Showing posts from April, 2011

Dodged a bullet

Ty's MRI went well today!   His spine shows no signs of additional disease and that is obviously a huge relief.   In a nutshell, today's MRI just bought us another week of what has proven to be a rather pleasant uncertainty.     We still have to scan his brain again to see what is happening with what his doctor's believe to be new tumors in his cerebellum, but Lou and I (and all of you) are just praying that they are wrong… that those lesions are not malignant and that whatever showed up on Ty's scans last Thursday were some kind of fluke.   When we were waiting for the results, Ty asked me to go downstairs and get him a turkey sandwich.   Waiting in a line in the hospital cafeteria caused such anxiety that I was afraid I was going to faint right there.   It was such a horrible feeling, getting so worked up like that.   And it stayed with me until the doctor's assistant called us into the room.   "Here we go," I thought.   "Remember to breathe."

MRI tomorrow - please pray for Ty

Tonight is very stressful and scary.  It always is before a scan.  I actually have difficulty breathing normal just knowing that Ty has an MRI scheduled in the morning.  The scan is only of Ty's spine, we won't be following up with another brain scan for at least another week or so.  The doctor's ordered the spinal scan simply to prove that they are right, that Ty's cancer is spreading.  Lou and I agreed to the scan only to prove them wrong.  Please God, prove them wrong this time and every time.  Much thanks and love to you all.  I will share updates as soon as I can. 

This is dedicated to the one I love...

This is for the other man in my life (no, not Gavin :) ).  Lou.  My rock.  My soulmate. The best father in the world.  I first created this blog to keep everyone up to date on Ty's medical progress, but it very quickly became an outlet for me to share my thoughts and details about my day-to-day life since it has been turned around upside-down.  It has become a running joke in my household because Lou feels like the blog barely sheds light on how involved Ty's Daddy is every step of the way.  In fact, I often tease Lou and call the blog the "cancer mom chronicles."  Lou certainly deserves more credit than I give him, and I am glad he has such a great sense of humor about it.  I am certainly not going through this alone.    All kidding aside, I couldn't imagine going through this with any other man on earth.  He couldn't be more supportive to me or to Ty.  He is an amazing father and husband, and I'm sorry that I don't use "we" often enough

In God's Hands...

Image always has been.  But I will continue to do everything as Ty's Mommy to take care of him as best I can.  Sometimes I still feel so immature and clueless when it comes to being a mom.  Like, I wonder why God felt I was even deserving of these two amazing gifts.  What do I do with them?  What if I mess up?  Especially now, when I am in a panic over Ty's medicine or when I forget to bring a bucket to the supermarket with us and he gets sick in my hand.  I swear, if it wasn't for the emotional outlet this blog provides me and the amazing reinforcement and encouragement I get from everyone I think my insecurities would get the best of me some days.  Instead, you keep me so strong.  And he keeps me strong.  We had a rough day today because Ty was very emotional and he just kept crying on and off all day.  I asked him if I could just hold him for a while and see if that would help him to settle down.  As I cradled him (with Dora the Explorer in the background), I let my mi


While we are forced to simply wait and see what happens with Ty, I am embracing the uncertainty and maintaining a positive outlook.  And, I'm praying as hard as ever. In the meantime, we had a great weekend.  Gavin's birthday celebration on Saturday was loads of fun with all of our family and lots of cake... followed by a beautiful Easter Sunday filled with easter egg hunts, overflowing baskets, delicious meals, family and love.  The photos/video below kinda says it all.  GAVIN FINDS HIS FIRST EGG TY FINDS AN EGG GAVIN's FIRST "PEEP" HAPPY TY GIANT STEAK FOR TY ON EASTER (OF COURSE) BEST WISHES FROM TY

