Showing posts from March, 2011

Happy Boy!

Today was totally great.  Ty was so happy!!  He's feeling great, his infection is under control and they stopped injecting the antibiotic directly into his shunt (at least for now).  Now we just need to wait and see to be sure the infection doesn't flare up in the absence of those injections.  As long as the infected shunt is in place, he is at risk of the infection returning.  But, we need to get through radiation first so we are keeping the shunt in place for now - one step at a time.  Just look at this smile... taken this morning while he was waiting for his super hero treatment.

Getting bedda

Ty had a pretty good day today.  Although he is still on a PCA (a machine that delivers IV morphine by allowing the patient to press a button as needed), he only pressed the button half as often as he did yesterday.  That's a great improvement for the little man, and it makes me hopeful that if he continues this trend, a day without headpain is around the corner.  The most recent culture on his CSF fluid has not grown anything yet, which is a great sign that the infection is under control.  He started this week's radiation without a hitch and he smiled at silly jokes a LOT throughout the day.  It was great.  All is quiet tonight, Ty is already asleep.  Lou and I skyped with Gavin tonight so we were able to say goodnight.  All is well with the Campbell's.  Thank you all, goodnight and God bless. XOXO Love, Ty

A quiet weekend

Lou and I had a nice, quiet weekend with Ty.  I also took time on Sunday to go home for the day and spend it with Gavin.  It was very special to have that one-on-one time with the baby, he is getting so big, we had fun! Ty's staph infection is cleared from the bloodstream but not yet under control in his spinal fluid.  He continues to be visited by neurosurgery twice a day... once to tap the shunt and pull off some fluid to test the level of antibiotics... then to inject the shunt with additional antibiotics accordingly.   We will be staying in the hospital for the rest of his radiation therapy (three more weeks) because these injections need to be done in a sterile environment under close supervision and until Ty is well enough to have the shunt replaced, the infection won't be under control unless the antibiotic regimen remains the same.  I am very happy to report that Ty is finally coming off of his steriods.  Slowly but surely, he is on a slow taper and we hope to be co

No news is good news

Ty had a pretty uneventful day today.  We had one minor scare around 8PM when his face and arms turned red as a lobster, but I remembered hearing about "red man syndrome" before and it is associated with the antibiotics he is on... so I wasn't too concerned.  The nurses came in, followed by a slew of residents who ordered a gazillion unnecessary tests.  All he needed was a little benadryl and Ty was back to normal. Other than that, it was a nice, quiet day.  Ty began his steroid taper today, which is the most promising news we've had lately.  We have steroids to thank for that gorgeous dark hair that's coming in, but we also have steroids to thank for the infections, the mood swings, the myopathy and those beyond puffy cheeks!  Ty will begin looking and acting more like himself once he is off the steroids.  And, we will be able to begin a more aggressive physical therapy regimen to work on the atrophy in his arms and legs.  The atrophy has gotten so bad that his

I can't believe it - another CNS infection

POOR BABY!  Ty's blood cultures and the culture of his CSF fluid have confirmed yet another staph infection in his system.  I am just so upset.  To stave off another bout of meningitis, he is now being treated with three different antibiotics that are upsetting his stomach and we have been discussing strategy around radiation and surgery to change out the shunt.  I wish he didn't need the damn shunt anymore, but he's had so many infections in his central nervous system at this point that his brain has too much scarring to effectively absorb the fluid without one. Since the shunt is now infected with staph, it needs to be replaced.  However, Ty is in no condition for another surgery, nor can we afford to delay his radiation treatment.  There have been some experimental findings that support intrathecal treatment with antibiotics (which means injecting the shunt directly with the drug on a daily basis) and in some preliminary studies there are cases where that approach work

A good night's sleep (and antibiotics) can work wonders

Ty woke up feeling much better today.  Last night his fevers hit a high and they started him on some additional antibiotics.  I think they are kicking in because Ty was feeling much better today and his fevers seem to have subsided.  Hopefully he will continue to improve and we can be home for the weekend.  The biggest concern is whether or not he has an infection right now (nothing has grown on his cultures, but his symptoms are highly indicative of one) and if that infection has penetrated the CSF fluid.  This is always such a huge concern because then the shunt would have to be replaced again.  I can't even believe I am writing about the shunt again, but it forever haunts us.  As long as he has these foreign objects, they are susceptible to becoming infected and causing complications.  They drew a sample of his fluid earlier today, so please help me in praying that there are no signs of an infection in his central nervous system.  Argh!  Other than my growing concern over th

