Journal History

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Tuesday, November 13, 2007 8:45 AM CST

Lately I've been "encouraged" by my friends, one in particular (Susan Smith) to “update your damn journal!!” So, here I am with an update…

This website is a wonderful tool to keep friends and family abreast of the ins and outs and daily drama of someone who is going through medical treatment and the like, but now that Cam is healthy, it’s hard to know what is “journal worthy” and what’s just plain babble.

The other day I came upstairs from switching the laundry, and I found Cam in the kitchen sink taking a little bird bath along with the mop. I had the sink plugged up with water and vinegar to wash the hardwood floors, and he must have thought it looked like an inviting little sitz bath for him. In full clothing, diaper and all, he had the water on and was drinking right from the faucet – not paying any attention to the fact that water was overflowing onto the floor in waves. I couldn’t find my camera.

He started Kindergarten this fall at a new school. This school in the district has an impeccable special needs department – a special classroom for the children with multiple needs when they aren’t tolerating mainstream classroom and activities, and a professional staff of SPED teachers, helpers, and therapists. Cam loves it. He’s learned how to drink from the water fountain on his own, he goes potty in the toilet most of the time, and he is using modified signs and PECS cards to ask for items he wants.

Among other things, at home he likes to flush the toilets, play with the light switches, turn on the faucets, pour milk out of the jug (on to carpeted areas is his favorite), climb bookshelves, look out windows, throw items down the stairs, open and close doors (the garage door button being his number one choice), unfold folded laundry, and run outside through the flower garden. Sound like a terrible two? It feels like I have a 2 year old. It’s wonderful.

On the mornings he doesn’t have private therapies; I take him to Kids Club at the fitness center. I wasn’t sure how this was going to go – being that it’s a daycare for parents to drop off their kids while they workout for an hour, and the staff doesn’t have experience with special needs – but from day one he – once again, surprised me.

The first time I dropped him off, he saw a Blues Clues book high on the bookshelf – he reached for it, took it off the shelf, brought it over to the little plastic picnic table, sat down and started to turn the pages. I couldn’t believe this was my kid. We go twice a week now, and he gets the same book down every time, and now has those women understanding when he is thirsty, when he wants a new book, and when he wants to go for a walk. At the end of the hour, he gives them high-fives and hugs. For a guy doesn’t use any words, he sure knows how to communicate.

This last summer we decided to hire Cameron a full-time nanny – 40 hours a week. She’s actually a nursing student who has her CNA – so her fees are covered by Cam’s medical insurance. Her name is Cassandra and she is truly a blessing to our family. Now that Cam is back in school, she works only a few days a week, but come summer, she’ll be back to full-time.

I came to a point in my life that I decided I needed help with my special little guy – I needed a mental break. This was of course hard for me to admit. I felt like I was throwing in the towel, or not taking care of what I feel God gave me to take care of – I felt that by asking for help, I was failing my son.

Thankful now that I got over all that ridiculous guilt, it was the best thing I ever did. Not just for me and my sanity, but for Cameron and my husband – our whole family has benefited. Cam has a new best friend. She takes him to all the places he loves to go, she makes sure his hearing aids are in, she laughs with him, snuggles with him and gives him her undivided attention every minute she’s with him. So, from one “Supermom” to another, if you have a special needs child and are thinking that you might lose your mind if you don’t get some help but are struggling with the guilt part of it – let it go. Give it a shot. It’s the best thing I ever did. (Just thought I’d throw that out there).

We skipped Duke this year, so we don’t know what his brain looks like from last year – and quite frankly – we don’t need to know. I imagine we will get an MRI sometime in the next 2 years just to see if Sanfilippo is eating up his brain tissue, but for now, we are reveling in the fact that he is learning new skills, trusting new adults, laughing, kissing and hugging and experimenting new things.

Thank you all for still checking in on the Camster – even after all these years!

Love to all!!

The Nicoll’s

I even added new pictures...

Wednesday, January 24, 2007 8:47 AM CST

**I fixed the pictures**

The MRI of Cam's brain shows improved T2 signaling. At 5 years old, his brain fills out his entire cranium. This most likely would not be the case at his age if he did not undergo transplant. Sanfilippo attacks the brain of children at a very young age causing shrinkage to the brain and irreversible brain damage. So far, Cam's looks good.

The rest of his physical studies showed normal results. His hearing has stabilized. The developmental evaluation shows improvement in his receptive language, meaning, he understands more now than he did last year. We don’t need Duke to tell us that – we see it every day…

He is happy and healthy and plugging along.

Thank you all for checking in on the little guy. I finally posted new pictures of him.

Love to all!!

The Nicoll’s

Monday, November 6, 2006 8:25 AM CST

It's going to be a long recovery. We went back to Duke last week for Cameron's 4 year post-transplant evaluation. We knew it was going to be hard going back there, but it was only until we were actually looking up at the tall building - DUKE UNIVERSITY MEDICAL CENTER, that we understood HOW hard it was going to be.

With each passing year, my heart heals a little bit more. What I realized this time more so than any other return trip, is that going back to the place where my first born son died in my arms, reverses an entire year of healing. I was inundated with haunting memories. We walked down the same hallway as we did the morning we were forced to take him off life support - the hallway that lead to the fate of death of our little guy who fought so hard, and suffered so much.

We had to drive by our old apartment. I could almost see him in the window looking out onto the lake that he loved to look at so much.

I caught myself looking up at the window of the hospital where he finished out his short little life in a hospital bed hooked up to IV's watching Blues Clues - and thinking, oh, if only he was still up there - I could just go up and get him, and this time I would never let him out of my arms again…

Another moment while washing my hands in the restroom of the Children's Hospital, I had a fleeting thought that I’d better hurry because he’s up there waiting for me (just like I used to think when he really was up there waiting for me to come back). I just looked at myself in the mirror at that moment and thought – I am not okay here.

I had a horrible dream. I called the PICU and asked if my son was still there. The guy on the other end of the phone said, “Well, YES – we’ve been wondering where you were this past year and if you were ever going to come back for him.” The dream seemed so real…

I could go on and on with more nightmares and haunting memories. They seem endless.

But let’s talk about Cam Cam…

He was AWESOME!!! He even let them take his blood pressure! He did great through all his appointments and he cooperated with the audiologist for his hearing test, and showed Dr. Escolar and crew that he has progressed in his development, and on and on…

We don’t have the results back yet from his MRI, which will tell us if this horrible God forsaken disease is assaulting his brain or not. I will post when we receive it. Until then, thank you for checking in with us. It's hard to believe that some people still hang on to our journey after 4 years!! Your unending support is appreciated beyond words…

All Our Love, The Nicoll’s

Tuesday, June 6, 2006 8:37 AM CDT

Life for Cameron is good. He swims at the country club, slides at the park, climbs up the hills, and runs through the nature trails. We live in one of the most beautiful places in the world - and Cameron is delving into all its glory.

We don't have to worry so much anymore about the dangers of the outdoors. We start each morning with breakfast and sunscreen, and then he's off for the day - exploring what Katherine Lee Bates coined as "purple mountain majesty."

Every Sunday he gets to visit Mama Jane and Papa in Manitou - which is at the foot of Pikes Peak. He loves going over there so much that if we even start heading west on Hwy 24 - he anxiously anticipates his arrival.

In fact, I've learned that I can't head west at all with him in the car if we're not going to Mama Jane's. He throws a temper tantrum fit the second we miss the exit to her house. He's got the route memorized.

Cam did great in preschool this year. He learned a new communication system called PECS (Picture Exchange Communication System). He gives you a card with a picture on it of what he wants, and you give him the item that the picture represents. It's a little exchange. He loves it. He's on phase I and doing really well.

He will go to summer school 3 weeks in June and 2 weeks in August, 2 days a week for 3 hours a day. His school, teachers and therapists are still awesome. They have fallen in love with him, and have a genuine concern for his development.

Douglas' Birthday was May 27th. He would have turned 6 years old this year. Lately, I find myself stuffing down tears and memories almost every second of every day. I know it doesn't sound healthy, but the alternative is crying every minute - which will cause severe droopiness of the eyes - which will in turn cause me to resort to Botox in the near future - which would be premature because I wanted to wait until I was at least 40 - which is at least 3 years away...

Anyway, thank you all for continuing to check in on Cam and the fam. We do appreciate all the love and support.

Love to all, The Nicoll's

Saturday, March 4, 2006 2:43 PM CST

It's hard to journal when there's not much to report, but I'll try...

It has been 3 years and 3 months since Cameron's transplant. He is as healthy as a horse and has a normal functioning immune system. He is off all medications, except a tiny spread of steroid cream after his bath every night to keep the ever-so-slight signs of skin GvH from accelerating. As a refresher, GvH is graft vs. host disease. Most transplant patients (of any kind); suffer from this complication on some level. Cameron's is now starting to fizzle out. By the year-end, we are hoping it will be gone for good.

This is something that we have not taken for granted. We've experienced the worst case scenario - losing our first born son, Douglas Hamilton - who we miss so much every single second of every single day. A heartbreak and void that will be will us until the day we die. So, we are very grateful for Cameron's success in making it through transplant alive.

However, to be honest, we were hoping to see more mental development by now. The MRI's of his brain tell us there is no brain damage, however his lack of skills makes us wonder what is going on.

We see little milestones here and there, like the time we drove to Home Depot...

I got him out of the car to walk in, and he started running the other way in the parking lot. I grabbed his hand, and he kept pulling me away from Home Depot. I picked him up and told him we wouldn't stay long, and he kept vehemently trying to escape my arms. So I thought, "he's trying to tell me something..." Maybe he dropped a toy, or book or something, so I set him down and held his hand and let him drag me. He dragged me back to the car, passed the car, kept dragging me about 200 yards down to the end of the parking lot, crossed a street and made a b-line straight towards the door of Red Robin.

This was one of the happiest days of my life. My son had shown me a sign of cognitive thought process. AKA: BRAIN FUNCTION. He remembered the route to his favorite restaurant, noticed that we had passed it, and did everything in his power to communicate to me that that is where he wanted to go. And you can bet your bottom dollar that is where we went. We sat down and had lunch - and he was happy. And so was I.

He likes to look at books now; he keeps his glasses on and his hearing aids in. He responds to his name, and understands a handful of simple commands. When he wants something to eat, he drags me to the pantry. When he's thirsty, he drags me to the fridge. When he wants a video, he drags me to the TV, and the latest thing is when he wants a stroller ride, he drags me into the garage and gets in his stroller. He can turn off and on the light switches when asked, and understands "it's time for...(night night, nap, bath, bye-bye).

These are skills he didn't have a few months ago, so we are seeing progression of receptive communication, which is better than regression. We just have to keep reminding ourselves of this. It's hard not to get discouraged. After all, we've been waiting years and years for his first word. Watching all of our friend’s babies grow up from infants to toddlers, to well-spoken children, and have yet to see that with ours.

I never had a clue what parents with special needs children went through on a daily basis. No wonder the divorce rate is so high. The stress it brings to the family is insurmountable. The tedious, arduous details of daily living and care are unending. Not to mention the worry. Day in and day out, not knowing if your child will ever speak, not knowing if he'll ever develop into an independently functioning person, or if he will even make it to adulthood. It's a heavy cross to bear. The burden of this unknown is of great weight.

So, here we are, 3 years post-transplant, and we are no more knowledgeable about Cameron's future than we were on day one. We do know, however, that we did all that we could to provide him with the hope of a better quality of life. Now, we wait...

I want to thank everyone who still checks in on Cam. He is such a happy, loving, laughing little boy who enjoys life to the fullest. He brings us an overwhelming amount of joy and happiness. We appreciate the love and support of our family and friends.

All our love, The Nicoll's

Monday, December 19, 2005 5:21 PM CST

Geez! It's been a while since I've updated!! We've been experiencing some technical difficulties with our internet connection - it's been quite irritating...

Anyway, Cam Cam is doing well. Still no words, but gaining new skills all the time. His latest is waiving bye-bye.

He's doing great with keeping his hearing aids in, and just the other day, we started wearing glasses. So far, he will keep them on for about 10 minute increments, but we know it's going to be a process - just like the hearing aids.

His health is good, his development is slow but movining in the right direction. We are very blessed for his health and happiness.

We thank everyone who still checks in on the Camster. We do appreciate your continued support through our journey.

Merry Christmas Everyone!!!

All our love, The Nicoll's

Wednesday, September 28, 2005 1:20 PM CDT

My heart aches as I journal today's entry. Our dear little Sanfilippo friend, Jillian Fitzpatrick, died in her mother's arms today in Cleveland, Ohio.

Jillian was transplanted a few weeks before Douglas and Cameron at Duke University Medical Center in 2002. Jillian was our neighbor on the bone marrow unit (5200) for several weeks.

Jillian has been suffering with the cruel side effects of chemotherapy and transplant for the last 3 years. She recently contracted a virus in her kidneys and her poor little body just couldn't fight anymore. She entered into heaven just before 1:00pm EST.

Please keep Jillian's family in your prayers. This is the hardest thing a parent will ever have to do...

To write a special note to the Fitzpatrick Family, you can visit their guestbook at www.caringbridge.org/oh/jill

Thank you all for your continued love and support.

Love to all, The Nicolls

Saturday, August 27, 2005 4:03 PM CDT

We just flew in from Duke. It was as exhausting and arduous as we thought it was going to be, but we're not tired. We are exhilarated.

It wasn't until 5:30pm on Friday that we received the news, but as we sat there and looked at the perfect pictures of a perfect brain - it was well worth the wait...

Cameron's brain is 100% normal. Absolutely not one sign of damage. He is a 4 year-old boy with Sanfilippo syndrome - and has a healthy brain. This is a miracle. Thank you Jesus!! Thank you Dr. K., and thank you Bernadette and Dorsey Gray for going out on a limb and asking Dr. K to transplant their daughter five years ago - the first child with Sanfilippo to undergo stem cell transplant. Thank you, from the bottom of our hearts to the pioneers who paved a future path of hope for Sanfilippo children.

Thank you Dr. Nielsen who diagnosed Douglas at age 2, which in turn allowed for Cameron's diagnoses at age 6 months, which in turn enabled early treatment.

Cameron still has extreme developmental delays, but now we know for sure that it is a function of his hearing loss, poor vision and post-traumatic stress syndrome - not brain loss.

We have our sights on a bright future for Cam. Consistent use of his hearing aids, eye glasses and a structured schedule packed with intervention therapies should set him up for successful development.

Today is the first day of his new life. We pray that we can keep his hearing aids in, his glasses on and find just the right therapists to help him succeed.

We love you all for continuing to check in on our little guy. He's come a long way, has a long way to go, and has a bright light of hope leading the way...

Love to all!

The Nicoll's

Sunday, August 14, 2005 11:11 AM CDT

It's been a while since I've updated - not much to report, I guess...

Cam has had a really fun summer with lots of swim-time and fun in the sun. He has become such a happy, smiley little guy.

His speech therapist sees improvement with every visit, but still no words.

We go back to Duke for his 3-year post-transplant studies next Sunday. We will be there the entire week going through the whole gamut of testing. We will find out about the health of his brain and other vital organs, his hearing, and his overall development compared to last time.

We will have mixed emotions as we land in the city that took the life of our first-born, but has hopefully saved the life of our youngest. Cameron will be faced with blood draws, IV sedation, waiting rooms and exam rooms - this is the price we pay for undergoing an experimental procedure.

When we return he will start his 2nd year of pre-school. We are really looking forward to meeting the new teacher and seeing all his wonderful therapists that we’ve missed so dearly over the summer.

Well, we hope everyone had a nice summer. Thank you for checking in on the Camster. We do appreciate all the support and prayers for his well-being.

All our love, The Nicolls

Monday, July 11, 2005 10:45 AM CDT

Douglas entered into Heaven 2 years ago today. I wonder what it was like for him. I wonder what he's doing. I imagine releasing him like a little white dove flying into the sky - free of everything. Free of the pain and suffering he had to endure here on earth, and free of Sanfilippo syndrome.

Someone once told me (and no one knows if it's true, but it has helped me to cope) that a minute in heaven is equivalent to a year on earth. That means, that if I live for 60 more years (worse-case scenario), that Douglas would have only been away from me for an hour. Pretty good thought, huh?

Well, we do what we can to survive. Nothing really makes the pain and the void go away. Nothing. All I know is each year that passes, I'm a year closer to being with him again.

Douglas, you are OUR DANCING ANGEL. We miss you sweet baby!!

Love, Mom

Wednesday, June 29, 2005 7:44 AM CDT

Well, we had a bit of a scare yesterday, but it all worked out just fine.

Cameron woke up with a 103.5 degree temperature. He felt hot (ya think), and was very lethargic, so I called the pediatrician (like any mom would do), and 20 minutes later we were signing in at his office.

The strep test came back negative, and his ears looked fine. Probably a viurus. A normal kid would have been sent home with "lots of fluids and rest," but not Cameron - he had to be sent up to the Denver Children's Hospital for blood draws and further testing.

As we rushed up to Denver - an hour and a half away, we anticipated the worst - hospitalization - blood infection - all the stuff we've been through over and over.

After holding him down for a nasal wash and 3 tries for the blood draw,(I wanted to kill someone)we fianlly got enough snot and blood to test all the things that could be wrong.

We don't have any of the results yet, but Dr. Quinones and crew were so confident that whatever it is, it can be treated from home - so they sent us home to wait.

We were so relieved. No need for hospitals and IV's. Thank God. He also added that he feels Cameron is in a place where he most likely will NEVER have the need to be treated in a hospital again (regarding post-transplant complications).

We got out of there before anyone could change their mind, and we were back home in time for dinner. The End.

Love to all,
The Nicoll's

Saturday, June 4, 2005 9:09 AM CDT

I couldn't believe when I got the call from Cameron's Speech Therapist this week...

One of her patients, a little 4-year-old boy from Colorado Springs, was diagnosed with Sanfilippo syndrome.

I wept and wept for the family - knowing all too well what those parents are going through. Remembering like it was yesterday, the feeling you have when you are told that your son has a “syndrome.”

A syndrome that is so very cruel and relentless – causing your child to become severely retarded. A syndrome that will ruin every single precious cell in his body - slowly assaulting each and every organ so that the short life they do have on earth is spent in and out of hospitals and exam rooms, confined to a wheelchair, in diapers, with diarrhea, a feeding tube, seizures, bed sores, ear infections, sinus infections, respiratory infections, bone and joint pain – until their death.

Now, think about those two parents leaving the genetic clinic and getting into their car. Imagine what they feel. Imagine being those parents and looking into the back seat of your SUV at this innocent little tiger sitting in his car seat. Absolutely unknowing. Smiling at you like it’s just another day. But it’s not just another day. This is the day that changes the rest of your life. This is the day when your entire world is upside down and sideways. On this day, you wish for death. Death would be the only way to heal the excruciating pain of your heart being ripped out. Death would be the only thing that would stop the torture of not being able to help your child. Death would be the only way out of this nightmare.

That’s day one.

We’re on day 1,125.

That one day - changed our lives forever.

Friday, May 27, 2005 5:02 PM CDT

Cameron "graduated" from his first year of preschool this morning. They had a slide show, and a frozen yogurt party to celebrate. It was hard saying good-bye to all the wonderful folks at Ruth Washburun who have taken such good care of Cam throughout the year. We will miss them!

Today is also Douglas' birthday. He would have been 5 years old today. Happy Birthday sweet Dancing Angel!! We love you more than you'll ever know.

Thank you all for checking in. Have a happy Memorial Day Weekend.

Love to all, The Nicoll's

Monday, May 16, 2005 10:37 AM CDT

The next photos will be of Cameron and his classmates whom, apparently, he is really warming up to...

Last week, Cameron was standing in the hallway of his school when one of his little classmates approched him, tugged him from his elbow, bent around to make eye contact with him and said, "Cameron!"

He turned to her and just stared at her for about 15 seconds, none of us new what he was going to do - he's never made eye contact with a peer before - then all of a sudden, he leaned in to kiss her on the lips! We all burst into laughter and tears!

The rest of the day, he wanted to kiss ALL his classmates on the lips!

I guess this is a sign of development - he went from acting like they did not exist (in his autistic-like state), to reaching out to each and every one of them with an open-mouthed kiss (he still has the infant kiss-thing going).

He's really coming around. No words yet, but I think he's starting to understand things a lot better.

Thank you for checking in on the Camster. We appreciate all the love and support.

All our love, The Nicolls

P.S. Pray that my x-ray goes well tomorrow and they put me in a walking cast!!

P.S.S. My xray was good. I am now in a REMOVABLE (for showering and sleeping) walking boot!! Strong bones heal fast. All that Mexican food (melted cheese) has paid off - hee, hee!

Tuesday, May 3, 2005 7:59 PM CDT

Cam, Doug and I took a short trip to Florida this past week to visit my parents, and on the first day of the trip, I twisted my ankle on the beach and broke both my tibia and fibula - both bones in my legs - right where they connect to my ankle.

The next day I had to have surgery. They cut me open on both sides of my ankles and placed two plates and 9 pins. Now I'm in a cast with crutches.

Thank God for my sister Megan - she's taking time off work to help with Cam.

Cam had a great time on the beach - I thought I had more wave pictures, but after I broke my leg, things got a little rough - but I did get a few...

Thank you all for checking in on Cam. He is doing really well.

Love to all, The Nicolls

Monday, April 11, 2005 7:25 PM CDT

Cam and I were in Walmart the other day and a lady asked me, "does your baby have Down's syndrome?"

I couldn't believe it.

"No." I said, "he has Sanfilippo syndrome." And continued to push the cart forward (away from the woman).

She then yelled out (from a distance) "well what's the difference?"

I turned to her and simply answered, "I don't know much about Down's, but with Sanfilippo - babies are born normal, become retarded at 3, wheelchair bound by 7 and die in their teens."

As the blood ran out of her "deer in the headlights" face, all she could say was, "oh."

Where do people get their nerve? Crazy...

Cam is still doing very well. Nothing really to report.

Thank you all for checking in.

Love to all, The Nicolls

Friday, March 25, 2005 8:27 AM CST

Celebrate!!!

He is Risen!!!

Happy Easter to all!!!

Love, The Nicoll's

Friday, March 18, 2005 5:59 PM CST

Sorry. I've just been waiting for something to happen...

The Cameroonski is doing so well medicallly, that there isn't a darn thing to report. Thank You, Lord.

Development comes slowly these days. I guess we want it all at once so we know that he will be okay - but that's not how it goes.

He learned how to hi-five a couple weeks ago. This is pretty neat because now he has a way of communicating not only with the people he knows, but strangers as well - which will in turn teach him that people in general are friendly and no one is "out to hurt him" anymore.

He also learned to swim with floaties on his arms. This is HUGE because now I don't have to hold him the entire time we are in the pool. Whew.

See, not much to report, but here are some recent pictures of him. Next time we go to the pool, I will try to take some pics. Swimming is by far his favorite thing to do.

Thank you all for checking in on Cam. He needs lots of prayers for his development. Speech and self-help skills to be specific. Thank you for your prayers.

Love to all, The Nicolls

Saturday, February 12, 2005 6:00 AM CST

I received a beautiful note from one of my cousins in the mail today, and written in it was, "I'm so happy Cameron is cured and you can breathe now."

This (and many other inquiries regarding Cam's "status," has inspired me to write this journal entry...

Yes, Cameron has OFFICIALLY SURVIVED TRANSPLANT. A long and painful road for him has finally come to an end with just a trace of Graft vs. Host Disease in his skin, which is managed by smearing steroid cream all over his body after his bath each night. His immune system is functioning at 100 percent, and he is no longer subjected to the risks and fatal complications of transplant.

But NO, Cameron is not cured. There currently is no cure for Sanfilippo syndrome. Our hope is that the stem cells that were transfused into his body will stop the progression of the disease and provide a permanent source of the missing enzyme.

No one knows how the cells will work in the brain. The only way of finding out, is to wait and see. As time goes by, we will know more. Each day that passes we pray that Cam will pick up a new skill, or develop an understanding of the words we speak to him.

For now, at age 3, his expressive and receptive language skills are paralleled with an infant. He is still in diapers, and can't yet master utensils and an open cup. He doesn't scribble, or identify any objects, names, or people
(Where’s mommy? Where's your nose? Those kinds of things...).

But we have HOPE. He remains the youngest Sanfilippo child to undergo treatment, and he was a-symptomatic (no signs of damage from the disease) the day of his transplant. If this turns out to be a successful procedure, then Cameron will reap the benefits.

If it turns out that the stem cells don't go to work in the brain, then the disease will continue to cause brain damage resulting in severe mental retardation and premature death.

We hang our hope for our son on the tiniest traces of progress we see in his day-to-day life, and we pray every single day that the Will of God is to give him a healthy brain and a healthy body here on earth.

We thank you for your prayers as well!!

Thank you for checking in.

All Our Love, The Nicolls




I

Friday, January 28, 2005 10:32 AM CST

Cam and I spent the past 2 weeks in Sunny Florida (where it was 50 degrees and rainy), helping my mom set up her condo for the new tenant.

Even though the weather was less than perfect, Cam had a great time (once he got over his 10-day gastro-intestinal virus) playing in the sand and surf with his cousin, Halle.

We had so much fun the last 2 days of our "vacation," that we decided we have to go back sometime again when it's warm - and bring Daddy with us. I never knew Cam was such a "beach nut"!!

We captured a few photos and made some good memories. I love you, Susie Q!!

Thank you all for checking in. Not much to report these days (which is a much welcomed change!!)

Love to all, The Nicolls

Monday, January 3, 2005 11:29 AM CST

Ahhh, the doldrums of January...Bring on the peace and quiet...

I wasn't going to journal until Cam went back to school, but the most amazing thing happened last night. Doug's friend from high school and his wife and kids (George, Valentina, Ellie and Pratt) spent New Year's Day with us. Pratt is 2 years old, and he and Cam spent the whole night together watching Elmo and eating Doritos in Cam's room (see photo).

Well, they dropped in last night to say good-bye, and when Pratt (the 2 year old) was lying down on the floor for a diaper change, Cameron knelt down over his head and gave him a big kiss on the lips!! This is huge for many reasons. Cameron has not interacted with another child since Douglas died. I feel that not only did he show affection to another child, he remembered him from the night before, and felt friendship toward him. This is an amazing step in his development - I can't describe the surge of emotion that ran through my heart when I saw it. I was overwhelmed.

Cam made the front page of the Metro section in the Gazette Telegraph today. Thank you Cary for following our story.

Happy New Year everyone!!! We wish you the best in 2005!!!

All our love, The Nicolls

Wednesday, December 29, 2004 8:51 PM CST

Whew, it has been a crazy month...

The weekend after Cam's Birthday and Megan's Graduation, Doug, Cam and I flew to Florida for the MPS Conference. It was rough on the heart to see all the MPS children and adults. There were quite a few 3 to 4 year old Sanfilippo and Hunter boys running around - each one of them reminding us so much of Douglas. They all have remarkably similar features.

Once we got there, we weren't convinced it was the right thing to do. I don't think we're quite ready yet. I spent the whole time with tears in my eyes and my heart breaking out of my chest, and Doug spent the whole time saying, "I told you we shouldn't have come - I knew you would do this..."

But, it was good to see some of our old MPS friends, and of course, Dr. K.

We took Cam to Disney World while we were there. He rode the Tea Cups, Peter Pan, Dumbo and Pooh's Adventure. He loved the rides, and loved RUNNING through Epcot - I think we saw 30 seconds of each country.

He was exposed to a lot of new and exciting things that weekend. He ate dinner at The Rainforest Cafe in Downtown Disney at midnight, watched fireworks over The Magic Kingdom at 10:30pm, and even learned to drink through a straw!

A few days after we got home it was Christmas Eve. The stockings were hung on the mantel, the Christmas tree overflowed with wrapped presents, the garland lit up the stairwell, and the house was full of the warmth and laughter of friends and family. It made for a really special night.

On Christmas night, Tim proposed to Megan. YES, after 5 years of courtship, they are finally going to tie the knot!! Congratulations to my little sis! She's had quite a month!!

Cam starts school again on the 3rd. Believe it or not, I can't wait!! They are going to be amazed at the leaps and bounds he has made this Christmas break!

Well, that's all for now. Thank you all for checking in. We hope everyone had a wonderful Christmas - celebrating the birth of Jesus!!

We wish everyone a happy and healthy 2005!!!

All our love, The Nicolls

Tuesday, December 7, 2004 8:14 AM CST

Cam turns 3 on Friday. It's hard to believe...

Tomorrow his classmates will celebrate with him over chocolate Christmas cookies and milk. He doesn't yet understand what a "birthday" is, but it will be fun for the other kids.

On Friday night, we will have his birthday party up in Fort Collins at Aunt Megan's. She is GRADUATING FROM COLLEGE on Saturday morning with her Bachelors in Education/specialty in Mathematics. Hooray for Aunt Megs!! She's so smart.


Cam is surprising us everyday with new milestones. He found out that a ball has some entertainment value, he is sitting down with his books turning pages, and the other day at school, he signed "more." (We are all learning sign language - in hopes we can get him to communicate his needs while he's learning to speak.) He is making new "babbling sounds," making more eye contact, and engaging with toys for more than a split second.

His overall developmental age is around 12 to 18 months right now. We are working on some pretty basic skills, but are hopeful that in time, he will master these and move on to age appropriate skills.

We are so very blessed (once again), to have the wonderful, committed staff at Gold Camp Elementary. In addition to Cam going to school 4 days a week for 2 hours each day, they have offered to come into our home every single Friday for 2 hours to work with Cameron in his own environment. Early intervention is so important, and we want to give him all the tools possible to learn as much as he can. We are so grateful for their dedication.

Thank you all for checking in! We hope everyone is having a good time decorating their trees and racking their brains for the perfect gift for their loved ones!!