Deja Vu

The results from Ty's MRI on Thursday are frightening.  I needed a couple of days to come to terms with the news before posting, so I could explain what we were told and how we have decided to interpret everything. I needed to take some time to breathe again. The radiation is working extremely well on attacking Ty's tumor at the brainstem, but the radiologist discovered two new lesions in his cerebellum.  The final MRI report reads that they appear to be growing very rapidly and that they are indicative of lepto-meningeal disease.  If that proves to be true, our doctors say a cure is no longer likely but they provided us with several alternative treatments to prolong life comfortably. Let me tell you what we think of that news.  Unacceptable!  I was in a complete panic for a few hours after leaving the hospital (we were delivered the news just minutes before discharge on Thursday evening), however I settled down after a couple of hours and I was hit with such a powerful wav

Goo-nite ev-weebody, I wub you

Nothing new to report tonight because we weren't able to coordinate Ty's MRI with anesthesia today.  Instead he will be getting his "picture taken" tomorrow morning immediately following his final radiation treatment.  As always, Lou and I are extremely anxious to see the results.  We will post an update later tomorrow when we know more. In the meantime, Ty is feeling much better today.  He improved in leaps and bounds over the last 24 hours.  In fact, tonight he ate half a NY strip steak, a hot dog, grapes and cashews for dinner.  He is a force to be reckoned with.  My phone stinks, so the volume on the attached video is very low, but he is saying "goo-nite ev-wee body, I wub you!"  We love you, too.  Goodnight. 


Insert the sound of a record player scratching backwards, or a screeching car coming to a halt.  When I posted yesterday morning, we were waiting for Ty's second-to-last radiation treatment.  I mentioned that aside from an episode of headpain the night before, he was doing great.  Fast forward ten minutes... I walked into the treatment room with Ty and the pediatric anesthesiologist proceeded to ask me the usual... if he had any food or drink (of course not) and if he had developed any new symptoms such as coughing or vomiting.  "No, in fact he's doing really great," I said, and at that very moment Ty chose to start throwing up.  Radiation had to be cancelled yesterday, so today is NOT our last day.  If all goes as planned, we tacked on the extra day and will finish up tomorrow instead.  To say we are disappointed, exhausted and depressed is an understatement.  Not so much because of the extra day, but because of what has gone on in the last 24 hours since the cance

Happy Birthday Jackson

Jackson Bloom just turned six.   In lieu of birthday presents, he asked his friends to make a donation in honor of Ty Campbell.   In the eyes of any other six-year old I know, the world begins and ends with toys; and nothing is better than birthdays and Christmas for that very reason.   Jackson, you are one of a kind. Every day I am surprised by how caring and good people are, even those who are just six years old.   Thank you for being such an amazing kid. Be Bold.   Be Bald.   Speaking of amazing, I've been meaning to mention the slew of events we have been looped in on in support of St. Baldricks.   We have had several people reach out, many of whom we've never met before and one boy as young as nine, who shaved their heads bald in honor of Ty to support pediatric cancer research.   St. Baldricks is a great organization and I encourage you to visit the website if you are looking for some inspiration this morning. Mmmmm… I am still full from my

Countdown 3...2...1

We were discharged from the hospital in time to enjoy the tailend of the weekend, thank God.  We caught up on some sleep, and we're ready to tackle our last week of radiation.  We have three more days, and we are already in the waiting room ready to finish with day one.  This is Ty waiting patiently in his stroller for his "teetmee" (treatment).  I use the word patiently with much poetic license, because I'm sure most of the people that are sharing this waiting room would think the opposite, but I have seen much worse :) There's a lot of emotions going on inside that little head of his, and he just doesn't know how to express himself beyond crying out.  Not to mention how funky all of his meds must make him feel.  He is still on a low dose of steroids, causing his "roid rage" to kick in several times a day.  I've weened him from 10 milligrams of morphine every six hours (that's the largest dose he has EVER been prescribed) down to .5 mill

Hospital Triple-Play

It's late, just after 3AM, and we can barely keep our eyes open.   After a very long day we had to return to MSKCC Urgent Care around 10PM tonight, only to wait for hours on end before our room was ready.   Don't worry, Ty is fine.  Unfortunately his bloodwork showed that the dosing on his antibiotics is way too high and it may be dangerous so we had to return to the hospital for at least 24 - 48 hours in order to sort this out.   Vancomycin, the antibiotic he has been on many, many, many times, needs to be at a safe, therapeutic level when it is administered.   The way they ensure this is by checking the levels in his blood periodically.   For whatever reason, Ty's routine bloodwork that was drawn during radiation therapy this morning showed that the levels were twice as high as they should be and therefore dangerous to his kidneys.   Our nurse called to break the news to us about 10 minutes before we pulled into our driveway after what already seemed like a long day.  

