, in true Ty style, we had to rush to MSKCC for an MRI after oxygen therapy yesterday.  It had nothing to do with the chamber, rather, Lou and I were very concerned over his increasing head pain.  He had a terrible day on Wednesday.  When I returned from my grandmother's funeral I laid down in bed next to him while he cried about his head pain and I thought, "this is the beginning of the end... I think he may be dying."  I was so worried about him.  Then I thought, "or not... because Ty is amazing and he may be running a marathon in a few years."  I just want my poor boy to feel better.  He hurts so much.

Can you imagine what it's like to be me and Lou?  In the same conversation over breakfast we talk (1) what sports we will allow Ty to play when he recovers fully (no football because of his shunt, but maybe baseball would be okay), (2) what it might be like for Gavin at school if his brother remains a paraplegic forever (will he be embarrassed of his brother?  made fun of?  we all know kids are cruel), and (3) what memorial services we want if, God forbid, Ty dies.  All of this over scrambled eggs. 

I've been so tense that my shoulders feel like they are in my ears, but the MRI went very well.  It was incredible, in fact, because the necrotic lesion on his brainstem appears to be diminishing yet Ty is only the same or worse.  In fact, our doctor is completely baffled and will be discussing Ty at tumor board on Wednesday.  Lou asked him to please share the scans with neurosurgery and radio oncology so they can think about it beforehand.  I half-joked that maybe the answer will come to someone in a dream, but Ty's situation is so strange that I believe it might be the only way someone figures out what's really wrong and how to properly treat him.

So, tumor board is Wednesday night and we hope to hear about it on Thursday morning.  Until then, we will continue moving forward with the hyperbaric oxygen therapy because the assumption remains that Ty is suffering from radiation necrosis (although that is debatable after the last scan).  We are beyond frustrated but there's nothing we can do but remain patient as usual.   

Before I sign off, I attached the poem that the priest read at Granny's funeral.  You may need to click on it to enlarge so you can read it, but it's a really nice way to think about how we live our lives.  Love you, Grandma.  The dash on your gravestone is most admirable :) 

Monday, April 16, 2012

What a champ

This morning, Ty had tubes put in his ears.  He had this procedure done without anesthesia.  He's FOUR years old!  What a brave boy, but you all knew that.  It went so well.  Better than I ever could have imagined. 

The ENT that agreed to do it told us flat-out that he has never performed the procedure on a child without anesthesia before, but that he was willing to do it if we wanted him to.  As you know, we are eager to begin hyperbaric oxygen therapy and didn't want to delay any further waiting for surgery w/anesthesia in a hospital setting.  The tubes are necessary because the chamber is under very high pressure and Ty is too young to pop his ears on command.  Now that this is over with, I will go to Phelps for his orientation tomorrow, and he begins on Thursday.

Last night I didn't sleep well at all.  We had to be up and on the road very early for the appointment with the ENT, I had a lot on my mind and I was so afraid that the appointment wouldn't go well.  The procedure involves cutting a hole is Ty's eardrum and placing a tube in the hole.  It hurts.  Not much, but it does hurt.  And, Ty had to be very still the entire time.  He was nervous, too, because he hates being at any doctor's office and he said "what doctor gonna, do, Mommy? I don't want doctor do anyfing to me!  Pweeze Mama!  I don't want doctor to do anyfing to me!"  Could you imagine the pounding of my heart.  I am still sick over it.  But, our little fighter was a superstar.  He barely even flinched.  Barely shed a tear.  He never ceases to amaze me.  Afterward the woman assisting the procedure followed me out to the elevator just to say that Ty is amazing and that she will be praying for him.  People are so kind.  Ty touches so many. 

Here he is in his special chair, with his hand guards on, his neck brace and his chubby steroid cheeks.  He is such a good boy through all of this.  He's happy to go in his chair.  He wears braces on his feet for four hours a day.  We stretch him out five times a day.  He gets OT, PT, speech and feeding therapy.  He also went to the classroom here for the first time today.  That was beyond hard for me.  Ty embraced it.  He was actually full of smiles during circle time and music, but I could barely stand to be there.  To watch as he wanted to sing along to his favorite songs but couldn't get the words out.  He was more disabled than most of the others, unable even to lift his arms and clap.  It was as heartbreaking as it was inspiring.  Watching my son smiling and enjoying his first day at the new preschool since his whole life changed so drastically makes me so proud.  He doesn't dwell on his inabilities.  Instead, he appreciates a funny book, a snappy song and a silly story. 


