Yesterday was Mathew’s appointment with Dr. Burnell, his Oncologist.

As expected Mathew is starting chemo and is scheduled to begin on Monday (which he doesn’t know yet…). While at the hospital yesterday Mathew had his power port flushed. Unbeknownst to us he needed blockwork done. Aargh! He now is going to the other hospital in town tomorrow for the required blood work. Again…lack of communication…!!

The last few days and nights comprised Mathew being in stomach pain and not feeling well. The overall lack of sleep caught up to me again and I wasn’t alert enough to focus on writing a single word let alone a post. Now Mathew is sleeping almost around the clock and after plenty of sleep, here I am.

So Mathew’s new chemo regime consists of 2 drugs, Toptocan and Cyclophosphamide. I think I spelled these right but forgive me if not. The Cyclo is a drug Mathew took in the first treatment as part of his outpatient protocol. The other drug is new and is used for metastasis which Mathew has.

Treatment will include chemo every day for 5 days straight as an outpatient. Then, rest for 2 weeks and repeat. Dr. Burnell plans to check on Mathew’s lungs after 3 cycles; usually 4 is the maximum number of cycles given with this chemo cocktail. Yes he will lose his hair again. The other common side effects are nausea, vomiting and diarrhea so naturally Mathew is quite concerned about that.

On Tuesday we made our first visit to the psychiatrist. He spent close to two hours reviewing Mathew’s history, asking questions and taking notes. After he concluded that he believes Mathew’s increased anxiety is caused by not enough pain management. He is increasing the Pregabalin (Lyrica) dosage from 50mg to 150mg twice daily. The cancer and subsequent damage to Mathew’s spinal area and surrounding tissue and nerves is causing the severe pain and Dr. Satya feels that by addressing that, Mathew’s anxiety will decrease to a much more manageable level.

Whoever said it takes a village to raise a child had no idea it takes literally every.single.one to help an adult child through Ewing’s Sarcoma!

As I mentioned above, Mathew is currently unwell. About 2-3 days ago he began complaining of a pain in his stomach. He started refusing food but when he tried to eat it came out through vomiting later. He is suddenly sleeping more and if he doesn’t start sipping more water is going to end up on iv fluids to rehydrate. He is extremely cranky which means he is feeling very sick. Not sure if it’s the flu or a miserable cold but challenging nonetheless.

Right now I must get some pain meds and fluids into him. I just wanted to post an update so you know what is going on.

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