Hot dogs are the new bacon

I mentioned that Ty is eating and drinking again.   What I didn't mention is that the ONLY thing he will eat is hot dogs.   With milk.   Hot dogs are the new bacon (which was replaced with steak for a brief period of time - but that's over, too).   I guess it has to do with the salt, because I'm told that the chemo and radiation affects how everything can taste.   He actually asks me to put salt on his hot dog and I make pretend to do so before feeding him.   I never used to give him hot dogs because of the nitrates, but I guess since he has cancer I am just happy to see him taking in some fat and calories any way I can.   Bring on the dogs for breakfast lunch and dinner.   Ty hasn't been able to drink liquids since January, and he showed little interest in drinking anything at all for the past few months.   Even when I did convince him to have a sip here or there I had to thicken everything (with a gelatin powder called "thick-it") to avoid aspiration.   I h

I am a lioness

Cancer picked the wrong family to f*ck with.   Doesn't cancer know that I will protect my baby cub with raw, fierce and violent determination?   I will never give up hope, I will never lose faith and I will never stop fighting for the love of my life.   Even after Ty is victorious, I will continue to fight ferociously for the rest of my life.   My mind will forever be consumed with the unfairness of this disgusting illness and I will never stop reading, researching and supporting efforts to find a cure to cancer in any way that I can.     F*ck you, cancer!   I HATE YOUR GUTS!   I want to reach into my baby's body, pull out his tumor and mutilate it using every type of violent, obscure device I can think of.   Maybe cancer had its eye on me for a while.   Thought I was some silly blonde girl who smiled too easily to hide a slightly frazzled life.   A girl who got overwhelmed easily trying to balance life, work and two babies on coffee alone.   A girl who was forgetful and weak.

Love is all around us

When I was in the hospital on Friday, completely harried and totally exhausted, I received a surprise visit from one of our new neighbors and it completely turned me around for the rest of the day.   She drove all the way down to deliver a beautiful basket filled with various contributions from pretty much every single neighbor in our development.   It brought me to tears when I began going through the gifts after she left.   And, of course, nothing gets Ty more excited than "pennies" - which is what he calls "presents" (he especially loved the Easter book that we've read about 100 times by now). On top of that, I learned that while I was away from home for more than three weeks, our neighbors rallied together (thank you so much, Marilyn) to   provide home cooked meals and non-stop groceries for Gavin, Lou and our amazing babysitter Amela.   What a tremendous help this was to my family.   I can't wait to get to know our neighbors better, we are very lucky!

Rain, rain go away

Not sure if anyone remembers this, but there was a Peanuts episode where Charlie Brown was constantly followed by a rain cloud (I'm not referring to Pigpen, but a time when Charlie Brown had the blues due to a series of unfortunate incidents).  That pretty much sums up the past couple of days for me and Lou, with beatiful moments of breakthrough sunshine that made it all worth it. Before I go through the laundry list of our own unfortunate events, I should preface this by sharing with you something that Lou and I used to say all the time before Ty was diagnosed.  We used to try and laugh off all of the uncanny bad luck we had when it came to the smaller things in life (like spilling red wine all over the new white couch, fender benders, the boiler breaking on the coldest day of the year and the refrigerator breaking on the hottest...), but we always agreed that we were otherwise so incredibly lucky when it came to the more important things in life (our loving family and friends,

Oh no... I have to pee!

