A bump in the road

Chemo number four seemed to go off without a hitch, other than one throwing up incident, it was pretty much smooth sailing.  The type of chemo that he got this time had to be hooked up to him for 72 continuous hours, unfortunately this meant that he couldn't leave the ward at all for his full hospital stay.  Poor little guy was pretty bored, but we managed to entertain him with wagon rides around the ward and LOTS of toys that we had brought from home.  He was in great spirits when he came home and was eating and drinking normally almost immediately.

Just as we were starting to think this chemo stuff is getting easier... yes, you guessed it, he got a fever!  What would be considered a mild temperature for a normal child is considered an emergency for a child with cancer, so when Cameron started to feel a bit warm on Friday afternoon, I started to pack the hospital bags.

It started out as a mild fever, not really high enough for us to go directly to the ER but definitely something that needed to be watched.  I immediately became completely paranoid and started obsessively taking his temperature every 15 minutes, I just new something wasn't right.  And sure enough, just as the traffic hit rush hour, Cameron's temperature spiked and we had to get him to the emergency room.

Frank was amazing and offered to sit through the emergency room with him and spend the night so that I could go home and take care of James.  I readily agreed as I detest the ER!  Poor Frank sat through 5 hours in the ER before Cameron was transferred to the main hospital as there were no rooms available on the Cancer ward.  By Saturday morning, Cameron's fever was so high that they had to delay giving him a blood transfusion until the fever was under control.  He was finally given blood and once that was done, he was transferred to the cancer ward.  He was put into isolation while we waited for the blood test results to come back so that we could discover the cause of the fevers.  He has had a runny nose for about a month, so I was concerned that he might have flu or RSV.  So far all of his blood cultures have come back negative, we are still waiting for one more to come back, but as long as that one is negative, we should be out of isolation by tomorrow. 

It appears that the cause of the fever is an infection in the G Tube (feeding tube) site - AGAIN!  This thing is starting to be a real pain in the rear end!  According to the nurses, some kids get an infection in the G Tube site every time their white blood cell counts drop after chemo.  Cameron's counts had been at an impressive 2900 on Wednesday, but by Friday when he got to the ER they had dropped to 100 and this morning they were at 0,01.  No wonder the child's body cant fight the infection.  He is clearly in a lot of pain.  He tries to sleep sitting up in a sort of kneeling position, with his head rested against me.  It seems like one of the only ways that he can get comfortable.  I hate seeing him like this, feeling sore and yukky, but I am so thankful that it wasn't something worse.  He is on antibiotics and pain medication, so at least he is on the mend.  We will be stuck in hospital until his white blood cell count comes back up.

James is missing his brother again, but we have given him a photo of Cameron (which he carries everywhere and kisses constantly) and he has started sleeping with one of Cameron's teddy bears.  It seems to have helped at least a little bit and James doesn't seem as depressed this time.  Thank God for Frank, he is such an amazing daddy and husband, not only did he spend two nights at the hospital looking after Cameron, he got home today and immediately took James out for a day of fun to take his mind off Cameron being away again.  They visited the pet store and the park and even had pizza for dinner.  Lucky boy!

Enormous Blessings

Sometimes it takes a crisis to open up our eyes to how blessed we really are!  I always knew that we had good friends and a loving, supportive family; but since Cameron's diagnosis, I have realized just how amazing people are - and not just our friends and family - but complete strangers too!

I am awestruck with how many calls, emails and facebook messages we have received. My neighbors and friends have brought us meals, as have families from James' preschool. We have been given gas (petrol) cards to help with the expense of getting to the hospital; friends from the other side of the world have sent gifts for the boys whilst others have helped with fundraising and have donated their time, helping me with James and sitting with Cameron at the hospital. Several people have generously donated money to Cameron's medical care. A few weeks ago, I found a parcel that had been left for the boys on the driveway, no name was attached and my efforts to track down who had left it were futile.  This morning, I logged into my bank account and found that someone had made an anonymous donation.  These are just a few of the amazing things that incredible people have done to help us!  Thank you, from the bottom of our hearts - THANK YOU!  You all mean so much to us and we really appreciate your support through these tough times.

Happy Thanksgiving!

I know I have been a bad BAD blogger over the last couple of weeks, but as usual, we have been very busy - in a good way! 

