It's hard not to get excited when Ty's hair is growing back like crazy.  Yes... it is most likely because he is prescribed way too many steroids with a ton of side effects... but on the plus side, just look at these eyelashes!!  They are back!!  Of course, I need to remind myself that chemo is probably right around the corner again and this may be short-lived, but I just love it.  It's like I could crawl between those lashes and take a nap between a set of soft, quilted sheets.  Look at them... He is doing really well.  Oddly enough, steroids also give him some interesting cravings and a ferocious appetite.  Here's a typical meal these days.  Watermelon, cashews, milk, yogurt drink and tomatoes.  This is usually accompanied by a handful of bacon or a slab of steak. Gavin has become very supportive of Ty, as well.  Here he is getting crazy with his own set of boxing gloves (he was always kinda jealous of Ty's).  Another t...

I felt like a crazy person at the hospital on Tuesday.  When they told me we weren't going to get discharged because they weren't going to be able to deliver our at-home IV meds until the following day (due to a hospital error), I really flipped out.  I told the poor resident who had to deliver the bad news that she should be the one to tell my 3-year old that he can't go home because they made a mistake.  I told the social worker who was sent to calm me down that we refuse to pay the hospital for the extra night, regardless of whether or not it would be covered by insurance, because I wanted to hold them accountable. I asked them to deliver a message to the woman who was responsible for the error that SHE should be forced to spend the night in the hospital unprepared, and that if she has any children that one of them should be forced to join her.  If only she realized how much just one more night affects us, those kinds of mistakes wouldn't happe...

We are NOT home from the hospital tonight, but at least it has nothing to do with Ty's health.  It was purely the fault of administration at Memorial Sloan Kettering.  It happens.  We've been admitted to three different hospitals countless times over the past 6 months and it doesn't matter if we are there for 24 hours or 24 days, discharge is always a circus!  The good news is that Ty had his lumbar puncture today and he isn't showing signs of any additional infection in his spinal fluid.  Phew!  Menigitis avoided this time around (as we all know, this kid has suffered from enough bouts of meningitis, we were SO relieved).  All in all, he is feeling good.  He is very unhappy about spending another night here, but I have been able to distract him a bit with some new DVDs, snacks, and games.  Now we're just watching the clock until tomorrow morning.  Anyway, check this out! In the attached picture the entire Potomac...

Let's hope the other foot can follow.  I am showered, did the laundry, packed up the room, got Ty dressed... now we are sitting and waiting for discharge.  The doctors ordered a lumbar puncture today to make sure the Listeria (a bacterial infection that was found in his bloodstream the other day) hasn't made it's way into his central nervous system.  If the white blood cell count looks normal and if the discharge nurse can arrange for the IV antibiotics to be delivered to my house today despite the snowstorm, then we can leave.  There are definitely some obstacles, but I am hopeful :) The lumbar puncture will also give his oncology team a chance to look at the cytology in his CSF to again explore the possibility of whether or not his disease has metastasized and spread into the fluid. Please, God, no.  I am confident that they will not find any cancer cells in the cytology - but that doesn't mean I am not a nervous wreck at the same time.  Just...

The weekends are pretty quiet here at the hospital.  It's great to have Lou here on his days off, too, because we can provide one another relief throughout the day.  I did some laundry, took a nice, long shower, grabbed some coffee at a delicious bakery around the corner this morning.  It was so nice to get away from the hospital bed for a while.  I can't wait until my baby can experience the same... Unfortunately, on top of all the cancer stuff that's going on, Ty contracted not one but two infections while here at the hospital.  His mediport was exposed to a staph bacteria when he was accessed upon arrival, and then he somehow contracted Listeria in the PICU (some very unlikely bacteria that pregnant women need to avoid).  It never ends.  So, he will be on IV antibiotics for at least 14 days, and this may complicate things a bit as to when we can go home, but I still expect it to be early this week.  In the meantime we are hanging out e...

Today I am going to bed so happy.  Ty didn't have a very good morning and he slept quite a bit in the afternoon, but this evening he was simply edible.  He woke up with an appetite for the first time in days (he wanted steak and ice cream), he was wide awake with few complaints about pain or tummy aches, he made two trips to the toy room and he even did some arts and crafts.  We were also visited by some of our best friends over the past couple of days, which always helps brighten our days.  Christina, Catherine, Debi, Rich, Rudy and Lynda - thank you.  And of course Nana, Poppa and Pop-Pop - no one can put a smile on Ty's face like his grandparents can :) When Lou and I both sleep at the hospital Ty usually plays jokes on us, teasing about who will be lucky enough to sleep with him at night.  Tonight, he said he wanted me to sleep with him so I made up a nice fresh bed, got him all comfy, started setting up the chair/bed for Lou next to us when he...

Just a quick recap of the craziness that has resulted over the past few days... Thursday - Trip to MSKCC for an MRI.  Results were very promising!  What was believed to be progressive disease up and down his spine was actually diminishing.  It's going away!  The docs are baffled and we are on our knees in thanks. Friday - Ty becomes so lethargic, he naps all day.  By the evening, he is in out and of consciousness and wets the bed.  We rush him to the hospital, barely able to keep him from slipping into a coma on the way in.  As we suspected, his intracranial pressure (ICP) was dangerously high, causing increased hydrocephalus.  His shunt was replaced in an emergency surgery to a programmable valve that can be adjusted according to his ICP.  The docs believe we will see vast improvements in his pain, his equilibrium, etc., over the next few days. Saturday  - We are discharged.  Ty seems to be doing well, but he still has...