Love to all, The Nicolls

Sunday, November 21, 2004 3:34 PM CST

Hello to everyone who still checks in on Cam. Can you believe it's been 2 years since we started this journal? Thank you for your ongoing support and prayers throughout the years - we can't tell you how much it has meant to us, and how much it really helps...

The holidays are already nearing, and sure enough, the loss of Douglas grows stronger, and the pain deeper. We will be setting the table again this year with one missing. Just as he is missed every single second of every single day, he will be missed at the Thanksgiving Table. We do have much to be thankful for, and we will give our thanks as we do every day. But we also have sadness - a deep, painful loss in our hearts that runs through our whole being. A void that has changed us forever, and that has changed everything in our home, in our relationships, and in our lives.

This Thanksgiving, we are thankful for all the wonderful friends who have stood by us through the hard times, prayed for us in the dark times, and cried with us through the sad times. No matter how many times we've wept over the diagnoses of our children, and the loss of our son, our true friends were there - listening and crying as if hearing it for the first time. We would have never made it this far without you.

We want to offer a special prayer to all the families who sit down this Thanksgiving Day who suffer the loss of a loved one. Lord, please give these families the strength to live each day as you would have us, the hope for finding happiness, and peace in knowing that their loved one is being taken care of in Your arms. We ask this in Your name. Amen

We hope everyone has a Happy Thanksgiving. Thank you for checking in.

Love to all,

The Nicolls

P.S. New Photos

Wednesday, October 27, 2004 9:02 PM CDT

Cam had his Halloween Party at Gold Camp Elementary today. Mama Jane, Papa, Daddy and I were all there to watch them parade the other classrooms and dance with Mrs. Hackman. A good time was had by all.

Photos posted for your viewing...

Thank you all for checking in on the Camster - or should I say, "Catster."

All our love, The Nicolls

Sunday, October 17, 2004 10:46 PM CDT

Life for Cameron is on the up and up. In the past 3 months, his life switched from doctors and nurses to teachers and therapists. Instead of packing his bag for the hospital and clinic, we are packing his bag for pre-school and speech therapy.

He is acclamating to the classroom pretty well. I must admit, much better and faster than we gave him credit for. We had it in the back of our minds that he wasn't yet ready, and that soon he would be sent home with a note from the teacher stating, "not ready. Try again next year..."

To the contrary, though, he is exploring the classroom, knocking books off shelves, tearing things off the walls, putting everything in his mouth, ignoring the teachers' instruction - and, apparently, doing it all very well.

He is going to his private preschool (Ruth Washburn) on Thursday and Friday 8:30 to 11:30. And on Mon, Tues and Wed, he goes to the public school (Gold Camp Elementary) from 8:30 to 10:00 where he receives speech therapy, occupational therapy and physical therapy, while he is in a classroom setting with other children.

We are so grateful to Linda Hackman and the staff at Gold Camp Elementary for allowing him to start school early, where he is receiving the education and therapies that he so desperately needs.

The teachers and therapists are so patient with him, and tell me how happy and honored they are to have him in their classroom. It is truly a gift to have met the kind and gracious staff at both schools. They all seem so dedicated to enhancing his growth and development. We are very blessed to have found them.

Cameron is slowly building trust again with the adult world. He even kisses his teacher good-bye. Miracle.

Thank you for checking in on the Camster. I found my compact flash card - I can now take pictures again. I will take some tomorrow of him in his classroom and post them when I get home.

Love to all, The Nicolls

Monday, October 4, 2004 8:02 AM CDT

In December of 2002, there was a newborn getting his stem cell transplant just a few doors down from Douglas and Cameron. His precious name is Baby Jordan. Last Sunday, after almost 2 years of post-transplant complications, Baby Jordan passed away in the pediatric intensive care unit at Duke University Hospital. He was on the ventilator for about 2 weeks when his heart just finally gave out. His mom and dad were the only 2 people in the room at the time as they watched their only child take his last breath.

Please keep Carrie and Patrick in your prayers. I am of the belief that watching your child die is the most painful thing a parent can endure. Please pray for their broken hearts.

______________________________________________________________________

We have been working all year to establish Pennies For Nicoll Foundation as an official, non-profit 501 (c)3) organization with the IRS. We are proud to announce that we have finally receieved that status.

By the grace of God, and the work of human hearts, Pennies For Nicoll Foundation has been established to provide funding and support to families who suffer with MPS.

We are having a Silent Auction Benefit at Phantom Canyon (upstairs) tomorrow, Tuesday, October 5th from 5:30pm to 8:30pm. We will have complimentary appetizers and beer (provided by Phantom), door prizes and a silent auction. It should be fun, and at the same time, supporting a great cause!!! We hope to see EVERYONE there!!!

Cam acts like he never went through transplant. More on him next time!!!

Love to all!!!
The Nicolls

Thursday, September 9, 2004 9:23 PM CDT

Today was Cameron's first day of pre-school!! Two and a half years ago, (right out of the womb), we put him on the waiting list at a wonderful, private pre-K school. Since that time, with the series of events unfolding in our lives, we forgot all about the school. Then, about 4 months ago, they called and told us they had room for Cameron in their "older 2's" class.

As I listened to the message on the answering machine, I was overwhelmed with excitement, followed by a wave of disappointment - and then a possiblity of hope. All emotions were split seconds apart, as a million thoughts went through my head.

My final thought was, "that was then, this is now." He doesn't have an immune system, he doesn't speak, he's not potty-trained and he's severly developmentally delayed - they'll never accept him.

So, I made the phone call to the school and told them that we would be more than happy to register for the slot. Not a word mentioned about anything else...

As the summer months came and went, I prayed everyday that Cam's immune system would be ready for school in the fall, and that he would progress enough to be accepted into the class.

Well, as the school year neared, I got more nervous about it - afterall, I hadn't yet come clean with the staff at the school yet. I wanted to give Cam a chance to catch up before I laid out all of his shortcomings...

When it was time to meet with the teacher, I told her his life story and "where he's at now," she came to the house for a visit and said, "it would be a joy and an honor to have this great little guy in my classroom." I was so relieved. Whew...

So, today was his first day, and he loved it. It's 2 days a week, 3 hours at a time. Tomorrow I'm scheduled to be the "classroom mom." How excited am I???? I don't even know why I went to college. All I've ever wanted to be was a classroom mom who makes cupcakes and creates a new bulletin board each month with new construction paper!!!

He's approaching 1 month of NO GvH medication, and his skin is STILL free of rash. We believe it to ba a minor miracle.

Thank you all for checking in. Hope everyone is well.

Love to all, The Nicolls

Saturday, September 4, 2004 9:46 PM CDT

Daniel is a 17 year-old boy with Sanfilippo syndrome. He underwent a Bone Marrow Transplant 14 years ago, and has remained the only survivor of the treatment.

We had the privilege of meeting Daniel last month. He, his grandma and his great aunt came to visit us at our home. We had a great time getting to know him. We were so very touched by his wonderful sense of humor, affectionate hugs and impeccable manners. He doesn't speak words, but he communicates in a way that everyone can understand - and he understands everything that is said. It was truly an inspiration to meet him. Not only to give us hope for Cameron, but also because this child had an angelic-like spirit that touched us deeply.

His grandma told me that from the time he woke up that day, he kept tapping his watch - giving her the signal that it was "time to go!!" He couldn't wait to meet his Sanfilippo buddy, Cameron.

After a few hours, we said our goodbyes and hugged and kissed. I felt so blessed to have had the opportunity to meet him.

Less than a week later, we received a phone call from his great aunt. Daniel had a terrible accident at a lake right after he got home - he drowned. After all that he endured through transplant, meds, surgeries, rehabilitation, and all the rest - he died.

Please keep Daniel's family in your prayers. I can't imagine how devastating this must be for them. Theresa, please know that you are in my prayers. I cry for you. I pray that your suffering will lessen, and that God will see you through this inconceivably difficult time.

By the grace of God, all things are possible. Somehow.

Love to all, The Nicolls

Wednesday, August 25, 2004 6:00 PM CDT

Cameron's Birthday is actually December 10th (is this how rumors get started??) Funny...

Clinic was a pain in the you know what today. Our first appointment was with Audiology. They tested him with his hearing aids in, and again with his hearing aids out - no significant difference in the results. I guess he has to keep them in consistently for a long period of time before we will notice a difference in the sound booth test. Getting him to keep them in has been quite the challenge. He fights me tooth and nail (literally - he will bite and scratch) when I try to put them in, and then when I finally win the battle, he takes them out 15 minutes later - so who really won the battle? Yes, the toddler.

So, the fight will continue, and hopefully in the end he will give up and keep them in. Hopefully.

His last dose of anti-rejection drug was August 15th. So far we haven't seen a GvH breakthrough - this is great news. The doc wants to keep him on all his other meds for a while until his body has a chance to catch up and realize it's not immunosuppressed.

We had to draw blood from his veins today. Two pokes and she found a vein. Not bad considering a year and a half ago, it took about 13 stabs. I cannot wait for the day that I don't have to hold him down anymore, or take him to the doctor, or give him meds...

We did have a wonderful treat today, though, we got to see Nolan Ramsey - our little MPS friend from Colorado who, by coincidence, had his transplant done at Duke the same time we were there. I got to pick him up and hold him and hug him and kiss him - he is soooooooooooooo cute!!! Each time before that I saw him (like all the other kids), we were on "contact isolation" and were unable to physically interact - so today's hug was an extra sweet goody.

Well, I guess that's all for now. I had some really good news to share, and in 3 days it turned into tragic news - but I will post that next time.

Thank you all for checking in on Cam.

Love to all,

The Nicolls

Sunday, August 8, 2004 11:27 AM CDT

Cameron's port removal surgery went well. No more central line! No more IV meds!! Hooray for Cam!!!

As "perfect timing" would have it, Cam developed an ear infection on the same day we received his hearing aids, so in about a week, we will begin that chapter.

We received Cam's 18-month studies report from Duke. His immune system is functioning at 100%. He is no longer at risk of dying from the procedure. He is finally "out of the woods" from the risks of transplant.

He only has 3 more doses of his anti-rejection drug, at which that time they will draw his blood and see what other drugs they can discontinue. He is truly "in the light" at the end of the tunnel.

As far as his disease goes, we are still hopeful that the transplant halted the damage - but as we have been told from day one, only time will tell.

His speech and language development is the equivalent to a 6 to 9-month old. He goes to speech therapy twice a week, occupational therapy (fine motor development ie: eating with utensils, scribbling, using his finger and thumb to pick up small objects, etc..) once a week, physical therapy once a week, and play-group once a week.

He has an extremely busy schedule, but can always find time to go to the pool. We have learned that swimming is Cam's favorite thing to do - whether it's in a lake, an ice cold river, or a pool. Once he catches a glimpse, he runs straight for it. It's so fun watching him laugh and enjoy something so much.

Thank you all for checking in. Sorry it took me so long to update. His next appointment is on Aug 25th - we will find out what meds we can discontinue!!

Hope everyone is doing well. We miss so many of you!!!

All our love, The Nicolls

Thursday, July 29, 2004 8:50 PM CDT

Cam has surgery tomorrow morning (Friday) at 9:15am to get his port removed. Finally, after 20 months, he will be completely free of a central line. It's a wonderful milestone to celebrate.

Thank you for checking in on the Camster. We hope everyone is doing well. Hugs to all!!!

Love, The Nicolls

Thursday, July 15, 2004 7:05 PM CDT

We have some good news to share...

Our first appointment was with Audiology. They programmed Douglas' hearing aids to fit Cameron - so that saved us about 5 grand. They made the impressions for the molds, sent them to the lab, and the lab will send the molds directly to our house in about 2 weeks. Getting Cam to keep the hearing aids in will be quite a challenge, but will be well worth it when we hear him belt out his first words.

We then strolled up to the Bone Marrow Clinic praying that his port would draw and flush, but to our disappointment, it did not.

Little did we know at that very moment, that this would be a blessing in disguise...

Once we knew the port was not working, it was a matter of deciding whether to replace it, or leave him without. The only time we use it is once a month for blood draws and IVIG (the immune system enhancer). So, I called Dr. K to find out what his immune studies showed, and to see if we could just stop the IVIG altogether, and draw his blood less often than once a month. She told me his immune system is functioning at 100 percent and that he no longer needs IVIG, and she agreed to every other month blood draws. I was so happy I didn't know what to do with myself.

Then, we learned that they can get 3cc's of blood out of a finger prick - which would enable them to run labs on everything. I was a little nervous about having his finger pricked, but our memories of starting IV's in his veins aren't so pleasurable either - so we decided to give it a try. After a warm compress on his hand, the phlebotomist pricked his middle finger, and he didn't even flinch. It was as if he didn't feel it at all. He continued to watch Aunt Megan blow bubbles (until she was light-headed), and never even looked down at the nurse who was "milking" blood from his finger.

We were thrilled to say the least...

So, normal functioning immune system, no more IV meds, blood draws every other month, and he gets to have his port taken out the last week in July. Good stuff!!

We thank everyone for checking in and caring so much about Cam.

Love to all, The Nicolls

Oh yeah, and the WBC that was wiped out last month was from the meds he was on. It's all back to normal now...

Sunday, July 11, 2004 10:21 AM CDT

It was a year ago today that Douglas Hamilton left this world to go live eternal life in heaven. He died on July 11th at 11:11am - right on my lap, surrounded by Doug, Mama Jane, and Aunt Megan at the Pediatric Intensive Care Unit of Duke University Hospital.

Doug and I had to decide that day to pull the plug on our 3-year-old son. He had suffered long enough on breathing machines that were barely sustaining him from the inevitable. As the oscillator was pumping 100 percent oxygen into his lungs, his deteriorating body couldn't hold a level higher than 70%. By the time 24 hours passed with this low of an oxygen percentage, he had suffered irreversible brain damage, and would never recover.

We knew what had to be done. We walked down the endless corridors of the hospital to the PICU like zombies. I could hear shoes clicking on the floor, but I couldn't feel myself walk. We entered into the room where Douglas was lying - hooked up to machines, and IV's - to say our last goodbyes and to put him to rest forever.

They laid him down on my lap and turned off the machines. I sang "You Are My Sunshine" to him and rocked him, and kissed him as he took his final breaths. I held him until he turned blue, then I laid him back down on the hospital bed - never to see him again in this lifetime.

Part of me died that day a year ago. I’m not sure how to deal with it in my life. I know I have a wonderful husband. I know I am blessed to still have Cameron, but I cannot deny that my spirit has been broken, and my soul is crying out in agony. My heart is torn wide open with the anguish of the void we suffer in our family.

He is missing. He is missed. He is thought of every single day. Our house is too quiet, his toys are left unplayed with, his bedroom is now an office that has no meaning, his carseat is empty, the double stroller is off balance, his videos go unwatched, his clothes are packed in boxes, his shoes are in my closet. All we have of him in this house are pictures and memories. We miss his laugh, we miss his fun-loving, dancing, free spirit, we miss the way he yelled out, “Da Da!” and waited for Doug to scare him or tickle him. I miss the way he looked at me with such delight when I would walk into the room, “Mom!!!” (As if he hadn’t seen me for a month.) We miss the way he would turn on Bob Seager, and pull each person by their hand onto his “dance floor” when we had friends over. We miss the way he would clap when we turned off the “Manitou Ave” exit – knowing we were headed to Mama Jane and PaPa’s house. He would start whispering, “Papa, Papa.”

We miss so much about him. Everything about him. He was so special and kind. He was so sweet and giving – never selfish or demanding. He was always an angel - now we know - on loan to us for a very short time.

We were blessed to have been given the gift of loving Douglas. He has taught us so much. We will never fully recover from the loss, but we will always be better people for having been touched by him. We love you, Douglas!!!

Tuesday, July 6, 2004 1:21 PM CDT

Sorry about not updating sooner. We will have more info on July 14th after his clinic and audiology appointment.

Thank you for continuing to check in.

Love to all, The Nicolls

Tuesday, June 15, 2004 9:58 PM CDT

Cam's had kind of a rough month...

The Monday we got back from Duke, Cameron was diagnosed with an ear infection. As it turned out, the tube in his right ear was out and needed to be replaced. They started him right away on an antibiotic - which turned out to not be effective. A week later, they switched him to a stronger antibiotic that gave him horrible diarrhea, and a diaper rash to go with it. He had to stay on the antibiotic until his ear tube replacement surgery, which was yesterday.

The surgery went well - no problems. While he was in the operating room, they did a hearing test, and a dental exam.

The hearing test showed that Cam has permanent hearing loss in both ears and will need to wear hearing aids. Audiology is booked through June, so we will get him in sometime in July.

The dentist had to pull all 4 of his top front teeth due to decay from the chemotherapy and other medications.

We also found out yesterday that his port isn't working properly. Next month we will find out if he needs another port surgery placed on the other side of his chest.

His labs came back today and showed that his white blood cell count is almost gone. It resembles the WBC back in the days of in-patient on 5200 - no immune system.

They think it might be related to a new medicine he is on. We are stopping a couple meds for a week, re-drawing (from his veins, because his port isn't working), and hoping he will recover. If he doesn't, then we will have to draw his bone marrow and run tests.

Please say a prayer for the little guy. We appreciate your continued love and support.

All our love, The Nicolls

Friday, May 28, 2004 8:35 PM CDT

Douglas would have turned 4 yesterday. I'm not sure how that works in heaven. Do we continue to count our birthdays for eternity? I don't know...

We tried not to cry. We tried not to be sad. We tried to remember the glory and the joy that he is receiving, but in spite of our best efforts, the tears and the pain of missing him took over.

Doug and I were like two zombies, not knowing what to say or what to do. My mom and dad took Cam for the day and night (thank God). We cried a river of tears reminiscing about all the laughter and love Douglas brought us.

We went and saw Shrek 2 in his honor. If he were here with us (with normal brain function), that is exactly what he'd want to do...

We were going to go to his gravesite, (that we have yet to visit), but, when it came right down to it, we both admitted that neither of us was ready. Maybe on July 11th…

It was a hard day to get through, but with the strength that God continues to give us, the faith that Douglas is happy and healthy in heaven, and the knowledge that one day we will get to be with him again, we got through it.

HAPPY BIRTHDAY, DOUGLAS – OUR PRECIOUS DANCING ANGEL!!!

WE LOVE YOU!!!!

Saturday, May 15, 2004 8:15 AM CDT

Our trip back to Duke was simply delightful.

First of all, can you imagine just driving up to your private jet, 15 minutes before take-off, walking into the jet center to for a restroom stop, coming back out to find your luggage magically tucked inside the plane, car seat strapped to one of the seats, a cold beverage and continental breakfast waiting for you, and all you have to do is fasten your seatbelt, and you're off... WOW!! What a way to travel!!! THANK YOU MR. AND MRS. JENKINS!!!! Truly a blessing...

When we landed, our rental car was waiting for us, juat about 5 feet from where the plane landed. Before I could turn around, the luggage was in the car, Cam was in his carseat, and we drove off toward Durham, "The City of Medicine."

It felt like home away from home - as if we'd never left. Thoughts of Douglas flooded our minds - the memories of his last months here on earth were more vivid than ever. He was so very sick. At home, our walls are covered with 8x10 frames (and bigger) of him before transplant - with his bleach-blonde hair, and wonderful smile. We try to remember him in his "healthy" (and I put that in quotes because in reality, because of his disease, he was never really healthy) days. But being in Durham, driving by the old apartment, and walking down the same hallways of the hospital that lead to the PICU, we are constantly reminded of how miserable he was.

We are thankful that he is forever free, and is living in eternal happiness in the Kindom of Heaven. We can't help but anticipate the day that we get to be with him and to see him shine up there.

It was WONDERFUL to see some of our old "cronies" again. We were so lucky to run into our dear transplant freinds, Fran, Ellen and Carrie. AND, we got to meet Miss Annabelle Green and her grandma, Chris. There's nothing like talking to someone who REALLY knows what you've been through -priceless. I LOVE YOU GUYS!!!

Seeing all the nurses again at the clinic was like a family reunion. Hugs, kisses, tears and laughter. They ARE family -no doubt about it.

Okay, do you want to know about Cameron? We have SO much good news, we don't know where to start. How 'bout from the head down...

The brain studies show NO SIGN of mental retardation. Brain waves are normal, MRI of the brain was normal, lung capacity is at 100%, chest x-ray showed normal heart and lungs, echocardiogram (heart ultrasound) was normal, nerve conduction test was normal (no neurological damage), liver is normal in size and function, and kidneys are normal.

We will wait about 5 weeks to get immune studies and the enzyme percentage test back. We will explain what that means when we get the results.

We had a lovely time at the developmental center with Dr. Escolar and her staff. They determined that Cam is about a year behind and may have permanent hearing loss - which could attribute to his speech delay. He will undergo further testing at Denver Children's to find out if he needs hearing aids.

His blood test showed that his infection-fighting cells are up and running. Normal is 1200, he is at 1800. He can be around other children, go swimming, go to pre-school, eat in restaurants, go to the zoo, amusement parks - pretty much anywhere EXCEPT Chuck E. Cheese and McDonald's Playland - I guess those places are incredibly dirty. Fine by me...

Because he is officially off isolation, we should see leaps and bounds in his development.

Well, that's all for now. Thank you for checking in. We appreciate all the love, support and prayers!!!

Love to all, The Nicolls

Sunday, May 9, 2004 0:10 AM CDT

We are off to Duke in 6 hours. Our beloved friends, the Jenkins Family, are flying us out there once again on their private jet. How blessed are we to have such a generous offering.

We are anxious and sad as we make our journey back to the city where we lost our precious Douglas, but at the same time, hopeful to learn of the progress our precious Cam is making.

Again, bittersweet. Especially on Mother's Day...

We will be back next week to report all the good news. Until then, we want to send our love out to all, and wish all the wonderful moms in the world a Happy Mother's Day. We hope you will be pampered and taken care of today. You deserve it!!!

Love to all, The Nicolls

Friday, April 23, 2004 5:36 PM CDT

Cam's monthly visit was pretty uneventful, except the part where we had to go down to the ENT clinic to get his ears cleaned out. He didn't like that too much, but it didn't last long.

We get to wean again this month. Each week we will lower his steroids 1/2 mg per dose, and by May 11th, (if his skin GvH tolerates it), he will be COMPLETLEY OFF STEROIDS!! It's hard to believe...

As I have mentioned before, Douglas and Cameron are the 7th and 8th children [with Sanfilippo syndrome] to be transplanted. There were a total of 11 (Julia, Andrew, Kyle, Luke, Jillian, Tommy, Douglas, Cameron, Harmen, Hermes and Aristophanis) until today.

Today is Annabelle's transplant day! She is 27 months old with Sanfilippo syndrome, and today is her special day - the hope for a healthy future. God Bless you, Annabelle!! Stay strong pumpkin! If you'd like to wish her a happy "birth"day, her website is: www.caringbridge.org/id/annabellegreen.

Thank you all for checking in on Cam. He is doing so well right now. We count our blessings everyday.

All our love, The Nicolls

Friday, April 16, 2004 1:48 PM CDT

Today is a "Sunshiney Day" (as my Cousin Michelle would say)...

We haven't been able to get on-line for a few weeks due to some technical errors, so we've been unable to update...

Since Cam's discharge from the hospital, he decided to have a GvH flair - just to make us once again gain perspective on how well he is doing, and to STOP COMPLAINING!!!

We had to SUPER STRESS dose him with steroids for about a week, and then slowly wean him back to where he was. The stress dose calmed his skin down on the third day, and by the end of the first week, the GvH was gone. Praise God.

The wean went well, and now he is back to where he was last month. Great.

The most exciting news of all is: Spring has sprung, and the flu season is officially over! Cam is allowed a few more freedoms: Off hours of - grocery store, restaurants, mall and department stores. As long as they're not packed with people, he is allowed.

This has given us an enormous renewed sense of freedom - just in the nick of time I might add. Cabin fever was starting to set in, and it wasn't pretty...

Well, I guess that is it for now. Thank you for checking in on Cam. We appreciate all of your love and prayers.

Love to all, The Nicolls

Tuesday, March 30, 2004 1:24 PM CST

My inbox has been inundated with encouraging letters begging me to "keep the faith," and not lose hope. Thank you for caring so much, and taking the time to tell me. Some of you I don't even know...

My faith is as strong as it always has been - clear and present in my heart now more than ever before. I know that my first-born son is safe in the arms of Jesus. Happy and healthy in the Kingdom of Heaven. This is the only thing that brings me comfort on a daily basis. I thank God everyday for giving my son complete healing. I am so happy for Douglas. He is like a little bird that has been set free from a cage filled with pain and suffering - flying up in the sky - forever free of disease - dancing in the clouds.

I, though, must live the rest of my entire life here on earth without him, and my broken heart will never be healed in this lifetime. But, enough about that...

We just found out Cam is iron-defecient and has to be on iron supplements for a month. The iron tastes like liquid metal (probably because it is). Twice a day for 30 days isn't too bad - let's just hope it doesn't drag on longer than that.

Our trip back to Duke is scheduled for May 9-14th. I hope that coincides with other familiar familes' returns.

Thank you for checking in on Cam.

Love to all, The Nicolls

P.S.

Here is an article that I think may be of interest to everyone who is holding their breath and praying for Cameron's cure.

The 4 year old boy they are referring to is our precious little buddy, Kyle Scott Cottey, who passed away the day before Christmas Eve when we were on 5200 with him...

Cord Blood Cells Proven to Differentiate Into Heart Muscle and Brain Cells
DURHAM, N.C. -- Scientists at the Duke Comprehensive Cancer Center have scientifically validated for the first time that stem cells in umbilical cord blood can infiltrate damaged heart tissue and transform themselves into the kind of heart cells needed to halt further damage.

Clinical proof of this principle has existed for a decade, as Duke physicians have used cord blood to correct heart, brain and liver defects in children with rare metabolic diseases. But until now they lacked the molecular evidence to prove that cord blood stem cells were the root of a cure.

Now, the Duke team has dissected heart tissue to confirm the presence of donor stem cells in heart tissue. Moreover, they showed that donor stem cells had differentiated into heart muscle cells called myocytes, which then produced the critical enzyme needed to halt the progressive heart damage, said Kirsten Crapnell, Ph.D., a research fellow at Duke.

Crapnell will present the team's findings at the International Association of Bone Marrow Transplantation Research meeting Feb. 12-17 in Orlando, Fla.

"We've had convincing clinical evidence that stem cells from umbilical cord blood extended much farther than the blood-forming and immune systems, and that they can differentiate themselves into brain, heart, liver and bone cells," said Joanne Kurtzberg, M.D., director of the Duke Pediatric Bone Marrow and Stem Cell Transplant Program. "But now we have examined heart tissue on a cellular level and proven that donor cells are not only present in heart tissue, but they have become heart muscle cells."

To validate the stem cells' activities, Crapnell dissected and analyzed heart tissue from a 4-year-old boy whose transplant was successful, but who later died of an infection before his immune system was strong enough to fight it. The boy had suffered from a rare metabolic disease called Sanfilippo Syndrome B, in which the body is missing a critical enzyme needed to break down complex sugars in various cells. As sugar byproducts accumulate in vital organs such as the liver, heart and brain, cells become damaged and die.

Duke physicians had observed that children with these rare metabolic diseases tended to regain organ function more rapidly when given cord blood rather than traditional bone marrow. They theorized that cord blood stem cells, being less mature than stem cells in adult bone marrow, could more easily adapt to their new surroundings and respond to signals that differentiate them into the needed kind of cell.

Indeed, it appears that donor stem cells inexplicably home in on defective tissue and establish themselves there, as though they are missionaries recruited to rescue cells in need, the scientists said. Proof of this principle has come from various imaging studies which demonstrate that certain organs regain function after cord blood transplants. But no one had shown that cord blood cells were actually present in these organs and the reason behind the improvements -- until now.

Crapnell proved the presence of donor stem cells in the young boy's heart by searching for aberrant female stem cells (from his baby girl donor) amid his largely male heart cells. She used two fluorescent stains to label heart cells as either male or female. The red stain would be attracted to female X chromosomes and the green stain would be attracted to male Y chromosomes. The fluorescent colors would easily illuminate the gender of each cell.

Crapnell then used two additional antibody stains to test for cell surface "markers" -- sites on the surfaces of cells -- that indicate what type of cell it is. The first stain had an affinity for troponin, a protein on the surface of heart cells. The second stain had an affinity for myosin, a protein on the surface of muscle cells. Again, she could easily label each cell as a heart muscle cell or one of another origin.

She found that, although few in number, the female heart cells were clearly illuminated amid a larger pool of male heart cells (called myocytes). Just a few donor stem cells are enough to provide a wide swath of damaged tissue with the enzyme necessary to restore function, the researchers believe.

CORD BLOOD STEM CELLS DIFFERENTIATE INTO BRAIN CELLS

The same phenomenon is likely at work in brain tissue as well, said Jennifer Hall, MD, a research fellow at Duke who is also presenting at the International Association of Bone Marrow Transplantation Research meeting.

Cord blood transplants appear to halt or slow the progressive brain damage that is caused by metabolic diseases such as Sanfilippo Syndrome, Krabbe Disease and Hurler's Syndrome. Yet precious time is lost as the stem cells traverse their way from the bloodstream into the brain, where they eventually engraft and differentiate into the needed types of brain cells. Meanwhile, children may miss a critical therapeutic window of treatment.

If scientists could somehow nudge stem cells toward becoming the needed brain cells, then deliver them directly to the patient's brain in their differentiated state, doctors could theoretically spare some patients irreversible brain damage.

So Hall tested the potential of hematopoietic stem cells to differentiate inside a test tube into specific kinds of brain cells, called oligodendroctyes. These brain cells are targeted for destruction in children with metabolic diseases.

Hall cultured a unit of cord blood stem cells in a flask together with growth factors, hormones and other compounds that direct stem cells toward the oligodendroctye lineage. One month later, Hall analyzed the cells under a microscope and found that 60 percent of them appeared to resemble cells of an oligodendrocyte lineage.