Cameron has spent a record number of days at home, only having to go back to hospital for one night, right after his last round of chemotherapy, to deal with his terrible nausea and vomiting.  Other than that, we have been a happy little family, all together under one roof.  Things actually started to feel normal again.  That's one of the worst parts of this treatment, we just start getting used to being at home, Cameron starts eating again and feeling better, then just as we get comfortable - BAM it's chemo time again!

Over the last two weeks, we really made the most of having Cameron home - we laughed in the face of danger (from germs) and tried to take the boys out to do some fun activities.  We spent a day at the children's museum in Atlanta and the boys had an absolute blast.  There were so many fun and educational things for them to explore, it was a great day out.  We also took the twins to church and out for breakfast, which was a bit of a challenge, but nevertheless, another good day.  As we get closer to Christmas, the boys' social calendar is filling up!  We have two birthday parties coming up next month and 2 Christmas parties organised by 2 different cancer charities. 

Cameron is going into hospital today for his fourth round of chemotherapy and unfortunately he will be there over the Thanksgiving holiday weekend.  Frank and I have our schedule planned out, bags are packed and we are ready to do this again!  Hopefully it will be quiet and uneventful for Cameron - but I'll keep you all posted, promise!

Christmas Cards

My amazing friend, Leigh Plimmer has created the most beautiful Christmas Cards to sell in order to raise money for Cameron.  The cards were designed by Iris Maria Salazar, Wayne Martin kindly donated the printing and Amy at Creatively Invited donated the envelopes. 

The deatails are as follows:

The cards are packaged in sets of 5 and will be 5.5" x 4.25" with standard A2 sized envelopes in your choice of one of the designs shown.

$10 if they are picked up from Leigh or $15 if orderd through the mail. Please contact Leigh by email at lplimmer@att.net if you would like to order some cards.

All proceeds will go to Cameron's medical costs.

The Cards come in 3 different designs (aren't they gorgeous?)

An awesome weekend!

It's amazing the things that we take for granted as parents, snuggling in bed with the children on a cold winter morning, taking a stroll in a park, teaching our little ones to ride a tricycle, stealing sloppy wet kisses... Well this weekend we did ALL of that and I loved EVERY SECOND! It was so "normal"! It was one of the few weekends that Cameron has been home since he was diagnosed. We had so much fun doing everyday things that I used to take for granted, it's amazing how ones life can change in a split second. Let's face it, cancer SUCKS, but it has taught me some very important lessons, every day that we have with our children in a monumental blessing, it's the little things in life that make us happy, some things - like having a perfectly clean house -are just not THAT important, especially if I could be doing something fun with the kids. I have also learnt who my true friends are and how blessed I am to have such amazing people in my life!

Speaking of amazing friends, on Friday night, our friends Anni and Neil held a fundraiser for Cameron. What a fantastic night! They held a raffle for two great prizes, a Teddy Bear like the one that Cameron carries with him all the time, donated by my dear friend Carol Martin and a photography session with Germaine Vlok, who has taken all of our family photos and is a truely a phenomenal photographer!

$700 was raised for Cameron and we are so grateful to everyone who came to support us and of course to Anni and Niel for hosting, and for all the people who donated food, wine and prizes. Thank you all so much!

Three down, three to go

Wow! What a hectic couple of weeks we have had!
We celebrated the boys' second birthday with a small party, they had the BEST time and were thoroughly spoilt. It was really an excellent day and just what our family needed. It was such a joy to do something "normal" and watch James and Cameron playing with their friends and eating birthday cake, without a care in the world.

The next day, Halloween, was just as big of a hit as the birthday party. Although it took a bit of convincing to get James to wear his costume, once he was outside collecting his candy, he LOVED it. In fact, he loved it so much, that he insisted on going trick or treating 3 times!! Not for the candy, he just liked walking around the neighborhood like a big boy. Even though Cameron got tired, he did VERY well! He collected enough candy to rot several teeth!

We returned to the hospital on Thursday for Cameron's third round of chemotherapy.
This chemotherapy, which contains a drug called Cisplatin is an extremely strong dose of chemo and can cause pretty bad side effects, including kidney failure, hearing loss and severe nausea and vomiting. They kept a close eye on the kidney function and gave him an unbelievable amount of fluids to flush his system, of course this meant diaper changes every half hour. Fun! We won't know how much of Cameron's hearing has been effected for a few months, but we are hopeful that it will be minimal - either way, it's a small price to pay!
So far, the worst part of this chemo has been the vomiting. Poor Cameron can't keep anything down, even with all the anti-nausea medication that he is on.

