Showing posts from March, 2012

Keep looking up...

...because that's where miracles come from. This face.  This face!!  He is remarkable.  Of course there are lots of unpredictable ups and downs during this long stint in the hospital, but Ty continues to charm everyone with his amazing ability to stay positive through all of his hardships.  He just wants to work on his candy house, play board games and watch Max and Ruby.  These little things make him happy.  There is a balloon tied to his bed.  "I wike dat boon, mama," he tells me with a grin.  When I forgot to finish fixing his pillows just right tonight he teased me by saying "Get back to work, mama.  You so slow."  Like I said, of course there is a fair share of challenges, too.  Let's not forget that he is on very high doses of steroids - his "angry medicine" or so he calls it.  Today he got frustrated when he couldn't move his head a certain way.  He argued with me to no end, which in this case turned out to be some decent physic

The Candy House

Passing time at the hospital has been brutal.  It's so hard to find things to do that Ty can still enjoy.  His old stand-bys like arts and crafts, legos, play-doh and building blocks, don't bring him joy anymore because he can only watch while I play in front of him.  Last week he started asking to build a gingerbread house.  Of course, this is not something that's easy to come by during Easter, but I saw a lot of potential in this idea.  I asked Child Life to get me a ton of tongue depressors and some cardboard and I went to work. Thursday evening I glued the sticks together to make the walls and let them dry overnight.  Ty was excited.  Friday night is "candy cart night" so we spent the whole next day imagining all of the different types of candy we could get to decorate our house with while I used medical tape to pull it all together.  Ty became so excited about it, he had me repeating all of the types of candy he wanted, which included some that we knew wo

My hero

 Look at this kid.  He's been beat up for a year and a half, suffering from one of his worst blows ever right now, and still he smiles all the time. "Keep your heads up.  Know that you are loved and live like it.  Embrace this crazy beautiful life that has been given to us and know this small journey through this world pales in comparison to what God has in store for us! " I received this advice in an email yesterday, and it helps me to stay positive.  It's simple and lovely and I appreciate it very much. Ty had his mediport needles changed yesterday.  That means we've been back inpatient for a week, because they get changed every seven days.  How much has changed in these seven days.  I asked his nurse to keep him de-accessed for an hour or so in order to wash him down in between.  He was so mad about that.  As I washed him down in bed he screamed at me to "put the dirt back on!".  Afterward, he didn't even have a chance to wind down all cl

The last laugh

I don't know where to begin.  It's hard to even imagine describing the events of the past few days in detail, so I am going to keep it as simple as possible so everyone has a true understanding of what happened to Ty, why, and how we plan to "fix it." First, let me explain the part of the brain that is being destroyed as a result of Ty's current radiation necrosis.  Most of you know all of this, but just to recap: Ty's original tumor was growing at the base of his skull, the clivus, which is the bone that ends behind the nose/right above where the throat begins. The tumor was about 1.5 centimeters and it was discovered because it began to cause pressure on his brainstem and give him headaches/sweating at night. The brainstem is like "mission control."  It controls the flow of messages between the brain and the rest of the body, and it also controls basic body functions such as breathing, swallowing, heart rate, blood pressure, consciousness, and

Calling all angels

How did we get here?  Again!?!?!  I am frantic.  I am fragile.  I am frightened beyond words.   The steroids aren't working to improve Ty's weakness because we aren't dealing with just swelling in the brain.  That would have been better.  More treatable.  Ty is suffering from radiation necrosis (healthy tissue in his brain is dying as a result of the radiation that he received a year ago).  It is very, very serious.  It is an unstoppable beast and we don't know when the destruction will end.  Ty is being beat up before my eyes, only the blows and the bruises are all happening on the inside and I am stuck handcuffed to the sidelines... useless.    LEAVE MY BABY ALONE!!!  DON'T YOU KNOW WHAT I WILL DO FOR HIM?  It doesn't matter how fierce I am in this fight.  There's nothing I can do.  Can you imagine how that feels?  I always thought there's nothing more powerful than a mother's love, but Ty's chronic illness continues to remind me