...can someone stop the roller coaster? I'm nauseous, I'm tired, my back hurts and I'm dizzy with anxiety. We are home. Ty's shunt replacement was successful and it is believed to be working properly (although, we've been told that before). We hope to see vast improvements over the next several days as far as pain and nausea goes, but as of right now Ty remains pretty weak and very sleepy. I have been thinking ahead of all the wonderful things I want him to enjoy when he feels better, but in the back of my mind I have a tremendous fear... What if he doesn't improve? If he has lepto-meningial disease - and many of the doctors on tumor board still believe he does despite the improved scans - then the hydrocephalus may be a side effect that will never improve. I am scared and excited at the same time which pretty much equates to a constant feeling of anxiety. Then again, that's nothing new :) Tomorrow I will take him back to Cornell for a quick CT sca...

Ty was very sleepy today.  He was napping for an abnormal amount of time.  I was reluctant to call the doctor at first because I had given him Benadryl for his itchies, and I thought that was probably making him tired.  After five hours, however, we started to worry.  We could wake him up, but he fell right back to sleep in no time, and that's just not normal.  Then we noticed he wet himself.  He was loopy.  We ended up rushing to the hospital, frantically yelling, shaking, slapping his chubby cheeks for the entire 90 minutes in an effort to keep him awake so he wouldn't slip into a coma.  The neurosurgeon said his hydrocephalys appeared so bad upon his arrival, he's not sure Ty would have woken up tomorrow morning. Can you believe this!?!?!  I mean, at this point nothing should surprise me but COME ON!  The neurosurgury team believes Ty's shunt is clogged in the tubing, and that his valve was set too high for the amount of intrac...

We are not out of the woods by any means, but Ty had good results from his MRI today. We are completely beside ourselves with relief. The lesion on his cervical spine appears to have shrunk in size since the last MRI, and the doctors are completely baffled by that. Ty's situation remains very serious, but the fact that his cancer has not progressed and that we are, in fact, seeing some slight improvement, has Lou and I grateful beyond words. Our doctor actually said that he is pleased to retract his extremely devastating prognosis from early December. Ty still has a very long, very difficult road ahead, but he is doing much better than expected so far and defeating all odds. Thank you for your prayers and positivity. We strongly believe it is the love and support of each and every one of you that drives his progress. There is simply no other explanation. So thank you, for seeing how special our boy is and for keeping him in your thoughts and prayers. I am doing the same...

I have this terrible habit of picking at my cuticles.  At this very moment, I am waiting for Ty to come out of MRI and three of my cuticles are a bloody mess - it's not pretty.  I guess my anxiety is pretty high.  I need to put the coffee down and get some hand cream :) The snow was so severe when we woke up yesterday, we weren't able to make Ty's original appointment for MRI.  It worked out well, though, because we were able to reschedule for today and he is under anesthesia as I write this post.  I just wanted to update everyone to put any worried minds at ease.  No word yet. We are scheduled to discuss the results with the doctors around 2PM today and I hope to post an update late tonight.  In the meantime, please keep praying for the best.  We will be beyond grateful if his condition remains stable - and of course on our knees in thanks if he shows any improvement.  Clinically, he is still doing well at home with the ex...

We are anxiously awaiting Ty's next MRI with bated breath.  Clinically, Ty continues to do so incredibly well at home I can't help but imagine that the results will continue to baffle the doctors, but I am also a nervous wreck.  I have been living day-by-day, trying not to even think about the terminal status of Ty's prognosis because I believe in the power of prayer and positive thinking and I see it working.  Even if we do receive news that the disease is progressing (please, God, no!), I am still so grateful for these amazing days... Christmas, New Year's, and simple trips for McDonald's or pizza on a daily basis.  Ty's doctors can't believe it when I tell them how active he remains, and how well he feels.  Today he played with his brother on the floor building towers of blocks and talked about how he wants to walk more so he will be ready for the playground when the weather improves.  He said he wants me to buy him a ping pong table, to...

I've said before that this whole experience has helped me to appreciate every day as a gift, but yesterday I was at a pretty low point and struggled to keep a smile on my face. After a number of very long consecutive days where Ty was suffering and my life didn't allow even a moment's peace, I felt like I was close to my breaking point. I cried to my mother because as much as I don't ever want this to "end" because of what that may mean, i felt so vulnerable and so guilty for feeling miserable in my everyday life. I felt so ungrateful because i should love every minute of my life as long as Ty is in it, but the truth is that there are times that I don't. I have some very rough days, even when we are just home, because nothing is normal. God was listening last night, because today was magic. Ty has been feeling good all day, and we were even able to get out of the house. When ty is feeling up to it, our only ritual in the past four weeks has inclu...

Ty's radiation treatment, which was originally supposed to begin on Monday, has been postponed. Lou and I came in to talk to his oncology an neurosurgery teams this afternoon to get a better understanding of what the new issues are. First, Ty has his doctors generally confused, this time in a good way. When I tell his doctors that he is still playing, smiling, and even walking across the room with little help, their jaws drop. They are also shocked by the results from his most recent scan. We trekked into the hospital last Monday in 18 inches of snow because we insisted on an MRI pre-radiation, and we are so glad we did. It turns out that his disease has not progressed much over the past 3 - 4 weeks, which is highly uncharacteristic of lepto-meningial disease. In fact, there is a nodule on ty's spine - up against the spinal cord at C5 -that had grown so rapidly in previous weeks that our doctors didn't think Ty would see Christmas. I am telling them it is the pow...

Some friends on Facebook have coordinated a prayer chain for Ty today at 1PM. If you see this post, please remember him in your own way at 1PM today (or any time thereafter). Please say a prayer for our special boy, and if you don't pray of course any positive thoughts and white light will be so appreciated. For more information, please lookup Ty Louis Campbell on Facebook and be sure to "like" him :)