He was discharged from hospital yesterday, but unfortunately, with all the throwing up, we have had to come back to hospital to get him on IV fluids and medication. I am keeping my fingers crossed that he won't need to be admitted and will be sent home once he has had sufficient fluids, but I have my bagged packed just in case.

Cake and Candy

Last week we celebrated Cameron and James birthday with a party at home. The cake was a hit and the boys had an awesome time with their friends. We sadly said goodbye to Granma who flew back to Cape Town on Monday, we really enjoyed having her stay with us - thanks for all your tireless help.

On Monday we went trick or treating and collected candy from the neighbors, the boys cowboy outfits were really cool.

On Thursday it was back to CHOA  for the third round of chemo, here Cameron is shaking it up with his buddies at music therapy.

Finally some GOOD news!

Last week, while Cameron was being treated in hospital for his G Tube infection, he had a bone scan to look at whether the first two rounds of chemotherapy had had any effect on the cancer that is in his bones, or if the disease had spread any further.  The results were better than the doctors had expected, Cameron's scan shows "significant improvement" in the bone cancer!  We are thrilled!  Of course we know it's early days and that Cameron still has a long road to travel and many more treatments to complete, but it's great to know that he is on the right path to recovery!

One of our biggest concerns, when Cameron got the infection around his G Tube, was that it would jeopardise his stem cell harvest.  Luckily, he was discharged from the hospital in time and he was able to have the harvest done yesterday.  He was hooked up to a machine that looked like something out of the movie Back To The Future, and began the 4 hour harvest process.  During the process, Cameron's heart rate started to drop a bit and then rise to a normal level, and then drop again.  Of course, in true Cameron style, he likes to keep his doctors on their toes, he had an EKG done to be sure that he wasn't in any danger, and it showed that his heart was fine.  The results of the harvest were fantastic, they needed to collect 12 million cells for his up coming transplant and they were able to get 23 million!



It's the boys' birthday this weekend and we are throwing them a little party, I am so pleased that Cameron is going to be home to enjoy it with James.  I am so excited about the party, you would swear it was MY birthday!  I promise to post photos as soon as I can so that you can see all of the festivities.

Infection

It feels like my blog posts keep starting the same way... "we are back in hospital"!

Last week, before his second round of chemo, Cameron had a G Tube (a feeding tube that is placed directly into the stomach) placed. We had gone back and forth about whether this was the right decision, the GI doctors had wanted to put a G Tube in when Cameron was 2 months old due to his lack of eating and low weight gain, but we fought it and eventually got him to drink his bottle and put on some weight. But, now the situation had changed, as Cameron goes through his intense chemotherapy protocol and eventually has his stem cell transplant, there is a chance that he will get sicker and less able to eat, we decided that the G Tube would be our "insurance policy". We would still encourage him to eat, but we could use the feeding tube as a back up on days when he didn't have much of an appetite. Of course, we were aware of the infection risks, but we didn't think that we would have to be readmitted so soon after his last discharge.

So here we are, back at CHOA. He has a rather sever and gross looking infection and ran a fever for a few days. We have been here for a total of 6 days so far and we are praying that he will be home for his and James's second birthday on Sunday. More importantly, we are praying that he is able to have his stem cell harvest that was scheduled for this week. His current infection can cause us to have to delay the stem cell harvest until after his next round of chemo. Its not the end of the world, but from a quality point of view, it would be better to harvest now, before his next chemotherapy.

We should have more of an idea of what our next steps will be, later today.

A quiet week...

So far it has been about as normal a week as one could hope for at our house. Cameron was discharged from hospital on Monday after his latest chemo dose was administered early that morning. This visit went a lot better than his first one, a bit more nausea but no fevers. He was also far more lively and even made a few new friends.

James is thrilled to have his brother home and the boys have been quick to pick up their usual routine of waking mom and dad up at the crack of dawn for their morning milk and cartoons. Mom has been great at administering Cameron's medicines and keeping the little man on his strict and complicated schedule - we have 4 pages of instructions on the refrigerator door to keep track of all of it. Grandma keeps the household running in an orderly fashion, which can be quite challenging with two energetic boys.

