Sunday, January 30, 2011

Lookin' good

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 thing that Gavin is super jealous of???  Ty's belly tube.  Ty is  showing off his super cool belly tube in the other picture below...

Finally, I just have to share the attached video (I hope it works, I'm having trouble getting it to load properly).  This is Ty singing a song that he thinks is absolutely hysterical.  My dad taught him to say "Spiderman... Spiderman... Lives in... a garbage can..." instead of the real theme song for Spiderman.  Don't ask me why, but he thinks it is the funniest song ever created.

Have a great night everyone.  More updates after our next appointment on Tuesday. 

Thursday, January 27, 2011

We're adjusting

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 happen. 

On top of it all, our last night in the hospital was a terrible one.  Our new roommate was an older boy who was there alone.  He has been fighting the fight for a long time now, and his Dad left to sleep at home because he seemed to be doing really well.  By midnight, he was crying out in so much excruciating pain, it kept us all up the entire night.  I just wanted to jump through the curtain that separated us, climb into his bed with him and hold him.  I wanted to give him words of encouragement.  I would periodically get up to offer him a cold pack for his head, a warm compress for his abdomen, a cup of apple juice... but I could tell I was just being so annoying.  The mother in me knew I was being annoying, too, but I just couldn't help it.  I wanted to do something, but there was nothing I could do.  Of course, when things in the room finally did quiet down, Ty pooped all over the bed... twice.  I must have given him too much laxative to counteract his morphine because I didn't want some silly constipation to hold us back from being released the next day. Whoops.  What a disaster.

We have spent such a large percentage of our time in the hospital over the last six months, it takes such a toll on poor Ty's mental state.  He really has a hard time adjusting at the hospital, and then again when we get home.  His sense of security gets so skewed and it's just so sad.  So, we braved the storm yesterday and finally got out of there (of course it was snowing softballs during rush hour when we were finally discharged).  It took a long time to get home, and as we got closer Ty began to get apprehensive.  He wanted to go to the supermarket instead of going home, or out for pizza, or anything.  It is a weird thing that he does.  He likes to run errands when he is home from the hospital.  I think it is a way for him to feel like his life has resumed to "normal" activity. 

So, today was our first full day home.  Ty was in a very bad mood all day but I blame a lot of that on the meds.  Finally, I gave him something to help him nap around 4PM and when he woke up he was in a much better mood.  We really enjoyed being home together this evening.  He ate well, he made jokes, he was finally getting comfortable with being home.  I was even allowed to go to the bathroom without leaving the door open by the end of the day (he has separation issues when we first get home).  It's actually becoming pretty routine.  Ty is three.  There is a strange mental adjustment period that he has to go through before we can try to resume life as usual (whatever that means).  We are getting there and all is good. 

With all of our love.  XOXO.  Goodnight. 

Tuesday, January 25, 2011

Check this out!

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 Falls High School wrestling team in Viginia is wearing Ty Campbell bracelets!  This picture put a huge smile on our faces, just knowing that so many are thinking about Ty and praying for him :)  Go Panthers!  Go Ty!

Also, we want to thank all of our friends for spreading the word about Ty far and wide and even around the world.  Check out all of these recent TWEETS (Catherine, you're the best)!!

We want everyone to be touched by Ty, so we hope you will share his facebook page, blog or video with all of your family and friends as so many of you have already done.  THANK YOU!

One foot out the door

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 like with any MRI, I often have a feeling about whether or not things will look stable, but I am still holding my breath until the doctor visits to review the results.  I'm told the cytology results will be in tomorrow.

In the meantime, Ty is feeling great, he is experiencing less and less head pain - FINALLY - and the MRI results show that his original tumor is stable for now.  We are waiting for some of the new blood to dissipate to determine exactly what is going on with the tumor (is it growing, is it still necrotic, or has it stayed the same over the past couple of months).  The last time he experienced a bleed like this it was at least two weeks before the blood began to reabsorb into the body, so I don't think we will have a good idea on next steps - whether he requires surgery or if he can continue with his original chemo regimen - for another 2 or 3 weeks.  I imagine we will continue to meet with his doctors once or twice a week in the interim and I will keep you posted on what transpires. 

