What we've been up to

Time sure does fly when you are having fun - and oh, what a lot of fun we have been having lately!

Cameron was discharged from hospital about a week ago and he has been doing very well since he came home.  He always does better in his own environment and this time is no exception.  He is eating and drinking well and trying his best to keep up with James.  He still isn't really allowed to leave the house and has to wear a mask if he does go anywhere - even while he is in the car, but that doesn't seem to bother him too much.  He is off all of  his medications and is as happy as ever.  He has even learnt some new words and can identify several colors.  We are so proud of him!!

I know that soon he will be feeling awful again, so I am really making the most of the time that he feels good and can be active and happy.  Our date to return to hospital for his second transplant hasn't been finalized yet, but should happen sometime during the week of the 9th of April.  In the mean time, he will go back to hospital next week to have ear tubes (Grommets) put in to try and resolve some of the fluid that he has in his ears most of the time, and he will have to have a GFR (Kidney Function) test done.  Both of these are out-patient procedures, so we should be home after a few hours.

James is doing a bit better since Cameron and I came home.  He clearly misses Cameron so much and a few times I have found them fast asleep holding hands and James will often go up to Cameron and stroke his head.  It's too cute to watch them together.  Of course they still squabble over toys and who gets mom and dad's attention - but they are two after all.

I have been trying to spend some one on one time with James and we have been having LOTS of fun together!  We spent the entire morning together last week at the mall, riding the little train and the carousel, followed by lunch at Chick-fil-A.  We had an absolute blast!  We even stopped at Build A Bear, where we made a special bear for Cameron.  We have also been to the park twice and an indoor play area.  It's been a privilege to spend such quality time with this little man, I missed him so much and it made my heart sore to see that cheeky grin of his again and hear him howl with laughter every time the train conductor blew his whistle.  I honestly can't wait until we can do these things as a family again. 

Sadly this week, we had to say goodbye to my mom as she had to return to Dubai.  She was an enormous help to all of us and we can't thank her enough for putting her life on hold for 3 months to come and take care of James and the household.  I miss her already!

Frank's mom has come over to lend a hand for the next month which we are so grateful for.  As I have said before, we are so blessed to have such loving families who are prepared to drop everything and travel all the way here to help us. 

Let's hope that the next two weeks are medically uneventful and we continue to enjoy our time at home together.  Here are a few photos of the fun that James and I have been having...

Ronald McDonald House (Day +20)

I have been a bit lazy about updating the blog lately, so this is going to be a bit of a "catch-up" post.

Let me start by saying that Cameron is doing VERY well!  We were discharged from hospital last Friday and we moved into the Ronald McDonald House.  Although it wasn't the same as being at home, it was lovely to have more space and more privacy!  Cameron immediately took off and explored every inch of the apartment, it was great to see him walking around - a little wobbily, but so happy!

We had originally planned to have James and my mom come and stay at the Ronald McDonald House with Cameron and I. Uunfortunately, James got sick AGAIN!  Nothing serious - just a cold, but we really can't have Cameron exposed to anything right now, so we decided not to let James come after all.

James has been getting sick a lot lately.  Since Cameron was admitted for this transplant, poor James has had strep throat, pink eye, a sinus infection and a cold.  We know that it is completely normal for a child to get sick often when they first start going to school - but it seems like James has been particularly susceptible to illness these last few weeks.  It has gotten to the point that Cameron's doctors have asked us to remove James from school, at least until Cameron has recovered from his second transplant.  Although he only goes to school 2 mornings a week, he seems to really enjoy it, so it's sad that he has to miss out on that now.  We are very fortunate that the firm that Frank works for has offered to provide us with a nanny two mornings a week, to help with James and get him out of the house a bit.  This has been a wonderful blessing and we are so grateful! 