Off to a rough start

This week is off to a rough start, but I think the radiation is sure to help and Ty will improve as the week goes on.  We ended up being admitted because Ty ran a fever this afternoon.  It isn't a bad thing because I wasn't very comfortable with the possibility of taking him home when he was breathing so poorly, anyway.  Ty is getting used to the daily trips to the hospital and he isn't as reluctant to be here as he used to be.  In fact, he settled into his bed nicely and he's already fast asleep.  His fever went away on its own (no tylenol), so that's a great sign that it isn't likely the result of an infection or anything.  His head pain is still pretty severe, but I think today was better than yesterday and his breathing sounds better tonight than it did last night.  I hope to be saying the same things tomorrow.  Tonight Ty toughed it out and made a trip to the toy room for a game of Monday night Bingo.  It was sad for me, because he was in so much worse

Ready to begin week 3

We had a very tough weekend.  Especially yesterday.  Ty had a lot of head pain, so much so that he wasn't able to sleep much at all.  His breathing is also worse as of last night/this morning.  Right now we are waiting to see his team at the hospital and he is sleeping so peacefully that I suspect he might make a liar out of me when I tell his doctor's how terrible he's been doing :)  I won't mind one bit as long as he continues to feel better and sleep better.  When he suffers from headaches it is simply unbearable.  He tells me, "Mommy I have head pain" over and over and over and over and over again.  I give him medicine, I put cool rags on his head, I try changing his position but nothing helps.  It's a terrible feeling when your baby cries out to you for help and there's nothing you can do.  It makes me want to jump out of my skin.  We are looking forward to starting up another week of radiation so we can get back in the game of beating up the

On the road again

Thank you SPRING!   Ty has a new found love for his stroller again.   After his diagnosis, he was very reluctant to go in the stroller because it was "too bumpy" and would cause him head pain.   In fact, I had to CARRY all 30 pounds of him (at the time) all over the theme parks when we had his Make a Wish trip to Disney this past December.   He refused to go in a stroller of any kind.   Since we began radiation treatment, I have been loading the double stroller that I keep in the car with all of our stuff so I can easily push it along while carrying him (you wouldn't believe how many bags I carry around with me on a daily basis).   Just recently, I tried padding it was blankets and I convinced him to take a ride.   He got nice and comfy and even fell asleep.   Later I was able to talk him into taking a walk outside in the city.   He whined and complained when I went through any particularly rough patches in the sidewalk, but he otherwise responded well.   Then, just yest

Everything seems to be going smoothly

Ty and I decided to take my friend up on her offer and we stayed at her apartment in the city last night - thanks Matt and Juliet!!  What a nice, quiet day we had together.  We went out to a fancy dinner last night and Ty was a true gentleman (as usual).  All of the other women in the restaurant were looking my way with envy and I felt like the luckiest girl in the world ;) The most exciting part for me was that we stayed just two blocks away from my old apartment on 81st Street, so walking through the familiar streets with Ty was so fun!  I was also looking forward to a good night's sleep for a change because we were able to wake up at 6:45AM instead of the usual 4:45AM, but it didn't matter because Ty began sighing and telling me "I can't sweep" starting at 3AM.  We've been up watching Nickelodeon since then.  Now my eyes are red and countless kiddie songs are running through my head. STEROIDS!!!!  Our appointment with his radiation oncologist yesterday

It's good to be home again

Ty had his radiation treatment early this morning and we were discharged around noon.  His team was very happy with how much he has improved, but not as happy as Lou and I.  Once home, he even ate a few bites of steak, four teeny tiny meatballs, a couple of pieces of cashews and four bites of cheese.  That's more than he has eaten by mouth over the past four weeks!  I also offered him a blue ring pop which he happily accepted.  It was too big for him, though, so I had to melt it down under running hot water for several minutes.  Then, we opened a thoughtful package from some of Ty's favorite fans here at our local bank!  The girls at Chase in Patterson had been setting aside the blue lollipops in a box marked "Ty's lollipops" because those are his favorite.  They began to really add up since we haven't made it to the bank in quite a while, so they mailed them to us along with a care package and Ty's mouth dropped when he saw what looked like 100 blue lol

As usual, I spoke too soon

Whoops!  We did not end up getting discharged today as we thought.  It's okay, though, because Ty is doing really well and that's all that matters.  He was awake and active for the majority of the day today, and his speech has drastically improved.  We are here because it turned out that he needed a blood transfusion to replace some of the hemoglobin decifits resulting from radiation therapy.  Then our primary doctor came to examine Ty at the only time of day when he was extremely irritable and uncomfortable.  He felt that Ty should be observed for one more day and we were fine with it because by the time the transfusion was done it was already evening rush hour.  So, Lou came into the city and we kicked back with sushi, beers and Backyardigans. Ty is already asleep in bed with Lou and holding his hand sweetly.  Hopefully we will have a good night's sleep.  Goodnight all!