This week we need to keep a close eye on Cameron's blood counts which will drop and then stabilize and start climbing as we get closer to the weekend. The monitoring requires that his home care nurse draw blood samples every couple of days for analysis. Things will get really busy in a weeks time when he has his blood stem cells harvested. Once his counts are up they will be extracted and frozen to be transplanted back into his body in January. He will also have his bone marrow tested again to check on the effectiveness of the chemo therapy he has received to date.

Cameron was on top form last night, he had brought up most of his formula earlier in the evening so a dose of medicine was ordered to control his nausea. The medicine also happens to put Cameron in a very good mood so he was playing, singing and dancing well into the night - eventually Dad had to climb into the crib with him to get him settled, we finally fell asleep just before midnight, neither Cameron nor Dad have partied that hard in a very long time.

Today is day 3 of his second cycle and he seems to be tolerating the chemotherapy well so far. His first day was a bit tough because of the g-tube insertion (a g-tube is designed to allow feeding directly into the stomach when Cameron is not able to take in enough nutrition orally). The insertion required punching through some stomach muscles, so was quite painful for a while. The anticipated hair loss is setting in but Mom had the foresight to give the little man a #2 haircut so we have had a chance to get used to his new look, which he carries really well - a bit like Charlie Brown with a dash of Vin Diesel.

Chemo finishes on Monday so we should be out of here in no time, there is much to look forward to over the next two weeks - trick or treating, birthdays and lots of spoiling by Grandma. James got some practice at collecting candy at his schools trunk or treating event last night, I'm sure he will pass on his new skills to Cameron in no time.

Thank you everyone for your messages of encouragement and continuing support, although we sometimes feel overwhelmed we have never felt alone.

Photo Shoot

We were so fortunate to have our incredibly talented friend, Germaine, take the most beautiful photographs of Cameron before he lost his hair.  Here are a few of the photos that she took, please visit her website took look at the rest of Cameron's photos by clicking HERE. 

Thank you, Germaine, for capturing these precious moments for us!

Getting ready for chemo number 2!

I haven't updated the blog for a while, but as the saying goes "no news is good news". We have had a wonderful and most importantly, uneventful week at home with Cameron.

We were extremely blessed to have my mom stay with us for 3 weeks and I was so sad to say goodbye to her on Saturday. She was an enormous help while Cameron was in hospital and James adores her. Thank goodness she will be back in December and will stay for 3 months.

Luckily, Frank's mom has come over to help us for a few weeks, so it's a relief to know that James is with someone he loves and she is a great help too. We are so fortunate to have such great families that literally dropped everything to come over and help us!

Cameron had to go into hospital today for a blood and platelet transfusion, a long and boring process, but at least it is minimally invasive. He played for the first part with his new friend, Sabastian, and napped through the rest of it.

Tomorrow, he will have surgery to put in his feeding tube (G tube). Although he is eating well at the moment and seems to be responding appropriately to the appetite stimulant that he is on, the doctors feel that it would be safer to put the tube in, in case he loses his appetite and starts losing weight, especially when it comes time for his stem cell transplant in January. He will be admitted after his surgery and will start his second round of chemotherapy on Thursday. If all goes well, he should be out of hospital early next week.

Brotherly Love

We are so excited to have Cameron home with us and doing well! But no one is more excited than James. It's so amazing to see the bond that twins have and the last two days have really showed us how close these little guys really are.

While Cameron was in hospital, James would look for him. He would search each room every morning and when he came home from preschool. Although he seemed to be adjusting, it was so obvious that he missed his brother.

Yesterday, James took his role as "big" brother very seriously. After riding in their wagon (grandma pulling them up and down the deck), James climbed out to go and get his lunch. He immediately tried to pick Cameron up and take him out of the wagon, because Cameron is not quite strong enough to get himself out yet. It was the sweetest thing I have ever seen. Then, while Cameron was drinking his bottle, James stood next to him and gently stroked his hair and chatted to him. There has been NO fighting over toys, in fact, James brought Cameron his favorite toy to play with!

I am sure they will return to normal soon and starting fighting over everything, but for now I am really enjoying the peace and love that we have in our house.

