Saturday, March 31, 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 physical therapy that we tricked him into.  I would tell him that yes, he can move his head, and he would move it back and forth in anger when he said, "no, no, no I can't!"  I can't imagine how hard it must be for him to be so immobilized after coming so far.  Especially now that his right side, his perfect side, has become his weakest.  One thing that makes me sad is when his hands are under the blankets because that is something he never would have allowed before.  When his left arm was weak he used to yell, "my hand, my hand!" if it was ever stuck under the covers because he wanted it free so he could move it around.  Now he's okay with it if his hands are under the blanket.  He even asks me to cover his right hand sometimes.  I let it go for now.

He also got upset today when he tried to eat some of his favorite things.  He had one noodle, one bite of cheese and one mouthful of yogurt - but he cried out and told me that they all "taste like poop."  I never heard him say something like that before, and I've never said anything like that in his presence, so I thought it was kinda funny that he came up with a phrase like that on his own.  Now he keeps telling me that he wants something really yummy, but he doesn't like a single thing I have offered, from candy to ice cream to chicken and bacon.  Nothing.  He's making me a little crazy because I feel like I am on a wild goose chase trying to satisfy his hunger.  In the end, I hope the shake in his G-tube will fill him up and the insatiable, steroid-induced hunger will settle down.

Ty has been sleeping well at night.  He only wakes up maybe once or twice for pain meds.  Yesterday he had a lot of pain toward the end of the day, but today has been really, really good so far.  He generally feels comfortable!  When I exercise his legs, he can hold up his right leg in a bent position for about 5 seconds.  It's such deja-vu!  That was the first sign of hope when his steroid myopathy began to subside around the same time last year.  We used to bend his knees while resting his feet on the bed and have him hold up his legs as long as possible.  I see so much improvement from just days ago.  And he stopped whispering because he recovered his vocal strength.  So much reason to hope for continued improvement.  When I see him lift a finger or pull back his leg an inch I get giddy with excitement.   

Tonight the dosing on his steroids will drop down again. There will be an adjustment period where Ty may suffer a bit more until he gets used to the lower dose, but it's important to lower the steroids enough so he can move into another facility and focus on his physical healing.  We hope to transfer by mid-late next week.  I don't know how long Ty will be inpatient at the next facility, but I imagine at least a month or so.  We are also working on arranging daily treatments in a hyperbaric oxygen chamber and we will be making our regular bi-weekly trips to Sloan Kettering for his Avastin infusions and mediport maintenance.  For all of the amazing friends and strangers who shared studies with me on the benefits of Bevacizumab with regard to radiation necrosis, I just wanted to let you know that it is the same drug as Avastin and his doctors are totally on it.  In fact, I think Ty is still with us after this catastrophic setback because he already had Avastin on board (and of course, by the grace of God). 

I spent last night with Gavin and returned to the hospital late this afternoon.  What a treat it was!  Not to mention how nice it was to sleep in my own bed and shower in my own bathroom. Gavin is the best little boy in the whole world.  This morning he handed me the phone and told me, "I want to talk" so I dialed the hospital.  "Hewwo, Ty.  I wub you.  I miss you.  Hewwo, Ty."  Then I heard, "Hewwo Daddy.  I wub you."  It was soooo sweet.  He doesn't really understand what's going on, but he gets it enough and he is handling it so well.  I am so grateful for this.  Every time I see him I swear he looks older.  Makes me sad and profoundly proud at the same time. 

Thank you all so much for your kind words about the Candy House.  It's such a hit!  :)  We've added a lot of nice new touches today after a visit from the candy cart last night.  The candy cart is a really nice thing that is funded and hosted by volunteers every week.  Little things like this make the kids happy and gives them something to look forward to during such long days in the hospital. 


Here's just a quick picture of my latest handiwork.  I've been filling hospital syringes with chocolate frosting to add detail to the stained glass windows.  I also used it to create a vegetable garden in the yard (thanks again, Meghan, for the "Veggie Tales" fruit snacks and to Theresa for the inspiration).  Tomorrow we will be adding some cotton candy trees and potted plants. 


Goodnight. XOXO. 




Friday, March 30, 2012

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 wouldn't be easy to find.  Candy corn, candy canes, candy dots (the kind that come on a roll of paper), razzles, bottle caps, rainbow sprinkles and so much more... this kid knows his candy.  Most importantly, blue gummies - and any kind of blue candy whatsoever.  One of our favorite nurses, Sue, heard what we were doing and went to Dylan's candy store that night to pick-up all of the rare finds and she came back the next day with so many amazing things.  We went to work with a jar full of frosting and a shopping bag filled to the brim with all types of candy imaginable. 