Hall validated her observations by staining the cells with various antibodies that only bind to and illuminate proteins unique to oligodendrocytes precursor cells. Similarly, she stained the cells with antibodies for a host of other cell types. The presence of unique proteins in a given cell confirms that it is actively producing that protein, not just that its genetic code is capable of doing so, said Hall. In this case, the oligodendrocytes were producing the needed protein or enzyme.

"The therapeutic goal is to rapidly produce oligodendrocytes in the lab, and then infuse them into patients soon after transplant," said Hall. "Delivering cells directly to the brain could hasten engraftment of the cells and could ultimately result in repairing of neurologic tissue."

Hall said the potential also exists for repairing spinal cord injuries and multiple sclerosis, which -- like the metabolic "leukodystrophies" -- result from deterioration of the myelin sheath that coats nerve cells.

Sunday, March 28, 2004 8:34 PM CST

He's out!!

What a scare. Having the constant fear that a fever leads to death is a horrible way to live - but it's our dreadful reality - it's the way we lost our precious Douglas.

So many excruciating memories flooded my head as I watched them hook Cameron up to the IV's, and pump him full of Vancomycin, Ceftriaxone, Hydrocortizone, Potassium - basically a hodge-podge of guess work until test results revealed the culprit...

After 48 hours, we were blessed with negative blood cultures, negative viral tests, and a temperature within normal limits. He was discharged, and is doing well.

We weren't so blessed, though, with Douglas. His fever never broke. He went on for 3 weeks with a high fever and no explanation. The source was finally found in the autopsy - a virus in his lungs and another virus in his liver. Why couldn't they detect it while he was still alive? Why didn't they think to look? Why didn't any of the thousands of tests they ran show it? Why why why...

Being in the hospital again ripped my healing heart wide open. I know I have to go on to take care of Cam, and possibly even bury him in a few years, but what I really want is to have this “life” (if that’s what you want to call it) over and done with. Day to day, I try to be positive, and look at "the good side," but really, I'm just surviving. Muddling through daily life. Getting by.

Hope for Cameron is high. Hope for me ever finding true happiness again is extremely low - until I get to Heaven. I never thought I would live my life in despair, but no matter how hard I try not to, at the end of each day, that's what I feel. Despair.

Cameron continues to improve daily. His labs look wonderful. The normal liver enzymes we were anticipating (due to no more Voriconazole) are here. We thought we were looking at a “normal” kids’ lab report - pretty exciting stuff for the Camster.

Thank you for checking in. We appreciate all the prayers and support.

Love to all, The Nicolls

Thursday, March 25, 2004 12:27 AM CST

Cameron had to be admitted into the hospital Wednesday for high fever and vomitting. They (Denver Children's Hospital) are going to keep him for at least 48 hours for testing and observation. So far, the first round of blood cultures are coming back negative. He still has a fever, so the calculated guess right now is that he has a virus.

He is on a couple different IV antibiotics, stress dose hydrocortizone and a continual potassium drip. Please pray that the doctors find the source of the fever, and are able to sucessfully treat him.

We will update again as soon as we have more information.

Our trip back to Duke, (which was scheduled for March 28 through April 2nd), has been postponed until Cameron recovers.

Thank you for your prayers.

Love to all, The Nicolls

P.S.

Here is an article that I think may be of interest to everyone who is holding their breath and praying for Cameron's cure.

The 4 year old boy they are referring to is our precious little buddy, Kyle Scott Cottey, who passed away the day before Christmas Eve when we were on 5200 with him...

Cord Blood Cells Proven to Differentiate Into Heart Muscle and Brain Cells
DURHAM, N.C. -- Scientists at the Duke Comprehensive Cancer Center have scientifically validated for the first time that stem cells in umbilical cord blood can infiltrate damaged heart tissue and transform themselves into the kind of heart cells needed to halt further damage.

Clinical proof of this principle has existed for a decade, as Duke physicians have used cord blood to correct heart, brain and liver defects in children with rare metabolic diseases. But until now they lacked the molecular evidence to prove that cord blood stem cells were the root of a cure.

Now, the Duke team has dissected heart tissue to confirm the presence of donor stem cells in heart tissue. Moreover, they showed that donor stem cells had differentiated into heart muscle cells called myocytes, which then produced the critical enzyme needed to halt the progressive heart damage, said Kirsten Crapnell, Ph.D., a research fellow at Duke.

Crapnell will present the team's findings at the International Association of Bone Marrow Transplantation Research meeting Feb. 12-17 in Orlando, Fla.

"We've had convincing clinical evidence that stem cells from umbilical cord blood extended much farther than the blood-forming and immune systems, and that they can differentiate themselves into brain, heart, liver and bone cells," said Joanne Kurtzberg, M.D., director of the Duke Pediatric Bone Marrow and Stem Cell Transplant Program. "But now we have examined heart tissue on a cellular level and proven that donor cells are not only present in heart tissue, but they have become heart muscle cells."

To validate the stem cells' activities, Crapnell dissected and analyzed heart tissue from a 4-year-old boy whose transplant was successful, but who later died of an infection before his immune system was strong enough to fight it. The boy had suffered from a rare metabolic disease called Sanfilippo Syndrome B, in which the body is missing a critical enzyme needed to break down complex sugars in various cells. As sugar byproducts accumulate in vital organs such as the liver, heart and brain, cells become damaged and die.

Duke physicians had observed that children with these rare metabolic diseases tended to regain organ function more rapidly when given cord blood rather than traditional bone marrow. They theorized that cord blood stem cells, being less mature than stem cells in adult bone marrow, could more easily adapt to their new surroundings and respond to signals that differentiate them into the needed kind of cell.

Indeed, it appears that donor stem cells inexplicably home in on defective tissue and establish themselves there, as though they are missionaries recruited to rescue cells in need, the scientists said. Proof of this principle has come from various imaging studies which demonstrate that certain organs regain function after cord blood transplants. But no one had shown that cord blood cells were actually present in these organs and the reason behind the improvements -- until now.

Crapnell proved the presence of donor stem cells in the young boy's heart by searching for aberrant female stem cells (from his baby girl donor) amid his largely male heart cells. She used two fluorescent stains to label heart cells as either male or female. The red stain would be attracted to female X chromosomes and the green stain would be attracted to male Y chromosomes. The fluorescent colors would easily illuminate the gender of each cell.

Crapnell then used two additional antibody stains to test for cell surface "markers" -- sites on the surfaces of cells -- that indicate what type of cell it is. The first stain had an affinity for troponin, a protein on the surface of heart cells. The second stain had an affinity for myosin, a protein on the surface of muscle cells. Again, she could easily label each cell as a heart muscle cell or one of another origin.

She found that, although few in number, the female heart cells were clearly illuminated amid a larger pool of male heart cells (called myocytes). Just a few donor stem cells are enough to provide a wide swath of damaged tissue with the enzyme necessary to restore function, the researchers believe.

CORD BLOOD STEM CELLS DIFFERENTIATE INTO BRAIN CELLS

The same phenomenon is likely at work in brain tissue as well, said Jennifer Hall, MD, a research fellow at Duke who is also presenting at the International Association of Bone Marrow Transplantation Research meeting.

Cord blood transplants appear to halt or slow the progressive brain damage that is caused by metabolic diseases such as Sanfilippo Syndrome, Krabbe Disease and Hurler's Syndrome. Yet precious time is lost as the stem cells traverse their way from the bloodstream into the brain, where they eventually engraft and differentiate into the needed types of brain cells. Meanwhile, children may miss a critical therapeutic window of treatment.

If scientists could somehow nudge stem cells toward becoming the needed brain cells, then deliver them directly to the patient's brain in their differentiated state, doctors could theoretically spare some patients irreversible brain damage.

So Hall tested the potential of hematopoietic stem cells to differentiate inside a test tube into specific kinds of brain cells, called oligodendroctyes. These brain cells are targeted for destruction in children with metabolic diseases.

Hall cultured a unit of cord blood stem cells in a flask together with growth factors, hormones and other compounds that direct stem cells toward the oligodendroctye lineage. One month later, Hall analyzed the cells under a microscope and found that 60 percent of them appeared to resemble cells of an oligodendrocyte lineage.

Hall validated her observations by staining the cells with various antibodies that only bind to and illuminate proteins unique to oligodendrocytes precursor cells. Similarly, she stained the cells with antibodies for a host of other cell types. The presence of unique proteins in a given cell confirms that it is actively producing that protein, not just that its genetic code is capable of doing so, said Hall. In this case, the oligodendrocytes were producing the needed protein or enzyme.

"The therapeutic goal is to rapidly produce oligodendrocytes in the lab, and then infuse them into patients soon after transplant," said Hall. "Delivering cells directly to the brain could hasten engraftment of the cells and could ultimately result in repairing of neurologic tissue."

Hall said the potential also exists for repairing spinal cord injuries and multiple sclerosis, which -- like the metabolic "leukodystrophies" -- result from deterioration of the myelin sheath that coats nerve cells.

Saturday, March 20, 2004 10:47 AM CST

Today is the first day of Spring - Happy Day!! Even though it will snow several more times before summer comes, the fact that "Spring" is finally here gives us a little boost.

Yesterday it was so warm, Cam and I spent the whole day outside. HE DIDN'T WATCH ONE VIDEO ALL DAY (minor miracle). It was a little glimps of what normal life will be like...

The wean is going as planned - no set backs so far. Starting today, he is on 1mg of steroid twice a day, every other day. This is the lowest dose he's ever been on. We are hoping his skin will continue to tolerate this low amount. Each time we lower his steroid and anti-rejection drug, his immune system has the opportunity to strengthen - which means - freedom, growth, development, playtime with other children, pre-school, and maybe even Chuck E. Cheese!!

His next clinic day is next Wednesday. We are looking forward to yet another wean!!

Well, that's it for now. Thank you for checking in on Cam Cam.

All our love, The Nicolls

Friday, March 5, 2004 4:41 PM CST

Cam had a great monthly visit last Wednesday. Dr. Quinones took him off one of his meds: Voriconazole. No more anti-fungal drug. He feels that his immune system is strong enough to fight fungus without help. This is GREAT news for many obvious reasons; one being that this particular drug wreaks havoc on the little guy’s liver. His liver enzymes are sky rocketed due to this drug. It will be nice to see those come back down to normal.

He’s still tolerating his wean (knock on wood), and today we plan to start another wean from the steroid. Things are really looking up for the Camster.

Thank you all for checking in on him. We are so thankful to still have your support.

Love to all, The Nicolls

Friday, February 13, 2004 10:21 AM CST

Something came over me the past few days...

Somehow, someway, I can see the glory of Heaven, and the joy of Douglas being there clearer than ever. It's almost as if somehow the cliché of "he's in a better place" finally rang true in my heart. His soul was ready to go. God relieved him from all the pain and suffering of what was to come to him, and gave him eternal health and happiness. Six months ago I remember writing these words, and even saying these words, but was in too much agony to realize what I was saying.

Douglas doesn't miss us. He watches over us and he hears us talk to him, but he doesn't long to be back here with us. He is perfectly content, and wants us to understand that he IS happy. And what more could a parent ask for than their children to be happy and healthy?

Of course, I still miss him terribly and still sit and cry for him everyday...

Cam is tolerating his wean very well. No setbacks so far. By next week, he will be alternating steroid and anti-rejection every other day. These are the two drugs that compromise his immune system. If his skin continues to look this good by his next appointment, (February 25th), then Dr. Q. will wean his steroids again. Which means his immune system will gain strength, which means he will be able to get out and see the world soon!!

Thank you for checking in on the Camster. We posted new pictures of all the new stuff he's doing these days - take a look!!

Love to all, The Nicolls

Thursday, January 29, 2004 2:50 PM CST

***I have a new e-mail address. It is tracienicoll@adelphia.net. Doug's is still the same at dnicoll@wm.com***

Cam had his monthly visit with Dr. Quinones yesterday. His skin looked so good that the doc looked at him and said, "hey, this is a home run!" Music to my ears!!!

We get to wean his anti-rejection med this month. A little bit each week so that by the end of the month, he will only take it every other day (just like he's taking the steroid now). The steroid and the anti-rejection drug will be alternated every other day so that he never takes both on the same day.

If his skin GvH tolerates this wean, then it will be a great stride toward his immune system gaining strength, his blood pressure going back down to normal, and finally reducing/taking him off all of his other medications.

Which means there might be light at the end of this dark tunnel of winter and isolation!!

We got through January. Now we hope for a successful wean through February, and hopefully March will bring the beginning of building a healthy immune system!

Thank you all for checking in on the little man. He is doing GREAT!! We appreciate all the prayers - keep them coming!!

Love to all, The Nicolls

Wednesday, January 21, 2004 10:24 PM CST

The snow is falling here in Colorado. The ground is covered with a blanket of fluffy white. Our desperately parched earth is anxiously drinking up the long-awaited moisture. It makes for a beautiful scene here in the Rocky Mountains.

Cam is over his cold. We never heard back from the lab as to what he really had, so we are assuming it was a common cold. Too "common" in "the real world" for the lab to recognize it as anything worth reporting to the parents, but the silence of no phone call is a reason to celebrate in our household.

He is gaining strength and picking up new skills every day. His skin rash is looking better than it ever has, which means his GvHD is looking like it's trying to "fizzle out." Meaning, his donor cells are beginning to accept his body as their home. His next appointment is on the 28th. We are hoping Dr.Quinones will wean his steroids (which will allow his immune system to get stronger).

Thank you all for checking in on our Cam Cam. We appreciate all the support everyone has given us – even still – after all this time.

Love to all, The Nicolls

Tuesday, January 6, 2004 9:46 PM CST

What we have been given is so very cruel: Watch our children suffer a slow, gradual death, or take them to death's door ourselves and hope for the best. What kind of choice is that? I have no way of expressing my tortured soul. I have no way of healing. No way of forgetting. I am a mother who has buried her firstborn son - that will never change. I often times wonder HOW (not WHY) I'm going to go on. I look at the "New Year" and feel like I'm standing at the bottom of a cliff looking all the way up. This is only the first of the many, many years that I have to get through before I am relieved of this excruciating loss.

I miss Douglas so much. My heart is in shreds and I cry a river for him everyday. I would do just about anything to get him back. Sometimes I have fleeting thoughts of going to his grave site and digging him up - just to hold him in my arms again.

Cam fell asleep in my arms this evening, and it brought back a memory of when I first brought him home from the hospital. I was nursing him in my right arm, and Douglas stood there blowing on his forefinger (trying to do the "shhhh" thing - but didn't have it quite right), and saying with a quiet voice, "shhh, baby..." He then crawled up into my lap and layed on my left side. Everything felt perfect. I felt so blessed. I never thought anything this horrible would ever happen to me...

New Year's Day Cam woke up with a snotty nose. We got him tested the next day. So far, pneumonia, RSV and influenza are all negative. Praise God. It looks like he has a cold again - and if his body is as strong as it was in October, then he should be able to fight it off on his own. We are back in isolation, now, so he will be safer; however, it was nice having Michael, Shayla, Megan and Tim home for the holidays. I was able to get out and enjoy some free time with the help of my family.

Thank you all for checking in on Cam Cam. We hope everyone has a Happy New Year.

Love, The Nicolls

Monday, December 15, 2003 7:52 PM CST

I finally updated the photos (sorry I took so long)!!

I made sure the digital camera was ready with a full battery, and a new tape in the camcorder with a full battery, but what I forgot to do was to ask someone to actually take the picture as Cam Cam destroyed his cake. Details, details... I guess I was wrapped up in the moment (or already had too much wine)...

His birthday party was bittersweet. Another milestone filled with hope, but of course shadowed with the pain of missing Douglas, and the unknown future of Cam and the unanswered question of how many more birthdays we get to celebrate with him.

This time of year is excruciating. Not only is it "the holidays," but more so, it represents the time of year the boys went through transplant. It was the last time we ever saw Douglas healthy. The last picture we have of him with his blond curly hair was in a santa hat sitting in his hospital bed on 5200. The next day, his head was shaved, steroids kicked in, and the black cyclosporin hair took over his entire body. We never saw our Douglas look like Douglas again.

We miss him so much. Our hearts and our lives will NEVER be the same.

Thank you all for checking in.

Love to all, The Nicolls

Wednesday, December 10, 2003 9:39 AM CST

Cam turns 2 today. Happy Birthday, Cam Cam!!!

He is really doing well these days. He loves not having central lines hanging from his chest, and a bandage irritating his skin. The port is a wonderful thing. I will post a picture of his bare chest tomorrow, along with his birthday party pictures. It's a beautiful sight...

The big news is that he is giving Daddy kisses now!! He is finally learning to trust us, and becoming more and more loving (like he was before transplant).

His clinic visits, blood draws and IV meds are only once a month now. We really can't believe it. He is reaching milestone after milestone.

Thank you all for checking in on Cam. We hope everyone is doing well during this holiday season.

Love to all, The Nicolls

Thursday, December 4, 2003 9:40 AM CST

Well, it happened. Cam Cam experienced a BUBBLE BATH for the first time in a whole entire year!! I thought it was going to be a splashing, laughing affair, but really it was nothing of the sort.

He lay there in the warm, sudsy water, his body completely submerged, and he just kind of babbled and sang in a soft voice. His eyes rolled back in his head as I lathered up his hair and massaged his head with shampoo. We rinsed him off with the shower handle, and he had goose bumps on his back and arms as the water drenched his shoulders, back and chest for the first time in over a year. And then we did it again the next night, and the next night - and we'll do it again tonight!!

They accessed his port for the first time in clinic yesterday. The site was still bruised and sore from surgery (which was only a week ago), so we're hoping it will be a nicer experience next time...

Colorado is having a flu epidemic. Yes, Colorado. Yes, flu. It's scary. We are taking extra precautions to protect Cam. We are limiting visitors in the house, limiting our exposure to big groups of people, continuing to wash our hands often, and not taking Cam out of the house. It is recommended by his bone marrow doctors that everyone who is going to be in contact with him, get their flu shot. Even Denver Children's Hospital has visitation restrictions: No one under the age of 12 can visit - even siblings. Three children have died so far - and they had healthy immune systems!! Cam definitely wouldn't be able to fight this one off.

The holidays are hard without our precious Douglas. His stocking is hanging on the mantle, but there's no reason to stuff it. The loss we feel haunts us everyday. I apologize to him everyday, hoping he knows how sorry we are for putting him through so much pain and suffering. I am sure he is being taken care of now - much better than we could do here on earth, but it doesn't take the pain in our hearts away - and nothing will ever fill the void that we will have for the rest of our lives. We will always miss him.

Thank you for checking in on the fam. We love you all.

The Nicolls

Wednesday, November 26, 2003 7:11 PM CST

When we got home from Cam's surgery this evening, there was a message on our answering machine. I don't even know how to write these words, but I will try...

Our little Sanfilippo friend, Tommy Bennett, passed away yesterday on 5200. He had a terribly long and treacherous year, enduring 3 transplants, 3 rounds of chemotherapy and full body radiation. His third transplant was successful, but then, unfortunately, he suffered other complications.

Tommy just turned 4 years old. He always had a smile on his face, and was always ready to give you a hug and a high five. He was a very special child, and will be greatly missed.

Please keep the Bennett Family in your prayers. They have 2 other children with Sanfilippo syndrome, ages 5 and 7. If you would like to leave a heart-felt message in their guest book, their website is: www.caringbridge.org/ca/bennettboys



To date, there have been eleven Sanfilippo children transplanted. Of the eleven, five have died.

I'm not sure how we are going to get through tomorrow. Halloween was hard, Thanksgiving will be harder, and Christmas will be the hardest - until his birthday in May - that will be the worst.

We will have a picture of Douglas on top of his plate at his seat tomorrow, and we will try to be thankful for everything The Good Lord has given us. It will be, and has been, very difficult.

Cam's surgery went well. He is extremely sore. Thank you for your prayers, and thank you for checking in.

Once again, Happy Thanksgiving.

Love, The Nicolls

Tuesday, November 25, 2003 10:03 PM CST

Cameron will go into surgery Wednesday at 11:45am for his port. Please keep him in your prayers.

Thank you all for checking in. We would like to wish everyone a healthy and blessed Thanksgiving.

Love to all, The Nicolls

Thursday, November 13, 2003 6:17 PM CST

Thank you for all your prayers for Cameron's surgery - they worked!!

His arm is still very sore from surgery. They had a hard time finding a good vein in his chunky little arm, so they had to make an incision in the crease of his elbow. Ouch.

The PIC line is EXTREMELY easy to pull out. It's anchored to his arm with 2 stitches, but other than that, there is nothing else holding it in place. He needs to have it until his port surgery (2 weeks)- and as active as he's been, it's going to be quite a challenge keeping it from being yanked out. If it accidently comes out, it's back to the operating room.

Dr. Quinones wants the Vanco to run 7 days once the PIC was placed; so, we will administer it through his PIC line every 8 hours through Monday night. Then, we will go to clinic Wednesday to test his blood for cultures. If by the end of the week the cultures remain negative, they will schedule him for his port surgery. Two weeks after his port surgery, HE WILL FINALLY BE ABLE TO TAKE A BATH!!!

I'm hoping his birthday present (December 10th) will be a warm, sudsy bubble bath with toys and body paint, and splashing - all that fun stuff!!!

You WILL NOT BELIEVE how yummy the oral potassium is!! It tastes like liquid butter rum candy (or Butterscotch Schnapps - whichever is your frame of reference). They must have made some improvements!! We stressed about that for months, and now it's a split second of swallowing a half a teaspoon in comparison to a daily 2-HOUR IV infusion!! What a bunch of worry for nothin'!! Kinda nice for a change...

After we finish the Vanco, all his meds will be oral!! This is yet another milestone that we've been shooting for for months!! Hooray for Cam Cam!!

Here is a list of his meds he takes twice a day (all liquid):

1.)Steroid
2.)Anti-rejection
3.)Anti-viral
4.)Anti-fungal
5.)Anti-pnuemonia
6.)Blood pressure medication
7.)Stomach lining protectant
8.)Calcium folate (1x per day)
9.)Magnesium (1x per day)
10.)Potassium (1x per day)
11.)Multi-vitamin (1x per day)

His IV meds will both be done at clinic ONCE A MONTH
1.)Immune system enhancer drug
2.)Graft versus Host Disease drug

His blood draws and clinic visits will be TWICE A MONTH!! Not bad, huh??? Remember when clinic visits were daily??? We've come a LONG way, down a LONG road. It's not over yet, but I feel it's the beginning of a new chapter with long-awaited freedoms.

Love and hugs and kisses and smiles to all!!

We love you, The Nicolls

Wednesday, November 12, 2003 9:30 AM CST

All went well with Cam's surgery yesterday. The surgeon removed his central line, and placed a temporary PIC line in his arm. I'm glad I didn't know what a PIC line was until right before surgery…

A PIC line is placed (usually) in the arm or wrist, and is threaded up the vein all the way to a central vein near the heart. They thread the catheter through the vein using an x-ray type machine so they can see where they're going. MORE INFORMATION THAN I NEED TO KNOW. Just the thought of it makes my palms sweat.

So, everything went well and he was out of surgery in a little over an hour. Without any complications (unlike Douglas'), we were able to take him home a few hours after recovery. Yeah!!!

We start oral potassium today. I will let you know how that goes on the next update. The good news is it's only 2.5 cc's (1/2 teaspoon). I thought it was going to be 8cc's (2 teaspoons). Shouldn't be TOO bad. We'll see...

My Grandma Cain is having surgery today. Please keep her in your prayers. She is a wonderfully strong woman, but at 85 years old, risks of anesthesia are high.

We hope you all feel our love and appreciation for your kindness and support. Without this website and the guest book, we would feel very alone. Thank you so much!!

All our love, The Nicolls

Sunday, November 9, 2003 4:00 PM CST

We got the call Thursday night at 11pm. Cam's line is positive. After 122 doses of Vancomycin (a really potent IV antibiotic), the bug is still hangin' on...

He is scheduled for surgery Tuesday, November 11th (Douglas' 4 month anniversary). They will take out his central line, and replace it with a temporary line until his blood cultures remain negative for 2 weeks. They will then place a port, which he will have through next spring.

We started another round of Vanco (every 8 hours) for another 2 weeks. When this is all said and done, he will have gone through 164 doses of Vanco. Scary.

Our hope was that at his one-year anniversary, we wouldn't need to access his veins; and therefore would be able to pull the line and be done with it. But, as it turns out, we are right smack dab in the middle of flu and viral season, and his immune system is still compromised, so he will be on IVIG (an immune system enhancer drug), until spring. In Colorado "Spring" comes somewhere around May or June. Basically, we're looking at 6 more months of needing access to his veins. Because his medicine needs are going to be more long-term than we expected, we thought the better choice would be to place a port instead of another central line. A port is placed under the skin, and provides direct access to a large vein. Similar to a central line, except nothing hangs from the external chest. We decided on a port for a few reasons:

1. Nothing will be hanging from his chest.
2. No risk of pulling it out.
3. Less risk of infection.
4. No more discomfort of lying on the lines and clamps.
5. No more irritated skin from bandage.
6. No more bandage changes, cap changes or flushes.
7. No more home IV medicines.
8. And last but certainly not least; he can take a warm, sudsy BUBBLE BATH!!!

There are a few downsides to having a port:

1. They have to poke through his skin with a needle to draw blood (which will be twice a month), and to administer his IV medication (which will be once a month).
2. He has to take his steroids, and his potassium and magnesium orally – and from what I hear, they both taste like ASS. So that will be a daily struggle.

The good news is that there is a numbing cream they can use that supposedly prevents any pain from the needle, and if I can get him to eat enough bananas and chickpeas, he won’t have to take the yucky electrolytes.

Well, that’s it in a nutshell. He goes “under the knife” Tuesday. They have no idea what time. Hopefully, we will be able to take him home after recovery in post-op. That’s the plan.

Thank you for checking in on the little Cam Cam.
Love to all, The Nicolls

Saturday, November 1, 2003 8:40 PM CST

As I sit down to write tonight, I can hear Doug singing Christmas songs and dancing with Cam in the living room. Cam is belly-laughing out loud!! I don't know if it's because his dad doesn't know the words, or can't carry a tune, but either way, it's WONDERFUL to hear him laugh!!

Cam has been making leaps and bounds in the world of toddlerism. By 4pm the house looks like a tornado hit, with all his toys, videos, tupperware, knickknacks and what nots all over the place. After the morning meds, we turn the living room into an obstacle course with the cushions on the floor so he can climb from the floor to the cushion to the couch, on to the ottoman, in between the chair and back around to the dining room where I found him standing on top of the hearth, reaching into the fireplace to get the candles.

After Sesame Street ends at 10am, we turn off the TV, and he's off exploring (and exploding) his newfound fun environment.

His best trick so far is climbing 13 stairs at Mama Jane and Papa's. Yes, THIRTEEN STAIRS. All these things are milestones and victories toward his recovery. We are so thrilled to watch him come out of his shell - the one we created by putting him through 10 months of hell.

His line was tested, (and so was his snot) at clinic Wednesday. Both tests are negative!! It is truly a blessing that he was able to fight off the rhinovirus all on his own!! Soon he may be free to experience the world!!! Chuck E. Cheese HERE WE COME!!! (I never thought I would hear myself say those words...)

The line is expected to be negative right now because he is still on Vancomycin. Tonight is the LAST dose!! Another reason to celebrate!!

Well, that's all for now. The final word will be heard next Friday.

Thank you all for checking in. We love you all very much.

All our love, The Nicolls

Tuesday, October 21, 2003 9:12 PM CDT

Sorry I took so long. Yes, his line IS contaminated. I was so bumbed to be wrong. However, there still is hope. Here's the plan:

We finish the 14 days of Vanco, which started last Friday. It's a little easier on us this time, it's every 8 hours as opposed to every 6. The next scheduled clinic day after he is finished with the Vanco (November 5), they will culture the lines again. If they remain positive with bacteria, we will remove the line and most likely place a port (more on port vs. line when we get the final results). Until then we can hope that the antibiotic will clear the line, and all will be well. We will know for sure 72 hours after they do the next test (November 8th).

Apparently, when a child has had his line for this long of a time (close to a year now), a protein begins to build up along the inside walls of the line. Bacteria love to stick to this material - I know this sounds gross. We all have natural, healthy bacteria on our skin called flora. This is what they have found in his line. It is the easiest to treat, and the most common found. It is everywhere - all over everything. By microscope they look like one-eyed crabs with long daggers for fingernails. It's a vulgar sight to see. Thank God we can't see them with the naked eye - I would never be able to sleep.

So anyway, that's that. I've had some time to come to terms with losing his line. I've surrendered to the fact that my child will probably benefit more from a port than another line - this is not something I wanted to have to consider. I wanted for him to be done with his meds, remove his line and be done. BUT NOOOOOO!!! Nothing ever goes as I plan. When will I ever learn to give up control, and realize I never had it to begin with?? When will I stop making a secret plan for his future - all in my head? Probably never.

I can still pray. I can pray for a clear line. I can pray for the GVH to subside, and I can pray for weaning of meds and blood draws. And I can always have hope. We hope you pray with us.

Thank you for checking in on Cam. We love you very much.

Love, The Nicolls

Saturday, October 18, 2003 6:57 PM CDT

And the saga continues...

Thursday night we get a call in the middle of the night from Denver Children's telling us there is a bacteria infection in Cam's line. I just couldn't believe my ears. She continues to tell me that there is no need to drag him out in the middle of the night up to Denver (at that point my thought was, "then why are you CALLING in the middle of the night?"). She gave me instructions to bring Cam to clinic first thing Friday morning for repeat line cultures and to start Vancomycin. Again? Again.