We are very excited to have our dear friend and amazing photographer, Germaine Vlok (www.germainevlok.com)coming to take some photos of Cameron today before he completely loses his hair. It started falling out last night, which makes me very sad, but at least we know the chemo is working.

I will post some of the photos of our beautiful boy soon!

Guess who came home today :)

Our weekend

We are winding down a rollacoaster of a weekend. Cameron was home just one night last week when he had to return to CHOA Scottish Rite with fevers. We had hoped to have him home again in no time but his fevers seem to recur and with his white blood cell count still so low his doctors have kept him as an inpatient while he continues to receive IV antibiotics and platelets today.

The side effects of his first chemo cycle are distressing for him and ourselves as parents, as is his inability to keep much food and formula down. The nurses have been fantastic in reassuring us that these responses are typical for chemo patients but it is still tough to watch him go through it.

We brought James down to the hospital this afternoon when Nikki & I switched shifts. It is amazing to see things through a childs eyes, to us an elevator ride is a way to avoid stairs - to James it's this really cool room that has tons of things to press and then opens into a totally different place - he always squeals with delight when the doors open. He and Cameron had a good time together although we were careful not to let James too close and limited contact to hand touching.

We have started to develop a routine to our hospital visits, the bag is ready and waiting with the overnight essentials and last nights left over dinner is packed in a container to provide an escape from the hospital canteen. To those of you who have provided and continue to provide meals thank you so much. Good nutrition is the first casualty of crisis and we would no doubt have suffered the consequences but for your efforts.

We are hoping that the latest bout of fevers is in response to the platelets Cameron received this afternoon, if his labs come back infection free he may just get home tomorrow.

We're bbbbaaaaaaaccccckkkkkkk!

Cameron had a wonderful day at home, unfortunately it was a bit short lived.

Before we were discharged from the hospital, we were told multiple times that if Cameron started running a fever, we needed to head straight to the Emergancy Room because his white blood cell count was extremely low and a fever could indicate a blood infection - which could be fatal. So, after taking his temperature at least once an hour all day (Paranoid? Me? NEVER!), he finally spiked a fever at around 5pm. I immediately called the hospital and we were told to make our way over to the ER to have him evaluated.

Once we arrived, he immediately had blood drawn and was placed on antibiotics. We are still waiting for the results of the blood cultures to see if he does infact have an infection. He had another fever at around 5am today, so we won't be discharged until he has been fever free for at least 24 hours and his white blood cell count shows signs of improvement.

Luckily, Cameron is a real little trooper, he was very excited to go for a little walk this morning to see the turtles and fish and flirted with all the nurses on the ward, such a ladies man!

We're Home!!

After 2 and a half loooonnnggg weeks in the hospital, Cameron was finally discharged yesterday!

He was so happy to be home and immediately found all his toys and started playing. Although the doctors said that it would be a number of weeks before he could walk again, Cameron proved them wrong once again! He was up and walking the moment we walked into the house. He is still a bit wobbly and sways like a little drunken sailor, but he is determined to walk around and rebuild the muscles that he hasn't used in a while.

He is eating really well too and enjoyed a bacon breakfast made by his granny this morning, followed by an entire smoothy, and best of all, he kept it all down!

Due to the chemo, his immune system is VERY low right now, so we kept James home from preschool today, just to be safe. James is in his element now that his brother is home and has even been sharing his favorite toys with Cameron.

We are so thrilled to have our little family all back under the same roof, even if it is just for a few days until Cameron's next chemo.

A busy day

Today Cameron had an MRI of his brain and spine which thankfully came back clear. He had to fast from midnight until 5pm, so you can imagine how hungry the little guy was when he finally got back to his room, he downed a bottle of formula in no time, and fell asleep watching tv.

Nikki spent much of the day driving around Atlanta doing admin while Grandma oversaw the carpet cleaning which was graciously donated by Chemdry. James had a great day with his buddy Braiden. We finished off a busy day with a training session on Cameron's ongoing medical care - its a little intimidating.

As much as Cameron's medical team would like to see him come home tomorrow, they will only discharge him once they are 100% satisfied that his fevers are under control and that his home medications can be effectively administered and tolerated, so he may be here a little longer.

Our family has continued to receive such warm support from friends and neighbors, once again we thank you all.