Two more nights in the hospital, but all is well. Ready for week #2

We were admitted into the PICU at Cornell very early Sunday morning (around 1AM), and we were moved across the street to MSKCC later on Sunday.  Most importantly, Ty is okay.  We were just worried about him on Saturday because he was sleeping all day.  I mean ALL DAY.  There have been times where we felt like we waited too long to bring him in, but this time we think we probably should have stayed home.  Regardless, it was good that we came to have him monitored and put our minds at ease.  Now we are just waiting for our escort to take us down for his radiation treatment and we expect to get discharged soon afterward.  Home in time for a late lunch and to give Gavin hugs before his nap :) The doctors did perform a useless test on Ty yesterday that just made him miserable, but given his neurological symptoms (his eyes have been jumping around quite a bit), they wanted to be able to rule out seizures as a potential complication.  Lou and I never suspected seizures to be an issue, but T

Big huge THANKS to the Robert Manzoni Memorial Fund

Before I jump into details about the amazing night we had at the third annual Robert Manzoni Fund dinner, I want to apologize because I didn't get to share an update on Ty's appointment yesterday like I promised.  It turned into such a hectic day, I wasn't able to get online until now.  Long story short, we ended up being in the hospital from 7:30AM until 4PM because his doctor ordered a CT scan along with multiple tests before we were able to get clearance for home.  I am happy to report that the results of the scan show no significant change in the tumor.  Sure, I would love to say it was smaller, but that isn't to be expected so quickly after radiation.  As long as it isn't getting any bigger, Ty will continue treatment and he will keep on fighting the fight. The second we heard the words, "you can go home now," Lou and I zipped off to Long Island so we could attend the dinner.  What an incredible event it was, Lou and I are grateful beyond words. I w

Week one completed. Five more to go

Some mornings I look in the mirror and I think I look 100 years old!   This whole situation sucks the life out of me sometimes and I don't have the motivation to fix it by getting my nails done or my hair done because my only priority is to sit at Ty's side 24/7.     In fact, it had been SEVEN months since I had a haircut and the ragged ponytails with crooked glasses that I've been sporting are not the best look for me. J   Then, yesterday I received the best treat!!   A great friend of the family, Liz, came to my house and cut and highlighted my hair.   I feel like a new person!!   Gavin also got his first haircut.   It was down to the middle of his back so it was about time.   He looks like such a big boy now!   I have pictures to post as soon as I have a chance to upload.   Next I need to get a new pair of glasses. I brought Ty upstairs later in the day because I had to try on clothes and he was so sweet.   I would try something on, then bring the clothes over to Ty and

So tired

Wow.  Commuting to the city for daily radiation is exhausting.  Not so much for Ty who sleeps there and back and then again on the couch after we get home (due to the after effects of his daily anesthesia), but I am totally pooped.  We have to get up very, very early because all of the babies get radiation first, which means the appointments are around 7AM every day.  We have a pretty long drive and I feel very drained.  I have a feeling, though, that this is going to fly by.  I am so, so  anxious for him to get off steroids and begin feeling better.  I keep thinking "just a few more weeks!"  I think I might be more anxious now than I was when I was waiting for his due date (but I'm not sure because that was pretty damn exciting). So many special things happened today, but I don't have the energy to share this evening.  I know you understand and I will be sure to share more tomorrow :)  Thank you so much for always checking in on my Ty and for caring so much.  Her

