NOT the greatest day! (Day +1)

Today started off pretty crappy in the early hours of this morning, and steadily went downhill! 

Cameron was due to get a blood transfusion at around 4am - why they can't wait a couple of hours until the child is awake is a mystery - I had explained to the nurse that he would most likely throw up if they tried to give him oral medications before his transfusion (he is always pre-medicated before he gets blood in case of an allergic reaction).  So, at 4am, just as I had predicted, the medication went in and came straight back out again - with a vengeance.  I am constantly amazed at how someone who only ingests a maximum of one ounce of formula a day and no other liquids or solid foods, can throw up so much.  Where on earth is it all coming from?

Sadly, while we were dealing with the throwing up etc, the "code blue" alarm went off in another room.  This always makes me feel immediately sick for the family who's child is in crisis.  All the nurses rushed to help with the alarm, and as I sat there with Cameron it all became real to me again, that code could be for my child one day.  All I could do was lie there with him, listening to the silence and inhaling him.  My sweet, sweet, sick child - and my heart broke all over again.

At 5am, the nurse woke me to tell me that Cameron had a fever and that she had called the doctor.  I know that after the amount of chemotherapy that Cameron just had, fevers are one of the things that are to be expected, but it doesn't make them any less frightening.  They drew blood cultures and started him on antibiotics.  Unfortunately, because the fever medication is oral and his nausea is so severe, he can't take anything to bring the fever down.

The rest of the day has been spent either throwing up or napping.  He's not up to playing at all today and has hardly spoken.  Its breaking my heart, but the worst part is that the doctor says it's going to get so much worse before he starts feeling better.  Apparently for the next 7 or 8 days they expect him to gradually feel worse as the mucositis becomes more severe and the fevers most likely continue.  He will only start feeling better after day 8 at the earliest. 

I am heading home tonight to see James and spend the weekend with him.  It's so hard to leave Cameron, but I know that I need to see James and I need to get some rest, so I'm forcing myself to go home.  Frank will be here with Cam for the weekend and we will switch over again on Sunday night. 

Transplant! (Day 0)

Finally, the transplant is DONE and it was all a bit of an anticlimax.  After waiting and worrying about it for months, I woke up this morning feeling positively sick to my stomach.  I don't know why I was so worried, I knew what to expect from the procedure, I knew that it was less exciting than a blood transfusion, but still I couldn't shake that nervous knot in my stomach.

Cameron spent the morning playing happily, we spent about an hour in the playroom, did a few laps and played with a ball until it was time for his pre-medication.  He got a large dose of anti-histamine and an anti-nausea medication, then settled into his new Big Boy Bed for some TV time while we waited for the transplant doctor.  They brought the stem cells into his room and I got to watch them defrost them and draw them into the syringe,  the doctor injected the stem cells into Cameron's central line and the whole procedure was over in about 3 minutes.  Cameron, true to form, was a super star.  He lay still while the doctor put the stem cells in and then, as the smell of the preservative started to circulate, he threw up once and then settled down for a nap.  His blood pressure, oxygen levels and heart rate are closely monitored for the rest of the day, in case he has a reaction to the preservative that is used to store the stem cells. 

We were warned about the smell of the preservative.  It smells like creamed corn that has gone off - sort of a sour smell.  Its not exactly revolting, but it's not that pleasant.  Apparently, our room well smell like that for a few days and so will Cameron - YUK!

So now we wait... and wait... and wait.  Cameron's body needs to take these new stem cells and make bone marrow and white blood cells.  At the moment he has no immune system, and won't have any anti-bodies for about 2-3 weeks.  This is the most crucial time, if he gets sick now, it could be fatal.  We are doing everything we can to keep him away from all germs and keep him healthy while his body recovers enough to fight any infections.  He has been put on an anti-biotic as a preventative measure and was supposed to go on an anti-fungal medication too, but his liver enzymes were a bit high, so they are holding off on the anti-fungal meds for now (which terrifies me!!).  The liver enzymes are showing a downward trend, so hopefully by Monday they will be back to normal and he can go on the medication.

I am desperately hoping that Cameron's counts recover quickly and that the rest of his stay in hospital is as uneventful as possible.

