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 :)

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.


  1. Thank God Ty is ok. Good for you taking all those pictures and writing down notes. What's wrong with people?

  2. OMG! Every time I think it can't get any worse for ya' does! Thank God everyone is fine & you're finally in control. It is shocking that such a reputable place would contract with a company such as that!
    The best news is that Ty is getting better! I hope he get's his carnival fish...although ours were beta fish and they lived 4 years! I think he really could give them candy!
    xxoo Kass

  3. Wow what an ordeal at a time where you guys have enough on your plates. Sad it had to come to the van being in an accident for them to finally sign off on you driving your own vehicle but glad it was a minor one and Ty is physically ok. Hospitals can be great places but can also be very backwards when it comes to policies and logistics. I hope Ty continues to improve in strength and health everyday and you all keep the faith! Sending love, hugs, and positivity! xoxo
    Allison :)

  4. Third World Ambulette Service, how may I help you?

    I'm happy to hear the good news that Ty's head pain is decreasing but sad to hear that he is sick of all this hospital crap and how you have to keep pushing on anyway. It must be so hard for all of you.

    The future holds more progress! Everyone is praying and sending love.


  5. Cindy & Lou,

    Omg I truly cannot believe that happened! I am so thankful Ty is ok. Very sad that they utilize those terrible vans. I am so happy you guys get to drive Ty now!

    I can't wait for you guys to be able to go home. I think that being home will also work wonders for Ty too! You guys will know when the time is right!

    Thinking and praying always!

    Joy Marielle
    Baltimore, MD