I wish I took pictures every step of the way, because this has really been an amazing work in progress.  We work on it a little bit at a time, and it has lightened Ty's mood tremendously.  He has me lay out all of the candy options on his bed.  We talk about what we are going to work on (the roof, the windows, the door, the landscaping...) we decide on what we want to use, and then I get to work trying to recreate what we discussed.  Lou added some very nice touches, too (note the front door and the stained glass made of jelly beans above it), and thanks to Meghan we added a stream with swedish fish in the yard.  This picture was taken yesterday.  We have since added lawn and some additional siding on the house.  Ty and I discussed what we should do when this is finished and Ty liked it when I suggested we make this a guest house and move onto building a castle next :)  Luckily there are a lot of finishing touches in order so we can keep this going for a couple more days.


I was planning on going to bed earlier tonight, but now I think I'll have to unwind a bit more after the night we had. 

Ty was actually tired and ready for bed at 8PM.  Lou was on his way with our favorite sushi so I convinced Ty to snuggle up with a new stuffed animal and he fell asleep peacefully, nice and early.  I could not wait to eat a delicious meal and talk with Lou in peace, it's been so long since we had an uninterrupted dinner together.  What a nice idea, I was beyond excited about how everything seemed to work out.  Then, Ty woke up with a bit of a tummy ache.  By the time Lou arrived, I had already had to change his PJs and the sheets because of the mess he made in his pants, poor baby.  I asked the nurse to order a stool culture because I'm afraid he might have C-difficile after the antibiotics he finished last week.  Then, we sat down to eat and it happened again, right in the middle of our appetizers.  A meal interrupted by the most disgusting poo you can imagine.  It was a river and it was even on the floor!  We worked as a team, we cleaned him all up, we sat down to try dinner one more time and of course, it just wasn't meant to be.  One more change of PJ's.  Another set of sheets.  A very upset little boy.

Ty ended up being wide awake and ready to party all night.  We couldn't convince him to go back to sleep until just before midnight.  Poor Lou was so tired, he was ready for bed a couple of hours ago!  This is just par for the course, I guess.  On the plus side to all of this, Ty was such an adorable sport through everything and he actually showed some promising signs of physical strength while we were moving him around to get him clean.  We could feel him pull back on his legs a bit.  Lift his arms a bit.  Roll his head to one side.  All of this shows so much potential.  And, he got his voice back.  It comes and goes in and out of a whisper, but when he wants to be heard he can speak loud and clear.  And what a beautiful sound it is.  Even when he says "mama...mama...mama...mama...mama..." one hundred times in a row, I am grateful for the sound of his adorable little voice :)

Goodnight everyone.  Thank you for your love and support. 



Thursday, March 29, 2012

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 clean and comfy because he had to get his needles.  Just so you can see why this is such a traumatic event for him every week, I included a photo of the needles that are used.  He gets two in his chest every time.  It's heartbreaking to watch.  These kids are amazing. 


Ty is getting a little stronger and the tone in his arms and legs looks better.  He is opening his hands a bit, and his left leg is showing promise.  Last night he couldn't wait to tell me "look mama, I move my arm!"  This morning, "look mama, I can move my head!"  There is so much reason to have so much hope.  I will never ever let go of that.

I don't have much time to get online because Ty is emotional and very needy.  I wish I had more time to write, but for now I will try to at least share some updates on a daily basis.  In the meantime, I heard that Gavin pooped on the potty for the first time yesterday.  I'm so proud of him and excited at the prospect of returning home to a potty-trained boy :)  Here he is having fun with Aunt Debi yesterday.  Helping to feed the horses!  He's the best. 

Tuesday, March 27, 2012

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 whether one is awake or sleepy. The brain stem consists of the midbrain, pons, and medulla oblongata.




Ty's original tumor was surgically removed endoscopically through the nose and mouth.  We didn't get all of it, and what was left was a piece that was closer to the brainstem area that was too dangerous to remove.  We treated with chemo but Ty got so sick, there were a bazillion complications, and in the end the tumor was a raging beast, growing rapidly, and his neurosurgeon went in again for an almost complete resection last February.  There was tumor artifact left on the wall of the brainstem/medulla, but this time we were able to go to radiation to destroy it.  There is more to the story, of course (the metastases in the cerebellum, additional radiation, countless CNS infections) but there's no need to recount all of that horror right now.