Cameron had a follow up clinic appointment on Monday morning, and although his counts had dropped slightly and his nose was running a little , everything else looked great.  Of course, just as we start to relax, Cameron throws us a curved ball!  Just before midnight on Monday night he stirred next to me in bed, out of habit I felt his forehead and he was burning up with a fever!  I will never understand why fevers ALWAYS start either during the rush hour traffic period or in the middle of the night !  So, at midnight we headed to the emergancy room, which luckily is only 2 streets away for the Ronald McDonald House.  He was put on antibiotics, given some medicine to bring the fever down and they drew blood to see if they could find the cause of the fever.

All of his labs came back normal and by the next morning, Cameron was back to normal.  No fever, chatty and happy, as if nothing had happened.  I am sure this child just likes to keep us on our toes!  The doctors decided to keep Cameron an extra night, just to make sure that there was nothing wrong with him and so we are due to be discharged today.  We still have no idea what caused the fever, but his counts are on the way up again, so hopefully he will keep going from strength to strength!

As most of you know, I was fortunate enough to go home for the night this past weekend and spend some time with James and my mom.  I was also privileged to be able to shave my head in support of St. Baldricks.  Thank you so much to everyone who came out to support me on Sunday and a HUGE thank you to everyone who donated money to St Baldricks in honor of Cameron - I was able to more than double my original fundraising goal of $500 and thanks to all of you I raised $1,260 for lifesaving childhood cancer research!  The new hair style is going to take some getting used to - everytime I walk past my reflection, I jump -  I constantly think an escaped convict has broken into the house, and today I was called "sir" by the Starbucks person!

For those of you who are not on Facebook, click on the link to watch the video of me shaving my head:

http://www.youtube.com/watch?v=6N8hBmjUajA&feature=youtube_gdata_player

St. Baldricks

As some of you already know, I have decided to shave my head to raise money for the St Baldricks Foundation.  St. Baldricks is a fantastic organization that funds vital research for pediatric cancer.  Every year they hold a head shaving event to raise funds, and this year, I am honored to be part of it.  Weirdly, I am kind of excited about going bald, I just hope I don't have a strangely shaped or overly "bumpy" head.  Think of all the money I will save on shampoo and I won't have to worry about those retched grey hairs for a while!

I was looking at some statistics regarding childhood cancer (American Childhood Cancer Organization) and I was shocked when I read how many kids are diagnosed with cancer every year - 12,400 in the USA alone!!  And it's the number one disease related cause of death among children.  Those are terrifying statistics!  What's even more terrifying, is that it receives the least amount of research funding!!!  Personally, I find that appalling.  Unfortunately, I am a bit too low on energy to start a one man campaign, beating down the doors of the government and large cancer organizations, demanding that the give more money to pediatric cancer research - so instead, I'm shaving my head for St. Baldricks.  I'm doing it to raise money, raise awareness and most importantly (to me), I'm doing it to honor my brave BRAVE baby boy. 

If you would like to donate to St. Baldricks, you can click HERE or head over to www.stbaldricks.com.  There's still time to sign up to become a shavee or if you are too chicken would rather just come and watch me, I'll be at The Harp Irish Pub in Roswell on Sunday, March 11, 2012.

Day +11

Cameron has finally turned a corner and is doing wonderfully!  He went from a VERY sick child that I was deeply concerned about, to a Sprite guzzling, happy boy in a matter of days.  As soon as his white blood cells started to come back, his fever broke and that was the end of that!  No more fevers meant that he felt better overall and was awake more and the return of his white blood cells and anti-bodies meant that the mucositis could finally start healing.  He still has a little bit to go, and his immune system is still very suppressed, but he is through the worst of it and on a good road to recovery.  He is doing so well, in fact, that the doctors are talking about discharging him on Friday!  I was completely blown away when the told me that, I thought we would be here at least another week or two, but as long as his blood counts keep rising and nothing new occurs, we should be out of here by the end of the week.  They have started weening him off his Morphine and they have reduced his intravenous feeding (TPN) from 100% to 75% of his daily nutrition requirements and have already stopped giving him one of the antibiotics and one of the anti-fungal medicines.