When I got there, I had my defenses up. I was suspicious of another false positive, and was not happy with the idea of starting antibiotics again before getting the repeat cultures back. Dr. Quinones made a deal with me: After the cultures grow for 72 hours and are negative, he will stop the Vanco. If it's positive, we will continue the IV antibiotic every 8 hours for 14 days. He believes it is a bug that is clinging to the wall of his line, and eventually (after the 14 days), we will have to pull and replace them. I told him I didn't believe that to be true, and that I would talk to him Monday to find the culures are negative and we would stop the Vanco, and everything would be fine. He thinks I am in denial. That's fine - it's a comfortable place to be.

So let's prove them wrong and pray that Monday we hear GOOD NEWS!!!

Thank you for checking in on Cam. Thank you for all the prayers and support!!!

Love to all, The Nicolls

P.S. I will update the photos next time. Cam is begging to type - he's driving me crazy!!! GOTTA GO!!!

Monday, October 13, 2003 12:35 AM CDT

Denver Children's called us yesterday with Cam's test results. He has rhinovirus, aka THE COMMON COLD. We were so relieved to know he doesn't have anything horrible. As we know, there's not much to prescribe for the common cold, so it will just have to run its course.

He's tolerated the last steroid wean pretty well. He's now on 6mg's every other day. This is the lowest amount he's ever been on - and his GVH is NOT breaking through. This means that his donor cells are learning to accept his body as their home. On this amount of steroids, he will now start to grow and build muscle!! We hope he is on his way to independence, and that he won't have anymore setbacks. We hope and pray.

Thank you for checking in on Cam. We love you all very much, and appreciate all the love and support you have given us.

All our love, The Nicolls

Friday, October 10, 2003 5:21 PM CDT

Let's see, the last journal was about Cam's lines. Well, we made it through the q6 antibiotics, and somehow, we are still functioning - somewhat...

A few days after Denver retested his lines, and BEFORE he started the vancomycin, we received the news that his lines were clear of infection, and that it was probably a false positive from Duke. How many times has that happened throughout our course? Several. Before I pulled my hair out, I got down on my hands and knees and thanked God that he wouldn't have to have his lines replaced - then I pulled my hair out. Since by the time we received the results we had already started the antibiotic, they decided it would be best to finish out the ten days. So we did. I'm glad that's over...

Monday morning Cam woke up with green mucous coming from his nose. Not good. On Wednesday they did a nasal wash and viral battery. We will know more in the next couple days if what he has is just a cold, or if it's something worse like RSV or para-influenza. If it's one of the bad ones, he will be hospitalized. Let's just say it's not good for a child who has a suppressed immune system to get a virus - and that is what he has. We're praying it's not serious.

I will update as soon as we get the results. Thank you all for checking in on Cam Cam. We love you all very much.

Love, The Nicolls

Tuesday, September 30, 2003 0:05 AM CDT

I feel like every corner we turn, another challenge pops up. The week spent at Duke was long and painful. I knew it was going to be hard to go back to the place where our son died, but I guess I didn't realize HOW hard.

On Tuesday night, Cameron became sick - vomitting and having watery diarrhea. We thought it could have been the sedation from the MRI Monday, but it didn't subside on its own, so we ended up at the clinic at 9:00 at night hoping Dr. K. was still there. She was (of course). She admitted him into the hospital that night for fluids and antibiotics. He was discharged the next morning - feeling much better. (Long story short).

We then received news that he may have a contaminated line. They drew cultures, but we wouldn't know the results until we got back to Colorado. Sure enough, Cam's doctor in Denver called us Saturday night to tell us he has bacteria in both his lines, and he would have to be admitted into Denver Children's Hospital Sunday morning. I don't know if a person can ever get to the point where they can't take anymore, but Doug and I are very very close.

They discharged Cam Sunday afternoon and sent him home with IV antibiotics (vancomycin) to be administered every 6 hours. So, we set the alarm for midnight, wait one hour until the med is done infusing, set the alarm for 6am, do the same thing, and then give it to him again at noon and 6pm. Here we go with the serious sleep deprivation...

The plan is to clear the lines in ten days. If they don't clear, he needs to go back to surgery and get his lines replaced. We just don't want to go back down that road again. Please pray for his lines to clear.

Thank you for checking in on Cam. Next time I will share the results of his 9-month studies, and more detailed information on Douglas' autopsy.

Love to all, The Nicolls

Wednesday, September 17, 2003 9:01 PM CDT

***UPDATED THE PHOTOS***

Doug asked me to make this journal about Cam. He says everyone wants to know how well he is doing. Here goes:

Cam is doing well. He is still at risk of contracting a virus and fungus, which has me terrified. His immune system is still suppressed, so he is unable to go out in public areas. We go on a 4 to 5 mile walk in his stroller every morning with my dear friend, Audra, and we drive up to Denver Children's Hospital every Wednesday. Other than that, we stay at home. It will be nice when his immune system gains strength enough to take him to some fun places.

Our goal is to wean his steroids every week. We decrease on Wednesday, and hope he doesn't have a GVH breakthrough. So far, he has had a few set backs, but I think is heading in the right direction now. He came home on 6mg's per day, and now he is on 7.5 and 3 every other day - netting less per week. He will not continue to grow on this high of a dose, so we are hoping to decrease weekly from here on out.

He is still on a 2-hour IV infusion of potassium and magnesium once a day. He is still on IV steroids twice a day, and he still gets weekly blood draws; thus, he still has his central lines. At 9-months post-transplant, we were to consider removing his lines and replacing them with a port, but I don't think that's going to happen. His skin GVH is chronic and nagging, which means he has to continue steroids and the anti-rejection drug - which makes his kidneys leak potassium and magnesium - which requires him to have the daily infusion - for which he needs his lines. It's a huge snowball effect.

He is still on 9 oral meds in addition to his IV meds (did I mention dacluzimab and IVIG in clinic once a month?) I guess my point is, he is still in need of many medications -which is frustrating, but as we know, things could be worse...

We are heading back to Duke on Sunday. The Jenkin's have so graciously offered their private jet to transport us back and forth. We are so grateful to them for their unbelievable kindness and generosity. It would have been a nightmare taking Cam through the airports and a 4-hour plane ride with his mask on. Not to mention the risk of infection being around all those people. We are so very blessed.

Cam will undergo an MRI of the brain, EKG, EEG, echocardiogram, immune studies, and of course, developmental testing while we are there. The appointments start on Monday and will finish Friday morning. I'm not looking forward to going through all of that again, especially with all the horrible memories, but it's something we agreed to. I am however, looking forward to seeing our friends, Dr. K. and all of the other wonderful doctors and nurses at Duke.

Thank you all for checking in on the fam. I know I haven't returned many phone calls lately - I guess I'm finding it hard to speak these days...

Love to all, The Nicolls

Monday, September 8, 2003 2:51 PM CDT

I saw my first-born son take his last breath. I watched his life being drained from him. I held him in my arms as his heart stopped beating, and his lungs quit taking in air. I was left holding his dead body in my arms as his lips and toes turned blue. I had to lay him back down on the bed and leave him forever - never to see him again as long I as I live on this earth. I want to know, how am I supposed to recover from this? How is my heart supposed to heal, and how am I supposed to go on living? These are the questions I ask God everyday.

I am tormented by so many memories. I am haunted by the morning I woke to find my husband standing over me with a look I will never forget. A look that meant this would be the day that our baby Douglas would have to die. We had to relieve him from his misery. His kidneys were no longer working, his liver, heart and lungs were in distress. He was being kept alive by a machine. We had to let him go.

It is impossible for me to comprehend the magnitude of the pain we felt that day. I thought it would get easier as time passed, but the opposite is true. The pain has worsened. I miss him more and more everyday. Each day that goes by, my heartache grows stronger. I feel more and more angry and cheated.

I don’t know why God let my children suffer with a disease, and I don’t know why he took Douglas. I just pray to Him every single day that somehow He can give me the strength to accept His will, and to somehow mend my broken heart.

I know now that a part of me died when Douglas died. He was my baby. My little pumpkin who completed me. He brought so much sunshine and happiness to me, and now he’s gone. I am left here on earth to live the rest of my life without him. How? I can see the joy - that he is in heaven and completely healed, but the other part of me is consumed by anguish and despair. How do I even begin to heal? How do I find a way to pick up the pieces of my broken heart and put them back together? I don't know where to begin...

I am so grateful to have Cam. He is gaining strength every single day. He brings warmth into my heart and smiles to my face. He is our miracle. His GVH is still threatening him, and the steroid wean is slow. We’re patient, though. Of the many lessons we learned through transplant, patience is at the top. We will go slow and be safe and thorough. We pray for Cameron’s continued progress and health, and hope by his one-year anniversary, his immune system will show signs of full function so that he may experience some fun things that “normal” 2 year olds enjoy.

We truly would like to thank all of our friends and family who still check in to read the journal, and send their warm, heart-felt messages in the guest book. It isn’t often that I have the courage to actually write, but we do sign on to find strength in your support.

Love to all,

The Nicolls

Tuesday, August 26, 2003 11:40 AM CDT

We have a lot of news to share with all of you who are still checking in on our family.

We received the autopsy report on the cause of Douglas' death. He had adnovirus in his liver, and polyoma virus in his lungs. There was one more drug they could have used to try and save him, but this drug is so toxic, that it most likely would have shut down his kidneys. His kidneys shut down all on their own on the second day of being on the ventilator, so in reality, it would have made things worse for him.

I haven't really talked much about the events that lead up to his death, someday I'm hoping to sort them out in my mind, (or forget them). In the very end, his kidneys shut down (he didn't pee the last 2 days of his life), his liver was rock hard, saturations could not reach above 84% (while pumping 100% oxygen into his lungs via the oscilator), and his heart rate stayed up above 200 beats per minute. All his vital organs were failing, and now we know why. I hope the autopsy will help future transplant children.

We are still waiting for the test results on the donor cells to see if he would have needed a second transplant. We did get his last MPS screen back. He still had a significant amount of heparin sulfate in his urine. This means he still had Sanfilippo syndrome before he died. He doesn't now, though!! Can't help but smile upon that thought...

Cam Cam is ROCKIN' AND ROLLIN'!! (Hurry someone knock on wood!!) We got his MPS screen back. The heparin sulfate in his urine is within normal limits. These results tell us that he DOES NOT HAVE Sanfilippo syndrome!!! How can that be? They've never seen this before. We are afraid to breathe those words. We're going to have to have another test done. I think it's a miracle...

His skin GVHD (graft vs. host disease) is being held under control with steroids. Hopefully, when his donor cells decide to accept his body, and this battle fizzles out, we can wean him from the steroids and anti-rejection drug. Long term steroid use causes osteoperosis and muscle atrophy, and the anti-rejection drug is really hard on his kidneys.

So, the prayer is that Cam's GVH subsides, and he stays fever free (infection free) these next 4 months until his immune system gets stronger. Pray, pray pray.

We are home for good now. We need to go back to Duke every three months for studies - remember, Cam is an expirament (kinda like a lab rat).

Thank you for checking in on us!! I miss everyone so much!!!

Love to all,

The Nicolls

Tuesday, August 19, 2003 11:06 AM CDT

So much time has gone by since I've written, yet the painful days seem to drag on and on. It's been a month since Douglas' funeral, and I haven't reached out to anyone since that day.

Douglas' funeral was beautiful. Natalie had a video made with 130 pictures of him from baby to 5200. Chris, Audra, Britnni and Jennings hand-wrote 200 notes to Douglas, and attached them to the balloons which were released in the air simultaneously after the service. My dad read a heart-wrenching poem at the grave site, and many people came to share in the celebration of Douglas' short little life.

I shed many tears that day, a lot of them were for my broken heart, but a lot of them were tears of gratefulness. I am thankful the Lord took Douglas and gave him eternal health and happiness. I am thankful he is free of Sanfilippo syndrome, and free from all the pain and suffering of transplant and chemotherapy. I am thankful for all of our wonderful friends and family who were there to hug us and be with us that day. We are very blessed.

As each day passes, the pain grows stronger, the tears stream hotter, and my desperate longingness to hold him takes over me. All I want to do is hold him in my arms, smell his curly blonde hair, feel his arms wrapped around my neck, hear his laugh, see his bright smile and his sparkling eyes. Sometimes I think I can hear him calling me. "MOM!" (He used to call out my name like a New Yorker - accent and all.)

He used to LOVE to take baths. Morning, noon or night, it didn't matter. Sometimes he would take 3 bubble baths in one day. One day, after he was good and waterlogged, I took him out of the bath, rubbed him down with lotion, put on a fresh diaper, combed his hair, and while I was hanging the towel back on the rack, he snuck behind me and got back into the tub of water, DIAPER AND ALL!!! He was a pistol.

So many memories of him make me laugh out loud in the middle of nowhere. Some of his memeories will forever haunt me, and keep me up in the middle of the night. My prayer is that God will somehow heal me of the painful memories and leave me with just the good ones. I pray everyday that someday my heart will stop bleeding and the lump in my throat will go away. I dream about the day that I will get to go to heaven and be completely free of pain, and I will get to hold my baby Douglas in my arms and dance with him forever.

Thank you all for still checking in on us. I will update Cam's progress on my next journal entry.

Love to all,

The Nicolls

Tuesday, August 5, 2003 11:01 PM CDT

Douglas' diarrhea has finally subsided. His muscles have regained strength, and he is running and jumping and playing chase. He's back to being his "wild turkey man" self - blowing kisses and being super silly. His cyclosporin hair on his face is gone, and his curly bleach blonde hair is glistening in the sunshine.

I see Douglas in my dreams, dancing in the heavens. Jesus took hold of him and spared him the suffering he would have endured here on earth. God answered our prayers. He gave Douglas COMPLETE healing. He gave him eternal life, eternal peace and eternal happiness.

I thank God every single day for that, and in the same breath, I am down on my hands and knees begging for His mercy to somehow heal our broken hearts. We cry our eyes out every single day, and often times wonder how we are going to take our next breath. The pain is more excruciating than any words could ever describe - I'm not even going to try. My mind is distraught with so many thoughts and memories - it is truly an impossible task to even try to put them into words right now.

I am going to journal Cam's progress, and update some of his photos as the days pass.

He still has chronic graft versus host disease - GVHD (his donor cells not accepting his body), and is being held "at bay" with medication. He is still on a significant amount of steroids everyday, and at this rate, he will not grow. His growth has been stunted for months now, because of the steroids, but without them, his GVHD would be life-threatening. His immune system is still severly suppressed, and must be isolated from public areas and friends and family who have a cold, flu, etc...

He seems to be adjusting to his "new" home, and I think as time goes by, and as I force more and more smiles, he will too.

I love you all for sticking by us, and helping us get through, by far, the most difficult time in our lives.

Love and God Bless,

Tracie

Tuesday, July 15 10:20 AM CDT

Dear Family and Friends,

UPDATE: After many phone calls from friends and family it was brought to my attention that many of you would like send flowers. BUT, I just wanted to let you know that Cameron can not be around fresh flowers, plants or fruit. Although, I do know that they would appreciate hearing from you. So, any correspondence can be sent to their home:

Tracie and Doug Nicoll
623 Orion Drive
Colorado Springs, CO 80906

Doug and Tracie would not be able to endure the loss of Douglas Hamilton if it wasn't for all of your loving support.

The services for Douglas will be held on Saturday, July 19 at 9:30 a.m. at:
Saint Paul's Catholic Church
1601 Mesa Avenue
Colorado Springs, Colorado

Reception will follow.

Thank you and God bless,
Aunt Megan

Friday, July 11, 2003 1:40 PM CDT

A life is not measured by the number of days, months or years that it is lived, but by the effect that life has on other people who touch it. It is not measured by the length of its days or the height of its achievements, but by the breadth of its influence.

My son Douglas, a hero, a pioneer, an individual who could fill an entire room with love and smiles, passed away in our arms this morning at 11:00 a.m. Douglas is at peace now and doesn't have to endure any more pain, any more medicines, or any more beeps & buzzers. He is dancing in Heaven with God and Elmo. Dance, Dance, Dance!!!

"Douglas, you have taught us more about how to love than we ever thought was possible. We love you, we miss you, you will be with us every minute of every day."

We thank all of you for your thoughts and prayers. They have been answered. Funeral arrangements are being made and our family will be in Colorado Springs next week along with our loving son Cameron. We will update the journal once we get more details. We love you all and we ask that your prayers continue for Cameron.

Love to all, Doug

UPDATE: The ceremony will be held Saturday, July 19 in Colorado Springs. We will update the journal with more information.

Thursday, July 10, 2003 9:44 AM CDT

Dear Family and Friends,

Pray, pray, pray….

Douglas has gotten worse overnight. His liver, heart, lungs and kidneys are all in great danger. The doctors did not do the spinal tap yesterday, and at this point it is too risky for them to do anymore exploratory testing. The doctors have told Tracie and Doug that they are running out of answers and options. Please pray for Douglas, for Tracie and Doug and the family to have the strength to get down this very turbulent road. They need our prays, thoughts, and faith right now.

Jean

Wednesday, July 9, 2003 12:08 AM CDT

Dear Family and Friends:

We left off yesterday with the Cardiologist being called in due to Douglas’s elevated heart rate. The Cardiologist found his heart muscle to be enlarged, which means his heart is working too hard. In addition, they found blood/fluid was again filling his lungs. At that time the decision was made to put Douglas back on the ventilator. His heart rate is now steady at 169 down from the 200’s. The doctors also found that his liver is enlarged and compressing his right lung. Do to the fact that Douglas is still running a fever and they can’t determine the source, they are going to do a spinal tap (which will draw fluid from the spine to check for infection). Doug and Tracie are at Douglas’s bedside. Douglas continues to be heavily sedated and very very sick.

As I receive more information I will make updates on the website. Please pray for Douglas, Doug and Tracie as they go through this trying time.

Jean

Tuesday, July 8, 2003 3:18 PM CDT

Dear Family and Friends,

Hello, Tracie has asked me to update the journal today. I am Cousin Jean in Colorado. Tracie called me with the information for this update…please keep in mind that I am going to try and do my best in updating you about the boys.

Sunday, July 6th, Doug flew back to Colorado. Tracie and Mama Jane put the boys to bed and in the middle of the night Tracie woke to find Douglas in a pool of blood. The blood was coming from the mouth. She rushed him to the ER where they rushed him to surgery. The thought was that he had bit off part of his tongue. In the OR, they discovered that his tongue was fine, but they found a blood clot the size of a plum. They removed the blood clot and in post OP Douglas began to aspirate. Douglas was put on a ventilator and moved to the PICU. It is now Monday morning. Doug is in Grand Junction and going to head back to NC. The plan for Monday was to wean Douglas off of the ventilator. By Monday night he was off. At some point last night his lungs started to fill with fluid/blood again. Douglas is now on a bypath machine (this helps one breath, it does not breathe for you). Doug and Tracie are at the hospital and have just got the news that Douglas’s heart rate is very elevated and a cardiologist is being called in to see why this is happening.

Mama Jane is at Tuesday clinic with Cam, who is doing good.

Please pray and send all the good energy you have to them in this time of need. I will be updating the journal as I get more information.

Jean

Monday, June 30, 2003 9:01 PM CDT

I sit in front of the computer tonight with so many thoughts running through my head. Where do I begin?

We've had a hard couple of weeks. We've had some good things happen, and some not so good things happen.

Douglas was diagnosed two weeks ago with CMV. Before he began treatment, his follow-up CMV test came back negative -along with 3 more consecutive tests. They soon became suspicious as to whether or not he ever had the virus, but decided to treat him just in case. Well, the treatment was pretty harsh, and has wreaked havoc on his bone marrow counts and his liver. He has needed several platelet transfusions, daily GCSF (white blood cell growth drug), and a red blood cell transfusion. We were very relieved today when they discontinued treatment.

Yesterday, Douglas woke up with a fever of 102.5. Fever means infection, and an infection in a child with a 1.2 WBC (white blood cell) count is not good. We took him to clinic for cultures, a chest x-ray (to make sure his lungs were clear), and to start (yet another) IV antibiotic. Now we await the test results for the cultures, and pray that nothing is growing. Up on 5200, a couple of weeks after transplant, when a child gets a fever and a rash, everyone gets excited for engraftment. In the back of our minds, we hope this may be a sign of engraftment. The medical staff doesn’t think so, but we have to keep hoping. Still no word on the tissue biopsy.

Cam continues to thrive. He makes us laugh 20 times a day or more. He’s not “back to normal” by any means, but he sure is making huge strides in the right direction.

My Uncle Ken and Cousin Beth Ann and her family dropped by on their way home to Cleveland from Mertle Beach. It was awesome having them here for a short afternoon visit. My uncle felt a cold coming on, so he wore a mask the whole time (see picture). The kids brought life to the toys and books – which haven’t been picked up or played with for months. It was wonderful having more family here.

Please pray that Douglas’ sickness means cell growth, and not culture growth. We would not survive this without all of your prayers and loving support. Thank you for checking in on the boys.

Love to all, The Nicolls

Friday, June 27, 2003 4:00 PM CDT

Yesterday we received the most devastating news. Hermes passed away in the PICU. I guess his mucousitis was so bad, that it caused his GI to bleed, and I'm not sure of the rest. His brother, Aristophanis, died about 4 weeks earlier from liver failure.

This is by far the most tragic story we've witnessed since we've been here. Marianna and Savva brought their two babies (diagnosed with Sanfilippo syndrome) here from Greece in hopes of giving them a chance at life, and they lost one right after the other to the horrific side effects of chemotherapy.

I don't know what to say except that this is so unfair and so unbelievably pain-staking.

If you feel you would like to reach out to this family, to write a note in their guestbook, their website is: www.caringbridge.org/nc/koumpourasboys.

Please say an extra prayer for The Koumpouras Family tonight. We love you!!

Love to all, The Nicolls

Tuesday, June 24, 2003 10:40 PM CDT

There are only 6 Sanfilippo children transplanted before Douglas and Cam: Julia, Andrew, Kyle, Luke, Jillian and Tommy. Julia's parents are the ones who approached Dr. K and asked her to transplant their daughter. Dr. K had transplanted several MPS I (Hurlers) patients in the past with much success, and at the request of Julia's parents, decided to give MPS III (Sanfilippo) kids a try. This was a little over 2 years ago.

Since Douglas and Cam, 3 more Sanfilippo children have come to Dr. K for transplants: Harmen (from Holland), and Aristophinis and Hermes (2 brothers from Greece). Harmen is doing well. He is successfully transplanted and is experiencing some of the not so fun side effects of transplant, but all things considered, doing well. Aristophinis is Cam's age. He passed away a few weeks ago from liver trouble. His brother, who is Douglas' age, is in the intensive care unit. To be honest, I do not know how those parents are holding up. I pray for them every single day.

For the first time, Harmen's mom and I had a lengthy conversation today in clinic. In the past, our conversations consisted of, "how is Harmen? Good. How are Douglas and Cameron? Good." And when a transplant parent says "good," we know what "good" means. It means, well, their throwing up 20 times a day, but it’s just mucous, not blood, or, they've completely stopped eating and drinking, but they're still walking, or, they haven't needed a blood transfusion in a week, but still aren’t growing their own platelets. Basically, they're surviving, and at this moment, they’re not in the intensive care unit. These are the kind of things that represent "good" to a transplant parent.

But today, we both shared our memories of what it was like to be crushed with the diagnosis of our children: The uncontrollable spinning thoughts of family suicide, ending all the pain by driving the car off the cliff, or turning on the engine in the garage with the door shut, the feeling of never being able to smile or laugh again. The feeling of knowing that for the rest of our existence we would remain with open wounds, unable to find happiness. The feeling of complete despair and hopelessness. I was brought back to last summer when all our hopes and dreams, and what we thought would be a normal future - potty training and pre-school, t-ball and ABC’s we’re taken away with one phone call.

It's hard to answer the question long distance. "How are the boys?" "Oh, they're doing great!!" What does that mean? I wonder if the person on the other line pictures them with an immune system, running down a grassy knoll after a black lab puppy with other children around. Or running to the playground to slide down the slide or swing on the swings. I often wonder if others truly understand our reality. I know I could have never imagined it. What I imagined was far more humane than this.

I long for the day that Douglas is able to adjust himself and move around. Even an infant who cannot walk or crawl can stretch out and roll from side to side. Can you imagine being in the same position the whole night through? How many times do you adjust, or roll from one side to the next until you find a comfortable position? He is unable to do any of these things. He has absolutely no use of his legs. If his leg falls asleep because he is laying on it wrong, he can’t do anything about it. He has no upper body strength to move his arm out from underneath him, or pull himself to a sitting position. If he slumps to one side, or falls forward when he is sitting, he cries out for someone to come and rescue him because he is stuck.

One morning we woke up (with the standard diarrhea all over us), and he had a huge bruise on his back from lying on the filters that are on his TPN lines (his IV nutrition – his only source of food) lines. He never indicated to me that he was uncomfortable or in pain, but after 10 hours of lying on 2 plastic discs in the same spot, he must have been. That morning, I kissed the bruise, and held him with tears streaming down my face, feeling so bad that I had allowed something like this to happen, but it didn’t take it away.

These are the kinds of things that happen – day in and day out – that are just unexplainable.

"Day by day" is our mantra. We take things day by day. So are we glad we’re here? Are we grateful there is hope? Of course. Is it hard being here, seeing the children go through this misery? Yes. And sometimes, it just helps to say it.

Thank you for checking in. We are always grateful for the prayers and support.

Love to all, The Nicolls

Saturday, June 21, 2003 5:12 AM CDT

Dear Family and Friends,

My little cousin Jimmy, who is in the 6th grade, wrote his term paper on Sanfilippo syndrome. I was so touched by his work, that I wanted to share it with all of you. This is my Cousin Jean's oldest child.

Quick Update:

The kids are doing well. Cam smiles and laughs more and more everyday. His labs are steady (he hasn't needed a blood or platelet transfusion since his re-admission in April). He is eating, walking and gaining trust in us again (slowly).

Douglas still can't bear weight on his legs. We do physical therapy everyday to help strengthen him. I think things will be a lot easier once he can walk again. Test results would be a nice add as well.

Thank you for checking in on the boys. We appreciate all the love and support everyone has given us.

Love to all, The Nicolls

Here's the term paper:

_________________________________________________________________________________

Jimmy Cunningham
May 15, 2003
LTP Final Paper

Sanfilippo Syndrome

Sanfilippo Syndrome is a rare genetic disorder also known as mucopolysaccharidosis (MPSIII). This disorder causes progressive damage and is terminal. Duke University is performing an experimental treatment for Sanfilippo Syndrome, a stem cell transplant with unrelated umbilical cord blood. I am interested in this disorder because my cousins have it and I could have a one in sixteenth chance of being a carrier. In this paper I will explain the disorder, treatments, the genetic odds, and how Sanfilippo Syndrome affects me.

People affected with Sanfilippo Syndrome (MPSIII) are missing the enzyme that cuts up the used muccopolysaccharides called heparin sulfate. The incomplete broken down muccopolysaccharides remain stored in the cells in the body causing progressive damage.

There are three main stages of the progressive damage caused by Sanfilippo Syndrome. In stage one, parents may notice that their child is developmentally behind. They may not be at the same level as their peers. In stage two, parents may see difficult behavior, children may be extremely active, do not sleep well at night and like to chew on hands, clothes, pacifier, or anything else they can find. Language and understanding may also be lost during stage two. Stage three, children will slow down and may become unsteady on their feet. They soon will no longer be able to walk or run. A wheelchair at this point is essential. Sanfilippo Syndrome children usually also have respiratory and heart problems in stage three.

Parents with Sanfilippo Syndrome children are told that at this time there are no treatments available. You are told to take your child home, make the best of it and watch the progressive damage take over. Unfortunately, that is what most parents do. Fortunately, some parents research other options and have found an experimental treatment being done at Duke University Hospital. It is a stem cell transplant that costs over one million dollars. The treatment is to kill off all of the bad cells and transplant “healthy” cells that will be able to cut up the muccopolysaccharides. Thus allowing the damage to stop.

Unfortunately, this treatment is experimental and there are no guarantees. Another sad fact is that the treatment cannot get back any damage that has already occurred. That is why it is important to perform the transplant as soon as possible.

1 in 24,000 births result in some form of MPS. The chances of marrying another carrier of this genetic disorder are very rare. The odds are so rare that the best way to explain the odds would be that you would have to marry your cousin to have a child with Sanfilippo Syndrome. VERY RARE! If two carriers do marry, the odds of having a child with Sanfilippo Syndrome are one in four. Cousins of the carriers have a one in sixteenth chance of being a carrier. The genetic chain goes on from there.

The connection to me is this; my mother’s cousin from her father’s side is a carrier. She beat the odds and married another carrier (not her cousin). They had two children, Douglas and Cameron, when Douglas was two he was diagnosed with Sanfilippo. Cameron was diagnosed soon after. They both have undergone stem cell transplants at Duke University. Cameron’s transplant was successful. He is now 17 months old. We are waiting to find out if Douglas’s transplant worked, he will be three on May 27th.


It has been hard for me because I know that my cousins are very sick and that they could die. I know this because other children that have had transplants have died. I worry that my cousin, Tracie (Douglas and Cameron’s mother), is emotionally heart wrenched worrying about her boys. She is from Colorado Springs and has been in North Carolina for almost a year. Her husband, Doug, is working in Colorado Springs and flies to North Carolina every weekend. My Great Aunt Jane (Tracie’s mother) and my cousins Doug and Tracie have dedicated their lives to give Douglas and Cameron a chance to live a better life.

Although, Sanfilippo Syndrome is a rare genetic disorder, I feel that it has been a very real and scary time in my family’s life. It is amazing to me how family is not only bonded by love but by genetics also.

Monday, June 16, 2003 6:26 PM CDT

Father's Day will always be a painful day for Doug. Last year, 6 weeks after he found out about Douglas and Cam, his father passed away - on Father's Day of all days. The holiday will always bring back painful memories. We planned on making it a special weekend for him, but unfortunately, nothing turned out as planned.

Here's how the weekend unfolded:

On Friday, Douglas was diagnosed with a life-threatening virus. It's a virus that has taken the lives of many immune-suppressed children in the past. Because it is so deadly, they test for it every week. There is a drug that will keep the virus under control until his immune system is strong enough to fight. This drug has a 75 percent success rate.