Radiation saved Ty's life.  His cancer is an extremely aggressive one and we don't ever doubt our choice to move forward with this option.  Unfortunately, Ty is now suffering from radiation necrosis and it is devastating.  Children under three years old can't even receive radiation.  Ty was only three and four months.  The risks are great.  I still can't believe that after all of this time, with so many advances in cancer care, that children are radiated in the same machines as adults.  That the chemo they receive is the same as adults - stronger actually.  That the advances in pediatric cancer care pale in comparison to those geared toward common adult cancers.  It's tragic and it's callous.  Lou and I so desperately want to help to change this in any way we can, and when Ty's health allows us more time we vow that we will find a way to better contribute to the cause and we hope we can inspire others to do the same.  But, I digress.  Back to Ty's current situation.

Today, Ty can't move his arms or legs very much at all. Both of his hands are in a very rigid, cramped position at all times. He can't hold his head up and his trunk is too weak for sitting. His head slumps down to the left. He is back in diapers. His chewing is weak and his speech is a whisper.  We are being advised to prepare for this new reality.  That physical recovery from this kind of brain trauma is not likely.  Of course, Lou and I believe otherwise.  Always believe. 

Our doctor provided a good analogy to help us understand what has happened.  Imagine that Ty's healthy brainstem tissue was coated with a layer of tumor that was being destroyed by the radiation over the short period of time during which it was administered.  At some point during the treatment, the radiation harmed some of the healthy brain cells, too.  They weren't killed, but let's imagine that a cluster of healthy cells were aged 90 years in the process.  So, they survived radiation and allowed Ty to heal and to grow stronger every day - still making all of those critical connections between the brain and the rest of the body, until one day they reached their maximum lifespan and began dying off (necrosis).  That is why radiation necrosis doesn't present itself for a year or two - even ten years - post treatment.   And when it does begin, especially in a critical area like the Medulla where the slightest change has a tremendous impact, the result is devastating - sometimes even terminal.

Everyone is pretty sure that Ty's latest episode has peaked, and that the necrosis has slowed down or stopped.  Can it start again?  Yes.  At any time.  There may be the next layer of healthy tissue that begins to show treatment effect.  But, as I said a bazillion times before, we have to believe in our hearts that this won't happen again. Ever. 

Ty seems to be approaching a safe zone because we are finally seeing slight signs of improvement.  The biggest one being his pain... it is finally slowing down.  We dropped his morphine dose down and spread it out a bit.  I am also seeing some physical improvement.  It is minimal, but I swear it fills me to the brim with positive thoughts and hope for amazing things.  Why wouldn't it?  We have seen amazing things from this little boy before.  Many times.  Today I swear I saw him open his left hand and lift a couple of fingers.  Lou got tough with him and made him straighten out his head to watch Max and Ruby on the TV above instead of on the ipad that we placed in his bed.  After a long, stubborn fight Ty proved that he was able to do it - to move his head.  His tone in his legs has diminished, he isn't so stiff.  We are happy about all of these tiny triumphs.   

The doctors are realists.  And I appreciate it.  I truly do.  We need to know what we are facing, and how challenging the road ahead may be.  But, I am Ty's mom.  Lou is Ty's dad.  We will be hopeful to no end.  We have seen him overcome even worse news with miraculous triumph, and we expect the same this time around.  If that doesn't happen, our faith will remain stronger than ever and our love for Ty unwavering no matter what. 

Yesterday was a day for being completely destroyed.  I was depressed beyond my own comprehension.  Throughout this entire journey and all of its ups and downs, I don't think I ever stared at a wall, blank, for as long as I did yesterday afternoon.  I even went home in an effort to enjoy Gavin and I felt like a stranger to him.  I felt as if I was incapable of being his mom anymore because I was just too sad to function.  As much as I wanted to be, I simply was not there.  I cried and I prayed and finally I found respite later last night. 

I was an emotional wreck when Ty's physical therapist stopped by the house and she gave me the best advice of anyone yet.  She said we should consider putting Ty in an inpatient physical therapy facility to squeeze out the most recovery possible during these most critical weeks.  At first I couldn't fathom it... more indefinite time living within the walls of another medical institution.  More time away from home, away from Gavin.  But it didn't take long for my dread to turn into inspiration.   

When I called Lou on my way back to the hospital last night, we were both feeling the same way.  We were energized.  We were excited.  We were practically talking over one another with ideas on how we can help Ty recover to his maximum potential.  We are still in the process of researching facilities and thinking about our next steps, but at least we know the direction in which we want to go - and it is 100% focused on recovery.  We will be there for Ty every step of the way, as always, and we will celebrate every small step with all of you.

