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A headache and leg pain this morning. Ugh. 😞
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A headache and leg pain this morning. Ugh. 😞
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Well. We said goodbye to Dr. Goldman today. He’s been a great doctor and was a wonderful asset to Lurie Children’s Hospital and he will be greatly missed!! That part aside, Adler has stopped treatment. Not because he’s done with the 26 month trial but because it wasn’t successful. It’s disappointing and we felt very odd leaving with out pills or a concrete plan of the next time treatment. He will be closely monitored with definite concern from Dr. Goldman while on this “break” with MRI’s every other month and under the care of his new doctor, who we also met today, and we liked her. She was ready to be tagged in today! And, I will watching him too and any changes I will definitely be in touch with his team. It’s a watch and wait process now. Which is hard to even digest at this moment. Another time where the sightlines shift a little. Focus and direction changes make things look a little different. Again. We spent nearly 2 hours with the palliative care team discussing his pain and the chronic pain team will reach out to us soon to aide in his continued care. They will work with us on a pain management plan as well. The focus here is quality of life. On or off treatment we just want him comfortable and to resemble some form of a “normal” 11 year old boy. He just happens to have cancer and chronic pain, one caused by the other. And there is no magic pill as they said to fix or cure his cancer or his pain. That has been made unfortunately clear on this trial. There are options for the future and that was also made clear for both treatment and pain management which we will hold on to, tightly as we go ahead. However long this “break” is we are going to try our hardest to enjoy life and continue to surround him with even more love and light as we just keep going……keep going always!!! Bold As Love and yes, FUCK CANCER!!!!!! 🅰️🌈⚓💙☯️
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And in classic Adler fashion, upon waiting for Aaron to pick us up, he almost threw up and nearly fainted. Yeah. That was fun. Rushed him to a bench to sit down where I had him take down his mask and take deep breaths of the Happy Tummy oil that I rubbed on his hands. I unzipped his coat and had him lean back. He had absolutely no color in his face and at that time I was sure he was going to pass out. A few more deep breaths and me holding onto him, he said he was better. His back and stomach were still hurting pretty bad when Aaron got there and I walked him quickly to the car. We got him to the condo which is about 4-5 blocks away and he immediately went to the bathroom. 2 imodium later and an alka seltzer gummy, he’s sitting on the couch having a snack and using the heating pad on his back. Phewwwwwww. That was one hell of an ending to the MRI night!!!!!
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