“THE MASK… we had radiation planning today (28/6/2016), Dylan has a custom made ‘bed’ and a super freaky mask that will help hold him in position during his radiation treatments. Seriously I am honored to be traveling this life with this kid, not a single complaint or moan, he’s just doing what needs to be done to get well, the kids got tenacity and totally rocking this journey!!! ”
Radiation – I’ve been skirting around this topic for a couple of weeks now. I wasn’t quite sure how to put the experience into words. It was worse than we imagined. It made the diagnoses real. The long term side effects are frightening….. Maybe these are the reason I found it difficult to write about it.
Sometimes it’s not the message but the way it is delivered that is painful.
So as you may know not all tumors are malignant (cancer), so when you have a tumor removed it is tested to see whether or not it is malignant. Obviously the results dictate much of how your forward journey into treatment will unfold. In my view, the way this news, your results are delivered to you is pretty important. Continue reading “Shoot the Messenger”→
This day a year ago when Dylan had surgery Life was transformed into something more.
We were remarkably calm considering the situation. Due to the fact that it was a long weekend everything seemed quite calm and quiet in the hospital, the Saturday we went into emergence flowed smoothly, we were seen promptly by a lovely doctor who was originally from Cape Town, questions followed, a cannula was inserted, blood was taken, and then the resident surgeon who was called in, an amazing Syrian doctor who throughout Dylan’s hospital stay visited him daily, got things moving smoothly and efficiently, after an examination, questions and a look at the first MRI we were taken to get another MRI, there was no one else in the medical imaging department, so the process to have the hour long MRI was quick, a few spots on Dylan’s head were shaved and little markers were placed on his head, he had the MRI and things from that point went quickly and are blurry. Essentially taking him in to emergency that day was the best thing we did. Continue reading “That Day a year ago”→
It’s hard to believe we have Dylan’s three month check up coming up, exactly a year after his first visit to the doctor, with symptoms of headaches and vomiting, really thinking nothing serious was wrong. The first thing the doctor had said when seeing Dylan was “maybe his fringe is too long” , you know maybe his hair was in his face making him get headaches….. Boy was that far from the reality.
Six months ago, brain surgery had been done and dusted, 30 sessions of radiation had been completed and this was the time to recover and to prep for chemotherapy. They tell you that it’s a few weeks break in between treatment. However it’s not really a break. During this time Dylan required a number of test and procedures, including two separate surgeries, one being insertion of a double port and the other being the insertion of a PEG (Percutaneous Endoscopic Gastrostomy) – an abdominal feeding tube. Continue reading “Another Layer”→
Last night as I held the vomit bag in front of Dylan’s mouth, tissues in my other hand, simultaneously cradling his head on my belly, for the second time that day, I thought about the vast contrasts in this journey. He is better yet still sick. In fact he is in worse shape than he was a year ago, and if truth be told a year ago if left untreated he would of most likely been dead today, if not dead most definitely been in a much worse reality.
I had a little meltdown this morning when the dietician and TPN nurse came to talk about the nutrition plan for Dylan.
It’s not a new feeling, the slow build up of emotions, bubbling just below the surface, the heavy tightening of my chest, the solid lump in my throat, then the swelling pools of tears forming in my eyes and poof it all comes undone. Continue reading “Sifting through the feeling”→
Tonight I sit here swallowed in silence but surrounded by music …. Bells dinging, pumps humming, alarms ringing, babies crying, chatter at different tones and pitches. I sit here in the isolated songs filled with such diverse emotions. Continue reading “Not yet written”→