I entitled this post "the last laugh" because I pray this latest setback is the last one Ty will have to endure.  I imagine cancer wanted to have one last chance at hurting us before we destroyed it for good.  But I hope to have the last laugh when all is said and done.  To watch my boy do amazing things so I can laugh out loud on his wedding day.  Cancer never wins.  Even if Ty eventually dies of cancer, then the cancer dies too.  Nice try, cancer.  Handicapped or not, I know that Ty's future will be a happy one.  God is guiding him and no matter how all of this turns out, I know we will all be okay.  So HAHAHAHAHAHAHA!!!!!  Fuck you. 

 

Monday, March 26, 2012

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 that I can do nothing but watch him suffer and pray with vigor. 

I am thankful for the power of prayer and how it often brings me peace, but right now I feel the complete opposite. I want to scream.  I want to RIP my hair out.  I want to fall to the floor and pound on the tiles.  Worse, I want to throw myself out the window - straight through the glass and onto the pavement - it would hurt so much less.  I would love to feel some real, physical pain.  I want it so much.  That way, I can focus on something more palpable than the emotional torture of living here in hell.

I hate this place.  This disgusting hospital where the grimy walls are closing in on me.  With the beeping and the alarms and the casual attitude of the nurses.  My disrespectful roomates and their stupid-a$$ ringtones at midnight.  I guess I shouldn't direct my anger at these people, I know he is getting excellent care, I am just mad that I am here.  That Ty is here.  Again.  I can't seem to control myself from bouncing between anger, fear and pure madness.  I am losing my mind.  I am totally deflated.  I am broken. 

Sometimes, though, when I am rolling in and out of sanity, I become overcome with serenity.  I embrace those moments and in the calm I remember that I have been here before.  Oh so many times.  That there is still a wealth of uncertainty ahead and I need to hold onto that uncertainty because it fuels my undying hope. 

And it is always better to hope than to despair. 

  

Sunday, March 25, 2012

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 before - and all I keep thinking is how much I hope this is his last trip in an ambulance, ever.  Calling all prayers.  XOXO.

Saturday, March 24, 2012

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 scans were free and clear of any issues.  Cancer-related and otherwise.  No swelling or inflammation was seen.  No intracranial bleeding.  No bacterial infections grew out on the cultures.  At the time, his doctors dialed up his shunt to try and pull off more CSF fluid for a culture, as well.  Nothing.  It must be viral.  Since he seemed to be improving slightly at the new setting, and his overall weakness was improving, we went home to wait out the nasty bug without resetting the shunt.

After a week of getting better little by little, Ty began to decline quickly.  On Monday, his head pain was bad enough that I had to increase his morphine.  On Tuesday, so bad that the morphine was around-the-clock.  On Wednesday, we were back inpatient looking for answers.  Could this still be a virus 19 days later?

The first step was to dial down his shunt again.  Perhaps it was too much for him and he was certainly showing signs of pain related to too much pressure.  It takes a day or so before any improvement would be seen, so we had to wait and see.  Ty only got worse.  Last night I noticed just how weak he was getting.  He went from .5 milligrams of morphine every four hours to 1.5 (and more when necessary).  His right side - the strong side - was getting just as weak as his left.  Last night I noticed he couldn't pull his right arm out from under the covers and he couldn't put it around my neck to snuggle - I had to help him.  I immediately told the team and they ordered a CT scan.  It looked great.  Ty's ventricles were, in fact, perfect.  But he was far from it.  We waited until we saw his primary doctor later today, and he immediately ordered a follow-up MRI.  We were all thinking the same thing... but no one dared say the word "tumor".  Regardless, something was happening.

The MRI showed that there has been another post-radiation episode.  And a serious one.  Ty has significant swelling in the medulla - the area where he received radiation - and it probably built up so slowly that it was undetected in previous scans.  He was given a stress dose of steroids to try and reduce the swelling and will continue on a course of steroids to treat the swelling over the next few days.  I'm confident it will work wonders, yet I'm terrified at the same time.  His doctor never makes any promises that he can't keep. He said that there is a good chance that Ty has suffered some permanent damage as a result.  To what extent, only time will tell.  All I can tell you is this.  Tonight, the morphine was making Ty so itchy and he couldn't even lift his good hand to scratch his own nose.  I have been doing it for him.  I know with all of my heart that this will get better.  I know that Colleen was right in her comment yesterday, that all of our highest goals for Ty are still attainable.  He gets knocked down over and over and over again... but he will walk again some day.  And he will throw a ball.  And he will paint a picture.  And he will hug me tight with both arms around my neck again.  