He now has to go to clinic 3 times per week for a 2-hour IV infusion. At home, we are to administer an IV chemo-therapy-like drug every 12 hours. We have to use special handling gloves, a special waste container for the vials, and we have on-hand a chemo spill kit in case we get the drug on anything or anyone. The virus was caught in an early stage so right now Douglas isn't suffering any symptoms. The drugs, however, have side their own set of side effects. His bone marrow counts will drop, and it may cause diarrhea. I can't think of any 2 worse side-effects for him right now.

There are a hundred and one ways to contract the virus. It's like catching a cold - really hard to pinpoint. It could've even been from his last blood or platelet transfusion. Crazy.

Then, Saturday night, a little after midnight, Doug had to rush me to the Emergency Room. I thought for sure something irrupted. It felt like I was in labor at about 8 centimeters. So, after about 5 hours of waiting, poking and prodding, they sent me home with not much of a diagnosis. I probably just had a nervous breakdown. One of the nurses I talked to today was surprised that I had only been to the ER once. I don’t think she was kidding…

Doug spent all of Father's Day (sleep deprived from the night before) at the clinic with Douglas, and then rushed off to the airport to catch his plane home. Not much of a happy Father’s Day weekend.

Cam is doing okay. His skin GVH is still bothering him, but other than that, he is doing extremely well.

Thank you for checking in on the boys. We sure do appreciate the love, prayers and support.

Love to all, The Nicolls

Thursday, June 12, 2003 4:17 AM CDT

Yesterday I went to the mailbox and in it was a big envelope full of checks from my family in Cleveland. My cousins, Jeff and Kristin, decided to do a raffle fundraiser to help assist us financially while we are here (still here). Several of my aunts, uncles and cousins sold the tickets, and after a few weeks, they had the draw at the annual Memorial Day family reunion/picnic. As I understand it, every year my Uncle Jack and Aunt Jackie rent out a park with pavilions, and they open up the gymnasium for the kids to play basketball. Everybody goes - it’s a major event.

Anyway, this is where they decided to draw the winner of the raffle. I’m doing my best to tell the story, (which I received third-hand), so I will do my best. But from the way I understand it, they all went into this gymnasium, which also has a stage (like in elementary school). My 86 year-old grandpa, who flew in from Florida along with my uncle and cousin and her family, was the person who drew the name from the hat. My cousin, Beth Ann was the winner. Keep in mind that several thousand people, mostly non-family members, purchased the tickets and were not at the picnic. Now, to truly explain how this impacted everyone is an impossible task for me, but, again, I will do my best. You see, her mom, my Aunt Mary Beth, passed away last summer. She suffered from a horrible cancer, it was extremely unfair and heart breaking. Well, with all the family gathered around, for the first time without my Aunt Mary Beth, her daughter winning the ticket was as if she was telling everyone, “I’m here with you all in spirit.” They all felt her presence, and it was very emotional.

My cousin, Beth Ann, got up to accept the prize, and she just sobbed. Then, my Uncle Tom (who drove in from Chicago with my Aunt Anne), got up on the stage to lead the family in the 2pm prayer for Douglas and Cameron. And then, out of the blue, my Aunt Patty (my godmother) began the Our Father, and everyone joined in.

Then, Kristin and Tim brought their TV and VCR from home so that everyone could watch this video that my friend Natalie made. SIDE STORY: A couple of months ago, Natalie went into my house and looked through a huge box of loose photos, albums and frames, and created a video of our family and friends. The pictures are displayed in this video with background music of several of my favorite songs. She brought me the video when she came to see us out here. We watch it all the time and just bawl. It’s an unbelievable gift she gave us.

Well, my mom had a copy made, and sent it to Kristin.

They all watched the video in the gym at the picnic, and from what I hear, there wasn’t a dry eye in the house. My Uncle Bob had to leave and come back later to watch it alone. I guess throughout the day, my family members would come back in and watch it again and again.

As I listened to stories of that day, I cried my eyes out. I can’t wait to get back to Cleveland so that I can hug and thank every single one of my cousins and aunts and uncles for being so kind and loving to us.

I love you guys!! Thank you for EVERYTHING!!!

Thank you for checking in on the boys. Cameron needed a steroid boost because his skin GVH broke through again, but he should be feeling better in the next couple of days. Overnight, Douglas’ chunky-monkey legs came back. No more stick man. With his muscles coming back, we hope to see him walking soon!!

Love to all, The Nicolls

Sunday, June 8, 2003 9:54 AM CDT

Our little "prickly pear" is transforming back into the "warm fuzzy" that we all once knew. We are having so much fun watching Cameron smile and laugh, and eat and drink, and reach out to people once again.

After weeks and weeks of seeing him withdrawl from life, this revival is truly a gift. The old saying, "you don't know what you got until it's gone" rings true in this household. Appreciating "the little things" has taken on a whole new meaning...

Our hearts ache when we look at Douglas. Still covered from head to toe with cyclosporin hair, muscles still eaten away from the steroids, still unable to bear weight on his legs, still not eating or drinking, still suffering from cramping and diarrhea, and on top of all that, his molars are growing in. Yesterday he needed another blood transfusion, and he's been needing platelets about every five days.

We were "supposed" to go home the 6th of April (Day 100). We are now 163 days post-transplant, and it doesn't look like Douglas will be ready to go home anytime soon. We've extended our lease through July. If Douglas' cells are growing, we will stay here until the graft vs. host is under control and he is walking and eating. If he needs a second transplant, his 100 days will start all over, which will put us into mid-October. Exactly one year from the time we arrived. Boy, time flies when you're havin' fun!!

I guess that's all for now. Thank you for your love and prayers. We love you all!!!

Love, The Nicolls

Tuesday, June 3, 2003 8:39 AM CDT

Well, let's face it, April sucked. May was worse, and like my mom said, "April showers didn't bring May flowers." But, it's June now, time to hit our refresh button. We have a lot to look forward to this month. We will get the test results, and we will help Doulgas rebuild his strength and rehabilitate his legs so that he will walk again.

Last night, after reading a few versus from James, specifically 1:2-8, I was lifted again, and was inspired to focus on all my blessings instead of my pain. I know God has a plan for us, and it is up to me to trust in Him, and try not to question all that He has in store.

I am truly blessed to have so many wonderful people in my life.

I am blessed to have a husband who loves me and adores me beyond words, and in return, I have never felt a love so deep and sure as the love I feel for him. As my faith has been tested, so has the strength of my marriage. I know that there is nothing that could ever come between the love we have for each other. Nothing will ever weaken the powerful bond that we have created through this hardship that we have faced together. And that, is a true blessing.

I am blessed to have a warm and loving family. When the chips are down, they are there. Every last one of them. I feel embraced by them. I am moved by the love and support they have given us.

I am blessed to have the most awesome friends anyone could ever ask for. Friends who have always been there for me. Friends that share laughter, tears, pain, hard times, and fun times. Friends that I trust to give my heart to, and know that it is well-kept.

I am blessed to have Douglas and Cameron. So many parents here have lost their children. They would do anything to have them back. How dare I complain. I should be grateful that Douglas and Cameron are doing so well. I should celebrate the victories, no matter how slight, and live each day in thanksgiving that I have that day, and that there is hope for the next.

Thank you, God, for surrounding me with such beautiful, caring, loving people that lift me up to YOU in prayer. I'm feeling the LOVE. How can I be down with so many lifting me UP?? I can't. And for that, I am grateful.

Love to all, The Nicolls

Saturday, May 31, 2003 8:28 AM CDT

I just read the guestbook after a couple days of dwelling in self-pity, and I feel much better now. You guys really do lift my spirits. I think Douglas' 3rd birthday (and everything it symbolizes), really brought me down to one of my lowest points. It's excruciating to think that Douglas may become mentally retarded and wheelchair bound by 7 years-old, eating through a feeding tube and sitting in a diaper. Most days I suppress this thought, and convince myself that his cells are growing and everything will be fine. But last week my head was invaded by the dismal thought, and I couldn't shake it. I couldn't even lift my head up enough to share in my dear friend Tricia's happy news. Sorry, Wom. It must be really hard to be my friend these days...

His birthday party was probably what spurred the emotion. He was too weak to open any presents, too nausiated to eat any cake, and he still loves Elmo. Does he still love Elmo because mentally he is only 2? Or do normal 3-year-olds still love Elmo? He still only has 10 words. Is his lack of speech development due to his hearing loss, or is it brain loss? These are the questions that run through my mind every second of everyday. From the outside, it may seem that I am doing fine, but if anyone ever got into my head and listened and heard all the rattling thoughts and questions, they would know that my heart is breaking. Broken.

I haven't accepted the disease yet. I am still asking why. I am thankful to be here for treatment, but the other side of me is still so sad that my children were plagued with this horrible disease. Why them? Why any child? Why do so many innocent children suffer? I will never understand it.

I look at pictures of the boys when they were healthy, and my throat closes up, tears stream down my face. They have been through so much pain. Cameron is a completely different person now. He has stopped reaching out to people, and making eye contact. He used to say hi and bye and all done and Elmo, but now he says nothing. He used to always give kisses, hide under the blanket, and laugh out loud - he hasn't done any of that for months. I cope by telling myself it's temporary, but how temporary? When and will he ever learn to trust me again? Will he ever truly find comfort in me again? I can only hope the answer is yes, but it sure is taking a long time.

His rash is much better now. The medication did the trick. We are very grateful for that. Douglas has been sleeping through the night without any blow outs. The new medication is working for him, too.

Things are getting better. Thank you for all the love and support you have given us. I don't know what I would do without this guestbook!!

Love to all, The Nicolls

Tuesday, May 27, 2003 8:56 PM CDT

I'm feeling flat and uninspired tonight, so this will be short...

Douglas turned 3 years old today. No test results.

Cameron developed another skin rash. The GVH broke through and is causing him severe itching and welts. They put him on a few more meds, hopefully they will provide him some relief soon. Until then, he spends most of his day and night scratching.

Thank you all again very much for the group prayer. The feeling we had at that moment was overwhelming. We decided to do it every Sunday, so if you're not doing anything, and you think of it, please join us. We love you all dearly. I'm getting very homesick.

Love to all, The Nicolls

Thursday, May 22, 2003 11:00 AM CDT

Wow, the thought of everyone saying the same prayer at the same time sends chills up my spine. I made a subtle suggestion, and you guys ran with it and have turned it into a reality. I just can't tell you how deeply touched we are by your love.

After hearing from my family in California, my family and friends in Colorado, and my family in Cleveland, it looks like 2pm EST on Sunday, May 25th will be the time and date of the group prayer (tears are streaming down my face as I write those words).

"Dear Jesus Christ, our Lord and Savior, please restore the health of Douglas and Cameron's brain and body. We thank you for all that you have blessed us with, in the name of the Father, Son, Holy Spirit. Amen."

I can't believe this is going to happen. I have butterflies just thinking about it. Thank you to everyone!!!

Love to all, The Nicolls

Tuesday, May 20, 2003 9:19 PM CDT

Cameron Thomas is a new man. After he was finished with his IV med infusions at clinic this evening, he cruised up and down the hallways. He WALKED from his hospital room, all the way down the hall, out the door and into the main waiting room of the 4th floor clinic. One of the nurses was so thrilled to see him walking that she followed him the whole time, opening doors and making sure he was safe. He knew the way out, and that's exactly where he headed.

It is wonderful to see the leaps and bounds in Cam. He reached yet another milestone today with a platelet count of 100. This is huge. He is making his own plateles,red blood cells AND white blood cells.

Douglas is still about the same, hanging in there with his cramping and diarrhea. We are truly hoping this new med will eventually bring it all to an end.

Still no results.

Thank you for all your prayers and support.

We love you all, The Nicolls

Saturday, May 17, 2003 7:15 AM CDT

Today is a yet another bitter-sweet day for me. My sister has been here for a week, and today she leaves. She is a full-time college student (almost done), and has spent all her breaks here with the kids. Christmas Break, Spring Break and now her Summer Break in between summer semesters. If we could have it our way, she would be here the whole time and never leave. The kids love her, and cuddle up to her as they do me.

She's gotten a few good smiles out of Cam, and some big hugs from Douglas. Her heart is broken to see Douglas' weakness. The last time she was here, he was jumping on the bed, climbing up the stairs, playing "hop-scotch" with the multi-colored tiles in the hospital halls, and jumping off the curb with both feet together. Now, he can't sit up on his own, can't walk, stand, bear any weight on his legs, and he's completely stopped eating and drinking. And still no results...

On the other hand, she is amazed to see the progress in Cam. He walks all over the apartment, eats anything you put in his hand, and is becoming a little bit more cuddly everyday. Last time she was here he was vomiting 20 times a day, etc...

The bitter part of today is that Megan is leaving, the sweet part of today is that my DAD IS ARRIVING!!! My mom flew home last Friday night, got up the next morning, got in the car with my dad, and started their road trip back out here. They've been cruising the coast of South and North Carolina this past week, and are due to arrive in Durham sometime this afternoon. I can't wait to see him (and, of course, Mama Jane).

The next time I journal, I hope to have tissue biopsy results to share - wouldn't that be something??

Thank you all for checking in on the boys, and thank you for your prayers. Do you think if maybe we all said the same prayer at the same time on the same day, we might get His attention? All I'm really asking for is that both boys regain their health and get through this with the ability to lead normal lives. Is that too much to ask? Maybe.

Love to all, The Nicolls

Tuesday, May 13, 2003 9:20 PM CDT

Wow, how very touching the guestbook entries were this past weekend. Not that they ever aren't (is that a double negative?) Anyway, thank you for all the wonderful words of praise. I know that if you guys were faced with this situation, you would do the same thing, and I would be writing these words in your guestbook. Nonetheless, it really does help to feel all the love and support, so, once again, thank you.

No news on Mr. Douglas again today. What a bummer. Both the children went through their "90-day studies" last week, which included another MRI of the brain. Douglas' results came back, but need to be reviewed by a specialist before they talk to us. Apparently, the results are "complicated."

Cam's MRI came back with improved myelination and signaling compared to baseline MRI done when we first arrived here in October. This is good news. I only wish for some good news for Douglas.

I was a litte surly at clinic today. When I apologized to one of the nurses at the end of the night, she said, "Girl, you're fine. If I were you, I would be in the corner of this room on the floor in a fetal position." We laughed as we said our good-byes, and then on the drive home I thought, "Geez, I'm not sure if that makes me feel better, or worse..."

Anyway, that's all for now. Thank you for your continued prayers.

Love to all, The Nicolls

Sunday, May 11, 2003 7:38 AM CDT

My Mother

My mother is not just a mother she is a mom.

She’s given up her whole entire life for me. She has been here for seven months through thick and thin, ups and downs, hope and despair. She has been the brunt of my anger, the sounding board for my frustration, the confidant for my deepest fears, the strength when I am weak, the energy when I am tired, the cheerleader when I am defeated, and the true friend that everyone longs to have. The friend that understands you’re pain, and is always there to listen, shout, and share laughter through tears.

So many things that she has done for us here have gone unsaid, but NEVER have they gone unappreciated.

October, all the appointments she took the kids to, waiting for hours in the hospital, trying to keep them entertained, and putting up with me abusing her because I was so stressed out.

November, shopping at the dollar store for all our household goods, moving all our stuff out of the hotel and into the apartment, setting up the apartment, sacrificing Thanksgiving Day with my dad to make sure the central line surgeries were okay, and setting the table so beautifully with a full Thanksgiving meal to comfort us, and putting up with me abusing her because I was so stressed out.

December and January, enduring the endless hours upon hours on 5200. Sleepless nights, sick, sick children, having to wear gloves and a gown to use the restroom in the family lounge, eating cafeteria food, sterilizing everything in the room, every minute of the day, seeing daylight only every third day, and putting up with me abusing her because I was so worried.

February, every morning waking up with blood, diarrhea, mucous and bile all over her pajamas with a smile and a chipper, “Good Morning!! ” And putting up with my abuse because I was so stressed out.

March, still enduring the sleep deprivation, all the IV meds, the constant diaper changes, the cleaning, the laundry, the worry, the waiting, and still taking my abuse.

April, enduring yet another setback in the children’s recovery. Being re-admitted to 5200, nursing the children back to health, crying silently so that her worry wouldn’t amplify mine, and putting up with my abuse because I was so scared.

May, taking on both children and all their meds, TPN, blood draws, diaper changes, and everything else so that Doug and I could steal a night away. Walking both children to clinic the next morning in the double stroller to get Cam’s blood pressure checked, so that Doug and I could play golf, and STILL taking my abuse because my anxiety has now skyrocketed.

There is obviously no way I could write down every single thing she has done for us, (I would get carpel tunnel).

What I’m trying to say is: Thank you, mom. And, I’m sorry, mom. And HAPPY MOTHER’S DAY, MOM!!! YOU'RE THE GREATEST!!!

I LOVE YOU!!!

Tracie

Friday, May 9, 2003 8:33 AM CDT

Today is a good day!!

Douglas is going on 11 weeks of explosive buckets of liquid diarrhea throughout the day and night. Dr. K. finally decided to make a change in the drug that was supposed to fix the GVH in his gut, which in turn was supposed to stop the diarrhea. We have been going to clinic twice a week for a 2-hour infusion for 3 months (in addition to everything else), and it hasn’t been working. This new drug is a 15-minute infusion ONCE a week. Hooray for that, especially if it works!! Say a prayer.

He has officially stopped eating. He has lost 5 pounds in the last couple months. He still cannot bear wait on his legs, or pull himself to a sitting position when he is lying down. In addition to his wicked diaper rash, he has developed a bedsore on his tailbone. We are constantly changing his position, but when 23-and-a-half hours a-day is spent sitting or lying down, for this many weeks in a row, it’s inevitable. It breaks our hearts to see it. It breaks our hearts just to look at his weak, bony body. Did you ever think our chunky monkey, wild child, would ever deteriorate like this? I honestly did not…

Now, Cam on the other hand, is gaining strength like a champion. He took his first official steps last night. Once he realized he could do it, he practiced all night. His highest count was 24 steps in a row!! Yeah, Cam Cam!!! When he would fall down, he would clap, and ALMOST smile. Almost.

He is COMPLETLEY off IV nutrition. No more TPN for Cam. He is eating and drinking like a child who didn’t go through transplant. We thought we would never see this day. Now, as soon as we see him laugh and smile like he used to, then we’ll know that he is “back.”

If we could take Douglas’ spirits and instill them into Cam, and Cam’s health and instill it into Dougie, then we would be set.

No results again today - maybe next week. Thank you for caring so much about the boys. Your love and supportive words have truly helped lighten our load.

Love to all, The Nicolls

Tuesday, May 6, 2003 9:14 PM CDT

What a great ending to a really crappy day...

(Geez, I feel like I haven't written in ages...)

Our morning started out at the Child Development Center. We agreed that every 90 days, we would allow an evaluation to be done. I tried to enter the facility with a good attitude (tried), but I guess it didn't last very long. The evaluation of Douglas consisted of a lot of "does he do this?" "No." "Does he say this?" "No." Does he count to blah?" "No." Does he tell you when he has to go potty?" "No.” Even if he could, it would be too late. A grown person wouldn’t be able to get to the toilet in time with what’s coming out of his body. And he’s had it since the beginning of MARCH!!

Really, by the time we were half way done, I put it all to an end. The last straw might have been the question, “If he saw this teddy bear, and this spoon, would he try to feed the teddy bear?” “I don’t know, does the bear throw up afterwards? Because that’s what he does every time he tries to eat something.” At that point, she just closed her notebook and put her pen down.

Maybe I wasn’t being fair, but it was excruciating seeing that my first-born son is even farther from the “bell curve” now, than when we first started this whole mess. When he was 2, he was doing close to “normal” 2 year-old things, now that he is approaching 3, he is nowhere near doing the things that normal 3 year-olds do. And I know this.

My heart is bleeding wide-open, and going down to UNC Child Development Center was just like pouring salt onto my open wound.

Since the beginning of February, I have been tormented with what I thought would have to be a decision Doug and I would someday have to make. The decision of “quality of life” versus “longevity of life.” I didn’t understand why God would put this kind of power into our hands, but I figured it went back to the “free will” philosophy. Anyway, I have been haunted by the thought: What if it’s too late to save Douglas’ brain? Do we go ahead with a second transplant and save his “body,” giving him a chance to live on this earth until he dies of old age, knowing that he will always have a brain of a 2 year-old? This is something that I, of course, would consider. I would just take care of him for the rest of my life, ensuring he is warm, comfortable and free of pain.

But that’s not reality, is it. The reality is that if he dies of old age, and I die of old age, then I will die before him. I will leave him on this earth, unable to take care of himself, sitting in his own feces, unable to tell someone if he is in pain, or cold, or lonely. Wondering where I am, and why I abandoned him. Then I thought, why would I keep him here on earth, when he could be in the warm arms of Our Lord in the Kingdom of Heaven? It would be completely out of selfishness.

This is some of what is in my head when I am left alone with my thoughts. Too painful to actually speak the words, it wasn’t until today that I found the strength to talk to Dr. Kurtzberg about the crossroads that we may soon face. Here was here beautiful response:

“I don’t know if this will help you, or if it’s any better, but if we haven’t saved Douglas’ brain, and we go through with the second transplant, he will still die somewhere in his teenage years. Once the damage of the brain hits the brain stem, then it will cause dysfunction in his respiratory system and other organs, which will lead to premature death.”

It was as if she had set me free.

I no longer have to make a decision now. We will move forward with the second transplant IF we need to because either way, I will be here on earth to make sure that he has the brightest, happiest, warmest, most loving life possible. (Unless, of course, I get run over by a bus or something…)

Well, that’s all for now. No results yet. Pray that those donor cells have been growing and have been preventing the progression of his disease. It’s in God’s hands. It always has been…

Love to all, The Nicolls

Saturday, May 3, 2003 7:07 PM CDT

I am writing on my friend Tracie's behalf as she & Doug are spending a night away from the apt. & hospital after seven long months. Mama Jane & I are holding down the fort. Shrek is almost finished & it will be time for the 9 p.m. oral meds as well as IV infusion pumps that will run all night.

The boys are bathed, chest tube dressings changed, diapers changed, laundry running & sterilizing continually under-way.....getting ready to tuck the boys in after a fun day at the Annual Rainbow of Heroes Walk for Duke Peds marrow & stem cell transplant family support program fun-day, fund-raiser.

N. Carolina is beautiful right now. So lush & green. Hot & HUMID w/an occasional warm light rain. After five days I am already dreading my return tomorrow a.m. If I could only stay & take on a few more day-to-day burdens & enjoy a few more of the day-to-day joys.

I have experienced a glimpse of my friend's pain & many of her hopes. The biggest prayer is to wake up tomorrow & finally get the results of Douglas's DNA tissue to see if the cells are present. Still no answers. Waiting is torture. Pray twice as long & hard today.

Cameron's BP has been extremely high. Clinic is now every day (for hours) for checks & meds. He is still having the graft skin reaction & when it's time for his IV Benadryl he is very itchy & aggitated. The rest of the time he is eating & drinking like a champ! He cruises everywhere, & chats in his own language non-stop. He has given 2 small smiles since I've been here - thankfully a great big one for Tracie today.

Douglas is still weak due to muscular atrophy from the steroids. With therapy & reduced steroids, his muscle mass should return. He does not weight bear now. He is so sweet & talks during his Elmo videos. He is engaged in his environment & gets us all involved in dancing during the ending to Shrek.

Tracie & her family are amazing. I have never experienced someone so true to her emotions. She lives & breathes optimism. Words can not express....nothing can define the faith, hope & love.

Tuesday, April 29, 2003 9:15 PM CDT

Still no results for Douglas. Dr. Kurtzberg flew out to California and met the folks that are doing the test. They promised her it would be done this week. It's a really hard test to do, and they've been really busy. Never mind the fact that my child's life hangs in the balance.

I will update as soon as I hear. Please pray.

Love to all, The Nicolls

Monday, April 28, 2003 9:32 AM CDT

Well, the week came and went and still no biopsy results. Douglas is regaining some strength in his legs, taking a few steps while holding our hands, and then collapsing to the floor. It's relieving to see some progress.

Cam's lips are all better. All done. This weekend he gave us another scare with a rash all over his head. He would stay up all night thrashing and itching. They prescribed IV Benadryl for us to administer at home, and last night he finally got some much needed rest.

My friend Audra and her daughter, Britnni are here. I have had so much fun being with my girlfriend. I almost feel like we're on vacation. Things are so much better now than they've been in the past, I really thought we were living "normal" lives - until someone "normal" steps into the scene. By the second morning, after about 10 loads of laundry, she was exhausted. It hasn't slowed her down, however. She's non-stop, disinfecting the toys and floors, stripping beds, trash duty, laundry, diaper duty, sitting in clinic, and even drawing up the meds!! Britnni has been a wonderful addition as well. It's our normal daily routine, but they add a burst of sunshine.

I hope to God we hear something this week. Douglas will be 3 next month, this is just killing us not knowing.

Thank you all for checking in and thank you for your endless prayers and support!!

Love to all, The Nicolls

Wednesday, April 23, 2003 2:51 PM CDT

No news at clinic yesterday. We still don't know if Douglas' cells are growing. Please pray...

Love to all, The Nicolls

Monday, April 21, 2003 7:02 PM CDT

Today is a day of celebration...

Douglas is COMPLETLEY finished with his antibiotic regimen. No more midnight doses, no more setting the alarm at 5:50am to reconstitute and administer the ampicillin, and most importantly, NO MORE INFECTION!!! Hooray for Douglas!!!
All 7 of his meds are oral now except 1 (and his TPN). He has come along way since the 2nd of April.

Cam belly-laughed out loud today. He let me "tickle kiss" his neck, he laughed when we played peek-a-boo, and giggled while watching his Elmo video. He also has done a complete 180 since the first of April. What a month we've had!!!Today is a GREAT day!!!

Thank you all for your prayers. Tomorrow is Tuesday Clinic Day. We're praying for results, GOOD results. COME ON DONOR CELLS!! Please, dear God, hear our prayers!!!

Love to all!!

Always keeping the faith, The Nicolls

Saturday, April 19, 2003 10:49 PM CDT

First of all, I think I may have confused everyone. The test that they did wrong was from the biopsy that was taken 5 weeks ago from Douglas' stomach and bowels. The RFLP's (from the weekly blood draws) is still showing less than 1%. The RFLP’s have been done correctly, but may not be accurate. The accurate test will be from the biopsy - which they screwed up. They re-did the test, and we were supposed to get the results on Good Friday. Didn't happen. Shocking...

I'm scared to say this out loud (in fear of jinxing us), but both boys have improved tremendously in the past 48 hours. I just can't believe it.

Douglas' chest stopped bleeding. No more daily bandage changes!!

Cameron's lips stopped bleeding, and you can actually see lips now (as opposed to a purple crust of blood). People that didn't know what was going on would say stuff to him [in their baby voices] like, "Did your mom give you chocolate? Or, “Did your mom not clean your face?" "What did you eat little guy?" And I would flatly reply, "It's blood." For 5 weeks. And now. Done. No more. Praise God.

Almost all the IV meds (7 out of 10) have been switched to oral. This is a humongous feat for us. A few of our requirements to go home (in addition to overall health), is that both kids are eating, are on oral meds only, and have a port placed inside their chest to replace the central lines. This is definitely a step in the right direction. For a while there, with all the vomiting, we never thought this day would come. We are thrilled.
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When we first got home from the hospital, a nurse from the home infusion company came over and taught us how to draw blood, change caps, dressings, administer meds and hook up the TPN. This was extremely overwhelming at the time, now we can all do it in our sleep (literally).

Anyway, I had a dream last night that that same nurse came over, pounded on our front door, stood there and said, “I need to see you point your toe, rub your tummy and pat your head.” There I was, (in my dream), standing at the front door with my toe pointed, rubbing my tummy, and patting my head. She took one look and said, “Ok, thanks!” And darted away. I stood there and thought, “Did I pass?”

We hope the worst is over for now for Cam. We have definitely learned not to ask, “what else?” We’ve seen too much to want to know that answer.

We pray for good results this week for Dougie.

We pray for all of you, who have been praying for us. We hope you all have a wonderful Easter.

Love to all, The Nicolls

P.S. Hi Dad! Next year we will all be together for sure!! We miss you!! Love, Douglas & Cam

Thursday, April 17, 2003 1:06 PM CDT

HAPPY BIRTHDAY DOUG NICOLL!!!!

I LOVE YOU WITH ALL MY HEART AND SOUL!!

XXXXXXXXXXXXXXXXXXXXXXXXOOOOOOOOOOOOOOOOOOOOOOOOOO

LOVE, ME

Wednesday, April 16, 2003 11:38 PM CDT

You're not going to believe me when I tell you, but I'm going to tell you anyway. They did the donor test wrong. I'm ignorant on the entire subject, but the way it was explained to me was that there are 4 "markers" in DNA. Dr. Kurtzberg ordered a specific marker to be tested, and they did the wrong one. The good news is, they can re-do it without another biopsy - so we have that going for us.

By the end of this week we should know which way we are going with Douglas. If he needs a second transplant, it will extend our stay here through September. If he's growing cells, then we will stay here until the kids decide to eat, and are switched from IV meds to oral meds. Best case scenario, we will go home at the end of June.

Douglas is still trickling. Mama Jane did the bandage change today. Boy, is she good at that! She changed it without me even knowing. What a relief.

Cam will NOT smile for anything. His lips are still cracked and bleeding, and I just think it hurts him too much to smile. I sing him his favorite "silly" song ("On Top of Spaghetti"), and he tries not to laugh, but I can tell he's tickled. I sure hope this virus clears soon.

Thank you all for your loving and encouraging words. The past few weeks haven't been easy, but it truly does help knowing we have all of you supporting us and praying for us.