Thank you for the love and support.  Hugs and kisses from Ty, as always.  XOXO.

Sunday, January 23, 2011

Another good day with our sweet boy

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 enjoying lots of movies, snacks and apple juice.  Clinically, I think he is improving with each passing day.

We have been sharing a room with a teenage boy from Israel this whole time, and Ty has been asking me questions about why he's beeping so much, and why he's getting sick (nauseous) so often.  I explained that he is getting his first round of chemotherapy and asked Ty if he remembers when he had his first round of chemo.  It was actually in this exact same room!  And, yes, he remembered.  He said he wants me to bring him over to the other side of the room so he could sit with the boy because maybe his mouth hurts (Ty experienced mouth sores) and I think that is just the sweetest thing.  Of course, I explained that he's probably not feeling up to it right now, but just the fact that Ty wants to share his experience and help another boy through this experience who is four times his age is totally awesome. 

In the spirit of the game tonight, here are a couple of pictures of Ty from football season 2009.

Hugs and kisses from Ty.  XOXO.

Saturday, January 22, 2011


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 decided to tell me that he changed his mind and wants to sleep with Daddy instead.  He must have noticed my sad face because he said "I still love you, Mommy.  I love you big much."  I love him big, huge, giant much, too.

Now I'm listening to him say his prayers with his Daddy, asking for no more cancer for all the children in the hospital.  His little angel voice saying "I wuv you, God.  Amen," is probably the cutest thing ever. 

Good night everyone.  We will have an MRI on Monday or Tuesday and then we can go home.  We meet with the various teams on Wed or Thursday to review the results and decide on next steps.  It's a happy night, but of course we are all missing Gavin who has been home with Grandma these few days :)

Wednesday, January 19, 2011

Another emergency trip to the hospital - Ty is recovering well in PICU

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 a lot of pain.  We're told it is going to take time to adjust to the new setting on the shunt, to we should go home and give it a day or so.

Monday - We return to the hospital for a CT scan because Ty's pain remains significant.  The scan shows little improvement.  The team decides to dial down his shunt a bit, so it drains easier.  We leave after four hours during the height of rush hour.  An hour into the car ride, Ty begins screaming out in pain.  He begins saying that he feels sick.  I pull over with my hazards, administer meds and begin rushing home at 80 miles per hour.  He vomits all over the place several times on our way back. We talk to his surgeon who explains that he again needs to adjust to the new setting because he may be overdraining.  That we should give it a day or so and lay him down so he is most comfortable.

Monday Night/Tuesday morning (3AM) - Ty is sleeping, but his breathing is VERY labored!  When we wake him, he complains that his mouth feels funny.  He lost his ability to drink from his sippy cup.  His speech is very slurred.  His pain is out of control.  There is a major ice storm.  We leave for the hospital again a couple of hours later.  He is admitted immediately, another CT scan shows slight improvement in his ventricles (so his shunt is working well at this setting) but now his original tumor site shows a very dangerous mass that appears to be caused by ruptured blood vessels.  Ty suffered a similar bleed at the tumor site in October while being treated with chemo, but that was believed to be a result of the tumor dying.  This time we are told the bleed is likely the result of new tumor activity/growth due to the fact that we haven't been able to continue with Ty's chemo regimen since early November (infection, shunt complications, suspected lepto-meningial disease... I could go on about the various complications...).

