In last week, I made the first mention of what has been happening in our household over the past couple of months. Oliver was diagnosed with cancer earlier this year. Here is how it happened:
Mumps to Cancer in 3 weeks, straight
Mid January we noticed Oliver’s one gland was swollen. It seemed like mumps, but just to be on the safe side I took him to our GP to have it looked at. The doctor suspected the same thing and warned me to expect some fever in the coming days. 10 days later I found myself back in the GP’s office, with no improvements. Because swollen glands are common indications of infection in the body, my GP subscribed a broad spectrum anti-biotic. I waited another couple of days and went straight back.
The doctor suggested that we see a surgeon to consider having the gland removed. We saw the surgeon he following morning and the op was scheduled for the day after. What I appreciated most about the surgeon was that he looked at me and admitted he may not be the right person for the job. With one look at the gland all thoughts of referring us disappeared.
This was also the first time the dreaded C-word was mentioned. I tried to be brave, but some times it’s simply impossible.
The following day the lymph node or gland was removed and sent to the pathologists for testing. Within a couple of days we had a preliminary diagnoses. Our world was turned upside down by the news that our 3 year old has cancer. Oliver surgeon made sure he gave us the most scientific term possible. When searching the term in google, there were minimal results and all information posted might as well have been written in Greek.
Looking back now, it was a blessing in disguise.
The diagnoses: Langerhans Cell Histiocytosis
The following week, we were told Oliver has Langerhans Cell Histiocytosis or LCH. Some research defined LCH as a rare cancer, other research suggests that it is an immune dysfunction. Essentially Oliver’s body started producing too many of these LCH cells and it started attacking his body. It is a complicated diagnoses in the sense that the cells aren’t found in one specific section of his body. The severity is determined by the number of parts or organ affected. Based on the number of organs, treatment is considered. LCH can affect organs such as skin, liver, spleen, lungs, bone marrow, and bones in the skull, etc.
The next couple of weeks were hectic. I tried to stay calm, I tried to not crying the “ugly” cry in front of my kids. Some of the hardest things were to trying to maintain some sort of routine. I had to reassure Logan that Oliver would be okay, I had to keep myself from falling apart. Being a mom is hard, but being a mom and not be able to fix things is probably one of the hardest things I have ever had to do.
We chatted to 2 different oncologists before additional tests – sonars, scans, bloods, bone marrow and x-rays – were done. The tests were naturally to see whether any of these LCH were found in any other sections of Oliver’s body. After waiting, what feels like, a good 3 months of my life, we were told the good news! Oliver’s other organs were clear. All tests that were done came back negative for the LCH cells.
None of Oliver’s other organs were affected! We were in seventh heaven. We could final breathe – our gratitude was unmeasurable. We had been praying for weeks, in between the tears and anger and uncertainty, our prayers had been answered.
The lymph node was the only organ that had LCH cells and these were removed when the node was removed. We were incredibly grateful!
If multiple organs had been affected, Oli would have needed some chemotherapy. Because only a single organ had been affected by these LCH cells, a mild treatment was used to treat Oli. In our case the doctor subscribed a high dosage of cortisone medication. Oliver drank cortisone for a total of 7 weeks.
Cortisone does a whole bunch of things to a person’s personality, it felt like we had a hyperactive, emotional pregnant (mood swings) person in the home. But compared with what could have been, I am not complaining.
As mentioned in my previous post, there is no clearly defined “end” in sight. Langerhans Cell Histiocytosis isn’t a word we can forget and move on. We will keep visiting our favourite paediatric oncologist at UNITAS and going for our follow ups. We will keep praying and trusting God that Oliver remains healthy. The future is still uncertain. Like it has always been.
All we have is today. Let’s enjoy it. Let’s make the best of every moment we have!