Cameron had a great night

Cameron finally had a good nights sleep. He slept through from 5pm last night through 8am this morning with only a few disruptions while his nurses took vitals and made sure he was comfortable. This is good news because it means that his pain is being controlled and presumably the chemotherapy is having an effect.

He finished his 5th day of chemo a few hours ago which is the end of cycle one, unfortunately he is still having fevers so needs to be closely monitored to make sure they are not infection related. If all goes well we hope to have him home on Tuesday.

Granma is doing a great job of supervising the preparations for his home coming - I dare any germ to try and get within a 100 yards of the house. The chemotherapy has suppressed Cameron's immune system considerably so we have to be super diligent about protecting him. A fever in his case is considered an emergency and will most likely require that he be brought in to the ER. Our training on how to manage his home care and health issues starts tommorrow.

We went for a wagon ride around the ward today just to get a change of scenery - Ted (his Teddy bear) came with and the nurses all got a good wave. The rest of the day has been devoted to episodes of Olivia.

Yay - a giant balloon has just arrived from the gift shop - let's see if it will lift Ted.

An Explaination

We have been asked how this all happened and to be honest we are still in a daze and trying to understand it ourselves. We live in a fog of fear, confusion and denial and grab onto pieces of information and test results as they come to us. This is an effort to pass on what we know or at least what we think we know.

Three weeks ago Cameron started running a fever and so Nikki took him to see his pediatrician. The sad thing about this disease is that it's symptoms mimic a number of childhood illnesses like viruses, ear infections and the like. Cameron and James had started play school two days a week and we assumed he had caught something that he had not previously been exposed to. He was diagnosed as having a viral throat infection.

The following week, Nikki took him to a checkup at the ENT and Cameron had an ear infection. He was put on antibiotics and we continued to monitor him. His fever continued, and we continued to treat him symptomatically.

On Monday 12th Sep Nikki noticed that Cameron's eye looked slightly swollen, she took him back to see his pediatrician who sent him to the ER at CHOA where he was treated with intraveneous antibiotics and discharged on Wednesday. On Thursday morning his fever returned and he was not able to stand so he want back to his pediatrician and straight back to the ER.

An MRI of his pelvis indicated a severe bone infection so be began a regimen of powerful antibiotics. Further tests by CHOA found a tumor in his adrenal gland which combined with his symptoms led to the diagnosis of Neuroblastoma Cancer.

Since his initial diagnosis, Cameron has had several more CT scans and MRIs. The cancer appears to have spread to the bones in his scull, arms, legs, pelvis, ribs and vertabrae as well as to his bone marrow. Thankfully, it doesn't appear that any of his organs have been effected at this stage.

Cameron has started receiving chemotherapy and will complete a series of 6 chemos, a stem cell transplant and radiation.

Friday pm update

Cameron has been comfortable for most of today, thanks to Mom insisting on him having a break from scans (and the associated sedation).He is now on day 3 of 5 of his first chemotherapy cycle and has had a related drop in blood count so is receiving a blood transfusion right now. Fortunately he seems to have found his appetite and demolished a bottle of formulae.

James and Grandma visited today, Jamie ran past Mom and gave Cameron the loudest "HI" that he could. They sat in Cameron's crib and watched an episode of Olivia together - for some reason Olivias dog seems to get the biggest cheers. James has no aversion to hospital food and was happy to help Cameron out.

Dad has taken the afternoon and night shift so Mom can get some rest.

Thank you to all of you who have been so generous and kind, we really appreciate every one of you that have reached out to support Cameron and our family.

Donations

Several very generous people have asked us how they can make donations towards Cameron's medical costs. We have set up a special bank account at Wells Fargo Bank and checks made to Nicolette Durban-Jackson can be deposited into that account (or mailed to us if you prefer). We have also set up a Paypal account and if you click on the link on the right of the page, you can donate using your credit card (isn't technology amazing?).

Cameron's Journey

On September 17, 2011, our darling son Cameron was diagnosed with stage 4 Neuroblastoma Cancer.  A rare and aggressive childhood cancer that is usually only detected around 2 years of age, after the cancer has already caused considerable damage.

Frank and I wanted to find an easier way to keep all of our friends and family updated on Cameron's progress, so this is Cameron's journey in his battle against this disease.