We threw a small kid's party for Gavin's third birthday party on Saturday.  I have so many pictures to upload and share, but I don't have the camera with me and with all of the services we have planned for Granny this week, I may not be able to share for a few days.  In the meantime, however, I have to say thank you to:

SEASIDE CELEBRATIONS, for throwing Gavin such an amazing party, and for leaving me with zero responsibility other than showing up.  It was the most perfect party, and we will never forget all that you did for us.  Debbie - XOXO times a million.

ICING SMILES, specifically, Jennifer Jackson, who volunteered to create the most amazing Toy Story Cake for his birthday.   When I picked up the cake at her home, I had tears in my eyes several times because I saw that she poured her heart into it.  So much work.  So beautiful.  It will be the number one picture I post as soon as I get to upload everything.  It was so special.  Jennifer, thank you, thank you, thank you.

Anthony and Yasmine. For babysitting the birthday boy even when you had Theo's own birthday to celebrate. He had so much fun, it was such a huge relief for me, and I still can't thank you enough.

Kate, John, Sean, Patrick, Aaron, Nate, Jake, Luke, Eva, Theo, Julia, Chloe and Evan.  For being such great friends to Ty and sending him his very own "candy cart" for his new hospital room.  He is completely obsessed with it.  OBSESSED!  He says he will be making several candy houses, and a candy castle in his free time.  Out of the blue, at any given time of the day, Ty will say "I still can't believe I have my OWN candy cart."  We take out each drawer and sort through all of his loot several times a day.  Several times an hour :)  To say he loves it is an understatement.


Speaking of Candy Houses - Joy Marielle, there will be something in the mail for you from Ty!  You are the best!

Goodnight everyone.  Birthday party pictures to come!!!
 








Friday, April 13, 2012

Goodnight, sweet Granny

Ty's Great Granny passed away today.  Of course I'm sad, but I'm also so grateful that she is at peace and that her passing was simple and painless with my mom holding her hand.  Granny turned 92 on April 4th, but she has been sick for two years so we have wanted this for her for some time. 

I asked Ty if he remembers Great Granny and he said yes. Then I told him that she's sending him tons of extra kisses tonight (she's famous for wrapping her soft, skinny hands around your face and giving a series of loving kisses on each cheek).  Ty said "I don't want to talk 'bout that!" His response was a little odd because I certainly didn't say anything about her passing away (and I don't plan to), yet I sensed he was a little sad. After she heard the news, Colleen also texted me that she can feel grandma's kisses on her face and that made me so happy :)

When I get home this weekend I am going straight to the room where we have Granny's old armoir so I can open the drawers and take a nice, big whiff.  It still has a very pleasant, very familiar smell that brings me right back to her house for sleepovers when I was a little girl.  A safe, loving place to be where apples and ice cream were always on hand.  In fact, the smell is so true to my memories that I have yet to put anything inside that piece of furniture, afraid the scent will disappear into the fabric or something. 
Grandma Teresa Dombrofski - We love you!
I am a little embarrassed to admit this, but my Grandmother's passing instilled a new fear in me.  I imagined how happy she was in heaven and then it hit me...  I always find comfort in knowing my loved ones are watching down from above and protecting us, especially Ty, but what if heaven is so magical that they decide Ty has suffered too much and belongs among the wonders of it all?  I realized that however many times I swear I want Ty to experience the beauty of life for him - that I would gladly give my life for him to have that opportunity - I am also selfish because I want him for me.  I do.  I want him for ME!  And for LOU and for GAVIN.  Today I was driving around with my little Gavin (who is not so little) and I asked him... "who's my handsome boy?"  "Me and TY," he yelled with a smile and when he said Ty's name he looked over to the empty car seat next to him.  We would all be so incomplete without him. 

Don't worry about me.  I have already come to terms with the fears I mention above and released them from my mind.  It's silly to even pretend to know how it all works.  But, I would be lying if I said that these types of thoughts never enter my mind.  I struggle everyday. I am only human and I can't possibly understand what, if anything, Granny is thinking right now, let alone God... but at some point in this journey I learned to let go and to trust in Him.  I have seen a miracle.  Several of them.  I believe that I will see more.  And if anything, the loved ones I have lost are only helping Ty in his healing. 