So far Ty is doing well

It was hard to figure out a way to explain to Ty what is happening.  Why we have to go to the hospital every morning and why he has to go into that scary room with the huge machine, go under anesthesia and then gear up for the long drive home.  Lou was great.  He told Ty that he has to go for Super Hero treatment every day, and that we have to be patient because it's going to take a long time before the super powers begin working.  He said that Spiderman had radioactive blood, and that Ty's radiation will make him strong like Spiderman.  I guess at 3 years old that is a good enough explanation :) So far, everything is going okay.  Ty doesn't seem to be suffering from any side effects, and he comes out of the treatment feeling pretty good.  His bigger problems lie in the steroid myopathy that he suffers from and the fact that his brainstem is still so inflamed.  He isn't able to eat lately because of this, even when he wants to (we feed him formula through his G-tube

A moment to reflect

Tonight I just want to reflect on how much love we feel from everyone.  In the comments from this weekend alone we heard from some of our new friends in North Carolina, Baltimore and Canada. I want each and every person who cares enough to check in on Ty every once in a while to know that you are the reason he/we are able to stay strong through all of this.  Thank you, thank you, thank you. We will be on the road at 5:30AM, heading down to the city to begin our first full week of treatment.  As much as I want to hold onto every second of every day, I also have such anxiety over this.  I am anxious for this six weeks to be over, for the treatment to work wonders, and for Ty to begin feeling well again.  I can't stand watching him like this.  I just want my baby to feel remotely good again.  I know he will because I have very clear visions of him enjoying the warm weather on his feet this summer, and many more summers thereafter.  :) We love you and look forward to keeping you po

Determined little guy

Ty's cousin James is so cute.  He sent Ty a drawing of Super Ty, who is a super hero who embodies the super powers of ALL the best super heroes combined.  So, he has spiderman webs, an iron man chest, a superman cape, batman mask, etc.  Ty smiles so big when we tell him how even though he doesn't feel very strong right now, all of his amazing super powers are in his head and in his heart.  I think he really knows it to be true. For example, Ty is limited to only one arm at this point.  He doesn't have the strength to lift it, but he is still capable of bending it at his elbow and grasping things.  You would think anyone, especially a 3 year old, would carry on and say "I can't... I can't..." but Ty is constantly saying just the opposite.  When I try to hold his juice for him, he insists "I can do it myself," and he manages to get it to his mouth even if it takes a while.  When I try to feed him, he also insists on holding the fork, getting the

Radiation begins tomorrow

My Ty.  He is doing very well today.  I have a love hate relationship with the steroids because they work wonders on his neurological condition while destroying his muscle function and bringing on major mood swings.  He is speaking so much better today, he is able to eat and drink and he has been relatively happy all day.  His nausea has also subsided, as did his headpain (thank God).  Here he is enjoying his pizza and taking big boy bites instead of having me cut it up into teeny tiny pieces like I have had to do in the past. He has made me smile so many times today, but we also had some difficult times throughout the day when we can't understand what he's trying to say.  Today he said something over and over and over again that sounded like "I want may-doe".  We took turns guessing at what he wants... "tomatoes?... play-doh?... you want to play with those?..."  We asked him, "is it something to eat? something to play? something to watch on TV?"

Switching into turbo gear

Ty's MRI was extremely disappointing. In the 19 days since his surgery, it is growing back and causing significant pressure on his brain stem again.  He has bounced back so many times before, but it is taking it's toll and this time it is hitting him pretty hard.  We need to get back in the ring immediately and we are ready. Ironically, I received a phone call from Boston (Mass General) just before seeing the latest MRI report.  It turns out that they reviewed his case carefully and did not feel Ty is a good candidate for the proton beam therapy after all.  They said that the dosing with protons would be low, the efficacy is expected to be the same as IMRT (which is what we will be doing here at MSKCC) and the side effects will be minimal regardless of which approach.  So, there wouldn't be much of an advantage to leave our team here in NYC and drag him all the way to Boston for therapy.  We were disappointed because we were always led to believe that if proton beam was


SuperTy is not feeling very super.  We went to the hospital today to discuss radiation therapy and ended up overnite because he is just so weak.  His headpain is very significant, his nausea still isn't under control, his speech has been so compromised that I can barely understand what he's trying to tell me (I have to hold up pictures and ask him to point), he still can't move his legs and he can barely move his arms.  My little superhero hasn't lost his sense of humor, though... he just pointed and told Lou he was "chopped liver" because he had to sleep on the chair next to us while I get to sleep in his bed.  He grinned from ear to ear.  I love him so much. The doctor's may as well have told us that he was drained by kryptonite because they otherwise have NO idea why Ty is so weak.  We went for a CT scan and a series of x-rays to make sure his shunt is functioning properly, and everything looked as it should.  It doesn't look like there have been