In a panic, I asked his doctor if we went too high on the doses during radiation.  After all, he had a serious bleed that left his left arm handicapped back in December, and now this.  I already knew the answer... Yes. We gave him a very risky dose of radiation because we had no choice.  Ty's cancer is a very serious one, and our only chance was to take such a chance.  Post-radiation side effects like these can go on for years and years and years.  I can only imagine how prematurely old and gray I will be by the time Ty is in his twenties.  While he is out surfing in the sun, nonetheless.  That's how I like to picture him as a young man, anyway.  Handsome and carefree with sun-kissed skin.  Changing the world, and enjoying every ounce of life while doing so.  He is so special.  I thank God every day for him.  Several times a day.

Please say some extra prayers for his healing.  Thank you, everyone.  We love you all so much.

Ty waiting for CT.  Our little fighter with crazy bed head.

Thursday, March 22, 2012

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 certainly doesn't help that I gave up wine for lent! My only source of relaxation. God and I have been sharing some giggles over this, and I think he is happy to see me sticking to my promise (as silly as that sounds). The ventricles in Tys brian were slightly larger since two weeks ago (the ventricles are open reservoirs that expand as fluid builds up in the brain. As they expand, intracranial pressure increases). The official report used the word "minimal" increase, but Ty's doctor thinks that may have been enough to tip him. So, the neuro them has adjusted the settings on his shunt again hoping we will see improvement over the next day or so. In the meantime, we need to stay in the hospital for observation. I know it's confusing, but there are just so many details involving the shunt, the settings, the ventricles and the pressure that it's hard for me to explain. Tonight, he is sleeping well and when awake he feels okay at best. We hope to see improvement tomorrow when I have more energy to explain the shunt settings and why we think that may be the cause of all this. In the meantime, I am missing Gavin like crazy tonight. Love to you all, and thank you for your loving support. Xoxo.

Tuesday, March 20, 2012

Regressing

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!

Sunday, March 18, 2012

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 wrapped around my neck I told him:

"You melt my heart." Something I say often.
"HAHA!" he said. "Mommy.  You are like an icepop.  A boo (blue) icepop."
"What?" I teased. "Why are you calling me an icepop?" I asked.
"Because you aw-ways melting!" he answered. 

So cute.  He's right.  I guess I'm like an icepop. 

Ty's left side is still very weak, and his eating is terrible.  We are back to square one on so many levels, and we are just waiting for the quick improvement that everyone keeps promising us.  Throughout the day, however, there are times when he is much stronger and vice versa.  For example, today he was scooting with his left hand palm side down, which is much, much better than when he drags the entire arm and his knuckles are sweeping the floor.  He was also bearing some decent weight on his left leg while standing, which is also an improvement from earlier today when he was very stiff and couldn't straighten out his leg or ankle to get his foot flush to the floor.  So, I guess his weakness comes and goes.  I just want it to be g...g...gone!

Here are some pictures just for fun while we wait patiently for his improvement.

Ty has strategically placed his foot over the cup to hide his candy from Gavin

Can you blame him?  Gavin looks like he's ready to swipe the candy at any minute :)

Trying really hard to lift his weak arm.

He did it!  So proud of himself.  His face is still pretty swollen, especially on the one side.

Beautiful Gavin

Peace out.

Before signing off, I just want to mention how wonderful it was so see so many great friends on Friday night at the event in honor of Robert Manzoni.  We had a LOT of fun, maybe a little too much :)  Thanks to everyone, for always being so supportive. 


Friday, March 16, 2012

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 ones I know, some of these are pretty universal...

I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.

I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him.

I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob's future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith...

I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel... love good food... talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son.

Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed."
-- Maria Lin

Wednesday, March 14, 2012

Improving!

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 get the heck out of there!  It was just so busy today and every little thing was taking sooo long.  I was very anxious to be back there so soon and I wanted to jump out of my skin by the time 4PM rolled around.  Luckily we were on the road soon after that and got home around 6PM.  Enough time to play with Gavin, read him books and smother him with hugs and kisses. 