Day -2

Cameron has just finished his last dose of chemo for this round, thank goodness because it has really taken it's toll on him.  He has been experiencing severe nausea and diarrhea for the last couple of days and has been on IV nausea medications around the clock.  He has just about stopped eating and lost almost half a kilogram (1 pound) in a day, so the doctors have decided to start him on intravenous feeding.  Usually they would start with an NG feeding tube and feed him through that first due to the strain that the intravenous feeding can put on his liver.  However, with the amount that he is throwing up, it would be futile and traumatic to keep putting the feeding tube in every time he throws it up.  Hopefully this is a short term solution and he will start eating again once his counts recover.  He is also showing signs of mucositis (the ulceration of the digestive tract, stomach and mouth).  It can be VERY painful, but as usual, Cameron is being a trooper.  It breaks my heart to watch him getting so sick, especially after we have been home for so many weeks and he was doing so well.   

He has been so good about wearing his mask while he walks his laps around the nurses station, but even that is sometimes too much for him.  He is supposed to walk 10 laps a day, and some days he has only managed one before he is too tired and needs to go back to his room.  We have found other ways to get his exercise in and I'm letting him do as much as he can until he needs to rest again.  He LOVES weighing himself on the scale, so the nurses let him get on and off as many times as he likes, it's exercise and its very entertaining.  Another favorite game right now, is "throw the tissue in the trash".  We have gone through several boxes of tissues with this game, but it's another way of getting him out the bed and walking from one end of the room to the other and back again.

Thankfully the bathing every 6 hours is over!  He still gets bathed once a day in an oatmeal solution and then lathered up with thick lotion to protect his skin. 

Despite how crappy he feels, Cameron is as sweet and funny as ever.  He is such a happy little boy and I LOVE being able to spend so much time with him.  I recently quit smoking and I am so glad that I did - not only for his health but also because it has given me even more time with him each day.  We make everything we can into a game and laugh at each other constantly.  He teaches me so much everyday about how to be a better mommy, how to love and how to be brave!

I must say, as much as I am enjoying being here with Cameron, I am missing James so much.  He hasn't been feeling well at all and after throwing up for a few days, grandma took him to the pediatrician and we discovered that he has strep throat!  Strep is VERY contagious so both my mom and Frank had to be tested (they were both negative) and Cameron was treated with antibiotics as a precaution. Thank goodness James is on antibiotics now and should be fine by the weekend when I go home - I can't wait to snuggle with him!!

As promised, here are a few photos of Cameron and what we get up to here, never a dull moment....



Dr. Cam

Doing laps with his mask on!



Multi-tasking

Wearing his new Elmo pajama's!

Before we can give Cameron a bath he needs to have his central line covered in plastic zip-lock bags, so that the line doesn't get wet.  In case you couldn't tell by the bottom lip, he HATES it!



Day -6

And so the countdown to Cameron's transplant has begun. 

He was admitted yesterday to Egleston Children's Hospital and began his high dose chemo.  So far he has tolerated the chemo well and hasn't started throwing up yet.  The type of chemo that he is getting right now, requires him to be bathed every 6 hours, as the chemo comes out of his pores and can cause serious burns on his skin.  The bathing is not going so well!  Cameron is HATING it!  He has only been sponge bathed since he was diagnosed, as he has a central venous line (a soft tube inserted into his chest into a vein that leads to his heart) and it cant get wet.  So after almost 6 months of not being allowed to get wet at all, he is not so sure about this bathing thing - especially when he gets woken up at midnight, stripped down and put in the bath tub.  To make matters worse, this morning when we woke him up for the 6am bath, we discovered that there was no hot water.  After waiting for an hour for the engineering department to try to sort it out, we eventually decided that we would have to use hot water from the coffee machine to try to heat Cameron's bath water up.  We managed to get it to just above freezing, but he still had to have his bath.  Nightmare!  The water problem seems to be resolved now, so hopefully the next bath will be slightly better for him.

I had planned to go home and spend the weekend with James, but the poor little guy came down with a bad stomach bug and was sent home from school early because he started throwing up.  The throwing up continued through out last night, but seems to have settled a bit now.  Because of the risk of germs, I am not going to be able to go home now, until he is better - so the first time I will be able to get home is next Saturday (its the earliest that I can switch with Frank).  I hate being away from my kids when they aren't feeling well, but thank goodness my mom is here, so at least I know that James is in VERY capable and loving hands.