Of course, the day ended with a brief moment of magic - because it kinda had to :).  Earlier today I was explaining Ty's current condition to one of his at-home therapists.  I mentioned how well he is doing in lifting his arms up at the elbow, but that I don't know about his legs.  That he only slightly wiggles the toes on his left foot, and he can't wiggle them at all on his right.  That he can pull the left leg back a tiny bit, but the right is completely limp.  In true Ty style, he surprised me with a glimpse of great improvement later today!  It was only for a few seconds, and I haven't been able to get him to repeat the motion since, but when I was stretching his legs I pulled his right leg up into a bent position so his foot rested on the bed and his knee was up.  Normally when I let go, his leg drops to the side immediately.  Tonight, he held it in place for six or seven seconds.  This was the first thing he was able to do when he started regaining strength in his legs last year.  I was so excited!  After it dropped I picked it up and he did it again for three or four seconds.  Boy, I really needed that.  How did he know.  I am feeling so hopeful and I think I will sleep well tonight despite all of the noise and disruptions.  I hope to have sweet dreams of Granny flying and Ty walking, no RUNNING, on the ground below her :)

XOXOXOXO

Wednesday, April 11, 2012

Slowly settling in


We all still need some time to adjust to our new digs.  While this is a beautiful, clean, wonderful environment for rehabilitation, we have to learn our way around if we are going to live here for a while.  We spent so much time in hospitals that we know it won't be comfortable no matter what, but it's nice to know where the linens are, the vending machines, the water machines, the coffee - Oh GOD, the coffee here is beyond terrible.  We also learned that we are not allowed to sleep in the bed with Ty.  I had to slip rainbow bear into his snuggling arms and crawl out this evening which made me a little sad but also a little excited to get online and read a book before I take an Ambien to fall asleep myself. 

Just a quick side note on the Ambien - don't worry, it's not habitual for me... it's just impossible to sleep in the hospital sometimes with the beeping and the non-stop interruptions coupled with all of the non-stop noise in my head.  So, every once in a while I need to catch up on sleep for my own health.  Plus, the set-up here at Blythedale is one of the worst as far as sleeping goes.  The only other arrangement that compares as far as middle of the night noise and interruptions is being in a PICU (pediatric ICU).  The set-up at Sloan and Cohen's Children's hospital were much different.  I thought it was terrible when I was there, but tonight I find myself wishing I were there :)
 
Ty slept until 11AM today which wasn't great because he was supposed to begin therapy at 9.  His new doctor added an anti-anxiety medication to his routine morning and night so that his emotions wouldn't be so high when they are trying to work with him, but unfortunately it knocked him out.  They stopped that and hopefully tomorrow he will have an earlier start.

So, it looks like Ty will be getting PT two or three times a day, OT one or two times a day, speech and eating therapy and aquatic therapy (in the pool, as part of his PT).  Lou and I are having a tough time watching him work with the therapists because it's just painful to see him so incapacitated.  And so many discussions with the staff here revolve around our needs at home, such as handicapped ramps, bathing accessories, tools to get him up the stairs, etc.  It's not something we really want to think about because for now we can carry him, and in the future we expect him to be much stronger.  Of course we are aware of the reality we are faced with.  WE KNOW.  Believe me, we are not unrealistic.  It's just that the only healthy way to even live this roller coaster life of ours is to do it one day at a time.  It's the only way we survive without having a mental breakdown.  So planning ahead for a future with a severely disabled child isn't something we are ready to do.  We are so hopeful and we need to always hold onto that.  Thanks to all of you, we are able to keep strong and believe in a better tomorrow.