When I am alone with Ty, a trip to the bathroom is the most stressful experience.  Parents are not permitted to use the restroom in the patient rooms unless both occupants are not using it.  Ty's roommate is almost four and he uses the potty, so we have to go down the hall to the shared bathroom to wash up, get changed, shower and, obviously, go to the bathroom.  I totally get it and appreciate the rules because it is important to be as sanitary as possible for these little fighters, so I certainly don't want to come off as if I'm complaining.  That is not my point. I just thought I would share this with you, because it should be such a simple thing... wanting to brush my teeth before I go to bed... or wanting to wash up with a proper skin regimen and moisturize my face before bed... yet it is the complete opposite of simple when we are here.  If Ty is awake, I have to prepare him for the fact that I am leaving him alone in the room for a few minutes.  He is never happy a


Ty's MRI today showed significant improvement.  Lou and I just received the news back-to-back from our neurosurgeon and our neurooncologist, and I feel so excited and jumpy it's as if I've had 10 cups of coffee.  I am crying, laughing, biting my nails and practically peeing my pants :) Ty's tumor shrunk, the compression on his brainstem is significantly reduced, his ventricles look smaller and there has not been any progressive disease or infection found in the rest of his spine.  We were warned prior to the MRI that we should be prepared in case the tumor looks larger.  Since radiation often works slowly and continues to work for up to 3 months post-treatment, we were told that when scans are done this early into radiation therapy, a mass might swell or become necrotic and the imaging can be unclear as to whether or not treatment is working (i.e. the tumor might appear larger when it is, in fact, dying).  The point of today's MRI was simply to rule out any glarin

An ugly pair of shoes

Look at this guy!  He's doing okay.  Lots of nausea, but lots of smiles, too.  Here he is in his "activity chair" getting physical therapy.  He spent a lot of time sitting up like this today and playing games.  He has come such a long way over the past couple of weeks, it makes my heart sing.  Sorry it's sideways, but I can't seem to fix it. Tomorrow Ty will have an MRI to rule out whether or not the tumor might be causing his incessant nausea.  In my heart I don't think this is tumor related, but I am still a nervous wreck about it.  I will be praying all night, all morning and all day until we get the results following tumor board.  The doctors should also be able to deliver a better idea around next steps post-radiation, as well.  It will be a big day, please pray for us.  Pasted below is a poem that I've read this on several other blogs from moms who have lost a child or who are in a similar situation as my own.  I don't recall ever reading it

Getting stronger every day

Ty is still very nauseous. He was unable to keep down even his meds today. But in between getting sick, he was happy and playful. What an amazing sport he is. Such a fighting spirit. We played Bingo again tonight, and he was able to spin the cage for the first time in months, which he was very excited about. I was talking with one of his doctors today about how far he has come despite endless complications and the fact that he has what is known to be the most aggressive types of childhood cancer. We agreed that he is beating the odds and I said that we have him and his other doctors to thank. Ty's doctor corrected me and said that Ty is the one that's doing it all and that he deserves all the credit for his amazing strides. That Ty alone is the one who is beating the odds. I thought that was surprisingly humble and very sweet of him to say about our little fighter. And so true!

Let's have a good week

Ty had a terrible day today?!?!  He had head pain and he was throwing up all day long :(  No one is sure why, but we think it may be because we are tapering the steroids and so it may take a couple of days with each change in dosage for him to adjust.  Hopefully his nausea and head pain will subside by tomorrow or Tuesday.  At the same time, Ty is physically showing a lot of improvement.  His hands and arms are stronger, and he is beginning to move his right leg a tiny bit.  It's very exciting for all of us, especially Ty.  His face lights up when we show him how excited we are with each small improvement.  Love that smile of his :)  Radiation tomorrow.  Looking forward to a good week!

Another week down - Ty is still doing well

I haven't posted for a few days because Ty was actually doing so well there was a possibility we were going to be able to go home as early as Friday and I didn't want to jinx it.  It didn't matter, because Ty ended up taking some small setbacks regarding his infection anyway and it was decided that we should stick with the original plan and tough out the rest of radiation therapy inpatient at the hospital.  I had a feeling it was too good to be true :) No worries, though.  Ty is feeling great.  In fact, his speech has improved so dramatically that he is saying things that I never heard him say before.  It's as if he's been harboring this vocabulary that he just wasn't able to show off yet.  I can't even tell you how good it feels when Ty helps me to read his books aloud and participates in some of the interactive shows like Dora by saying the answers out loud.  The baby that was diagnosed with a brain tumor in August is acting like himself again, only now