Other than that, things are pretty quiet here.  Cameron is spending a lot of time on the iPad and watching TV and of course, entertaining me with his antics and constant jabbering.

I will try to keep the blog updated as much as possible and will post some photos soon.

Test Results

Having completed 6 rounds of chemotherapy and with Cameron's first stem cell transplant just around the corner, last week began what was to be one of the longest weeks of our lives. The time had come to see if Cameron's little body had responded enough to the chemotherapy and if he was healthy enough to go through 2 stem cell transplants.  We began the week with the knowledge that if there hadn't been enough of a response to the chemo, it wouldn't necessarily be the end of the road for him, but it would make things a lot more difficult treatment wise and his prognosis wouldn't be very good at all.  We were hopeful that the massive amounts of chemotherapy would have done their job and wiped out Cameron's cancer, but in the back of our minds, we knew there was a possibility that he might still be sick.  The week was gruelling, with a test every day that he had to be sedated for, which among other things, meant no food from midnight - not ideal when we are doing everything we can to fatten him up.  But more gruelling than the daily tests, was waiting for the results. The first result to come in was from the bone scan which showed "improvement", we were hoping that it would show "resolved", but we can deal with improvement - right, one down.  The next test was the MIBG, this shows us if there are any areas in his body still infected with cancer cells, the results came back that although a lot of the cancer cells were gone, there were still active areas around his eyes, and then the most terrifying news of all - they thought they might have found a NEW area infected with cancer above his clavicle.  Naturally, I fell apart!  I think I have been holding it together for so long and finally I just couldn't anymore.  It didn't matter how many times our brilliant oncologist told me that we needed to wait for ALL of the test results to come back to get a picture of Cameron's progress - one result was not indicative of his response, I was still devastated, and had pretty much given up all hope. 

The following day, Cameron had a bone marrow aspiration and CT scan.  When Cameron was first diagnosed, his bone marrow was over 90% infected with cancer, after 2 rounds of chemo it had gone down to 75%.  We needed the bone marrow to be at 25% at the most in order to go ahead with the transplant.  And then finally the good news... Cameron's bone marrow results were NEGATIVE - there is no cancer in his bone marrow!  We were ecstatic!!!  The results of the CT were also good, and other than showing some sinus issues and a possible bronchial infection, it showed no signs of affected lymph nodes or organ involvement!  The new area of cancer that they saw on the MIBG scan is apparently very small, it was not seen on the CT scan and when reviewed by the doctor and a different radiologist, they felt that they couldn't see it.  They will radiate the area when they do the other radiation, just to be 100% sure.

Cameron also had a hearing test, to check if the chemotherapy had started causing hearing loss.  There was some minimal hearing loss in the left ear and the right ear was still within the normal range.  Although there has been some damage to both of the ears, and we expect more damage from the next round of chemo therapy - it's a small price to pay, and at the moment, his hearing is still fine for language development.

Cameron has been classed as a "very good partial response" and has been cleared for his stem cell transplant.  He will be admitted to Egleston Children's Hospital (CHOA) on Thursday, February 16 and will begin chemotherapy that day.  The transplant will occur on February 23 and then we will wait... and wait and wait.. until his counts come up enough for him to be allowed to go home.  I will do a more detailed post on the ins and outs of the transplant in a few days, right now we are savouring every moment that our sweet boy is at home with us.  He is eating well and has picked up over a kilogram (3 pounds).  He is happy and talking up a storm and, along with James, the absolute joy of our lives.

Our First Milestone

We finally reached our first milestone, the end of induction chemotherapy. Cameron was admitted on the 3rd of January to have his g-tube removed and have his final chemotherapy treatment. The g-tube site cleared up remarkably quickly and we had a much happier boy as a result.Whilst we will miss the utility of the tube, the infection risk of keeping it was too high, especially as he goes into transplant.