So, now it's Wednesday.  The tumor board met this afternoon to discuss Ty - AGAIN.  The good news is, there are options and we are in the early stages of discussing a course of action with the intent to aim for a cure (as opposed to previous discussions that revolved around palliative care).  The most recent scans show the suspected disease in his spine continues to disappear, and that in itself is a miracle.  The doctors have absolutely no explanation as to why a lesion on his cervical spine #5 progressed so quickly in 12 days that they doubted he would survive Christmas, yet yesterday's scan shows that same lesion to be practically gone.  What a kick in the face that the minute we reach for the champagne; a blood vessel in his original tumor explodes and puts him in what we are told is a critical state where the if the bleed continues it will be catastrophic.  So far, he is stable and nothing is happening.  They gave him a huge boost in steroids and he is talking well and really doing great.  We are waiting it out in the PICU across the street from MSK and if he continues to do well over 48 hours the risk of another bleed will be much, much lower.  In fact, they will move us to a step down unit tomorrow, observe through the weekend and look to send us home over the weekend. 

We are told that there are several options to consider, including surgery, more chemo and radiation.  We need to discuss with all of the individual teams over the course of the next week or so and make a decision on next steps by mid-week next week because we don't want to waste anymore time.  I don't like any of these options for various reasons, but we don't have a choice... we have to do something.

Lou and I are feeling like we are at the end of our ropes, but we will find a way to hold on.  It's as if we have come full circle and we are having similar conversations around chemo and surgery that we had with various medical teams back in August when he was first diagnosed.  The tumor isn't as bad as it was when we started out, but I get the idea it is getting there.  I don't know how much of this we can put Ty through again - but at the same time we don't want to dismiss any options if it can save our boy.  We just don't know how we are going to get through this, but we've said that before and we pulled through.  It's Ty's strength that inspires us and gets us up and over each and every hill - no matter how steep or how high.  We keep the faith, we stare at his sleeping face for hours on end, and we are filled with hope and love.  It is a powerful feeling and we will be okay, thanks to the strength of our little fighter. 

Sunday, January 16, 2011

I'm ready to get off...

...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 scan so the neurosurgery team can compare with his pre and post op scans from two days ago. Again, I beg of you to think of us, send us your positivity and keep Ty in your prayers. Thank you so much!

I have so many adorable new pictures to share. Hopefully I will find time to post over the next couple of days. In the meantime, enjoy these hugs and kisses from Ty...

XOXOXO and a big "m-wah!"

P.S. It was brought to my attention that I need to clarify something. When we received the good news about Ty's MRI and I published a post entitled "the gloves are coming off," I didn't mean the fight was over by any means. Ty still has cancer and his original tumor remains a major threat. I meant that the gloves are coming off because it's time to fight dirty... To go bare-knuckled... To switch over to street fighting mode because that's how tough my little fighter is :). That's not to say that the news about his MRI is anything short of miraculous, I just didn't mean for it to sound as though the fight was over. It was a huge victory, but we have several more rounds ahead.

Friday, January 14, 2011

We continue to hold our breath

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 intracranial pressure he was experiencing.  That's why he just wasn't getting better.  We discussed this following the MRI yesterday and the doctors had flagged it as a serious issue.  In fact, we had an OR booked for early next week to revise the shunt.  We obviously didn't anticipate that it would get this bad so quickly, though.  It was absolutely terrifying.  I am still shaking. 

We were in touch with his doctors on the way in and there was a full team waiting for us on arrival.  It was like we were in a movie, it was so surreal.  They immediately drained two large syringes of CSF fluid from his head, and Ty became more lucid right after that.  Lou accompanied him into the OR while I cried and prayed in the waiting room.  He is okay, and he is going to be okay. 

I feel like I should be used to this by now, but no matter how many complications we have faced already it just doesn't get any easier.  If all goes as planned, we should be home as early as Sunday. 

Thursday, January 13, 2011

The gloves are off - Hallelujah!

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 for so many other beautiful children I have met on this journey.

As for next steps, we will continue to monitor closely through frequent MRIs. Radiation is still out of the question until the doctors are 100 percent sure about what we are dealing with (i.e. If there IS any chance of infection - which might explain some of the ambiguity - then radiation is not an option). In the meantime, we will also schedule another surgery for next week to replace the valve in his shunt in an effort to relieve some pain. It's complicated, but we believe a low pressure valve will be very beneficial to offset some of the frequent pain and nausea that Ty is experiencing and it should even help with his equilibrium as he tries to build back his strength for standing and walking. As much as we hate to check back into the hospital, it will be a good thing.

