As the weeks slip by, we are now beginning to live a somewhat normal life, but also to get a glimpse of what the coming months and years will bring medically. Now we watch, wait and maintain. Gavin is officially out of active treatment and back in the care of the neuro-oncology team. It has been an adjustment leaving our friends in BMT and starting Gavin’s maintenance treatment with neuro-onc. There have been many things to consider for his health, many tests to do, and many adjustments to be made.

Gavin’s maintenance plan calls for him to be on Tamoxifen and Accutane. Tamoxifen is generally prescribed to breast-cancer patients, but has shown promise in treating brain tumours as well. Most of us know Accutane as a hard-core treatment for acne, but it is essentially a form of vitamin A which is also now being used for treatment of certain types of brain tumours. Obviously, neither of these drugs are ideal, each with their own set of negative side-effects. However, we are at the very least relieved that Gavin’s protocol does not call for him to stay on chemotherapy for the next year, as is so often the case.  We started Tamoxifen this week, and we have been crushing the tablets and giving them in a bit of yoghurt. So far, Gavin has shown no resistance to doing this and eats the yoghurt happily. Relief. We have yet to begin the Accutane and will be giving that in two-week rotations. He will need two weeks off between cycles to give him a break from the worst of the side-effects. As for his other medications, he still requires Amlodipine for high blood-pressure and Septra for prevention of lung infections. He will stay on Septra three days a week until June, at which time we will have reached the six month mark from the end of active treatment. We do not yet know how long he will require the Amlodipine for, as his blood-pressure is stable but still high for his age.

At the moment, we can administer some of Gavin’s meds through the NG tube, but I hope that this will soon be a thing of the past, although it will mean getting him to swallow two more meds. We recently visited the feeding assessment clinic at Bloorview to determine exactly what was happening with Gavin’s swallow reflex. I found the team there to be compassionate and very helpful, offering practical and useful advice. Unfortunately, the results were not all that I would have hoped. As I have mentioned before, in people with swallow issues, one of the biggest difficulties lies in drinking thin liquids. (e.g. water) Bean continues to drink thickened drinks, but has been making huge strides in eating. He underwent a swallow study test with x-ray at Bloorview, and we discovered that he can handle thin liquids in extremely small amounts, from a spoon, but has the potential to aspirate when drinking from a cup. He was a superstar during the test, agreeing to drink all sorts of textures flavoured with barium. Mmmm. I was disappointed to learn that he is still not able to handle thin liquids, but he is cleared for solid foods and “honey” consistency liquids. This is a neurological deficiency that can take an extremely long time to resolve, and I remain (as always!) hopeful that in future this will not pose a problem for him.

Of course, because of the fact that he must drink thickened liquids, it is difficult for him to drink the amount of fluids expected of him daily. In order to protect his kidneys, he must receive a litre or more of fluids a day. We cannot take his NG tube out until he can show that he is drinking a good amount. We are no longer giving him any formula, and he now eats three meals a day plus snacks. It has been hard work getting him to eat, and it is also hard work getting him to drink, but we are determined to do it. For the last week, we have been holding the water that we would normally give him through the tube until the evening, and have been constantly offering him fluids throughout the day. In this way, he is drinking between 500 and 700 ml a day, and we then give him a bit extra at night. Of course, the drawback with this system is that he is not yet fully toilet-trained, and so extra fluids mean late-night diaper changes for us!

I am encouraged with how much we’ve been able to get him to drink, and I know that we can ramp this up in the coming weeks. So, despite the naysayers, I think we will be bidding adieu to the NG tube soon. Speaking of goodbyes, we are now counting down the days until Gavin gets his central line taken out. I am looking forward to this day with excitement and dread. I don’t want Gavin to have to have another surgical procedure, but life will be SO much more pleasant without his CVL. We will no longer have to do daily line care, no more weekly dressing and cap changes, no more worry and fear that the line is blocked or infected. AND, he will be able to take normal baths, and go swimming again. Our appointment is for May 4th, just in time for that first chilly dip in the lake on May 2-4 weekend! Keeping fingers crossed for a smooth procedure.

Last week we went to audiology to follow up on Gav’s hearing. He flew through the test, showing no deficiency in the speech ranges, thankfully. He had lost interest by the end of the test and wasn’t responding to lower tones, but there was no concern about that. I know that at some point we still may see a loss, most likely in the higher frequencies, but for now, when I whisper in my baby’s ear, he hears me. I am so thankful for this.

The next big step is for Gav to get his MRI. He is meant to have these scans done every three months, but unfortunately, due to a backlog in MRI, he will not have this test until May 18th, almost four months from the last scan. I am apprehensive about this, but powerless to do anything about it, so we will wait patiently until our scan and try not to worry before then. I must believe that it will be clear. We cannot have any other result.

Normalcy has begun to return. Gavin is eating, and going to the cupboard to help himself to snacks. We are meeting friends for play-dates and going for walks in the neighbourhood. Week by week, he grows stronger and stronger physically and we no longer feel it necessary to hold his hand for every step he takes. Our clinic visits will now be monthly instead of weekly. As ever, we are lucky. We know it.


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