The final chemotherapy was administered as planned and after Cameron was discharged last Saturday, we slipped out of Scottish Rite for the last time (or so we thought). Last week Cameron seemed in high spirits and was enjoying being home with Mom, Jamie and Grandma.After a routine blood test on Thursday he was scheduled for a transfusion at the outpatient clinic on Friday. In the interim his temperature was on the rise and after his transfusion he was admitted straight from the clinic back into the familiar wards of Scottish Rite. Tests came back positive for RSV, a highly contagious respiratory virus, which Cameron of course caught as his immune system is at it lowest.

We were quickly moved from the cancer ward to a more isolated room on the third floor for the sake of the other kids. So here we sit, burning through yet more episodes of Blues Clues and Olivia interspersed with games and drawing.I guess the tedium is good practice for when we are in isolation after the transplant. Cameron has become a master at navigating through Moms iPad to find his favorite apps, it is amazing to see him develop skills in ways we never dreamed of as kids. He still has a bit to learn about sharing,I'm afraid that he is getting close to figuring out Angry Birds in which case I may never see the iPad again.

James is showing the strain of Cameron being away and his little life being disrupted. It is tough enough as an adult to grasp all that is happening, through the eyes of a child who does not have the capacity to see beyond his immediate situation, everything is completely overwhelming. Whenever Cameron is admitted James sees only one parent for an hour or two each day during the week, we try as much as possible to interact with him on the weekends but even that will decrease as Dad starts to work Saturdays. His anxiety is expressed through crying when we leave the room and more tantrums. Mom had to collect him from school after an hour this week because his teachers could not console him. Thankfully we have Granma staying with us and she has brought a crucial element of stability to his life.We are determined to do everything in our power to maintain as stable and loving environment as possible.

The immediate future is as busy as it is daunting. Over the next few weeks Cameron will have a battery of tests as an outpatient, after which Mom will be as adept at project management as any professional. These must all be completed and submitted for insurance review before he begins the bone marrow transplant which must begin in the next 5 to 7 weeks. Once he is admitted he will have a high dose of chemotherapy designed to destroy any remaining cancer, wait for a period of time and then have the stem cells that were harvested last year reintroduced to his body. The idea is that these cells will make their way to his bones to form bone marrow. What follows will be weeks of recovery in a sterile environment under constant medical care.

We say thank you again to the wonderful nurses, techs, doctors and support staff on the Aflac ward at CHOA Scottish Rite whose vocation is a true calling and who do their work with genuine compassion. Our gratitude also goes to family, friends and neighbors who's practical help and support has not waned and has sustained our family through chemotherapy to this first milestone.

Now that the craziness of the Christmas season has started to subside, I finally feel like I have a few minutes to post a long overdue update on our blog!

Cameron completed his 5th round of chemotherapy the week before Christmas. We were all on tender hooks as to whether he would be well enough to be home on Christmas day, luckily he was and we had a fantastic Christmas! Thanks to two cancer organizations, friends and family members, the boys had so many presents that they weren't even able to open them all on Christmas day! The grandma's joined forces and created a Christmas lunch like no other - we are still trying to find recipes to use up all the left overs. It was fantastic to have both sides of the family here for Christmas!

The day after Christmas, we had to take Cameron in to receive a platelet transfusion, and two days later he needed a red blood cell transfusion, the transfusions seemed to have given Cameron a massive burst of energy and he is as happy and chatty as ever.

As I mentioned in a previous post, Cameron's feeding tube has caused us nothing but problems since it was put in 3 months ago. We finally received a decision from the transplant team, and they have decided that the best thing to do is to remove the tube. Well, that was a monumental waste of time and money! On one hand, I can't wait for it to be removed, it has caused Cameron so much pain and suffering, getting infected every time his counts drop. On the other hand, I wish that it had worked for him, it really would have been the best way to get food into him during his transplants. There are alternative ways to feed him during transplant, they can insert a feeding tube through his nose, he had this type of tube as a baby and even at 2 months old he was able to pull it out himself! The other method is called TPN feeding which is done intravenously. The problem with that is that it puts a lot of strain on his liver, which will already be taking strain from all the chemo that he will receive.  He will be admitted tomorrow to have the surgery to remove the tube and will start his final round of chemotherapy on Wednesday.  I still can't believe that he is almost done with the first phase of his treatment!

Here are a couple of photos of how we keep ourselves entertained in the hospital.