Ty didn't get a full day of therapy today because we had to leave for a consultation with an ENT nearby.  Ty needs to have tubes placed in his ears in order to begin hyperbaric oxygen therapy because he will be under a lot of pressure and he is too young to pop his own ears on demand.  Unfortunately, the consultation did not go well and the doctor rejected Ty as a patient.  We need to find another ENT who is willing to perform this most minor procedure.  She wasn't comfortable with his condition because - like she told me - she "treats healthy children" and wouldn't want to put him in danger.  As if Lou and I would be okay with putting him in a dangerous situation.  Ty's vitals are perfectly normal, he has no heart conditions, no breathing issues and has been under anesthesia almost 100 times and that is not an exaggeration.  I could barely control myself for hours afterward.  I am still absolutely furious beyond furious every time I think about the two hours we wasted in her office while Ty was completely uncomfortable.  I'm mostly upset because we waited two days for the consultation and I explained Ty's situation to her staff at the time we made the appointment.  She knew we were in there for an expedited procedure given Ty's situation.  We were under the impression that he could have the consultation today, procedure tomorrow, begin HBO as early as Friday.  Now those treatments will be delayed until next week and time is of the essence.  I am getting myself in a complete tizzy again just mentioning it here so I need to go and get my mind off of all of this.  The hyperbaric doctor at Phelps is really caring and good.  I just need to remind myself that it will work out.  We will get there sooner or later.  And it will help Ty to improve.



Deep breath.  Goodnight.  :)

Tuesday, April 10, 2012

Fighting Spirit

Ty's fighting spirit, while it can be awe inspiring, also poses a lot of challenges for Lou and I.  Boy was he fighting hard today.  He was SO reluctant about going to the hospital.  He kept saying how happy he was to be home.  Broke my heart.  It started a couple of days ago, actually, when he called for me from across the room.  "Mama?"  "Yes, Baby?"  "I happy to be home."  I winced every time he said it because he wasn't aware of how short lived it would be. 

Ty yelled and asked us to turn the car around for the entire 45-minute drive down.  He cried and carried on something awful that we almost doubted whether or not we were doing the right thing. On the plus side, clearly his voice is getting stronger.  Just two weeks ago he couldn't speak more than a whisper.

Today was a crazy, stressful, hectic day consumed with paperwork, introductions, reviewing Ty's medical history and settling into our new home away from home.  I left Lou to sleep with Ty tonight so I can be with Gavin, and we will trade places later tomorrow.  His physical therapy is scheduled to begin at 9AM.  Oh boy, I imagine there will be another big fight at that time.  But I'm sure the professionals at Blythedale are used to that.  Comes with the territory and they know how to coerce kids into getting PT whether they like it or not.  Fingers crossed!

I have a really good feeling tonight.  I think Ty is going to make a lot of progress - leaps and bounds - I really do.  The facility is amazing.  The staff is wonderful.  Ty is defiant and we are determined.  I am happy we listened to his at-home physical therapist (thank you, Stephanie) and pursued this option.  I feel like we already lost so much critical time for rehab and am relieved that he is finally there.  As much as I enjoyed being home, I was also riddled with anxiety over getting started on next steps.  I couldn't sleep at all, except for Sunday night after all that indulgence.  I received a card recently that had a picture of wine and cheese on the cover.... My friend in Texas wrote, "Hurry up Lent!" on the cover and I laughed out loud.  Couldn't have been more appropriate :) 

Tonight I downloaded 100 photos from my camera that were taken over the past four weeks.  It shows how much has changed and how much remains the same among my beautiful boys. 


Ty sitting up in his "spot" eating candy

Just getting home from our first hospital stretch in March, Ty is still sitting up fine, playing with Gavin
 
Poor Gavin is lonely without his Ty after we return to the hospital soon after


My BIG BOY!  So sad I missed this.
In the hospital, poor Ty doesn't understand what's happening to him.  He insists that he can still play on the floor.  Not wanting to discourage him, Lou carefully arranges this whole set-up for the Tyrant

After returning home just Friday.  Ty can't sit up and has trouble moving/holding up his head.

But that can't stop him from looking super handsome on Easter Sunday

Handsome boy #2


Best Friends Forever

That's all for now.  I feel like we are living in a tornado and I need to try to get some sleep before it swoops me up again and the next day begins.  Actually, I need to fold laundry, then rush off to lay in my bed and not sleep all night.  That's the reality.  But I'm going to give it my best because my whole entire body aches all the time - even my teeth, I swear! Well, maybe not my toes, they don't seem to be hurting me right now.  I think it's a combination of fatigue, anxiety, emotional stress and the physical stress of carrying around Ty all day every day.  Let's see if I can fix myself for tomorrow by getting at least a little bit of rest tonight.  Goodnight everyone, and thank you for all of your love and support.