Off to the PICU

Every single time I lay down next to Ty, I am overcome by pure love.  I could stare at his face for hours and hours on end.  I am so grateful for him, no matter what. Thank you, God, for giving him to me For letting me be his mama I haven't done anything to deserve such beauty and perfection I am humbled beyond words And eternally grateful for every single minute For every breath we share, lying face to face like this I give you everlasting thanks. Ty is being moved out of Memorial Sloan Kettering to the Pediatric ICU (PICU) across the street.  His physical strength hasn't improved much and his heart rate is dropping.  This is just a precautionary measure, just to be safe, because the heart rate is most likely tied to all of the steroids he is on right now.  On the plus side, I think his head pain is finally slowing down.  He had a very good night's sleep and for that I am grateful. We will be taking an ambulance across the street - we have done this many times

An answer, finally, but not the one we hoped for

Most likely and most importantly, Ty's doctors do not think we are looking at progression of disease.  So, what Ty has been faced with isn't likely cancer-related.  Phew - sort-of. The findings are still pretty bad.  I have so many emotions to share... SO MUCH to tell you all, but I don't have the energy to expand on all we've been through tonight.  My eyes are bleeding after all of the tears I've shed today.  I have missed sharing with everyone, though, and I look forward to writing more when I can.  It is very therapeutic for me, especially during my most stressful times (and this is surely, one of my most stressful times). I was unable to post an update because Ty hijacked my laptop for a few days.  His head pain became so severe he couldn't look up at the TV so I had to prop up his Max and Ruby episodes bedside.  As you probably remember, a couple of weeks ago we ended up in the hospital for some very similar symptoms.  He had a CT and an MRI but both sc

Magic kisses

When Ty is in pain, I offer him my best magic kisses. I stand and i hold him and he folds into me like we are one in the same. I nuzzle him. I walk with him, gently. And I smother him with magic kisses everywhere. Mostly on the top of his head, while I brush back his soft hair - because that's where he hurts - but i cant resist his warm, bare neck either. Pure heaven. He is the most delicious boy. Today was a mushy day at the hospital filled with snuggles and kisses and gentle caresses across his head. Sometimes he tells me my kisses are working. When he told me that today, I know he was only saying that to make me smile. The most encouraging news is that todays CT showed that we can rule out tumor as the cause of his head pain. Thank God. It doesnt matter how recently Ty has been scanned, there is always a fear that his cancer is coming back and it is so aggressive it can happen very quickly. The anxiety I suffered with over the past few days has been intolerable. It


Today, Ty was worse than he has been since we left the hospital.  We need to return tomorrow for another CT scan to try and figure out what the heck is going on.  His head pain is severe, he's been on morphine all day (which I hate), he is sweating profusely, he is showing a lot of stiffness again, he is physcally very weak and he hasn't urinated in almost 24 hours.  I am a nervous wreck.  His appointment isn't until 3PM so that Lou can join us, and I don't plan on taking him into Urgent Care unless he spikes a fever.  So, we probably won't know anything until 5PM or later.  As always, we will keep you posted.  We just want the poor baby to get bedda!

14 days and still waiting for Ty to be back to baseline

Seven to fourteen days.  That's all a virus should last.  Today is day 14 and it's still not 100% out of his system.  He is still complaining of headaches once or twice a day - most of the time they are bad enough that Tylenol doesn't do the trick and I have to resort to morphine.  He is also napping and more tired than usual.  Of course, this means that Lou and I remain concerned over Ty and what else might be going on, but his spirits are better and better each day so we try to remain confident that he will be fine.  Most of all, we're just trying ot be patient.  He completed his IV antibiotics over the weekend.  Tomorrow he needs to get bloodwork and then we can "deaccess" him (take the needles out of his chest) and I can finally give him a real bath.  This afternoon, Ty called out to me while I was washing dishes and asked me to come over and give him a hug.  Of course, I stopped what I was doing right away and was happy to oblige.  While he had his arms