We hope to share more tomorrow, but wanted to let you know the good news in the interim. Thanks again. XOXO.

MRI underway after slight delay

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 exception of some increased head pain so I am feeling very hopeful. 

XOXO. With love to you all. 

Tuesday, January 11, 2011

MRI scheduled for Wednesday - hoping this snowstorm backs down!

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, too, so I told him he has to keep practicing first - we made a deal.  It makes me cry tears of joy, fear and devastation all at the same time.  I am so mixed up, I don't know how to feel!!  But, I know I am happy that he is happy and feeling good.  So, I'll just keep going with that. 

The MRI is scheduled for 7:30AM on Wednesday.  It is important that we can make it to this appointment because rescheduling can be a nightmare given the fact that he requires anesthesia.  This expected snowstorm I keep hearing about better BACK OFF!

Love you all.  Good night hugs and kisses from Ty and Cindy.  Time to go back to bed :)  In the meantime I am sharing this picture from Christmas eve... Ty was standing up for a very long time with very little support from me so he could play at his new workbench.  I was just SO HAPPY to see him standing like that!  XOXO

Thursday, January 6, 2011

An extra special day

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 included going to the supermarket and getting Ty a drive-thru happy meal (that he doesn't even eat more than half the time - but he insists on buying it). I don't know why, maybe it is just a comfortable routine for Ty because it's close to home with no surprises. Today, we drove right past the McDonald's and Ty said he didn't want a happy meal. Eureka! I decided to take a nice long drive through Westchester to see if maybe, just maybe, we could do some shopping and try something different for a change.

We went into a couple of cute gift shops first. Ty was pretty melancholy through it all, but at least I was able to buy some well overdue gifts. I didn't think we would make it anywhere else, but then ty said he wanted pizza! I swear I almost cried. We sat down at a little pizza place and ate such a nice lunch together. When he said he had to go to the bathroom, I almost panicked because i didn't have a urinal or "pee-pee can" with me, but Ty was happy to just use the potty. Again, I was shocked. Then we stopped at Target on the way home, I got a cup of Starbucks at Ty's suggestion, and it couldn't have been a better day. He never once complained of a headache. It felt so beautifully normal!!!

Today was just what I needed. Pizza and a trip to Target with the best boy in the whole world. It was pure bliss.

Tuesday, January 4, 2011

Additional roadblocks

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 power of prayer, a Christmas gift, but they want to explore this further just as a precaution before we begin radiation (and, of course, we agree).

They suspect that the disease will again begin to progress rapidly in upcoming weeks so the doctors are being very cautious about giving us any false hope, but I will never lose hope for Ty so they shouldn't be concerned about that. There is some controversy over the lesion I mentioned on C5 and whether or not it might be an infectious abcess instead of a new tumor, but the biopsy procedure is complex and risky so Lou and I prefer to keep him home and follow up with another scan next week for additional clarity. His surgeon agrees that a biopsy is not necessary right now, but if we can't determine disease vs. Infection in the next couple of weeks, a biopsy will be required in order to start radiation because on the off chance that it is an abcess, radiation would be deadly because it would cause the infection to spread.

We also discussed the option to swap out ty's shunt so it has a lower pressure valve. The purpose would be to try and better control the hydrocephillis that is causing the majority of ty's head pain. Another complicated matter with too many details to share.

So, Lou and are faced with a new round of difficult decisions. In the meantime, we are rushing home to enjoy another evening with our special boy who is doing so well sometimes we forget he is sick (almost). I am grateful for the confusion because while all of this debate is going on, Ty is at home, he's feeling good, having fun and laughing out loud. God bless him always.

Saturday, January 1, 2011

Join the prayer chain for Ty today!

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 :)