Before I go, just a quick special thanks to Kathleen for the tremendous surprise.  I am so overwhelmed by how thoughtful it was - and for me!!  Your letter couldn't have been more accurate and more insightful - you really do know me :).  Thank you so much.  All of my love to you and your beautiful boys.  :)

Very Quick Update

It is soo late, and today has been a long day preparing for tomorrow, so I am just writing a very quick update until I can properly upload Easter pictures and share what's on my mind.

Ty is awesome.  We have been very busy, but most importantly, very happy at home.  Easter was nothing short of magical.  He is feeling better every day and showing some potential for physical recovery.  Today, for example, he was able to hold his head up better than ever, and he accidentally pulled his hand up to his face.  It was very exciting for him and he bragged about it quite a bit. 

"I'm so happy to be home," he says often, which makes me so sad because tomorrow we will be checking him into the Blythesdale Rehabilitation facility.  He will be okay, though.  He always adjusts well (knock on wood). 

We met with the hyperbaric oxygen specialists at Phelps Medical Center today (located just a few miles from Blythesdale) and it looks like they will accept Ty as a patient.  I will share more details on how that works soon, I am just so happy that the ball is rolling on this.  The doctor was very nice, and I could tell he was very caring.  He said we should have zero expectations, of course, but that he has good reason to believe that the oxygen therapy will help to alleviate some of Ty's incessant head pain, and potentially help him regain some of the physical ability he lost as a result of the current radiation necrosis to the brainstem.  I believe he is right :)

We need to coordinate a quick outpatient procedure before we can begin (he needs to get tubes in his ears so the pressure in the chamber doesn't cause discomfort) and once that's done we can probably begin early next week.  I am anxious.

Other than that, we will know much more tomorrow.  We need to meet with his caregivers and Blythesdale, allow for a full evaluation and such, before we will know how long of a stay to expect, and what his daily therapies will look like.  Regardless, I am certain he will do very well - reluctant as he may be - and I can't help but have very high hopes.  I'm just so relieved that everything seems to be going smoothly right now. 

More tomorrow.  Goodnight and God Bless.

Sunday, April 8, 2012

Home for Easter

What a blessing this has been.  Needless to say, Lou and I (and Ty) are absolutely thrilled to be out of the hospital in time for the holiday and able to celebrate with Gavin and Ty in our own home.  It feels so good to be back despite knowing that our time here is limited.

However, we are also utterly exhausted.  We arrived home late on Thursday night, only to hit the road and head back to the hospital first thing in the morning for Ty's Avastin infusion.  The drug company doesn't allow for that medication to be administered while a person is inpatient and Ty was overdue for this life-saving medication due to his extended stay at the hospital.  We were there all...day...long yesterday.  Didn't get home until after dark.  On top of how tired we were from all of the traveling and the simple exhaustion from carrying Ty around differently given his new handicaps, we also have to be up to administer pain medication every four hours which means a very broken night's sleep.

Ty definitely has his fair share of ups and downs, but is doing so much better at home overall.  On the down side, his steroids are making him extremely emotional, and sometimes his head pain gets so bad that he tells me we need to "go back to hopwiddle bee-tuz it hurts too much to be home."  That just breaks my heart.  Luckily those moments are few and far between, and he is otherwise truly happy during the day.  On the plus side, he is regaining his appetite and he is showing so much adorable motivation to try to move his arms and legs.  So much more than when he is stuck in a hospital bed.  It made me a little sad when he told us excitedly that he wanted to play on the floor because sometimes I don't think he realizes the extent of his limitations, but Lou came up with a great idea to prop him up in his tiny recliner with all sorts of support so he can feel closer to the floor - more like he could play with his toys.  He asked for a puzzle and he was telling me where the pieces went by dictating "top right, bottom left," and so on.  What a little smarty-pants he is.  I love how he accommodates to whatever is thrown at him.  You should see how willing he is to put on the neck brace he needs to wear in the car seat.  Not a single complaint, he's such a champ!

I am posting a couple of pictures from previous Easters and I can't wait to share some of Ty and Gavin tomorrow night.  Well, probably Monday knowing that I will be indulging heavily in the wine and/or champagne that I gave up for Lent - not to mention the likely food coma that will have me in bed earlier than usual. 

