Anyone who has known our family and Ira has always had the same question since her surgery last year. I feel like it’s the question that everyone wants an answer to: how did you come to know about the brain tumour (तुम्हला कसं कळलं?)?
Remember the tremulousness that I talked about in my previous blog An Open Letter To Parents About Vigilant Parenting? Ira had extremely mild tremors in her left hand visible only when she lifted an object or held one in her left hand.
According to the National Cancer Institute, USA, cancer can give rise to many symptoms like skin changes, breast changes, weight gain or loss, hoarseness or cough, changes in bowel habits, problems in eating, frequent fever, nausea, etc. Most often these symptoms are also associated with some other problems or diseases. Hence hard to pinpoint and diagnose.
TIP: IF YOU NOTICE ANY UNUSUAL CHANGES IN YOUR BODY OR THOSE OF YOUR CHILD AND WHICH DON’T GO AWAY PLEASE SEE YOUR DOCTOR.
It can be anything even a tiny wound or a skin sore that refuses to heal.
Well, Ira had none of the symptoms classified in the list.
On the other hand, it was last year on 1st April that Ira’s class teacher Ms. Vinita expressed grave concern about her health. “She often trembles”, she said. “It may be due to heat but Ira also looks blanched at times”.
I voiced my concerns to Dr. Swatee Bapat over phone and she suggested that we get a routine hemogram and Vitamin B12 tests done. All the reports came back fine except the haemoglobin was bordering. The next step was to do the obvious- start her on Vitamin and Iron drops. Ira was only too happy with the Iron drops. She found it funny how Iron stained her tongue and teeth black and giggled mischievously when mumma asked her to open her mouth wide so that I could place the drops far back on the tongue. After this the tremors and the fear gradually shifted to some tiny nook at the back of my mind- slightly forgotten out of relief and hope.
Towards the end of April on a Friday Ira met with a terrible fall. It left her right hand swollen at the wrist, and though I initially feared that she has had a fracture by the evening of the fall she was able to move her wrist very well. Unfortunately Dr. Bapat was unavailable that weekend. When the swelling refused to subside we got an x-ray done and got an appointment with Dr. Nandkumar Kanade.
The fall resulted in a marginal increase in the tremors. It was only obvious that I take another opinion on the entire situation. Ira’s fall only propelled it and we sat in Dr. Kanade’s clinic while he analysed her playfully – tickling her hands and legs, asking her to walk & jump, making her talk and giving her objects to play with.
She was afraid. She sent me quick glances before obeying him looking for approval and some respite. Yet she did everything he asked her to do obediently without any expression of fear or anguish or boredom. “Are you not afraid of me?” he asked her. Probably she was within but didn’t say a word and quietly took the shrikand goli that he had offered.
Maybe because she knew mumma was going to take her to a doctor. Whenever we went out, visited some place or someone or a doctor I always primed her and prepared her mentally about what to expect even if she could barely understand certain matters. Before her routine vaccinations I often told her “Ira we have to go to a doctor. He’s going to make you lie down. Give you a prick. But it’s going to be ok. Mumma & dadu are going to be there and so on and so on.” Or “we are going to such and such park. It has swings and slides. Also you will have to eat the cut fruits that I am going to carry.” It helped tremendously. She cried less at the doctors’ and finished the fruits too.
Dr. Kanade advised us to see a neurologist and referred us to Dr. Umesh Kalane at Deenanath Mangeshkar Hospital. They put her through the same check-up. “Her walk is normal”. “Have you observed any tremors in left leg”? None. “She coordinated her legs very well even in water when I take her swimming”, I told him. “Is there anything to worry about”? I finally couldn’t help but ask him. “Doesn’t look like. But why don’t we do an MRI and EEG to rule out any other possibilities?” he said.
The next day and every day after that for 2.5 months we saw doctors, specialists, therapists and nurses.
A pre-anaesthesia check-up and some routine blood tests was followed by an MRI. As she slept unaware within the machine in the cold and dark MRI room, I stood by silently shedding tears, quietly promising her that it would be over soon and grappling for hope. None was found.
Whatever little of the EEG was done it showed normal brain functioning. The MRI reports on the other hand showed “some findings”. “It’s a tumour”, we were told by Neeta ma’m. “Is there a possibility of misplaced reports or misdiagnosis”, I had asked her. She had smiled only too sadly.
Certain incidents in life leave an impression on your mind, they remain ingrained in your memory and often replay vividly and you live them over and over again. This is probably why I can recount so much of the last year with every minute detail.
I absolutely don’t wish my blogs to be melodramatic, but hope that they send across a message through Ira’s journey. Here are a couple of things that I learnt on my way here:
- I know I have said this enough, but don’t ignore any signs and symptoms for a long time.
- Always take a second or third opinion or advice about the situation, preferably from specialists.
- There’s nothing scary about an MRI. It’s only a noisy and cold room where you are made to lie down on a bed that slides inside a machine and that captures images of your body parts due to magnetic resonance. Well, quite a crude scientific explanation of the principle!
- Try making videos or taking photos of unusual signs and symptoms if possible. It helps analyze the progress of the same.
- Mentally prepare your young ones before seeing a doctor. It really really helps. The same is applicable for the old members of the family. Isn’t it easier when you know what to expect?
- Do not panic. Easier to say than to be done. But anxiety clouds your mind and makes you non-receptive to your surroundings- making decisions becomes a confusion then.
In my next blog I’ll delve more into the tumour-part.
Stay fit & stay happy!
Dr. Swatee Bapat is a paediatrician. She runs a clinic near Quarter Gate, Camp, Pune. A dynamic person she believes in educating parents about childcare.
Dr. Nandkumar Kanade is a paediatrician. He is a senior consultant at Deenanath Mangeshkar Hospital and several others. He practices at Kanade Clinic in Navi Peth, Pune. He’s one of the best doctors that I have ever come across!
Dr. Umesh Kalane is a paediatric neurologist at Deenanath Mangeshkar Hospital, Pune.
Most importantly, all opinions are personal. Please do not construe them as medical advice. This blog does not contain any affiliate links and is written as a personal account for non-profit purposes.