Round 4

Cameron has completed his 4th round of treatment! I am so glad that one's over!  Cameron had a really rough time this round.

The week before Cameron was admitted, he had a severe ear infection, he was put on antibiotics and the infection cleared up and we were able to begin treatment on time.

The first week of treatment was relatively easy.  No major side effects or incidents, it just ticked by and Cameron and I spent our time playing in the Aflac playroom and watching Blues Clues for the 50 000th time.  He had some minor issues with the dressing on this central line (CVL), but the dressing had been changed twice that week and the skin underneath looked normal. As we approached the end of the first week, it looked as though Cameron's ear infection had flared up and he was started on the antibiotics again, but he was discharged by Friday with instructions for him to see our regular pediatrician the following day, for another dose of the antibiotic.  By the time we got to the pediatrician, I noticed that the skin under his central line was looking red and I could see what looked like a a bit of discharge.  The pediatrician took one look at it and sent us straight to the ER.  A central line goes through the chest, into the main artery - an infection can be very serious and if not caught in time, it can be life threatening.  Cameron was admitted back to hospital, after being home less than 24 hours - so much for our weekend break before the second week of treatment.

Cultures were taken from the line and from the surrounding skin, but thankfully nothing grew on the cultures and the skin settled down after a round of strong antibiotics.  Despite the drama, we were cleared to start his second week of treatment on time.

Cameron began his second week of treatment on Tuesday morning, he was given a large dose of morphine and put on a PCA but by the Tuesday afternoon his pain was already noticeable, and the PCA dose was increased.  At 3am on Wednesday morning, the nurse shook me awake and let me know that Cameron had not urinated in 13 hours and they felt that it was necessary to put in a catheter.  The catheter only got out a tiny amount of urine, so they decided to insert a Foley (like a catheter, but it stays in place and drains the bladder continuously).  The Foley did it's job and Cameron was able to empty his bladder. 

On Wednesday afternoon, the Foley fell out.  No problem, let's put in another one, right?  If only things were that easy!  The nurse tried to replace the Foley, but couldn't get it in, a second nurse tried, this time it went in to a point - but wouldn't come out.  When they finally got it out, we noticed that it was in fact defective and the little balloon at the end that it meant to keep it in place, had not completely deflated before it was removed.  If you are male and/or squeamish - you may want to stop reading now...  7 more attempts were made to insert a Foley, causing so much trauma that Cameron's urethra swelled shut.  Things were starting to get serious.  Cameron's bladder was extremely full, making it even more difficult to insert the Foley.  A nurse from the PICU was called in to try, as well as a nurse from the Rapid response Unit - but neither of them could get the Foley to go in.  As Cameron screamed in pain every time they tried to insert it, I was doing all I could to stop myself from losing it.

Finally, after 27 hours and 9 failed attempts, a urologist managed to insert a stent to open the urethra up enough to insert the Foley.  Once it was in, we guarded it with our lives to prevent a repeat of that ordeal. 

Despite the drama, Cameron continues to amaze us with his strength and tenacity!  He completed the treatment and was, once again, able to get the full dose of antibodies.  He was discharged on Sunday afternoon and is recovering well.

He is absolutely THRILLED to have his grandma here (as we all are) and has not left her side, he even insists on sleeping with her every night.  We can't wait to celebrate the boy's third birthday next week and count our blessings everyday that we get to spend together as a family.

A long year

Cameron completed his first week of the 4th cycle of antibody therapy and was released from Scottish Rite in time to catch the trunk or treat event with James at St Benedicts on Friday afternoon (a version of trick or treating from people's car trunks). By all accounts his first week went well and he had looked ready to go into the second week on all cylinders. That was until today when Nikki took him to our pediatrician for an antibiotic shot and pointed out a concern that she had about his central line. Our pediatrician sent her and Cameron  to the emergency room where he has been admitted with a suspected central line infection. Cultures have been drawn and we will know whether he can proceed with week two on Monday.

I have been playing the Mr Mom role with Jamie while Nikki and Cam have been at the hospital. It is amazing how much work goes into running a household with just one child, I honestly don't know how Nikki does it with two. I'm sure Jamie can't wait to get Mom back in charge, my school lunches are horrible. Thank you to our friend Leigh for helping with the school runs.

Two weeks ago we were very fortunate to be invited to Camp Sunshine which is held at Twin Lakes in Rutledge GA. We got to experience our first American camp as a family and to spend time with other families that share our journey. The boys absolutely loved all the activity, from learning to play Indian drums to catching their first fish, they were constantly busy. We were also able to take some time out with a massage and enjoyed walks through the tranquility of the camp's nature trails.

It was an opportunity to reflect on the year that has passed since Cameron was diagnosed. We took time to look back on how much our lives have changed, how Nikki and I have pushed through extreme moments that have stripped away all pretence and left us battered,scarred and tired. And still we marvel at the two boys we are so blessed to have in our lives. We revel in the new discoveries each makes every day, anxieties that consume our everyday lives fade in the joy of seeing them grow in body and spirit.

We are hoping that the course of anti-biotics that Cameron will receive over the next two days will be enough to prevent having to remove his central line and enable him to head back on Monday for week 2 of the current cycle which will be very hard on him. Please hold him and Nikki in your prayers.