Easter 2010

Easter 2011 - chubby from steroids
In the meantime, I have my own ups and downs.  I don't know if I'm happy or sad from one minute to the next, and I feel like there isn't enough coffee in the world to give me the energy I need to keep up.  On the other hand, I was running around like crazy today trying to clean the house, get organized and buy some last minute Easter surprises from the Easter bunny since I didn't expect to be home before.  I was steaming carrots, sweet potatoes and chicken to make some all natural blended shakes for Ty's G-tube. I was preparing his medicine for days in advance. I was pulling together their outfits for church.  I was hard boiling then coloring eggs with the boys, then decorating Easter cookies to leave out for the Easter bunny. I just finished hiding eggs and pulling together their baskets and I realize how much I need to just chill out!  It's midnight so I'm debating a glass of wine ;) but I think I'll just go upstairs, snuggle next to Ty and try to catch up on some sleep and regain a little sanity! 

I may be broken, but I like to think I'm still a good egg.


Thursday, April 5, 2012

A fateful turn of events

News that had me almost in tears this morning has resulted in a serendipitous surprise.  Right now Lou, Ty and I are in the car heading home for the weekend.  After a month in and out of the hospital with no end in sight, it turns out that we will be spending Easter together as a family after all!  We are all a tiny bit scared to be going home under such difficult circumstances for Ty, and a whole lot happy at the same time.  Every once in a while Ty says to me that he’s not ready to go home because his head hurts too much, but for every time he says something like that there are three or four other statements about Gavin and home that overpower his fears (and ours).    


At first it looked like we would be stuck at the hospital until a bed became available at the Blythedale rehab facility – which all of a sudden meant no sooner than Tuesday of next week (the status on some patients expecting discharge today had changed as of this morning).  I was climbing the walls at the thought of poor Ty (and all of us) stuck in limbo for days during such a critical time for his rehabilitation.  It all comes down to the insurance company.

In order for our insurance to approve payment to an inpatient rehab center, Ty had to be transferred as an inpatient from Sloan Kettering.  However, no bed was available at the rehab facility at the time that Sloan Kettering was ready to discharge us.  We were told that if we went home, we could risk a future denial from the insurance company (for example, if Ty is “well enough” to be home for a few days, then he doesn’t require inpatient care and could be seen as an outpatient instead – much cheaper for the insurance company).  At the same time, the insurance company denied coverage for Ty’s extended stay at Sloan Kettering since his medical needs had been adequately addressed.  All day we waited and waited to see how this would net out.  Where are we supposed to go if the insurance company says we can’t go home but we can’t stay at Sloan, either?  Finally I had a breakdown around 3PM, crying and losing my mind, which prompted Lou to get more aggressive with all parties involved and find out what was going on.  He was on a mission.   He marched through the halls of the hospital to track down everyone, and he got on the phone with Blythedale.

In the interim, I stepped out and visited St. Catherine’s church for some solace.  Ever since my faith was challenged at the time of Ty’s diagnosis I have found serenity from sitting in a pew and sorting through my thoughts and tears.  Magically my confidence is restored, my perspective regained.  I walked the stations of the cross and returned to the hospital with sanity and peace of mind.

Everything ultimately worked out better than I could have possibly imagined.  Thank you, Lou, for shaking things up and putting your foot down.  For being so strong, especially when I am weak.  “We’re leaving,” he said and that was that… 

…I started writing this while we were on the road, and I am picking up where I left off in the peace and quiet of home sweet home.  Everyone is asleep and I am waiting until it’s time for Ty’s pain meds before joining them.   We finally got home around 8:30PM and were greeted by an ever-gregarious Gavin who was up past his bedtime waiting for us.  He was SO excited to see Ty, he was practically tripping over me trying to reach for him.  He said, “Put Ty in his spot, Mama!  Put Ty in his spot!” Ty owns the corner spot on our couch ;)  Then he came running over with a mini-puke bucket and climbed over me to put it under Ty’s chin.  “Here you go, Ty.  Here you go.”  It was sweeter than sweet, and kind of sad at the same time.  I can only imagine what goes on in that almost three-year old head of his.  He knew Ty was sick and in the hospital, so I guess he thought that meant he was going to “get sick.”  Similar to when he told me Ty must have eaten too many jellybeans.  For as young as he is, he understands more than he should ever have to understand.   One thing is for sure, those two boys love one another.   I am so lucky.  So grateful for them both. 