Love to all, The Nicolls

P.S. Hi Ramsel. Hurry back! XXOO

Monday, April 14, 2003 3:25 PM CDT

Douglas was discharged from the hospital yesterday. The bleeding from his chest is now just a trickle. His chest is bruised and sore. The doctor on the unit couldn't believe how the surgeon had butchered his chest. He recommends I complain to the head surgeon, but now (after I've cooled down), I am apprehensive in doing so because both boys have to go under his scalpel again before we leave. I would hate to make enemies with surgical staff at this point.

Hopefully, the bleeding will clot soon. Until then, Douglas has to endure daily bandage changes. This doesn't sound bad - until you see it.

The doctor on the unit also recommended an x-ray of Douglas' hips. He no longer has use of his legs. He can't stand, crawl, or bring himself to a sitting position.

Cam is still the same. Not much improvement, but not any worse, either (thank God).

Day 100 came and went for both boys, and neither is anywhere near recovered. When is this all going to end?? Of course, my next thought is, be careful what you ask for - at least they are still alive.

With Douglas in the hospital and Cam out, logistics became a challenge, so we called our friend, Hugh, and he was on the next flight out of Colorado Springs to help us. It's been wonderful having him here, and we will miss him when he goes back home tonight.

Thank you all for checking in on the boys. Please pray.

Love to all, The Nicolls

Friday, April 11, 2003 7:25 PM CDT

Douglas has an internal bleed from his surgery. Apparently, the surgeon used a "burrowing" tool that was too big. The blood is oozing out of his chest, but there is nothing they can do to fix it (like stitches), because it is originating from deep inside. He will stay in the hospital until the bleeding stops.

Pray. Pray. Pray...

Love to all, The Nicolls

Wednesday, April 9, 2003 2:30 PM CDT

We couldn't figure out why we couldn't get Cam's vomit and diarrhea stains out of his onesies. Now we know. What appears to be puke and poop stains, are actually bloodstains. I never knew bloody stool and vomit look like black bean soup. Now I know...

After several blood and platelet transfusions, Cam was discharged from 5200 Monday afternoon.

The ulcerations on Cam's lips give us an indication of what his throat and stomach lining look like. He is suffering from another “itis,” or inflammatory disease from all the meds he is on. From the grimace on his face when he coughs, and the thrashing at night, it is apparent that it is causing him pain. He also contracted another bacteria infection in his intestinal tract. All the antibiotics he is on deplete the healthy bacteria in the body, which makes him susceptible to other infections. They tried to take away some of the antibiotics to see if it would help the intestinal infection, but when they did, his sinus infection came back, so they had to put him back on them. Once again, this is a tough balancing act.

His spirits are low. He hasn’t smiled or laughed in a long time. He’s non-responsive to people coming in and out, even me – which breaks my heart. I think of my soft, cuddly Cam, who would belly laugh when he was flipped upside down, and pull the covers over his head to play peek-a-boo, and always wake up smiling, and wonder if he’s ever going to do those things again. I would give anything to see him like that again. I would do anything to take away his misery…

Douglas will be discharged Friday if the cultures continue to come back negative. One positive culture, and he will have to go back to surgery for another temporary line, and another week in the hospital. If all goes well, he will go into surgery tomorrow for his permanent line, stay that night in the hospital, and come home Friday. It is so hard being split up. It makes me sad for all the moms that are here with one of their children, and are forced to be away from the others who had to stay home. So many sick and sad things we see on a daily basis here. Makes me realize I never had anything valid to feel sorry for myself about in comparison to all of the pain I see here.

Thank you for checking in and praying for the boys.

Love to all, The Nicolls

Saturday, April 5, 2003 10:01 AM CST

The clouds are dark and low this morning. It's gray and raining, and the kids are snuggled up in their hospital beds watching their favorite videos.

Douglas' surgery was quick and without complications. He is sore, but doing surprisingly well. In the recovery room, we learned that a bed had opened up on 5200. We could all be together again! Hooray!!

Cameron has needed 4 blood transfusions and 4 platelet transfusions since his admission. He is doing much better now. He hasn't vomited blood in the last 24 hours. I think the medication is working. Thank God. Thank God for modern medicine. And thank God there are people in this world who continue to donate blood. I know when this is all over, it's going to be something I will do on a continual basis...

Believe it or not, this has been a much needed break for us. The nurses come in and administer all the IV meds, the cleaning crew comes in and cleans, and takes out the trash, we put the soiled linens in the bins, and the laundry crew does all the washing - I gotta say, it's kinda nice.

I get to snuggle, read books, and just be a mom. HOW COOL IS THAT?? Very.

Doug arrived yesterday afternoon after a very long flight. He was stuck on the runway in Chicago for two-and-a-half hours. When I saw him through the window of Cameron's hospital door, my stomach did a flip. It is so good to have him here.

Mama Jane went back to the apartment last night for a much needed goodnight's sleep. We will get a little break now, and the children will be taken care of by the wonderful medical staff here on the unit.

All is well here. Thank you for your prayers and wonderful words of support and encouragement. We love you!!

Always in prayer, The Nicolls

Thursday, April 3, 2003 9:40 PM CST

Cameron lay nestled in Mama Jane's arms as they finally wheeled the both of them up to 5200 after a long day at clinic. I felt as if someone had taken a stake, and drove it through my heart. This is one of the many times that I wish I could somehow split in two, and be with both my children at the same time - equally, and entirely.

The morning started out with Cam vomiting several cups of bright red blood. Dr. K gave us instructions to get to clinic within a half hour, at which time he would receive platelets and a blood transfusion; and then they would try to sort things out.

After 12 hours of clinic, the final verdict was that he has an upper GI bleed, and needs to be re-admitted to 5200. They put him on an IV med that should stop the bleeding, but they need to draw labs every 8 hours to make sure he isn't losing too much blood.

In the middle of this same day, we were told that Douglas' pink lumen has not cleared. The time is up. They need to pull his lines. I couldn't believe my ears. Why would 2 lines clear and not the other? They had several answers that made sense, but it still did not negate the fact that Douglas has to go under the knife again.

He is so weak and feeble, that he can’t even sit up on his own, or take 2 steps without his deteriorated legs giving out on him. I’ll never forget when they told me transplant kids look like stick figures with potbellies. I remember thinking, “not my chunky monkeys…” Wrong. Here we are. He looks like a skeleton with a distended abdomen, and now we have to put him in even more misery with this surgery.

I thought that was bad, until they came back and told me that they would have to do the surgery twice. They will place a temporary line until his cultures came back negative, then they will go back in and place a permanent one. The surgery requires burrowing through his chest, slicing open his superior vena cava (the big vein that carries blood directly to your heart), and placing the central lines. Twice. Ouch.

I thought this was bad, until they came back and told me he would have to be re-admitted to 5200 for the 7 days. Because of his gut GVH, he is having trouble holding his platelets. Without platelets, we bleed to death. After a surgery like this, they want to monitor him closely, and draw labs every 8 hours to prevent an internal bleed. Sound familiar?

I thought this was bad, until they came back and told me that Cameron took the last bed on 5200. My saving grace in the last paragraph was that at least I could be with both of my children. Now, Douglas will have to stay on a separate wing in the hospital, one that we are unfamiliar with, and know absolutely no one. At least on 5200, he would have had his set of favorite nurses to make him feel at home.

So, at the end of the day, Cam went up to 5200 with my mom, and I came home with Douglas to administer his meds, and take him to surgery at 8:00 tomorrow morning.

I feel defeated. Spinning my wheels. Trying to do everything perfect and getting knocked down. I feel as if I'm trying to contain water in a sieve. They've told me over and over that we have little control over the complications that may occur, but basically, I didn't want to believe them. I wanted to believe that effort equalled success. I'm learning that it certainly doesn't make any guarantees...

Well, I guess that’s all for now, I have to pack our bags for our one week get-away to 52/5100! Thank you for checking in on the boys. Please pray for their health.

Love to all, The Nicolls

Wednesday, April 2, 2003 9:46 PM CST

Spencer's e-mail address is actually spikes262@msn.com (as opposed to aol.com). Sorry about that, Spike.

Several of my freinds, and cousins have told us to post our family foundation on this website. In fear of appearing obnoxious, we didn't put it on. Funny what desperation will lead you to. What we don't want, is for all of our family and friends who have already given us so much money, feel pressure to give us more. So, if you've already given us money, DON'T GIVE US ANYMORE!!! SHEESH!!!

However, if you know anyone who has frequent flyer miles hangin' around, we could sure use them!! Due to his job, Doug has to be home now during the week. Our hope is that he can fly here every weekend - that's a lot of miles!! Well, here is our account information anyway...

Pennies For Nicoll Foundation
c/o The Bank at Broadmoor
155 Lake Avenue
Colorado Springs, CO 80906
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Douglas' red lumen is CLEARED!!! Hooray for Douglas!!! They can't seem to find the pink lumen culture anywhere. Sound familiar? Funny. They cultured him again yesterday, hopefully we will know something tomorrow.

Cam continues to vomit and poop blood. They put him on prilosec. Soon. Hopefully, soon.

Thank you to all for your prayers and loving support!!

Love to all, The Nicolls

Tuesday, April 1, 2003 10:43 AM CST

Children with Sanfilippo syndrome sleep very little at night, and have very difficult behavior. They chew on anything they can get their hands on - even their hands.
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Today is our big clinic day. We are hopeful that they have the cultures back on Douglas' other 2 lines.

Cam is vomiting and pooping old blood, (as opposed to bright red fresh blood, which would be indicative of something much worse). They think his stomach lining is in trouble. Dr. K is going to change up some of his meds today. We hope to see quick results with the change.
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Back in June, after the diagnosis of the children, we created a foundation in hopes of raising money for research and medical expenses. Our good friend Audra came up with the name, [Pennies For Nicoll], sent off for a tax ID number, and filled out the paperwork for a 501(c)(3). In no time at all, we were off and running!!

We formed a committee, a group of the most giving, caring, beautiful friends, to set up our first fundraiser. All the people involved made the event an amazing success. Tears were welled up in our eyes all day. The unbelievable outpouring of love and generosity was absolutely awe-inspiring. It was a cold day in October, with sleet coming down, and not one golfer canceled. Before the shotgun start, the clubhouse was PACKED AND BURSTING with love, tears, laughter, and pure unadulterated fun - all in the name of saving Douglas and Cameron.

By the end of the day, $85,000 was raised for Sanfilippo syndrome research. To this day, we cannot find the words to truly express how we felt that day. It is a memory that will be embossed in our brains forever.

In the past few months, unbeknownst to me, another group of our friends, including Doug’s brother, Spencer, have been busy setting up another fundraiser. This fundraiser is being done to raise money to help pay for our expenses out here. We are so grateful for this (as our Pennies For Nicoll account balance is negative $50, and we still have a few months to go!!! The hidden expenses of co-pays, parking, paper towels, diapers, etc., has really caught us off-guard).

In addition to the fundraiser, they have for purchase, fleece vests, t-shirts and hats with the Pennies For Nicoll logo embroidered on them. Once again, we are left in-awe at the insurmountable love and support. The reason I am posting this is 2-fold: 1. To express our appreciation, and 2. Just in case anyone wants to be a part of it, or if maybe would want a t-shirt, jacket or hat. If so, you can e-mail Spencer at spikes262@msn.com.

It is so important to us that everyone understands how much we appreciate everything that all of you have done for us. Our mom and dad, aunts and uncles, brothers and sister, cousins, Grandma, friends, co-workers, neighbors, nurses and even strangers have all touched us so deeply in so many ways. When we’re at an all-time low, just to hear “I love you,” is sometimes all we need. And you are there, and have continued to be there for months and months. Thank you…

Love to all, The Nicolls

Saturday, March 29, 2003 10:53 PM CST

Good news for Douglas this afternoon. His white lumen came back negative. One down, two to go!!! Hopefully, we will know by Monday whether the other two lines have cleared. If they have, then we will run the antibiotics through a 14- day course, culture again and go from there. If they are not cleared, he will have to go back to the operating table.

Cam is standing on his own for almost a full minute (until he realizes it, then he falls down). His incisors have finally cut through his gums, so that has given him some relief. If his lips would heal, he would be "good to go." He will be walking and eating and living a normal life again before we know it.

Having my brothers and sisters out here with me has been so wonderful. They provide me with strength, laughter and love, each in their own unique way (not to mention complete repreieve from the laundry duties)!! When my friends and family come out to help, they get an understanding of what we are going through out here, and that alone, just the plain feeling of being understood, is good therapy.

Megan left first, then Brian the next day, and now Michael will leave tomorrow. I will miss them dearly. I wish they could stay the whole time, it would kinda be like summer camp. Kinda. It was a much needed visit from all 3, and they each came out, one right after the other. Funny how that worked out.

Well, we're back to baby steps. Let's hope for these lines to clear up one by one, and then move forward to the next "event."

Thank you for your prayers. We love you all!!

Love, The Nicolls

Thursday, March 27, 2003 9:28 PM CST

I'm not sure how to explain this exactly, but let's just say things really heated up in the meds department. Douglas has 3 contaminated lines. Apparently, his bowel and intestinal lining is so irratated that the stuff inside the bowels is leaking into the blood stream and causing strains of bacteria to grow. Not good.

They tried 3 IV antibiotics for a while and learned that they didn't work. We started three more today. If these don't kill the bacteria, they will have to remove his central lines and put new ones in.

The meds are every six hours now, starting at 6 in the morning, and finishing up a little after midnight. Did I say BRING IT ON? They brought it on...

The 4-week post-booster RFLP came back with still less than 1% donor cells. Dr. K is still hopeful for the biopsy. Should be back in 2 weeks.

Cam contracted the herpes virus on his lips and anus. Not fun. Hopefully his new ointment will help. It's not life threatening in this form.

Boy are we busy. Thank you for your wonderful words of encouragement and prayers!!

Love, The Nicolls

Monday, March 24, 2003 2:15 PM CST

Back on February 11th, Douglas received his "booster" of stem cells. Dr. Kurtzberg told us that if the donor cells didn't grow after 6 weeks, then he would have to go back up to 5200 for another round of chemotherapy, and a second transplant. Well, tomorrow happens to be the 6-week anniversary, and still we don't know if the donor cells are growing. She put an urgent message into the lab in hopes of getting biopsy results soon. The anxiety is high, and the worry is sky rocketing.

The grim reality of the situation is that if the new cells are in fact not growing, then everyday, every hour, and every minute that goes by, his disease is causing gradual damage to his brain, central nervous system and other vital organs. With Sanfilippo syndrome, brain damage occurs first. Once the brain is damaged, there is no reversal.

This cruel disease is slowly eating away at my first born child's brain and other vital organs, and there is nothing I can do to stop it.

He was diagnosed in May, at 2-years-old. We found out about this procedure in August. We moved out here in October. It is now the end of March. He is approaching his 3rd birthday, and is still not sucessfully transplanted.

The anguish and anxiety that I continually stuff down inside of me is building and building. I am happy to be here. I am hopeful here. I will give up my whole life, work my fingers to the bone, spend hours upon hours at clinic, administer meds through the day and night, whatever it takes to ensure health and well being of my babies. BRING IT ON!!!

What I can't take is not knowing.

HOW CAN THIS BE HAPPENING TO MY BABY????????? HOW CAN WE GET OFFERED AN OPPORTUNITY TO SAVE HIM IN THE KNICK OF TIME, BUT THEN LOSE THE WINDOW OF OPPORTUNITY BECAUSE FOR SOME REASON THE FIRST ONE DIDN'T WORK, AND FOR SOME OTHER REASON THE BOOST DIDN'T WORK, AND FOR SOME OTHER STINKIN' REASON THE FREAKIN' LAB CAN'T GET A FRICKIN' TEST DONE???

I feel like I could go a couple rounds with Mike Tyson and give him a good match. I just want to punch somebody. Not someTHING. SomeBODY.

Dear God, I could really use a little help right now. Please hear my pleading prayers for Douglas. Please save him. Please save his brain and his health. Please. He is weak and in pain and misery. Please make it all worth it for him in the end. Thank you for hearing me. I know you are with me. Love, Tracie

Saturday, March 22, 2003 5:43 PM CST

Sanfilippo syndrome, an enzyme deficiency caused by a recessive gene carried by both parents, tends to have 3 main stages:

1. Lagging behind in development, loss of language skills.
2. Extreme activity, restlessness, difficult behavior.
3. Total loss of bodily function, walking, eating, etc…
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Douglas’ ultrasound and x-rays came back showing excess fluid in his abdomen, liver, and bowels. He started a new drug that will be administered IV, in clinic twice a week. We hope it will kick in quickly and relieve him of the painful cramping and the horrible diarrhea.

Cameron vomited this morning, but it’s not chronic. He’s starting to eat again, little by little.

Our little friend, McKenzie passed away yesterday. She was the first child to undergo 3 stem cell transplants. She and her parents lived on 5200 for about 7 months, and fought so hard. She made medical history here at Duke, and made a lot of friends on the way. Please say a prayer for her parents and her 4 brothers and sisters who have been through so much.

Thank you all for checking in. We love you and appreciate you all!!

Love to all, The Nicolls

Wednesday, March 19, 2003 8:06 AM CST

There is an estimate in the United States that 1 in 24,000 births will result in some form of MPS. MPS stands for mucopolysaccharidosis (muco - poly - saccharide - osis); which is an enzyme deficiency.
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Douglas' third RFLP came back yesterday. Still less than 1% donor cells. The blood for this test was drawn the day before his biopsy, post-GVHD symptoms. We were so confident that it would show a better number. Another Tuesday has come and gone, and we feel we are at yet another standstill...

During the examination, Dr. Kurtzberg noticed that Douglas' belly was really hard and bloated, and that there may be a problem. We've been expressing all week to the nurse practitioners that Douglas' belly looks like it's going to explode, and they just chalked it up to increased steroids.

She thinks he may have excess fluid in his abdomen and liver, and possibly air in his bowels. He will go in for an ultrasound and CT scan this afternoon. She told us this is caused by GVH of the liver, and can be treated. We're hoping soon they can relieve him from this misery.

How can he have GVH (which is graft vs. host, or donor vs. natural), if he is still less than 1%? The answer is that the blood may not be showing the true number. The biopsy will show the true number. So, we wait...

Cam is doing great.

Thank you all for checking in. Please pray for Douglas' cells to grow. We love you all.

Always in prayer, The Nicolls

Sunday, March 16, 2003 10:34 PM CST

I can't think of any pain more excruciating than giving birth to a child, holding and loving that child, and then having that child taken away from you. It was a week ago that we lost our dear little friend Reese Coble. "Reese Cup" was Cameron's age, diagnosed with MPS I. Shawn and Doug received the diagnosis of their baby around the same time frame we learned of our children, and brought Reese here for transplant around the same time we did. Reese had his ups and downs through transplant like Cam, but sometime after he was discharged, he contracted Para flu; which led to complications that eventually ended his life. He passed away in his mommy's arms a couple days before day 100, his "free to go 'home home'" day...

I have wept and sobbed tears of pain and sorrow for Shawn and Doug. I can't be left alone without tears welling up in my eyes and streaming down my cheeks. My heart is breaking. I am so sad for them. Please say a prayer for the Coble Family. They are an unbelievable family full of love.
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Douglas is so weak that he is no longer able to climb stairs, or even get out of bed on his own. The other day we were walking hand-in-hand down a very slight downhill grade, and his legs just gave out on him. I later learned that the amount of steroids he's on will not only puff him up and make his "inny" an "outy", but will also severely weaken his muscles. With the diarrhea and vomiting still not letting up, you can probably imagine how he feels. We see Dr. Kurtzberg Tuesday - hopefully she will have some insight - maybe even a biopsy report...

Cam is building strength each day. He is becoming more independent of clinic (not needing blood transfusions, platelets, etc.). This is the goal. Good job, Cam!

Thank you all for checking in. I haven't had much strength to write lately. I'm so grateful for Doug and Megan. They've really taken care of me, as well as the kids this week.

Love to all!

Always in prayer, The Nicolls

Wednesday, March 12, 2003 7:40 AM CST

FACT: Children with Sanfilippo syndrome are missing the enzyme that is essential in cutting up the used muccopolysaccharides called heparin sulfate. The incomplete broken down muccopolysaccharides remain stored in cells in the body causing progressive damage.
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Douglas' RFLP came back yesterday. It was disappointing to learn that he is still less than 1 percent donor.

Keeping in mind that this test was taken just about 2 weeks post-booster, and BEFORE he started all the symptoms of GVHD; we are extremely hopeful that the biopsy will show a greater number.

He feels yucky from the increased steroids, and he's starting to get very puffy again. It's almost like he had to start all over on the amount of meds, where as Cam is being weaned every week. It's temporary (seems to be our mantra).

Cam continues to improve everyday. He hasn't vomited in 3 days now! They took him off lasix (a diuretic to help stabilize his fluids), so the sheets stayed dry all night for the first time in 3 months. He slept all night, and looks more bright-eyed this morning than he has in a very long time.

Thank you for checking in on the boys. We love you all dearly and feel very comforted in knowing you are here with us - ups and downs...

Always in prayer, The Nicolls

Tuesday, March 11, 2003 7:38 AM CST

Fact: Sanfilippo syndrome is a genetic disorder. One in four of our pregnancies will end up in an affected child. Our siblings have 1 in 4 chance of being a carrier. Our cousins have 1 in 16 chance of being a carrier.
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Mama Jane left yesterday, and finally, (seemed like forever), Doug is here!! We will miss Mama Jane. She is an unbelievable source of support and help for us. She has basically given up her life to be here. We just wouldn't be able to do this without her. Thanks, mom - now hurry back...

It's as if Cam's fairy godmother came in and waved her magic wand and sprinkled him with fairy dust. The doctors kept telling us that he would eventually stop heaving - and he did. He has. He has not vomited since Saturday night. He and Mama Jane woke up Sunday morning with the usual bile, mucous and blood (from his cracked lips), all over the sheets and their jams, but then all day Sunday - nothing. We just couldn't believe it. Still can't. Eleven weeks straight without a break. He is finally still. Praise God, hallelujah.

Douglas is slowly getting better. His buckets have turned into cups, he still can't keep anything down, but in time, the increased medication will help. They took him off the anti-rejection drug that causes the black hair to grow all over his face and body. They switched him to the anti-rejection drug that Cam is on (notice no hair). In time, the cyclosporin hair that has already taken over his eyebrows and lips will fall out. They increased his steroids temporarily, and from that we should see him "bulk up" again like when we took him home from the hospital. He can now fit back into his normal clothes, but we are keeping the size children’s 7 close at hand!

Hopefully, we will get some news on the RFLP today at clinic.

Thank you for checking in on our little troopers. God must be listening to all the prayers. We just can't thank you enough.

Love to all, The Nicolls

Friday, March 7, 2003 6:14 PM CST

FACT: In order to have a child affected with Sanfilippo syndrome, both parents must be a carrier of this recessive gene. The chance of two people getting together who both carry this recessive gene is very slight.

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Douglas has always, since the day he was born - when I was dilated to 9cm, and lost his fetal heart tone which ended up in an emergency cesarean, to the bi-lateral inguinal hernia surgery at 5 weeks old, to the 90 days of diarrhea at 20 months old, to the lack of language skills at 2 years old - had a knack for overwhelming us with worry...

At 77 days post-transplant, Douglas is FINALLY showing signs of cell growth. We got the biopsy back today and they found GVHD (graft versus host disease), which is the culprit for all of the diarrhea and vomiting. With still no actual RFLP results, they can only deduct that GVHD means some amount of donor cells are in there causing problems.

Believe it or not, this is GREAT news!!! We are eager to learn more next week.

Thank you all so very much for your endless prayers, love and support.

Love to all, The Nicolls
`

Thursday, March 6, 2003 5:15 PM CST

FACT: Sanfilippo syndrome is a mucopolysaccharide disorder and is also known repectively as MPS III. The name is derived from Dr. Sylvester Sanfilippo who was one of the doctors in the United States who described the disease in 1963.

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Douglas' surgery was a success!! It is extremely difficult to watch your child go completely "under." He did just fine. They say we will get preliminary results tomorrow. I’m not holding my breath. Hopefully, by Monday we will know something.

Cam is still the same, puking up mucous through the day and night – he can’t seem to get a break. Today was a monumental day for him; however, he had two bites of bread, chewed it, and swallowed it. FIRST TIME HE’S EATEN ANYTHING IN 77 DAYS!!!

We are too busy cleaning up puke and diarrhea to write much more!! No exaggeration!!!

Thank you for your continued prayers and support!!

Love to all!!

The Nicolls

New photos uploaded!!!

Wednesday, March 5, 2003 7:38 AM CST

Well, things aren't always what they seem...

We had a wonderful meeting with Dr. Kurtzberg yesterday. Boy, do I love her. As we were talking about what was going on with the boys, and discussing a new game plan, a powerful thought came into my mind. This woman is the only person in this whole entire world, who is offering Douglas and Cameron a second chance at life. She is the one and only source of hope for our sons. Her life-long commitment and dedication to her work is going to save Douglas and Cameron's lives.

Then I thought, wouldn't it be neat if she received a nice note from everyone who loves Douglas and Cameron. Just a thought...

Joanne Kurtzberg, MD
Duke University Medical Center
Box 3350
Durham, NC 27710

Okay, apparently there are special dark tubes that need to be used when drawing for thiamin. If the blood is exposed to the light, it changes the outcome of the test. So, Dr. Kurtzberg, who didn't want to take the test in the first place because Cam doesn't have any signs of thiamin deficiency, now has to face me and tell me they screwed up and have to draw it again. Tough spot. The last time they drew for deficiency, because it is a 3-week result, they gave him an IV boost of thiamin for 3 days. She reassured me that if he was deficient the first time, the boost they gave him will cover him until we get these results back - which is 3 weeks.

He is still violently heaving through the day and night. He is on every medication he should be, but I guess it just has to run its course.

Douglas, as you know, has had buckets of liquid diarrhea for weeks now (we bought Little Green steam cleaner for our carpets). He vomits everything he eats - even bread. His WBC dropped down to 1.0. At one point it was up to 19. Tomorrow he is scheduled for a scope and biopsy of his entire GI (entering in through his mouth and up from his bottom). He will be on an operating table (again), under general anesthesia (again). I just hate the thought of it, but it has to be done. When he's under, they are going to take tissue samples for testing. They will also take some tissue to test for donor cells.

Thank you for your continued prayers and love!!

Love to all, The Nicolls

Tuesday, March 4, 2003 8:13 AM CST

Still nothing...

Saturday, March 1, 2003 9:32 AM CST

Today I write with a heavy burden of worry on my shoulders. Douglas and Cameron are the 7th and 8th Sanfilippo children to undergo stem cell transplant. This procedure for them is expiramental as they do not yet have enough data recorded, or longevity studies. The first Sanfilippo child to be transplanted, Julia, is just now 2 years post-transplant.

Back in December we sadly reported that Kyle Cottey, the fourth Sanfilippo child to be transplanted, died due to a thiamin deficiency post-transplant. He had an allergic reaction to the multi-vitamin in his TPN, which meant he had to take his vitamin orally. Cameron followed that exact path, so everyday I crush up a Flinstone vitamin, mix it with cherry syrup, draw it up into a syringe, and give it to him along with all his other oral meds. As you know, Cameron has been vomiting about 10 times a day, through the night, for the last 2 months.

Our concern, of course, is that he may not be absorbing all, or any of his oral meds, including the vitamin. Because of the painful loss of our friend, Kyle, thiamin deficiency is in the forefront our our brains. We asked for a test to be run. Initially, Dr.Kurtzberg refused to do the test. She thought we may be over reacting and worrying ourselves unnecessarily. Doug and I felt so strongly about this that we kept pushing the issue. The last time I brought it up, she said to me, "you're just going to have to trust me on this one, Tracie," and refused to run it. I didn't want her to be mad at me, so I let it go.

The next day I talked to another nurse practicioner, who in turn talked to Dr. Kurtzberg's nurse practicioner, who in turn talked to Dr. Kurtzberg, who finally agreed to run the test (I think just to shut us up). We received the test results last night. Cameron has a thiamin deficiency. He has been deficient for at least a month, probably two.

It's the weekend, and they aren't going to do anything about it until Monday. The next couple of days will be long. We will let you know Monday what they decide to do.

Thank you for checking in on the boys, and thank you for your endless prayers and support.

Love to all, The Nicolls

Wednesday, February 26, 2003 7:52 PM CST

Hello family and friends,
This is Cousin Jean with the Nicoll update.
I just wanted to write you a quick note before I leave Duke tomorrow. This has been a very bittersweet week for me. I have read Tracie’s journal and tried to imagine what her life here was like. What an eye opener!!! Tracie is so kind to all of us in the journal. She gives us such a “Disneyland” update. While she hints the to the reality I never knew the gravity of this situation. The boys need so much right now. Medicines all day long, poopy diapers, vomiting all over the place, laundry (at least 8 loads a day), and then the cleaning! Yikes!!! Wash down everything everyday. Yes, that means clean those toilets and hand wash the floors EVERYDAY! And then there is clinic and rainbow day. Tuesday, Thursday and Saturday. All day. Plus the daily “short” trips the rest of the week. And lets not forget taking care of those precious boys. While worrying about test results and trying to stay positive! We all know how hard having a positive attitude all the time is. I am so glad Tracie has such a great family and such supportive friends. Not being able to go through this with Doug at her side all the time must be heart wrenching. He is working so hard to keep everything going and it must be absolute torture for him to be torn like this. I have first hand seen her read your messages on the journal and smile at the support. Mama Jane…you know how growing up you are close with some and not with others? Well Aunt Jane and I were never “best buds” yet I loved her and thought she was nice. Boy was I off! She is wonderful. What an amazing person! I know that parents do for their children, but dropping everything in your life and just helping is amazing. The love and knowledge she has brought here with her is unbelievable. She is the wood holding this ship together. I am proud to be related. The family support is just awesome. I am so thankful to have been able to come and share in the cleaning, the support, the pain and the love of Cameron and Douglas. Now that they will be here at least through the 4th of July they will need four more months of rent, four more months of frequent flyer miles and four more months of your support! So please keep the guest book alive and all the support coming!
Jean

No test results are in for Douglas this week.