Ty's eating is still terrible, but his energy level was so much better today.  He tried walking, but had a really tough time - can't seem to straighten out his left leg and he's just so weak overall.  The good news is, he tried scooting again and he was able to make it all the way across the floor in our kitchen!  You should have seen his smile.  Every small triumph makes him so happy.  It's amazing that when my eyes are filled with discouragement and sadness over his setbacks, he seems to instead find joy in every accomplishment.  I am so honored to be his mommy.  He's amazing. 

Ever upward! 

Reflections


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 ago today


Ty just a week ago - right before our latest setback

He has grown so much, and in so many ways.  Today I realized that he is finally putting on some weight and getting taller.  I cleaned out his closet of all the pants that were getting too short on him and I enjoyed doing it!  Can you believe some of his PJs were still size 2T?  He's four and a half!  Despite how much has changed, I also feel like we remain stuck in this same never-ending nightmare that began on August 11, 2010.  With this latest setback, it's as if we are still in the middle of a guessing game and I'm not 100% convinced that this is viral (but I certainly hope it is).  Ty is very sleepy.  He was only awake a total of eight hours both yesterday and today.  He has headaches, but they aren't nearly as bad as they were.  He is super whiney and irritable.  And, he is giving me hell about eating again.  We will be returning to the hospital tomorrow for an infusion and I am looking forward to seeing if the bloodwork tells us anything.

When it comes to food, he is repeating much of the strange behavior that I have unfortunately seen many times before.  I have to take him to the cabinet to look at the food over and over and over again throughout the day.  Take him to the refrigerator.  Read off a laundry list of things I can make him.  Nothing appeals to him.  He only asks for sour patch kids - and he only eats the blue ones.  I convince him to have 1 piece of a grape instead (1/4 or a grape - that's it).  He tells me he wants noodles - I get so excited and cook him up some fresh macaroni, but he eats only four of them.  He asked for chicken at 5PM today.  I was so unprepared so I frantically defrosted some in the microwave, found a tank for the BBQ grill in the garage, got that all set up, cleaned the grill and made him some perfect chicken breasts just the way he likes it.  After all of that work, he wouldn't even put it near his mouth.  So frustrating.  It will take time, I guess.  He was doing so great, it makes me sad to see him regress like this. 

 I will be sure to let you know how things go at the hospital.  We are also meeting with a doctor to get his left wrist and ankle fitted for a brace.  It should help him with his physical improvement on his left side and allow him more confidence when trying to walk.  Fingers crossed!  In the meantime, I should get some sleep because we have a very early start tomorrow.  Goodnight everyone.  Thank you, as always, for everything. 

Tuesday, March 13, 2012

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 all of this physical weakness should be attributed to the time spent in bed.  His physical therapist came to see him today and she said that he should be able to bounce back very quickly.  He's just not feeling well enough yet to really try.  I hope she's right. 

Another huge plus, Ty's headaches have finally subsided.  God, they were so bad just a couple of days ago, I pray he never has to experience such pain again.  I was so utterly helpless I think watching him suffer like that shaved a few more years off of my own life.  It was unbearable. Today he complained only twice and I had to resort to morphine only once - and I tried only a half dose which seemed to work well. 

He hasn't vomited since we've been home, and tonight he showed the first signs of having an appetite again (he ate 4 grapes, 3 strawberries and 2 bites of cheese - at least it's something!).  Lou and I decided to take him off the IV fluids because he seems to be drinking enough juice on his own throughout the day, along with whatever shakes I can put through his G-tube.  This is a huge relief because he was getting so swollen and peeing every 20 minutes.  He is still on an IV pump 24 hours a day, though, that I have to change once a day for the next five days.  That's running one of his antibiotics (vancomyacin).  I administer the other antibiotic every 8 hours via his second port and that has been going smoothly.  So, managing his care from home is going very well and he is a much happier boy now that we are comfortable at home. 


This picture is from tonight and it's the best Ty has looked in days.  It makes me so happy.  The rash on his face has really faded, he is sitting on his blanket on the floor, and even though we had to prop him up with the ottoman to support his back, his posture isn't too hunched over which shows that he is getting some of his core muscle strength back.  Now I just need to get him in a bath and cut his hair! 