Tomorrow we have to return to the hospital for an infusion of Avastin, but hopefully it won’t take too long.  There’s a whole ‘nother saga with insurance as to why this is necessary, but I won’t bore you with those details.  I just hate the idea of having to tell Gavin we are going back.  I hope he believes me when I promise it’s only for the afternoon.  I hate the idea of putting Ty in the carseat for such a long round-trip again (he has to wear a neck brace and he’s so uncomfortable in general) but we have no choice.   I hate that he will have to get needles again, too.  All of this, however, will be worth it when he begins to recover from this latest setback.  The healing has already begun.  He is lifting his hands and moving his head and I just know that he will continue to improve daily. 

At one point during the drive home I recall turning toward Ty and feeling almost blinded by the most magnificent full moon.  So beautiful tonight.  God is always right there.   As exhausting and emotionally draining as it was, today was a very good day.
This photo was taken a few weeks ago, when Ty was strong but showing the first signs of getting sick.  So happy the boys are together again (the whole Toy Story gang is happy Ty's home, too ... oh... and so is Gavin's giant red reindeer - the funniest toy ever).  Isn't Gavin HUGE?  Does Ty have the cutest smile on the planet?

Wednesday, April 4, 2012

It comes and goes

Ty says this several times a day.  Several times an hour.  He's talking about his head pain.  It seems to be less severe, but it's always there.  Lingering.  It comes and it goes no matter how much morphine or oxycodone he is on.  It hurts just to admit in writing that my four-year old is even on such medication.

Cancer is relentless and cruel.  Even now, when he's cancer free, my baby suffers from more pain that I have ever known in my lifetime.  I always know it's starting up when he begins to sweat profusely.  Then he opens his mouth over and over again because, for some reason, this provides a little relief.  I guess it makes sense anatomically, if you think about how the brain stem is aligned with the throat, somehow opening the jaw may relieve some pressure. Whenever I look back on pictures of him as a toddler it makes me sad to see that he was doing this for a month or so before we had any idea how sick he was.  How could it be possible that something so grossly imperfect was growing within something so incredibly perfect.


Kayla, my sweet niece, painted this for Ty a long time ago.
How can I even sit here in this hospital room watching my son suffer like this?  No mother should ever have to do this. To watch how he is unable to voluntarily shift his head, move his arms, scratch an itch, wiggle his toes.  Countless people come in and out and offer him stickers, play-dowh, crayons, because they don't know that he can't do these things anyore.  Sometimes I wonder if anyone even has the capacity to imagine being in my shoes unless they've been here themselves.  I know I didn't until I had no choice.  I heard sad stories about others all the time, and of course felt sad.  But it was in passing.  I prayed for them and went on with my busy day.  Which is fine, I certainly don't want anything else, but it does make me feel good about writing this blog and sharing Ty's story more intimately.  Not because I want more sympathy, of course not (!), but because I think there is so much value in simply sharing.  Helping others understand that I am you and you are me and cancer affects everyone.  Even our children.  Together we are going to change this. 

I get through every day without too many tears because I have profound, undying hope that lies deep in my bones. It is everlasting and it brings me peace. I trust in God completely and wholeheartedly. During the times when that trust is challenged most, that is when I am at my weakest. When I free myself and remember that all of this is in God's hand, it always has been, I truly find peace. 

I just want to throw this out there that I do not judge anyone by religion or lack-there-of.  If you are reading this blog and care enough to follow Ty's story and wish healing upon my family then your heart is good and kind and I love you and thank you tremendously.  I call it God's will, you may call it something else, but we are all family and I appreciate any positive thoughts, prayers, healing energy, or scientific rationale that you send our way.  We are forever grateful to each and every one of you and we are so lucky to have you in our lives.  Ty has had an amazing impact and it gives us so much strength knowing how many lives he has touched.