New photos in the photo album!!!

Sunday, February 23, 2003 3:12 PM CST

Today is the most relaxing day we've had since pre-transplant. My cousin Jean came in last night to help us, and she has not stopped to take a breath from the moment she stepped foot in the door. By the time we were done giving meds this morning, there was nothing left to do - she did it all!! Thank you, Jean!!

Douglas had to go to clinic today for sodium bicarbonate, (whatever that is). His diarrhea is still haunting him day and night, not sure why the IVIG isn't kicking in yet...

Cam is feeling better day by day. He's still vomiting, poor little man, but it's a little less frequent.

I think I confused everyone with the pictures I posted in the photo album. Those pictures are from last October prior to the tonsilectomies, and prior to the central line surgeries. I just wanted to post a reminder of what Douglas and Cameron "really" look like.

They are still on isolation, so, unfortunately, they won't be crawling around on the grass, going to the park, playground, or any other public area for quite a whille yet.

Thank you everyone for checking in and sending your love and support. Please please pray for Douglas' cells to grow!!!

Love to all, The Nicolls

Saturday, February 22, 2003 0:59 AM CST

Mama Jane and I took the kids on a picnic to Falls Lake right before they went into surgery for their central lines. We posted some pictures of that day - what great memories!!

Today is my mom and dad's 35th wedding anniversary. My dad is on the road to Napa Valley to visit my 85 year-old grandma who is recovering from yet another life-saving surgery, and my mom is (still) here helping us. Who would have ever thought this is how they would be celebrating 35 years of marriage, separated from one coast to the other.

The sacrafices they have made to help us through this time will never ever be forgotten. We love you both so very much.

HAPPY ANNIVERSARY MOM AND DAD!!!

Love to all, The Nicolls

Wednesday, February 19, 2003 0:59 AM CST

We had a good visit with Dr. Kurtzberg this evening. We waited at clinic for her from 1pm until 9:00pm, but, like always, it was worth the wait. She has so much experience in the wonderful world of transplant. She can look at what we perceive as an unbearable reality, and reassure us it is the norm, and that the kids are doing exceptionally well – all things considered.

A new virus showed up in their latest labs. This virus causes horrible diarrhea and vomiting. Finally, an answer to their relentless misery!! They will begin a new medication called IVIG tomorrow morning. Hopefully, some reprieve is on the horizon for Douglas and Cam!!

Short and sweet today!! Love to all!! Thank you for caring, and checking in on the boys!! We will forever be grateful for your continuous prayers and support!!

Love, The Nicolls

P.S. Check out the photos!!! Cam stole the scene this time…

Monday, February 17, 2003 10:51 PM CST

We just got a taste of how much easier things will get as time goes by...

For the past three weeks, Douglas and Cam needed to be at clinic every single day. We would draw their blood first thing in the morning, run it to the lab, administer meds, and then go to clinic. We would then wait in an exam room (sometimes 4 hours) for a nurse practitioner to go over the lab results, and tell us what the rest of our day would look like (i.e. red blood cell transfusion, platelets, potassium, magnesium, etc.). It wasn’t unusual to get home around 8pm (just in time to start meds again).

As of Sunday, we no longer have to go to clinic everyday. Our clinic days are Tuesday, Thursday and Saturday. The rest of the days, we draw their blood in the morning, drop it off at the lab, and wait at home for the nurse practitioner to call us and let us know if they need anything that day. Their quality of life just increased tenfold. Part of the hardship of the daily grind was the guilt of having to take Douglas and Cam into a 10X10 room everyday all-day, just waiting and waiting.

Just to think, before this all started; we used to think it was hard to take two babies to a routine check-up. Hah!!!

Douglas’ RFLP (donor cell test) will be drawn every week. We will post his results as we get them. Please pray everyday for donor cells. He has horrible diarrhea, and is just not acting like himself. No jumping on the bed or playing chase. He likes to snuggle, and watch videos, and that’s about it. It’s a good sign that he may be growing cells. Maybe.

Camaroon is STILL throwing up about 10 times a day. Maybe Dr. Kurtzberg will have some more insight when she looks at him tomorrow. She examines the kids every Tuesday.

Hopefully we will have some good test results to share soon!! Keep praying and keep believing!!! Thank you for checking in on the boys!!! Our love goes out to you!!!

Love, The Nicolls

Friday, February 14, 2003 8:45 PM CST

WELL THAT WAS A ROUGH AND ROWDY WEEK!!! Whew, we made it through yet another...

Doug is feeling better, and back in the apartment with us. He wears a mask, and doesn't yet take the kids to clinic in fear of spreading his cooties to all the other kids lacking immune systems.

While Mama Jane and I are at clinic, he is busy at home managing to scrub the bathrooms, germicide toys, floors and door knobs, strip beds, and wash, dry, fold and PUT AWAY all the laundry. We come home to an immaculate home - an environment safe for the kids and prepped for the evening meds. He drops off the blood every morning, drives us to clinic, picks us up, unloads the strollers and bags, etc. It is so nice to feel taken care of. Not having to find parking at the hospital everyday relieves a lot of headache in its own right!!! I swear sometimes it's the little things in the daily grind that can put you over the edge.

Meds are still busy, but with all the other stuff already done, we can spend quality time with the kids, and even read the guest book and update the journal!!

Cam is still vomiting about 10 times a day. They're not sure if he has GVHD of the gut, or a sinus infection, or if it's the tail end of his mucositis. They added two more IV meds in hopes of treating 2 of 3. If it doesn't subside in a reasonable time frame, they will have to do a scope and biopsy.

Douglas decided to stop eating. They put him back on TPN (IV nutrition). They don't know if it's due to the chemo-like drug, GVHD, or new cells growing. We'll take the new cells growing!!!

Thank you for your continued prayers and words of encouragement!! Love to all!!!!

Love, The Nicolls

Thursday, February 13, 2003 7:45 AM CST

These are our babies right before we were admitted into the hospital. To look at them now, in addition to how sick they feel everyday, sometimes makes us wonder if we are even doing the right thing.

Of course, immediately following that thought is the knowledge of what Sanfilippo syndrome will do to them if left to run its natural course. Just thought we'd share a little pain today.

Thank you for checking in.

Love, The Nicolls

Tueday, February 11, 2003 8:41 AM CST

I never thought life could get this hard. Well, let me take that back. Life will never be as hard as it was in the spring of 2002 when we were told that Douglas and Cameron had a terminal disease, and there was no hope that a treatment would be discovered in time to save them. On days like today, we try to remind ourselves that no matter how hard and long this road gets to be, nothing - absolutely nothing is worse than the despair we once felt.

Doug is sick with flu-like symptoms, so he is staying at a hotel down the street to prevent spreading whatever he has to the kids. It's just horrible timing to have caught a bug. We were looking so forward to being together as a family for the next two weeks, and now he has to "wait it out" in a lonely hotel room 2 blocks from here. It seems cruel, but the alternative is not worth the risk.

Without Doug or Mama Jane here, I am left to do all the meds, both oral and IV for both the kids, by myself. This is a task I thought I could take on, and have, but after day two, I've realized that so many other things have fallen through the cracks. Just when I raise both hands over my head in victory, I see that Cameron's diaper is so full he's soaked him and every piece of linen on the bed, and then realize that I forgot to feed Douglas dinner, and haven't spent one minute of quality time with either of them. No reading books, snuggling, playing chase, rocking, holding, I'm all about priming tubing, preparing pumps, and drawing up and administering medications. Needless to say, I have such horrible guilt for not being able to do “mommy” things. I called my “mommy” and asked her to come back early. She will be here this afternoon. I’m so thankful.

In the meantime, my friend Tricia flew out to rescue us. She dropped everything, left her kids (ages 3 and 18 months) with her hubby, took time off from work, and came to help us. God love her.

Cam is doing great. He’s still vomiting about 6 times a day, through the night, but the doctors don’t seem to want to give him anything. He hasn’t had anything to eat in about 60 days - all normal transplant stuff. But, he’s laughing, talking, re-arranging the furniture and re-programming all the electronics, all signs that he’s feeling better.

Today is Douglas’ boost day. We hope and pray this plan will work.

Love to all!! Thank you for checking in on the boys!!

The Nicolls

Friday, February 7, 2003 11:17 PM CST

Our baby Douglas has a renewed hope tonight. Dr. Kurtzberg called us a couple hours ago to tell us that his repeat test shows "tiny traces of donor cells." Less than 1 percent, but enough to give him a chance of engraftment without a second transplant.

The plan is to give him a drug that will kill his T-cells, which are the cells that initially fought off the donor cells. Then, they will give him a "booster" dose of stem cells. Apparently, before they administered the first transplant, they put aside a significant amount of the cord blood in the event that he would need a little "boost." And as it turns out, he does.

We start tomorrow morning with the chemo-like drug. It's not chemotherapy, but it is poisonous enough to kill his white blood cells. He may experience skin welts, itching, vomitting, and swelling; however, the drug will NOT further damage his vital organs.

It will be distributed through a 2-hour IV drip on Saturday, Sunday and Monday. Tuesday will be the BIG BOOST DAY!!! If after 6 weeks the donor cells aren't "winning the fight," then we head back up to 5200 for a second transplant.

Our April reunion home will be postponed. Depending on how the next 6 weeks go, it may turn into the end of June or July. We are not as eager to get home as we are to get Douglas safely engrafted. We would stay here an eternity if it meant our children would regain their health.

We thank you always for your love, prayers and unending support. WE LOVE YOU ALL!!!!!!!!!! Thank you for your strength and encouragement!

Love, The Nicolls

Wednesday, February 5, 2003 9:03 AM CST

Cameron is 99.99999% DONOR CELLS!!!! Congrats, Cam!! You sure worked hard for it!!!

Love to all!! Thank you for praying!!!

Love, The Nicolls

Monday, February 3, 2003 5:42 PM CST

We were hit with a devastating blow at clinic yesterday. Douglas' transplant didn't work. His own cells grew back and fought off the new cells. He has to start all over again.

We are overwhelmed with sadness and fear, but not despair. The risks increase the second time, as the first chemotherapy conditioning has already caused some extent of damage to his heart, lungs, liver and kidneys. To what extent we do not know. We will know more after we have our official meeting with Dr. Kurtzberg. In that meeting, we will learn the probability of success of a second transplant, and all the calculated risks involved.

To get official diagnosis, we have to wait for a repeat test. They only run the tests on Thursdays, and it takes a week to ten days for the results. After that, we wait for availability on 5200. Hopefully the second transplant will be covered by insurance, and hopefully we won't have to wait too long for a bed. Everyday that goes by, his disease progresses.

Cameron vomits every 20 minutes through the night. They say it's all part of recovery, and not to be concerned until we see blood. We are exhausted, and so very afraid.

That's it for today. Thank you for checking in on the boys, and thank you for your continued prayers.

Love to all!!

The Nicolls

Saturday, February 1, 2003 4:33 PM CST

Just when we thought things would be a little less worrisome, Douglas and Cameron end up in the emergency treatment room on 5200 last night.

We started the evening off with Douglas vomitting what looked like 6 gallons of pure bile on our brand new carpet we just had installed. Cameron soon followed suit, and it just got worse from there. With relentless, foul-smelling diarrhea and continued upchucking, we rushed the kids to the BOP room on 5200. To walk back down that wing of the hospital was dreadful. The thought of having to go back there is haunting.

After a few treatments, and some IV fluid, they sent us home around 4:30 this morning. It looks as though Douglas picked up an intestinal virus at clinic, and passed it right on to his little brother. We won't know exactly what it is until Wednesday.

As we know, contracting a bacteria, virus or fungus can be life-threatening to a child with a supressed immune system. Please say a prayer.

Thank you for caring so much and checking in on the boys. Love to all!!!

Love, The Nicolls

Wednesday, January 29, 2003 at 09:27 PM (CST)

Today is by far one of the happiest days of my life. The only thing that would have made it better, is if Doug were here.

We brought Cam home on his 4-hour pass today. This day was not planned, which made the whole experience even more exciting. Here's how it unraveled...

I asked the nurse if Cam had a pass (being it was the day before discharge). After checking with the doctor, she came back and said he could leave from 2pm-6pm. I looked at the clock, it was five minutes 'til two. I jumped to get the phone to call my dad, hoping he would be available to come and get us. When he answered, he told me he was making his way down the hall to 5200. What timing!!

So, at 2pm we took Cameron into the "outside world" for the first time in 45 days. The feeling I had holding my baby on my hip, free from IV lines and confined space was undescribable. I held him tight to me thinking, "I have my baby back!!"

When we arrived at the apartment, we couldn't believe our eyes. Mama Jane and Douglas were home!! They had come home from clinic early to await lab results, (normally, we wait there for labs). We were all there together, and it was the best feeling!! My only wish was that Doug was there, too.

Douglas didn't recognize Cameron right away, but when he did, he didn't leave him alone. "Baby, baby!!" he would say. He hugged him and patted the floor next to him beckoning Cam to come and sit next to him, and Cam did it!! He crawled for the first time in 40 days! We heard his voice again today for the first time as well. And when I took him back to his hospital room this evening, guess what he said right before he went to sleep. "Mama."
______________________________________________________________________________________________________

My dad decribed to me his trip the night he arrived, "it's as if I had wings," he said. He drove over 1700 miles in 30 hours, and never felt tired, and never felt hungry. What is that all about? Divine intervention, I'm sure of it. I image God shining a light down from the sky onto the car driving out here. Keeping the roads clear, and freeing him of sleepy eyes and a foggy head. It's truly amazing how many miracles we have witnessed from the day we received the diagnosis.

Our prayers are being heard!! Thank you for your continued prayers and faith!!! And thank you for checking up on our boys!! We love you!!!

Love, The Nicolls

Monday, January 27, 2003 at 07:30 PM (CST)

Doug caught a cab to the airport early yesterday morning. By the time Douglas and I woke up, he was gone. We miss him terribly, and can't wait for him to come back. He will resume his schedule of flying back and forth every two weeks until we get to go home home.

Mama Jane and I were racking our brains trying to figure out how we were going to work out the logistics with just the two of us here, and we didn't get far. We can't take Douglas anywhere but clinic, so we are having trouble getting the things we need - groceries, new clothes and shoes for Douglas (he's outgrown everything), and other essentials.

My mom and I switch kids every 24 hours, because I can't handle being away from either of them much longer than that. So, last night Cam's nurse had to watch him while my mom took a cab to the apartment, then I got into that cab and took it back to the hospital in order to make the switch. Otherwise, I would of had to wake up Douglas, put on his mask, get him dressed (in clothes too small), and pack him up in the car. We said in passing, "if we had a third person, all these problems would go away."

Then, the phone rings. It's my dad. He's callling from Kansas City!! He left Colorado Springs early yesterday morning. He just decided to pack his bag and drive out here!! He will be here in about an hour!! He drove 1700 miles in a day and a half. God bless him.

Cameron continues to improve everyday. He played peek-a-boo today and laughed out loud! Douglas brings a smile to everyone he encounters at the clinic.

Home care is getting easier. Not easy. But easier. Cam will be out Thursday. Work will double at home, but we will be so happy to all be together again!!!

Thank you everyone for checking in and praying for us!! We love you!!!

Love, The Nicolls

Friday, January 24, 2003 at 10:27 PM (CST)

Douglas made us so proud in clinic today. He wore his mask the whole time we were there, and communicated with the nurses in a way that we have never seen. Good things are happening with him, and we are so excited!!

His WBC is 3.1 - good counts in transplant world, but with a suppressed immune system such as this, he is at high risk of infection. He is allowed in the aparment, in the car, and in clinic. That's it. And he has to wear his mask whenever he steps foot out of the apartment.

Home care is challenging to say the least. The first day was so overwhelming that it was almost comical. We won't flood you with the details, but just know that right now, it feels like complete chaos!! It's like anything, though, I'm sure once a routine is established, it will just become life as we know it...

Cam is still on the "inside" making his slow recovery. He looks much better today. His WBC is over 10.0!! We are truly amazed. They cut down his "G" today, that should help his GVHD. They completely shut off his pain drip and he is doing well with the methadone. They are talking about discharge day on Wednesday. We'll see. Like we've said time and time before, we are in no hurry.

That's all for now. Our boat just turned over and we're scrambling to get back on - and we couldn't be happier!!

Thank you for praying!!! We love you!!!!!!!!!!!!!!!!!

Love, The Nicolls

Wednesday, January 22, 2003 at 07:03 PM (CST)

The discharge nurse came by today to teach us how to care for Douglas when we get home. Doug, Mama Jane and I listened intently while she went on and on about mixing the TPN, flushing one med with saline and heparin, but if this other med is flushed with saline, the line will crystalize, and never draw blood from the line that this other med goes in, and be sure to prime the lines each time because an air bubble could be deadly, and then about contamination, etc., etc., when all of a sudden, his nurse pops her head in and says, "Douglas has a 4 hour pass today, so let me know when you want to take him home."

WHAT??

You should have seen the look on our faces! Filled with excitement and fear, Doug and I ran down to get the car, and install the new carseat. We then realized that Douglas' hat and coat were at the apartment. So, we zip to the apartment and I run as fast as I possibly can to get the coat and hat. Meanwhile, Doug is feverishly installing the carseat, having to adjust all the belts, and clips, and, well, they just never seem to make these things simple, do they...

Okay, so we have what we need, and we ZOOM back to the hospital to pick up our boy!!! I run up to get him while Doug waits with the car running. It seemed like an eternity waiting for the elevator, my mind was racing with thoughts of what we will do when we get home! When I got to Douglas' room, he was asleep. It's 8:30 PM, and he is STILL asleep. Needless to say, Douglas won't be taking advantage of his 4 hour pass. I guess he's saving his energy for his big confetti discharge party tomorrow!!!

Cam had another rough night. This time it was with violent dry-heaves. Poor little man. His skin looks better, though, and the mucositis is going away, so we were able to decrease his continuous pain drip another couple mg's. That's progress. He smiled for a mom who was out in the hall with her 5-week-old baby (with MPS II), and we all burst into tears, Emily, (his primary nurse), Carrie (the mom), and I. It was delightful!

Thank you for your continued prayers and ecouraging messages!!! We love you!!!

Love, The Nicolls

Tuesday, January 21, 2003 at 09:36 PM (CST)

Last night when I was holding Cam, the nurse came in and I said to her, "I just want someone to tell us he's going to be okay." She said, "Only God can tell you that. I wish I could reassure you..." but I didn't hear the rest.

At that moment, a feeling of calmness and serenity came over me. I looked into Cameron's eyes, and with complete confidence, I said, "You're going to be okay, Tooks! Everything is going to be okay!!!" I was overwhelmed with this feeling of relief.

I couldn't wait to tell Doug. Doug has been encouraging me to just let go, and feel God's presence. "He will talk to you, Tracie, he will. You just have to let go, and free your mind of your thoughts, and let him in." Thank you, God. Thank you!!! And thank you to my husband, who is my pillar of strength!!!

Cameron is SO MUCH BETTER today. His situation is a lot more complicated than we had suggested - as we may have guessed. Dr. Kurtzberg will not let up on the GCSF until his WBC reaches 10.0. She wants to ensure a good engraftment. We trust her with our life. Well, with our childrens' lives, literally!!

Cam is experiencing the side-effects of chemotherapy, steroids, transplant, and quick engraftment. He will not be comfortable, or "back to Cam" for several weeks. That is the road he has taken. At the end of the road, however, he will benefit beyond our brightest dreams.

Douglas is still doing unbelievably well. We are so thankful that he is engrafting at a more reasonable pace than his "tasmanian" brother. It's a lot easier on all of us. He gets to come home to the apartment on Thursday. We are eager to see him running around outside in the sunshine, and bringing "life" back into our home away from home. His primary nurse almost cried tonight when she saw his discharge date. He truly is a special child. He has touched many people on 5200...

Thank you for your continued prayers, friendship, and reassurance that we are not alone.

Love, The Nicolls

P.S. We have posted old photos of Cam. It's too hard to look at the sick ones right now.

Monday, January 20, 2003 at 12:42 AM (CST)

Our hearts ache and we have grown weary. Cameron has been sick now for 23 days. The doctors can't seem to figure out how to make him better.

His heart is still racing, which tells us he's in pain, he thrashes around in his bed, even while he is asleep, and his skin is still covered with a burning, itching rash.

He has what is called Graft Versus Host Disease, or GVHD. Bascially his body is fighting the new cell growth. This is expected, but Cam's case is extreme. GVHD can attack the skin, the gut, and the liver.

By his photos, you can clearly see that it has attacked his skin. And now, by the looks of what he is vomitting (looking much like what ends up in his diaper), the doctors say it has moved to his gut, as well.

So, they put him on yet another medication. This drug is supposed to help fight off GVHD. He is also (like all the other kids) on a drug that helps stimulate the growth of the new cells. So, now he is on a drug to help speed up growth, (which can heighten GVHD), and on a drug to help minimize GVHD. Tomorrow morning, the doctors are going to discuss taking him off both drugs, and letting the new cells grow at a slower, more "comfortale" pace.

It makes perfect sense to us, but we must not have the whole story. It must be more complicated than that. If it were that simple, they would have solved the problem days ago. They wouldn't have waited until now to bring it up, right? Tell me we're right.

Everything is a balancing act up here. Tylenol can bring down a fever, but too much can cause liver damage. Fluids can raise a dangerously low blood pressure, but too much can cause edema. Diuretics can help edema, but too much will cause kidney failure.

Everything seemed to be an exact science, until Day 0, Transplant Day. The chemotherapy and transplant process seem to be the same for most kids, but each child reacts in his or her own unique way. We've come to realize, that the doctors just START the plan, and the rest unfolds day by day.

We are on our hands and knees again tonight. Praying that God will guide the doctors in their decisions to help Cameron get better. Please Lord, hear our prayer!!!

Love Always, The Nicolls

Friday, January 17, 2003 at 10:32 PM (CST)

Douglas and I fell fast asleep in his little hospital bed last night. The next thing I know, I wake up in the middle of the night to find us sleeping in a pool of blood!! I mean, a POOL. Blood everywhere! His shirt soaked, my shirt soaked, and his legs and his diaper completely covered in blood. I was freaked.

In my state of panick, I blinked my eyes to make sure I was awake and not halucinating. I immediately saw that he was rolled up in his lines, and must have snapped one of them. So I clamped his central line to stop his blood from flowing out, and looked up and saw the bag of blood hanging from his pole. Sure enough, he broke the line that was feeding him his red blood cell transfusion. It was only then that I realized this wasn't his blood, it was somebody elses. Now, I'm really freaked. We're lying there, in a pool of somebody elses blood. Did you see the Godfather? The scene with the horse head in the bed? Okay, enough said...

The nurse came in and almost had a heart attack. By this time, I knew it wasn't Douglas' blood, so it was almost comical to see her reaction. So, we cleaned it up, and they cultured his line for infection, and tested his blood to see if he got enough of the transfusion. Everything should be just fine.

We have GREAT NEWS today...

Douglas is OFFICIALLY ENGRAFTED!!! Both our boys, officially engrafted!! Some parents have waited months for engraftment, and some have waited that long only to be crushed with the dreadful news that they have to put their child through the process all over again. I mention this, only to express how truly grateful we are, and how truly blessed we are. Now, we still wait for day 40 to find out if the cells that are growing are donor cells. Jan 29 for Douglas, and Feb 5 for Cameron. We pray every moment.

Cam is s-l-o-w-l-y improving. (We posted some pictures of him). We just have to keep believing that in time, he will "be back."

That's all for now. Thank you again for holding our hands as we walk through our journey. We love you!!

Love, The Nicolls

Thursday, January 16, 2003 at 03:52 PM (CST)

It is amazing how quickly things can change in a 24-hour period. Cameron is definately improving. He sleeps a lot, about 20 hours a day. His skin itches and burns, so they give him benadryl often, which gives him relief, but makes him sleepy. His mouth and throat are still causing him pain from the mucositis, so he's still on a pretty high dose of the continuous pain medication, which makes him sleepy, as well. He hasn't smiled or shown any interest in anything, not even his thumb!! He will watch an Elmo video, though, we're happy about that. Time will heal him - as long as he doesn't have another set back like the allergic reaction the other night.

Douglas is on his second day of being over the 500 count. Looks like tomorrow he will be officially engrafted (knock-on-wood). He's taken on a new look, the "steroid look." A doctor describes it as "stick figures with pot bellies."
It gets worse before it gets better(story of our life), I guess they grow black hair all over their face and head.
Once they get off all the meds, though, they start looking like their old selves again - after about a year!!

The doctors are talking about sending us home next week. They asked us today if we want them to go home on the same day, or one at a time. What a wonderful decision to have to make!! Most likely, we will take Douglas home first because he is in better health. We don't want Cam to leave until he is absolutely ready.

It's pretty scary thinking about caring for them on the "outside." All the nurses and doctors and monitors and medicines are here, we'll be working without a safety net out there. But, they won't let us stay here forever, we already asked.

Here's to better days, and the sun always rising!! Thank you for your prayers and supportive messages!!

Love, The Nicolls

P.S. We've updated the photos, by the way. I have a new "flash card reader" for my camera now. Don't ask me what it is, all I know is it works great!!!

Wednesday, January 15, 2003 at 10:50 AM (CST)

Today I am trying to muster up enough energy to update this journal. Through my tears, I will give you the update.

Cameron had a bad reaction to his TPN (IV nutrition). He swelled up like a balloon, had welts all over his body, his blood pressure dropped dangerously low, he was shaking uncontrollably, and he wasn't responding to us. When we saw one of the doctors from the PICU (Pediatric Intensive Care Unit) rush in, we knew we were in trouble.

We have never prayed so fast and furious in all our lives. We just kept saying, "please don't take him, PLEASE!!!"

After an hour or so, he recovered. His breathing settled back down, his welts went away, he seemed to be sleeping peacefully. Our nurse kept a watchful eye on him all night. She's become attached to little Cam, and when it was all said and done, she told us she was thinking, "no, not Cameron!! You are staying right here, little man, now this is unacceptable, lets go, get that blood pressure up!!"

I think we are starting to feel a little overwhelmed today. We are so tired, yet still have such a long way to go...

The good news is (and we always try to look for it), Cameron is "officially engrafted." They are talking about sending him home next week if they can wean him from the 14 different meds he's on. We'll see. We are NOT in a hurry.

Douglas, our little late and gentle bloomer is over 500 today. Two more days of this, and he will be officially engrafted. He is only on 4 meds right now, so he will be much easier to wean and get ready to go home. He's been off his pain medication for about a week now. Cameron, on the other hand, will be sent home on methadone so that his body doesn't suffer from withdrawl.

That's all for today. Take good care.

Love,

The Nicolls

Monday, January 13, 2003 at 09:51 PM (CST)

We will never ever take a smile for granted again. Ever...

Cameron smiled at us again for the first time yesterday. It was a gift. A small light of hope to ensure us that he will one day come out of this misery, and return to his silly, smiley, peek-a-boo self.

He's not letting us off the hook too easy, though, he only smiled once for me, once for dad, and once for Mama Jane - and that was it. Hopefully, tomorrow he will have more smiles for us. We celebrate even the smallest victories up here, and cherish them one by one.

Douglas is a maniac. He will make the nurses hold his hands while he jumps on the bed, blow them kisses, and demand "group hugs." He has his days and nights mixed up. Common occurance around here. Can you believe he's been in bed for 36 days? Crazy.

Douglas has taken the slow and safe road. Cam, on the other hand, chose the fast and furious. Both doing exceptionally well, however.

We had to say goodbye to Megan yesterday. She spent her 2 week mid-semester break with us. We loved having her here!! Douglas loves her so much, he wouldn't leave her alone. He would pull the blanket down and pat his hand on the bed beckoning her to get in, he would "style" her hair with his hands, suffocate her with his hugs, and never let her get any rest. It was painful to say goodbye. She told us she cried all the way from Durham to Chicago. The guy seated next to her asked her if she was scared. I thought that was so cute...

We are sad she's gone, but happy that Mama Jane is back!! She took a 2-week "break" and went home, but her heart never left. She is glad to be back with her babies, and we are so very glad to have her!! There is absolutely no way we could do this without her!!! Thank you, Mama Jane! And Dad for letting her go!!! And Brian for running the family business!!

We have new counts to watch now. Instead of looking only at the WBC (White Blood Cell) count, we now look at something called the ANC. Once the ANC is above 500 for 3 consecutive days, then they are considered "officially engrafted."

Cameron's ANC is 597
Douglas' ANC is 437

Things are looking really good!! Thank you for all the strength you pour into us everyday!!!

Love,

The Nicolls

Saturday, January 11, 2003 at 08:37 PM (CST)

WE FINALLY UPDATED THE PHOTO ALBUM - A TRIBUTE TO CAM...

What the heck are stem cells from cord blood, anyway???

Stem cells are tiny, immature cells that have not yet become whatever cells they are going to become. For example: brain cells, blood cells, lung cells, skin cells, liver cells, etc...

One day, a remarkable scientist found out that the blood left over in the umbilical cord of a delivered baby is enriched with these magical cells (stem cells). So, in just a few hospitals, they will ask the mother if they can have her umbilical cord blood after the baby is born. It is very expensive to test the mother's blood, test the baby's blood, and then store the blood in liquid nitrogen. That is why not all hospitals are doing it.

The stem cell transplant process goes like this: First get rid of the natural born cells (lacking the enzyme), through chemotherapy (9 days). Then, infuse stem cells into the body through an IV drip (about 15 minutes).

These cells will multiply (actually divide) and become all the cells that we mentioned above. These cells will have the enzyme that the children are lacking. Even though the children will continue to produce their God-given cells, the new cells will provide the exact amount of enzyme that they need for normal function. Forever.