We won't be going home just yet, but we will be checking into the Ronald McDonald House, a house near the hospital that families stay at if the have children in the hospital, but live too far away to travel home often.  We do not live that far away from the hospital (about a 40 minute drive with no traffic), but because of Cameron's fragile immune system, he needs to be as close to the hospital as possible for a little while, so we will be staying there for about a week until he is healthy enough to go home.  I am hoping that we will be able to have James come and stay with us at the Ronald McDonald House, I miss him so much!

 I am so relieved that we have gotten through the first transplant, and now I am ready to tackle the second one in a few weeks time.

Day +8

It's been quite a stressful few days!  Cameron has been the sickest that I have ever seen him, with fevers of 104 degrees Fahrenheit (40 degrees Celsius) that haven't been responding to medication that's meant to reduce them. His mucositis got worse and started to bleed so he has been drooling blood EVERYWHERE! 

After being on a strong antibiotic for several days, with no sign of improvement, the doctors decided to do a CT scan to see if there was a form of fungus, or something else that they might be able to treat, that has been the root cause of the fevers.  I found myself hoping that the CT scan would show something, because then there would be something to treat, but at the same time I hoped that the scan would be clear because these fungal infections terrify me.  The scan showed that there is some inflammation in his esophagus but the doctors are not sure if it's caused by a fungus, a bacteria, a type of Candida (Thrush) or if it's simply the mucositis.  He is being treated with a new anti-fungal medication just to be on the safe side, but at least there was no evidence of fungus in his lungs or any major infections.

They have also increased his morphine dose and that has definitely helped.  He even drank a small amount of formula last night and then woke up at 2am this morning and asked for water.  It's the first time in 7 days that he has swallowed anything - so it's a big step in the right direction.  His white blood cell counts are slowly starting to creep up, another good sign.  So, all things considered, he is improving and his body is doing what the doctors expected it to do.

Last week after being home with James, the doctor placed Cameron on isolation, in the event that I had brought some of James's germs into the hospital.  I was originally told that he would be on isolation for 5 days while they waited for the cultures to grow and that they were looking specifically for Adeno Virus (Adeno Virus can cause both Strep and Pink Eye, but usually also causes diarrhea and respiratory infection).  I agreed at the time, because I felt like Cameron would be too sick to leave his room anyway for the next 5 days and that I would rather be safe than sorry.  Well, yesterday marked the end of 5 days and I waited expectantly for them to take down the big yellow sticker posted on his door that identifies him as being isolated.  The nurse called the lab and his culture results were negative - but the stupid yellow sticker stayed put.  When I questioned the doctor about it, I was told that the isolation time was, in fact, 14 days - not 5 as I had originally been told!!  After a bit of convincing (AKA nagging), I managed to get the doctor to agree that he could leave his room - BUT it was on the condition that he wore a bright yellow gown that the nurses have to wear when they go into an isolated room and that he was not allowed to go into the playroom or touch anything at all.  As soon as he woke up from his nap, he started pointing at the door and shouting, so I got him wrapped in the enormous gown and took him for a little walk - naturally, he wanted to go into the playroom and a massive tantrum ensued.  Today the doctors changed shifts and I grabbed the opportunity to plead my case as to why I felt Cameron should be taken off isolation.  I must have been pretty convincing (or sounded pretty desperate), because it worked and the doctor has taken him off isolation!!  YAY!

I am so glad that we are starting to see an improvement in his condition, I know that he still has a lot of recovering to do, but I feel like we have finally turned a corner and he is on the mend - even the tantrums are a good sign!

Here are a few photos from the last week...

Taking a ANOTHER nap

Just chilling and watching "Blue One" (Blues Clues)

I decorated his hospital door with cute stickers I found on Amazon.com

James looking very cool in his new sunglasses from grandma!

Too cool for school!