Today Ty is adjusting to his final steroid taper.  Meaning, his dose was cut in half yet again.  Over the past week he went from 16 milligrams of dexamethazone per day to only three.  With each reduction in dose, his heart rate becomes more and more normal.  There is also an adjustment period where his head pain often increases until he gets used to the new level.  All of this is wonderful, because it shows that he isn't suffering from increased swelling at the brainstem when we lower the steroids.  It means we may have seen the worst effect from the radiation necrosis - hopefully. 

I bite my tongue, of course, because soft tissue necrosis, especially in such a critical area of the brain, is extremely dangerous.  The necrotic/dead tissue, unless surgically removed (which is not an option for Ty) only encourages new necrosis to begin as it cuts off the blood supply to the healthy tissue.  We hope and pray every day that Ty's body can naturally reabsorb the dead tissue in his brainstem before it causes any such ripple effect. So, although we are not out of the woods (are we ever, knowing that Ty's cancer can also relapse at any moment?), but things are looking good.

In the meantime, Ty is off treatment.  No chemo for a while.  We are focusing 100% on his physical recovery for now.  Besides, I believe with all of my heart that Ty has won his war with cancer.  Now we need to "stop the bleeding" and focus on repairing the damage done.  We hope to transfer to a new inpatient facility tomorrow or Thursday.  It's called Blythedale and I am very excited about it.  They are known to be very aggressive with physical therapy and I think Ty will do very well there.  It is also located just 45 minutes from home so I will finally get to see Gavin regularly.  In addition, we are trying to get Ty approved for daily hyperbaric oxygen therapy at Phelps Memorial in Westchester, and we will continue to come to Sloan Kettering every two weeks for his Avastin infusions.  We have a plan!  I feel good about it. 

Ty continues to talk about his friends at school several times a day. Makes me so happy and sad at the same time.  We look through the drawings they made for him and we talk about what they might be (a rainbow, a bowl of spaghetti, a truck, a flower patch).  We look through the photos that were taken while Ty was there and talk about his favorite preschool activities (snack time, circle time and the car mountain).  I want him to get bedda.  I want him to go back to school.  I miss those kids just as much as he does and I wish things were different.  That's all. 

Tuesday, April 3, 2012

Cuteness

I am utterly exhausted and Ty is still awake (it's past midnight) so I have to keep this brief.  I just want to share some adorable things he did today.  We were alone in the hospital all day and I truly enjoyed him. 

Yesterday we received lots of new candy options to build on the house from friends who visited.  Final pictures to follow soon :)  One of the items was an M&M container that has a battery operated fan on top.  I'm sure you've seen these.  Well, the King has taken to it.  He tells me "I want my M&M guy to cool me off."  So, that means I literally sit by the side of his bed, fanning him.  He gets so sweaty, I'm actually happy to do it.  Now I just need to convince him for a long overdue spongebath.  He prefers to "be dirty!"


He asked me for a late night snack before, so I cut up a grape in eight pieces (yes, one grape - eight pieces).  While I was preparing his grape, he said that he wanted to look through the pictures from school.  It was so sweet.  He recently received a book full of photos from preschool, and a folder full of artwork that each of his classmates drew for him.  It was so special.  Ty looked long and hard at everything.  Unprompted by me, he said "I miss my friends."  I miss them, too.  I really do.  He also said, "I'm gonna miss you when I go back to school, mommy, because some day I'm gonna have to go all by myself!"  I thought it was awesome that he said that.  That he is looking forward to going back, and all by himself like a big boy.  Some day is right, Ty.

At one point today, Ty saw I got upset.  I was just sad, and he caught me when I was teary-eyed.  I am usually much better at keeping this from him with the exception of a couple of times when he was in severe pain.  Today when he say my tears, he asked my "Why you cry, Mama?  Because you want my pain to be yours?"  I can't believe he said that.  That he remembers how I told him I wish I could take the pain from him and make it mine.  Boy do I ever.  I would if I could.

Ty had a good day.  We are trying desperately to get all of the details straightened out so we can transfer sometime this week.  Tonight is night #13 in a row, but if you think about it we really only had seven or so nights at home during the whole month of March.  It's getting tough.

The steroids are beginning to show a bit in Ty's face.  His cheeks are getting a little puffy.  In this photo it looks even more so because he is giving a huge "cheese" but it's so cute I just had to share.


Ty just said that he's tired, so I have to act fast and snuggle him all up.  Goodnight everyone.  Thank you, as always.