Dreams and Reality - a touching video

I've seen a few cancer moms posting this link, and I was in tears watching it yesterday.  I watched it again today and I am so in love with all of these beautiful children.  So brutally unfair.  They are amazing. I also read an article in the Huffington Post recently that was posted to the Facebook of another wonderful mom who lost her beautiful boy to cancer less than a year ago.  It's about being a mom to a special needs or chronically ill child - and the truth about the amazing joys and triumphs among tears and heartache.   Here it is in full , but I pasted below excerpts that rang especially true for me.    "Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding... I don't claim to speak for every special needs parent out there, but from the


I think we are over the hump.  Please read that in a whisper, though, because I am forever fearful of the trolls :) Ty was awake and alert for the majority of the day today.  A huge difference.  He had his moments where he was whiney or complained of head pain, but nothing compared to previous days.  And nothing at all like the pain he was suffering while he was inpatient last week, thank God.  Today was a hospital day.  The team wanted to check his bloodwork and perform some neuro tests before clearing him for his bi-weekly infusion of Avastin.  All of which looked really good.  The G-shot that we've been giving him every day helped bring his ANC up to a very comfortable level (white blood cells) and we plan to start where we left off on his oral chemo Monday (so long as he continues to improve).  We were there for hours, it was an especially long day, and Ty did pretty well keeping himself entertained in the toy room.  I, on the other hand, wanted to tear down the walls and g


I was looking through pictures tonight.  On this day in March two years ago, I took Ty to the beach after work and we collected shells.  It must have been nice and warm like it was today.  Then one year ago today, we were getting discharged from the hospital after an emergency visit due to headaches and sleepiness.  At the time they did a number of tests on Ty in the pediatric ICU to make sure his shunt was functioning properly and to rule out seizures (including an EEVG - poor baby!).  I guess he was still in the middle of his first series of IMRT radiation treatments and we couldn't figure out what was wrong.  I remember that after weeks of his slow and steady decline, an infection in his central nervous system was discovered.  This year, instead, we had a nice quiet day at home.  And next year I hope I can post another picture of him walking on the beach, or somewhere beautiful! Ty collecting seashells exactly two years ago Ty in the hospital for an EEVG one year ag

Bedda, but not great

Ty is definitely doing much better, especially now that we're home, but I am so sad over how much this illness is affecting his physical strength.  His left side was getting so incredibly strong just before our hospital stay, and after nine days in bed he has regressed SO MUCH.  It's heartbreaking.  He barely has the strength to stand long enough for me to pull down his pants to go potty.  He can't walk more than a step or two - and that's with my full support.  His left arm is so rigid he doesn't even extend his arm at the elbow and his hand is constantly in a fist.  I swear, we have been taking one step forward and two steps back for so long now, I am starting to lose my mind.  This is my baby.  My best friend.  My whole world.  My everything.  I just want him to have an easier life.  I want to see him scooting on the floor again - soon - I want to see him on his own two feet again.  On the plus side, his scans did not show any swelling or neurological issues so

Counting the minutes until discharge

Ty is waiting for one more infusion of antibiotics, it will take 1/2 hour, and then we will be on our way home.  He will need to have the needles in his mediport changed before we go - and he is going to totally freak about that - but once it's over his reward will be leaving!  He needs a fresh set of needles to go home with because we are continuing the IV antibiotics for another five or six days.  We will also return for an Avastin infusion at the clinic on Wednesday.  I hate going home with his mediport accessed because he can't take a bath, but at least we're going home. Reminder - YOU CAN BE THE MATCH!! I just saw a little girl walking the halls with her mama.  It's been a long time since I saw her, but prior to this she was in the hospital for more than two years straight.  Either inpatient or staying at the Ronald McDonald House.  She was just a baby when her fight began, and she so much deserves a beautiful life.  She had a bone marrow transplant that sav

Better today

With the exception of a horrible headache around noon and some nausea at night, Ty had a pretty terrific day.  He is still awake right now (it's 11:30PM) and demanding my attention, so I won't be able to share many details, but the quick update is that we are trying to go home tomorrow.   I will be going to bed tonight snuggling my little man and hoping the stars are aligned.  Goodnight, and thank you for reading these posts!  Hugs and kisses from Ty. 