To quote Dr. Kurtzberg, "they will provide a PERMANENT SOURCE OF ENZYME."

THIS is our miracle. We tried for months not to give up hope, and now we truly have HOPE!!!

Thank you all our friends and family, (and even strangers - who are no longer strangers) for sticking by us!! We love you!!!

Cameron's cell count went up to 1.0 from 0.6 and Douglas went up to 0.3 from 0.2. YEAH !!!!!!

The Nicolls

Thursday, January 09, 2003 at 06:25 PM (CST)

Cameron is improving. What a week he had!!! Whew...

His lungs are drying out, and his breathing is becoming a lot less labored. His rash is better (not gone), he hasn't had a fever all day (knock on wood), and his heart rate is back down to a livable number (130's 140's). We are so very grateful that his lungs didn't get worse before they got better.

They increased his continuous pain drip again today in order to manage the pain caused by his severe mucositis. They say his mucositis can last another 2 weeks. We hope not.

He is no where near "back to normal." He still needs blow-by oxygen, he still doesn't make eye contact, or communicate in anyway. He hasn't smiled or shown interest in anything in over a week, and he hasn't had anything to eat or drink in over a week. We just take each little success one day at a time.

Douglas is doing great!! They are convinced (no guarantees), that both kids are engrafting DONOR cells. Douglas is the best-case scenario, with low-grade fevers and slight rash, and Cameron is worst-case with ALL the symptoms, and then some...

Douglas is at .2, and Cam is .4!!! Hooray for engraftment!! And hooray for hope!!!!

Thank you all for writing in and giving us such wonderful words of encouragement and prayer.

We love you! God Bless!!

The Nicolls

Tuesday, January 07, 2003 at 11:12 PM (CST)

Cameron has pulmonary edema (soaking wet lungs). Not to be confused with fluid IN the lungs, that would be much worse. He is being treated for it, and is being watched very carefully by the WONDERFUL medical staff here on 5200. It makes us crazy to sit there and watch the little guy pull for every breath and not be able to do much for him. They say he could get better, or he could get worse. Once again, it's a waiting game.

Tonight he gave us another bit of a scare - he had an allergic reaction to the multi-vitamin in his TPN (IV nutrition). They immediately stopped the drip and gave him some benadryl to get rid of the hives. Moving forward, the TPN will no longer provide a mult-vitamin, he will need to take one daily by mouth.

When we first got here, Kyle Cottey, (God bless him), ended up in the PICU for a vitamin deficiency. I remember asking the doctor about GummiVites, (a gummy bear vitamin), just in case one of my kids had the allergic reaction (Douglas loves them). He told me, "it is so rare, you won't even need to worry about it." Funny...

Douglas is still doing just fine with a slight engraftment rash. Praise God.

We lost another cellmate. Keeshon (yes, Aunt Peg and Aunt Patty, the cute little guy that would ride his IV pole while his mom pushed him down the hallway). He was 14 months-old. Please say a prayer for his family.

Hopefully we will have better news about Cameron next time. Please say an extra prayer for him.

Love, The Nicolls

Monday, January 06, 2003 at 11:52 AM (CST)

Healthy lungs are like dry sponges. Cam has so much fluid retention, that his dry spongy lungs have soaked up the extra fluid, and are now a wet and heavy sponge. He has to work extra hard for each breath, so his respiratory is high, his heart rate is high, and his oxygen saturation is low.

He is on blow-by oxygen, and a protein med to help pull the fluid from the interstitials back into the cells, and an "industrial" dose of steroids to help "wring out his lungs" and flush away the fluid.

He is still in a lot of pain from the mucositis, still quivering from a high fever, and now has a burning and itchy rash. They increased his pain drip to 25mg per hour, (ref: Douglas maxed at 10 and is now being weaned to 8).

He is smothered in creams from his blotchy, red, bald head to his swollen, itchy feet. His eyes were swollen shut for a while, but much better now. He is on benedryl and resting peacefully right now.

He is defintely engrafting. His WBC today is .2

It's been hard for us to see Cam so miserable, please say a prayer that he pulls out soon.

Love to all!!!

The Nicolls

P.S. Douglas started his rash and fever yesterday!!

Saturday, January 04, 2003 at 10:53 AM (CST)

We are so very very blessed. Right now we are struggling between the power of positive thinking and trying not to get our hopes up. But here it is:

CELLS ARE GROWING IN BOTH DOUGLAS AND CAMERON!!!!!!!!!!

The goal was to wipe out the WBC with chemotherapy. This was done successfully. The counts were less than .1 for many days. As of today, both boys are at .1. The beginning of new growth. The average growth day is 25. Douglas is on day 15 and Cam on day 8. We are blessed.

We are holding our breath until day 40. Until then, when we will not know if the cells growing now are donor cells, or their own cells. If they are donor cells, the transplants will be successful. If they are their own cells, we will have to start all over and do it again.

We lost another cellmate again last night. Ryan was 18 years old, and was registered to attend Princeton in the fall. Please say a prayer for his heart-broken family he left behind.

LOVE TO ALL!!!!!!!!!!!!!!!!!

PRAY!!!!PRAY!!!!!!!!!PRAY!!!!!!!!!!!!

Love, The Nicolls

Thursday, January 02, 2003 at 10:20 PM (CST)

Well. Cameron's temperature is 105.7, his heart rate over 200, and he has a rash on his face and back. He's shaking, and his breathing is labored, however his respiratory system looks good. He is completely miserable, and we are worried sick - but not the doctors...

The hub hub is that they THINK he's engrafting. He has all the signs of new cells growing, but we won't know for a couple days. His cord blood was PACKED with stem cells, so Dr. Kurtzberg guessed that even though he is a week behind Douglas,(who is still breezing through), he would engraft BEFORE him. Now, this is all speculation, he could also have a horrible bacteria growing that they haven't yet detected...

Cam is only on day 6, so it is early. Average growth day is on day 25. So, again we play the waiting game!!

Pray, pray, pray!! GROW CELLS GROW!!!!!!!!!

Love, The Nicolls

Wednesday, January 01, 2003 at 08:34 PM (CST)

Happy New Year everyone!! Thank you for the uplifting, hopeful messages!! We do have a lot to be thankful for and hopeful for in the coming year...

Cameron is still not feeling well. His mucositis is just not fun. The doctors say it's just the beginning, and it will get worse before it gets better. It's "normal", though, so no one is worried - except us. They increased his morphine drip, hoping the pain relief would calm his heart rate, but it's still right up there in the 160's. His fever spiked again today to 103.5, so they did a chest x-ray to see what they could see. Everything looks great. They just chalk it up to one of the many side effects of chemo. Speaking of side effects, Cam lost his hair today. The nurse took his shirt off over his head, and hair flew everywhere!! (Pictures to come, still working on the camera thing).

Douglas is doing great!! We just pray he continues to do well.

Thank you again for your prayers - they're working!!!!!!111

Love, The Nicolls

Tuesday, December 31, 2002 at 12:30 AM (CST)

The doctors say both Douglas and Cameron are doing very well. Douglas is now on day 11 and Cam on day 4...

Cameron has been vomitting now for about 3 days, and his heart rate has been in the 160's. His normal heart rate is 110-115. They're not sure why. Today he started throwing up mucous. This is a sign that he has mucositis, a side effect from chemo. Lesions form on all the mucous membranes in the body. They first start forming internally, and then work their way to external membranes, (i.e. mouth, nose, and bottom). They say swallowing is more painful than the worst case of strep throat; and the open lesions cause nausia and vomitting. They will start his morphine drip tomorrow morning.

Douglas has been on his morphine drip since December 23, and it seems to be managing his mucositis pain pretty well.

We are sad to report we lost another cellmate tonight. Fourteen month-old Brittney died earlier this evening. Please say a prayer for her family. Her mom is only 20 years old and is, of course, having a really hard time.

Thank you all for checking in on the boys!! We love you and hope you have a wonderful New Year!!

Love, The Nicolls

Saturday, December 28, 2002 at 08:58 AM (CST)

Cameron had a very successful transplant day!!!

It's a sigh of relief to have both kids transplanted. We have put a "STOP" on the disease. Now we wait. We wait until about day 14-30 when the new cells begin to grow. We will know then, after the cells are tested, whether the new cells are donor cells or their own. If they're donor cells, then we will know it was a successful transplant.

Our biggest challenge right now is to keep the kids healthy. They live in a sterile environment here on 5200, but we found there are challenges beyond our control.

Our bodies create natural, healthy bacteria. With a normal immune system, this is not a problem. Without one, however, this bacteria is deadly. Both the boys are on several antiboitics, and continous IV pain medicine (narcotic) that drips into their veins 10cc's an hour.

Dr. Kurtzberg told us they will be completely "out of the woods" after one year. Next Christmas time we will have a HUGE celebration - it wil all be over...

Thank you for praying. Pray everyday that the donor cells grow, and that the kids stay healthy!!!

Thank you to all! We love you and miss you!!!

The Nicolls

P.S. My USB cord for my camera is suddenly broken. I have the cutest pictures to download!! Stand by...

Thursday, December 26, 2002 at 09:28 PM (CST)

As you guys probably expected, Cam is sick. They gave him something to stop the vomitting, but there's not much they can give him to take away the plain "yucky" way he feels.

Tonight is his last night of ATG. The pharmacy brought the meds up a little late today, so they started the drip a couple hours late. This means it will end around 2:30am,if all goes well, he will be "out of the woods" at around 4:30am.

Tomorrow is his transplant day!!! We are eager to get there, but, of course, worried about the reaction he will have with his new blood. Douglas' went off without a hitch -we are hopeful that Cam's will, too!!!

Douglas lost his hair on Christmas Day!!! It started falling out in chunks, so they recommended shaving it so that you he doesn't have to deal with itchy hair falling all around him for days and days. So we did. It will be available on video at 623 Orion Drive this summer!!!

He is doing unbelievably well. He's just about the only kid up here who's still eating. Chemo wipes out the appetite, so they feed the kids through the IV lines. We had a party in his room today. He danced to Bob Seger, ate pizza and popsicles, and high-fived all the nurses.

After Doug put Douglas to sleep, he went home and Mama Jane took shift. When she saw the light mysteriously go on in his room, she went in to see what was going on. Well, Douglas had turned on his light from the control on the bed rail, and beckoned her to put in a Blue's Clues video. After she finally got the one he wanted (after several failed attempts), he turned the light back off, pulled his cover up to his chin, put in his passie and watched the video. I think he has adapted pretty well to his new surroundings.

Well, that's all for now. Pray for a successful tomorrow!!!

We love you!!!!!!! Thank you for checking in and praying for the boys!!!!

Love, The Nicolls

Wednesday, December 25, 2002 at 02:00 AM (CST)

We are sad to report that our little Sanfilippo buddy, Kyle Cottey, passed away on the December 23rd. Our hearts ache for the Cottey Family, and our prayers are with them. If you wouldn't mind signing their guest book, it might just make a difference. Their address is www.caringbridge.org/wa/kyle
Thank you!

It's 3:30am and we have been watching the 24 continuous hours of A Christmas Story. We just keep watching it over and over and over...

Mostly, though, we are watching Cameron's monitor. His ATG drip ended at midnight, his heart rate is 206, blood pressure 70 over 20, and temp 103.5 with Tylenol. In the normal world, these would be dangerously high and dangerously low. In transplant world, it's what's expected, and no one panics until the second number on the blood pressure drops below 20. He was right on the fence, but it's been 3 hours now since the last drip and they think he has stabilized. By morning he will need a packed red blood cell transfusion. Just like Douglas did.

Night one of ATG is under our belt. They start his second drip tomorrow at 3pm and his last one on Thursday. His wonderful transplant day will be on FRIDAY!!

Doug is hilarious. He has learned to use the electronic temp gun, the blood pressure cuff and monitor, and the pulse-ox lead and monitor. He doesn't wait for the nurse to come in and take vitals, he does it every ten minutes or so on his own. He has learned to draw blood, change caps and flush lines. We call him Doctor Doug.

This may be a bumpy holiday season for us, but we truly believe that the new year will bring in many rewards. Come springtime, we will have 2 happy and healthy little boys ready to start living their new lives!!!

We would like to wish all of our wonderful, supportive family and friends a VERY MERRY CHRISTMAS!!! You have brought to us the true meaning of this holiday season by all your love and support!!!

Oh, it's starting again, I don't want to miss Ralphie in his pink bunny suit...

Love to all!!!

Monday, December 23, 2002 at 09:49 PM (CST)

I will never forget the day I was told about the fate of my two boys. I will never forget the words of the genetic specialists at Denver Children's Hospital. "There is no cure or treatment. Your children will never speak, will never be potty trained, will be mentally retarded, will be confined to a wheel chair, and will die." "We believe they will eventually find treatment, but probably not soon enough to save Douglas and Cameron..."

That was our reality for a while, and during that excruciating time, I will NEVER EVER FORGET my friends.

I will never forget everything you guys have done for me.

I will never forget all the times you came over just to give me a hug, all the meals you prepared, the times you sat in my bed with me reading about "Sanfilippo", the times you watched the kids and made Doug and I go out and have "date night", the countless and endless tears you have cried with me, and for me, the time I woke up from a nap, or came home from date night and my whole house was clean, laundry folded and a meal made for dinner, and so much more...

I am missing you guys dearly, and I am so blessed to have you.

...And when you get the choice, to sit it out or dannce..

DANCE!!!!!!!!!!!!!!!!!!!!!!!! I HOPE YOU, DANCE!!!!!!!!!!!

I LOVE YOU!!!!!!!

XXOO, Tracie

Saturday, December 21, 2002 at 11:46 PM (CST)

This is a wonderful time to be on 5200. The Hendrick Marrow Foundation brought all the kids lots of Christmas presents to unwrap, and made hand crafted baby blankets; post-transplant families are bringing home made Christmas cookies, and baked goods; and today we even had Christmas carolers in the hallway!! The infinite number of people who so graciously reach out to these kids is amazing!

Douglas is “back in the saddle” today! Lighting up the room with his smile, throwing his crayons across the room, and blowing all the nurses kisses!!

We can breathe again...

Cam is HATING that NG tube! He is fighting it every step of the way. He’s already pulled it out, so we’ve had to install it 3 times now. Poor little guy. He did not sleep the first 48 hours it was in, so we finally had to drug him with Benadryl at night to help him get some rest. The good news is he is done with his oral chemotherapy tonight at 10pm and they will pull the tube right after his dose. Hooray for Cam...

Did we mention he has broken his IV line twice now as well? Boy, it’s tough to confine him. All he wants to do is get down on the floor and crawl, and cruise the furniture. The tough thing is, the floor is considered unsanitary. Once anything touches the floor (passie, pillow, blanket, etc.), it must be thrown away or sanitized. So, the task is to keep Cam off the floor – not an easy one!!!

Besides being miserable with the ng tube up his nose and down his throat, Cam is doing okay so far. Christmas Eve will be his first night of ATG, the drug that will make him really sick. Kind of a bittersweet Christmas present for Cam.

His transplant day is December 27th, exactly one week from Douglas'. Keeping our eye on the ball...

We posted new photos!! Keep praying!! Love to all!!!

The Nicolls

Friday, December 20, 2002 at 03:41 PM (CST)

I swear you guys are awesome. We have so many messages in our in box with the most uplifting, supportive, and encouraging notes! Now, I feel I have to be strong to live up to everything you guys have said to me!!!

Yes, the guest book was down. I hope they've restored it.

Well today is the big TRANSPLANT DAY for Douglas!!! The medical staff told us it would be anti-climatic, but for us, it was anything but. It was very emotional and exciting. Happy and hopeful tears streamed down our face as we watched Douglas' new life drian down the IV and into his body. Father Pat came and gave Douglas a special blessing, and prayed for the new cells to grow in good health.

Today is day 0. Now it's a waiting game. The cells are expected to start growing anywhere from day 14 to day 30, and the side effects from the chemotherapy kick in about day 14. Bone pain, mouth sores and stomach aches are coming, we are just praying they are mild.

Thank you again for writing in, and keeping track of the boys. We love you all very much!!!

The Nicolls

Wednesday, December 18, 2002 at 11:53 PM (CST)

Cameron was admitted yesterday. They placed his NG tube last night. The first nurse failed to place it correctly and bloodied his nose. The second nurse placed it perfectly her first try. In addition to the mysterious toxoplasmosis, Cameron had contracted a stomach virus (very common) 2 weeks ago that gave him mild diarrhea. Dr. Kurtzberg explained to us that even though his virus is now negative, it could come back once the chemotherapy wipes out his immune system.

So, as soon as Cameron came onto the unit, The Nicoll Family became CONTACT ISOLATION patients. We have a big red sign on each of the kids’ doors (like WARNING NUCLEAR WASTE) that read CONTACT ISOLATION. This means that every single time we need to leave the room, we need to wear rubber gloves and a gown, and every time a doctor or a nurse comes in, they have to “suit up”. It’s horrible. It just adds to the already uncomfortable situation we are in. We are discouraged to sit in the family lounge, and when we use the bathroom on the unit we have to clean it. I felt like a leper when I went to do a load of laundry in the family kitchen.

Cam had his first dose of Chemotherapy today. Day –9.

Douglas is sick. Last night his blood pressure plummeted to 72 over 15. His heart rate went all the way up to 200 beats per minute. I could feel his body vibrating next to me because his heart was working so hard. His temp only spiked up to 102.3 (with Tylenol), but he was so hot I had to question the integrity of the thermometer. He was so pale, that he was almost a hugh of green. I thought for sure we would be in the PICU before morning. They checked his vitals every ten minutes through the night. We couldn’t keep our eyes off the monitors. We each wept silently as he lay there, not wanting to let each other know how scared we were in fear of scaring the other person. This morning they gave him a transfusion of packed red blood cells.

He is stabilized. He gets another dose of this drug today at 3pm and again tomorrow at 3pm. It drips for about 9 hours, and then the side effects kick in.

As you know, Doug lost his father on Father’s Day to a heart attack this year. Doug recalls that Cud was the same color and hooked up to the same machines as Douglas when he took his last breath just 6 months ago. Doug is having a hard time seeing his son like this, and it has triggered very painful memories of his father’s death. Please pray for Doug. He is very strong, but I know his pain runs deep.

Thank you all again for your prayers. We need them now more than ever!!!

Love, Tracie

Saturday, December 14, 2002 at 05:00 PM (CST)

DADDY'S HERE!!! Life is good when Doug is here. He gives me strength and comfort.

Today is a great day!!! Tommy Bennett (Sanfilippo) is on day 22 and is getting out next week. He never got sick!! Jill (Sanfilippo) day 23, is getting out next week. She had some of the side effects, but very minor. There are a lot of success stories up here - I just need to keep my eye on the ball and hope for the best...

Douglas gets his NG tube out tonight after his 10pm dose of chemotherapy!! Hooray for Douglas!! The first 16 doses of chemo are oral, so they insert the tube and leave it in for the first 4 days. It's a milestone...

Thank you for your words of encouragement!! Boy, you guys don't let me stay down for very long at all!! It was good to cry, but laughter is a lot more fun.

Love to all!!

Tracie

Friday, December 13, 2002 at 10:06 AM (CST)

Dear God, I know you watch over the children on 5200, but I just want to add another prayer for all the sick kids up here. I pray that you give them the strength to keep fighting, especially Brittney, Kyle and McKenzie.

Brittney's lungs filled up with blood, so she was rushed to the PICU. Kyle had a vitamin deficiency and was rushed to the PICU. McKenzie is 3 years old and has been here about 6 months. She is starting chemo again today for the 3rd time. Her first 2 transplants did not take. The doctors give her 10% chance of making it. WE GIVE HER 100% CHANCE!!!! She's so cute and cuddly. She knows everyone here - they call her the unit Princess...

Douglas is doing great. These are "the good days" "easy street" they say.

We're on day -7. On day -3 they give him a drug that will make him spike a fever and feel really sick for about 2 to 3 weeks. I can't stop crying today. I'm so scared for him. And for all the things that could go wrong.

It's gray and raining, and I guess it's just a good day to cry.

Douglas is in good spirits! He needs more Blues Clues videos!!

I love you all! Keep praying!!! Keep praying!!!

Love, Tracie

Wednesday, December 11, 2002 at 12:21 AM (CST)

When the phone rang this morning, we looked at eachother with eyes as wide as saucers. Were we going to be disappointed with another postponement, or relieved with a green light and an open bed?

When the nurse coordinator said the words, "they are ready for Douglas," my stomach flipped, and my head started spinning. Are we doing the right thing? Are we ready? What have we gotten ourselves into, and so on and so forth.

As I continued to pack the rest of his books and toys and videos, I watched Douglas run around the house like a wild turkey, hugging my mom on the couch, jumping on the bed, and playing peek-a-boo with Cam. In my sur-real state of mind, I thought, the hardest thing about taking this child to the hospital, is that he is a perfectly healthy and happy 2 year old. And we are taking him to a place that will make him sick as a dog, bring him close to death, and isolate him for a full year.

Needless to say, I rid myself of that thought, packed him up in the car, and drove him to his new home.

Douglas won't see the sky for at least 30 days. He is hooked up to an IV pole and is confined to his room, or the hallway of the wing. They originally told us 60 days, but without complications, he could be out in 30 - it's all based on his cell count after transplant.

The countdown has begun. Today is day negative 9, the first dose of chemotherapy. Transplant day is on day zero, and the next day is day one of the minimum 100 days we need to stay in Durham. It's 2am, he will start chemotherapy in 2 hours - I obviously can't sleep.

Doug's at home and can't sleep either. He is scheduled to fly out on the 19th, (the day before transplant), but I think he's going to catch a flight this weekend instead.

It's too hard being away at this crucial time. My heart breaks for him everytime he has to go back home - even though we're grateful that Waste Management has been so gracious to allow him the time he is here - it's still hard.

Everything is bittersweet for us. Everything...

Thank you again to everyone praying for us!! The Lord is listening!! We love you all so very much!!!

Friday, December 06, 2002 at 06:36 PM (CST)

GREAT NEWS at Clinic today...

90 percent chance Douglas will be admitted on Tuesday, December 10th - Cam's Birthday!!!!!! He will start his chemotherapy the next day, for 9 days - which means his big transplant day will be DECEMBER 20th!!!! We are so excited we can hardly breathe!!!

Cam's toxoplasmosis is negative; however, because we started the treatment, Dr. Kurtzberg wants us to finish it. The good news is it will not prolong him the 4 weeks we originally thought. We will know more on the status of Cam's admission date on Monday.

We are among the 1 million people in North Carolina without power. We never really understood the reprecutions of an ice storm, until now. The power went out Wednesday night, and the word is that it won't be back on in our apartment until Monday or Tuesday. Crazy.

There are only a few hotels and restaurants that were fortunate enough to maintain their electricity. We ventured out on Thursday morning, along with the rest of the community, looking for a warm place to stay (for what we thought would be) one night. We didn't understand the magnitude of the damage to the power lines at that point. We had no idea the $100 a night rate would turn into 4 or 5 nights, but we have no choice. It is what it is.

As you can imagine, there wasn't a vacant room from here all the way to the coast. Doug gave the manager of the Homewood Suites our sob story, and poof, he was kind enough to find us a room. We we're thankful, but it really wasn't until the next day that we realized how lucky and blessed we actually were to get a room. So many people are stranded at the airport, and in their dark, cold homes - even without hot water. Our nurse coordinator and her family ate dry Cheerios and peanut butter out of the jar for dinner last night. Of the few grocery stores that are open, they are sold out of milk, bread, lettuce, etc. Crazy.

There aren't any traffic lights working, there are hundreds of trees and powerlines on the roads, it's complete chaos. Jockeying for a position at the gas station was almost comical. I guess this storm will go down in history...

Thank you again for your heartfelt, encouraging notes in our guest book. We are so grateful to have all your support!!!

Love you all!!

Tracie & Doug

Wednesday, December 04, 2002 at 07:11 PM (CST)

Good news in Clinic today...

Douglas' bacteria was a contaminate on one of his lines. This means that there was a germ on the end of his cap on one of his central lines that was pulled into the test tube during the blood draw. It never entered his body, and therefore, he will not be set back. Dr. Kurtzberg said today that there will probably be a bed open on Sunday!! We are overwhelmed with excitement, at the same time trying to keep in check because we know it's not for sure...

Doug demanded a re-draw on the toxoplasmosis on Monday. We heard through the grape vine from one of the nurses,(who wasn't suppose to tell us yet), that they think it may be negative now. We haven't received the official word, but there may be a new hope on the horizon for our Cam! Boy, all this uncertainty is really hard to swallow for a control freak.

We found out it was my hard drive that was shot, so we paid a hundred bucks for a new one, and now I can access my e-mail and unload my camera, so don't forget to check the photos!! Things are really lookin' up!!

Thank you again for your kind thoughts and words! The only reason we are doing so well is because we have so many people praying for us. Our thanks defies words.

Monday, December 02, 2002 at 05:23 PM (CST)

Bad news at Clinic today...

Douglas has an infection. They don't know if it is a contaminate in one of his lines, or if it is growing inside of him. They drew labs again today and we will know the results in 3 days. If it's in his body, he will be treated with antibiotics for 10 days. He will be pushed back at least 2 weeks. If it was a contaminate, and this new draw comes back negative, then he is still on for the next available bed.

The bed Alicia was hoping would be for Douglas (written in the guest book) is being reserved for a child who had radiation today. We are hoping for the 9th.

Cameron has toxoplasmosis, the infection kids get from eating cat poop. Cat poop, of all things. We don't even like cats, never been around cats, and would never ever expose our young children to any sort of feline.

We are perplexed and very frustrated. His first labs that were drawn when we first got here were negative, and 30 days later, he pops positive for toxoplasmosis. Cat poop! Of all things!!!!!!!!!

This will be treated with 4 different antibiotics, 4 times per day, for 4 weeks. Yes, 4 weeks. Once a person contracts this infection, they will always carry the antibodies, like herpes for example. Therefore, Cameron is at risk of this infection returning once his immune system is wiped out after the chemotherapy. Recently one child has died from this infection during transplant, but they did not know the child had the infection - until her autopsy...

It just adds risk, but they say because they know he has it, they will do their best to prevent it. We just can't believe our ears.

Cameron won't see the transplant unit for at least another month.

My cell phone is on the fritz, I can't access my e-mail, and my computer is not accepting the new HP PhotoSmart software driver that I just waited 2 weeks to receive in the mail, so I can't unload my camera to share pictures, and I can't take anymore pictures because my camera is full of pictures that I don't want to delete. Am I going to lose my mind? Yes, probably. It's time for a drink.

Our home number is 919-309-7762.

Sunday, December 01, 2002 at 04:39 PM (CST)

Remember the first year of college when you went to the mailroom every single day without fail in hopes of getting a letter, and better yet...a package!!

Well that's how we feel when we visit the guest book. We just read it today after not checking it in a while (due to our move, and the operations), and we are so deeply touched by the kind and loving words written to our family. We will never be able to truly express how much your love and support has guided us through this journey.
________________________________________________

December first. This was the next "possible date" for a bed to open up. The day has come and gone, and no call. Looks like we will be waiting another week. The next possible date is December 9th - the day before Cameron's first birthday.

Cam is doing great. He's happy and healthy and is getting used to his central lines. He always has a smile on his face, and is learning to "hold his own" with his big brother.

Douglas is still quite apprehensive about his lines. He doesn't want anyone taking off his shirt or getting near his chest. Yesterday he developed a fever, and couldn't hold anything down. We spent all day at Rainbow Day (the day hospital at Duke Children's). They drew labs, hooked him up with an IV drip, and finally sent us home reassuring us that it didn't have anything to do with his lines - probably just a stomach bug. We are terrified of infection.

So now we play the waiting game. No baths, no rough-house, no t-ball, no Chuck E. Cheese or McDonald's Play Land. Our days are spent reading books, watching videos, and a daily visit to Duke Children's for a line flush and clean dressing.

The kids keep us in good spirits, and our faith, family and friends keep us strong. We love you all! Until I have more news...

Love, Tracie

2008 McQueen Drive
Durham, NC 27705

Friday, November 22, 2002 at 02:26 PM (CST)

I would say I'm a little down today. I know I should keep the bright future in mind and take whatever comes in the meantime with open arms, but I must admit I am a little disappointed.

We found out today that there aren't any beds available for the kids in the transplant wing. They are still scheduled for surgery on Tuesday to get their central lines and spinal tap. This means we have to bring them home post-op and wait until beds open up. The central lines are IV tubes that will be surgically sutured into their chests, and burrowed up through their veins toward their collar bones. This is how they will receive their chemotherapy, pain meds, antibiotics, and cord blood/stem cells. The docs will also use these lines to draw blood, which is done at 2am every single morning. The point-of-entry is at risk for infection. We will have to go to Duke Children's everyday to change the dressings. They can't get wet, so no baths (and if you know Douglas, you know how hard this is going to be), and we have to watch over them so that they do not tug on the lines, because even though they are sutured in, it is possible for them to pull them out - in which case they would have to back to the operating table.

Hopefully 2 beds will open up soon. Most likely not at the same time, so we will admit Douglas first as his disease has progressed more than Cam's. My heart aches and my throat swells when I write the words, but it is our reality.

Saturday, November 16, 2002 at 09:12 AM (CST)

Friday, November 15, 2002. Today we received approval from Blue Cross Blue Shield for the 1.2 million dollar procedure. We also learned from Dr. Kurtzberg that both Douglas and Cameron are suitable candidates for the transplant, and finally, today we signed the consent form.

Today is a day of celebration!

The boys will get their central lines and be admitted into the hospital on November 26, 2002. They will receive their first dose of chemoptherapy the next day, the Wednesday before Thanksgiving. Douglas will be transplanted at age 2-and-a-half and Cameron just before his one year birthday! They have a great chance for a promising future!! Please keep them in your prayers...

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