I don't know if we will ever really know what happened.  If we take Ty off the antibiotics and he ends up with another shunt infection - then we will know for sure that he had a bacterial infection in his CSF that stuck to the shunt.  That would be the worst case scenario, though, so we certainly don't want that kind of validation.  Nothing grew on any of his blood/urine/stool/CSF cultures, but some of those samples weren't sent to the lab until after antibiotics were already on board which means they aren't 100% accurate.  Ty also became neutropenic so we couldn't use the presence of white blood cells as an indicator of infection because his bone marrow wasn't/isn't making any.  Most doctors are deducing that this was a really bad viral infection that just needs to run it's course.  I was happy when they first mentioned a virus because I always think of viruses as 24- or 48-hour bugs, but I was soon corrected and told that they can be far worse than that.  Whatever it is, Ty is over the hump and getting better.  We are giving him his GCSF shots at home to boost his white blood cell count and hopefully he won't be neutropenic anymore when we go into the clinic for his Avastin infusion on Wednesday.  I want to start up his chemotherapy again as soon as possible (it's been on hold as a result of Ty's illness and that frightens me - a lot).  

Everyone has been so nice to us through all of this.  Thank you, so much, for reaching out every day and checking in on Ty.  Your encouragement and your prayers mean so very much to our entire family.  And thank you, Ginny, for our surprise visit at the hospital!  I brought the beautiful tulips home with me and Ty named the balloon puppies Max and Morris.  The tulips make me smile every day and Gavin and Ty love the balloons.  To everyone who follows Ty's story, I don't know what we would have done without all of your tremendous support.  All of our love to all of you. 


Saturday, March 10, 2012

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 saved her life. 

I registered for free via the following website, and anyone can register - it is so simple.  http://www.dkmsamericas.org/  I noticed this morning that one of Ty's supporters posted an inspirational story to Ty's facebook page.  He recently registered with "Be the Match" and he was contacted to donate bone marrow on March 20th.  Wonderful news, Brian!  What a courageous thing you did to help another stranger who is fighting for his or her life.  Thank you, thank you, thank you!!! 

Friday, March 9, 2012

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. 

Thursday, March 8, 2012

Bingo!

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 arranged.  Tonight he decided that instead of using the usual chips, he would mark his board using candy (swedish fish, starburst and gummy bears).  It was very creative and he was so pleased with himself.  We also continued to decorate his room with various arts and crafts and stickers throughout the day.  We've been in four rooms so far this week, and this one is our favorite.

Ty had a very good day, but it's not shaping up to be such a great night.  In fact, up until an hour ago I was wondering if I should push to go home as early as tomorrow.  As those thoughts were swimming in my head, however, Ty woke up in severe pain.  He was absolutely freaking out because his head was hurting so bad.  He was inconsolable and I couldn't even get a word out of him through the screams.  Reluctantly, I had to order morphine.  He hadn't needed any pain meds since 9AM this morning and I was so sad to see him suffering like that again.  This whole week has been really bad as far as the pain goes.  In fact, on Monday morning he had one headache that was so excruciating that Ty went unconscious for a few seconds because he wouldn't breathe.  It was horrific.  I'm 36 years old and I've never felt such pain.  I want it.  I wish it was mine more than you can imagine.  I lay next to him and stare at his face while he's sleeping praying for a headache of my own.

I just want this nasty virus to leave him alone.  He's getting there, it's just taking way too long for my liking.  If he has a great night tonight, maybe we can discuss going home with the team tomorrow.   I would love to get him home, but not if he is going to have those kind of episodes at home.  We'll see how he does over the next 18 - 24 hours.  I am not attaching this picture for more sympathy (well, maybe a little) but I couldn't capture any happier photos and I wanted to show you all how swollen his poor face is.  His eyes especially.  He gained 2.2 pounds over the past week and he hasn't eaten a single thing.  He is retaining a whole lot of fluids, it's just so strange.  I am getting so anxious for this bout of illness to be over already.  I want him to enjoy the beautiful weather we've been having.


Have I told you lately how much I love our nurses here?  They are the best.  Everyone here is so wonderful, I feel so lucky to be surrounded by such caring people during our most difficult times. 

I went home for a few hours yesterday while Lou was here so I could spend time with Gavin. It was so great because I was missing him so much!  He was so sweet, he asked me if Ty got sick because he ate too many jellybeans.  So cute!  After I put him to bed I took a long, hot shower and got back in my car to drive into the city.  There was the most beautiful full moon and Ty's star was shining so bright.  It made me feel happy.  He will be back to himself soon.   