Bingo night at the hospital is usually Tuesdays.  Ty participated the other night but he was in isolation so he wasn't allowed to go to the playroom to play.  In those cases, the kids use a walkie talkie to participate and the Child Life volunteers come by with a cart full of small prizes to choose from when it's over.  I guess that wasn't the same to him.  Ty was taken off of isolation today because he is doing better, so he really, really wanted to play Bingo in the toy room tonight.  I told him over and over again, "Tuesday is Bingo night... today is Thursday... Thursday is slime night... YAY!  We can make SLIME :)"  but he would not give up.  In fact, he put on such a show - not a bratty show but a genuinely sad puppy show - that he had all the women swooning and bending over backwards for him as he dramatically nuzzled into my shoulder with real, theatrical tears. Needless to say, Ty had his own special round of Bingo tonight and his own special prize was

Not much to report

I don't have a lot of new information to share.  Today was a very quiet day, just me and Ty snuggling and sleeping away the hours.  He did have an MRI - without anesthesia because he's such a trooper - and I was so relieved when it didn't show any inflammation of the meninges.  Meaning, Ty doesn't appear to have meningitis and that is a huge, huge relief. What does he have?  That is still a mystery.  He was very tired all day and he vomited several times, but his head pain is getting better and he doesn't need as much morphine as he did yesterday.  This evening he really perked up when Lou arrived after work, and we did a boatload of arts and crafts with him while he sat up and sang songs.  It only lasted a couple of hours, but it's definitely a sign of improvement.  For the first time in days he showed some interest in eating, too.  He had three or four sips of a yogurt drink and was able to keep it down.  He's making progress. On the down side, he deve

Pulling at the heart strings

This pretty much says it all.  Ty is not feeling so good and it is pulling at our heart strings.  The good news is that he improved over the last 12 hours.  The bad news is that we will probably be in the hospital for a few more days until we can figure this out and make sure he has the best treatment on board.  That's fine with me and Lou.  We miss Gavin tremendously, but we are also reminded of how lucky we are that we stayed away for so long, and now we just want our brave boy to feel better.  Like I always say... anything but cancer.  Well, almost anything.  There are so many variables that are involved in trying to figure out exactly what is wrong, so I will try to keep the medical details as simple as possible.  So far his blood cultures are negative for any bacterial infection, but it takes a minimum of 72 hours of observation before they can say he is clear of a blood infection.  Ty's nose swab tested positive for a virus - essentially the common cold - but his hea

Trolls are always lurking

I feel so stupid, I should have knocked on wood to scare away the trolls before I started bragging about how well Ty was doing.   In fact, Lou and I were so happy and so proud of Ty’s progress that we dared visit the inpatient side of the hospital to show him off after his MRI on Wednesday.   A n evil little troll must have been watching us that day because here we are four days later - as patients.   That evil little troll is laughing at us right now. The ugliest laugh imaginable. I can hear it in my mind and I hate him.    He was probably laughing at Lou and I when we went out with friends on Friday for a belated Valentine's getaway.  He snickered when he saw me go to dinner with a bunch of girlfriends to celebrate his clean scan last night.  How dare I giggle over a margarita and indulge in quesadillas (I gave up wine for lent).  Angry at us for smiling, he made sure that we realized how vulnerable Ty's health remains.  He reminded us that we should never get

Something is wrong with Ty

On Wednesday, we were relieved.   We slept soundly for three nights in a row.   Then, last night, Ty was restless.   We originally thought he had a belly ache and I was worried that maybe he caught that horrific stomach bug that’s going around.   But, then Ty began saying that his head hurts.   Throughout the night it was getting worse and worse.   Maybe he’s dehydrated, he really didn’t drink much yesterday?   Maybe he’s constipated and it’s causing pressure in his head when his stomach hurts?   Maybe he is getting a little cold and he has a sinus headache?   All night Lou and I shared these theories while we comforted Ty.   Finally, it was getting worse and we called the hospital.   We are on our way to Urgent Care right now.   Poor Ty is crying the whole way telling me “it weelly hurts, it weelly hurts.”   This feeling of helplessness is the worst, most gut-wrenching feeling I’ve ever experienced, and I have felt it over and over and over again over the last 19 months.    He