Wednesday, March 7, 2012

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 developed a rash on his face that you can kind of see in the picture below.  They are observing this closely to make sure it doesn't spread.  His eyes are very swollen, too.  No one can really explain that.  It seems more and more like this is probably some kind of viral bug and Ty just needs to wait it out until it finishes running it's course through his poor little body.  I have a good feeling that tomorrow will be a better day, and perhaps we can even talk about going home Thursday or Friday.  I will keep you all posted, of course.  In the meantime, here is a picture of him sleeping soundly.  I bought him a couple of Squinkies on Sunday to cheer him up and he hasn't let go of them since!  Those are two tiny little cars that he is clutching in his hand.  During his MRI one of the nurses changes his sheets and lost the red one.  He panicked and I had to get a volunteer to sit with him while I "looked for it" outside (AKA: Ran to the toy store across the street.  Bought the only two remaining bags of Squinkies.  Opened them frantically looking for a red one.  PHEW!  There was a red one). 


We need to figure this out and get Ty back on his chemo, too.  His white blood cell count went up today (Yay!), so once we feel he is over this infection we can get him back on treatment.  Tomorrow will be a good day. I just know it. XOXO. Goodnight everyone. 

Monday, March 5, 2012

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 head and neck pain is too severe to be just that.  His white blood cell count is practically non-existent, meaning he is neutropenic, so we had to stop his daily chemotherapy for now.  Unfortunately, the neurosurgeons have been unsuccessful in getting a sample of his cerebral spinal fluid for cultures so we can't be sure if he has a bacterial or viral infection of the central nervous system (CNS). Given how much back and neck pain he was showing, we suspect it may be related to the swelling of the meninges (aka meningitis) as a result of a bacteria or virus that he may have been exposed to the last time his mediport was accessed - or even when his G-tube was changed on Wednesday. 

It isn't likely that Ty contracted an infection that is contagious by general contact, nor is it airborne (so don't worry if you were with him over the past few days).  Ty's CNS is more vulnerable to infection than everyone else because his shunt tubing allows for passage between his skull and the rest of his body.  Microscopic bacteria can travel up the foreign body from his abdomen and penetrate the CSF which is otherwise highly protected from such exposure.  So, a minor bug for you and me could mean a CNS infection for Ty because of this variable. 

There is a lot of debate over the shunt - as always.  I will spare you those details for now.  The team has adjusted the setting to see if they can pull off enough fluid for a culture over the next 24 hours, and hopefully that will be the end of the debate.  Of course, if a bacteria is found in his CSF there is always the likelihood that they will want to replace the shunt.  Let's hope not.  No more surgery.  No more shunt revisions.  Ty has already had seven revisions over the past 18 months!!

In the meantime, Ty's fevers are being managed with Tylenol and they aren't spiking too high.  He has some heavy duty antibiotics on board and they already appear to be working.  His pain is being managed with morphine and his attitude - as always - is that of a viking.  Well, a comic viking.  One that likes to tell cute jokes while swinging a spiked club.  Ty likes to keep everyone laughing.  I wish I had a picture to prove that to you, but trust me, he was flashing a lot of smiles today despite all of this.  Thank you so much for your love and support. 

Sunday, March 4, 2012

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.  An 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 too comfortable during this healing process because things can always go wrong at the drop of a hat. 
We really don't know what's wrong with Ty, but we're trying to figure it out.   Bottom line, he is sick. We will be staying at the hospital overnight to monitor him, and he is on morphine to manage his head pain.  His CT scan showed nothing of concern (no vascular issues, no shunt issues, no CANCER-issues, thank God) but his symptoms seem to tell another story.  They swabbed his nose and that culture came back positive for a virus, so some of the doctors thought he may have sinus pain but Lou and I know it's more than that.  His head pain is too severe to be the result of a common cold.  He also started throwing up his apple juice later today which is not a normal occurrence.  He has a stiff neck.  He seems to have waves of pressure where the head pain breaks through the morphine for a few seconds at a time.  Poor Ty.  We just need him to get well soon.  No more setbacks.  Ever upward!!



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 is so strong through his tears.  Lou has one hand on the wheel and the other holding Ty’s hand, and it’s almost as though Ty is comforting us instead of us comforting him.  He is the most beautiful soul. 

Knowing that Ty’s scan was beautiful and stable just four days ago allows Lou and I to feel less panicked in this situation.  We believe there is most likely a shunt malfunction that isn’t allowing the fluid in his head to drain properly.  That, or we are thinking he may have suffered another post-radiation hemorrhage somewhere in the brain that is causing swelling.  If it is a shunt malfunction, that may require another surgical intervention.  If it’s a bleed, steroids should be able to minimize the swelling rather quickly.  If there is infection or anything else like that… well, that would just suck.  All of this sucks, but we are hopeful that it will be easy enough to figure out what’s wrong and treat it fairly quickly.  I just want his pain to go away.