Last night was Rion's last night of chemo for the 1st (of 12) cycles and it couldn't have come fast enough. The double dosage of chemo definitely has hit him harder than it did before when he was taking the single dose (duh) and undergoing radiation. The fatigue has been almost debilitating at times and it's all Rion can do to listen and follow along in a conversation with me. He is cold all the time- his hands and feet are FREEZING even when it's 80F outside. He looks pale and his eyes are red around the rims. For the first time he truly looks like a cancer patient and it breaks my heart! Last night was the 2nd time he has vomited during or immediately after a meal with zero nausea or warning. One minute he's fine and carrying on conversation while we eat at the table and the next second he's rushing to the bathroom. Each time he has been violently ill to the point that he is shaking and sweating afterwards. We have no clue how to combat this but if it continues to happen when he is off the chemo we will be contacting our oncologist at Duke. Another new side effect he has experienced is a low grade fever in the evenings right before bed time. But it's possible that the fever was caused by him taking a bath and raising his core body temperature. We have been taking his temperature periodically throughout the day and so far he hasn't run a fever at any other time. We are anxiously awaiting his blood work on May 9th to see what this dosage has done to his levels, especially his platelets since they suffered before.
But even with all of this we know that we are blessed beyond measure. Comparing his new MRI (wow, can't believe that was just last week, it seems like so much longer) with the original diagnostic MRI from November reminds us that we were fortunate his tumor was operable and, through the work of God, we were about to get in touch with Duke and arguably the best neurosurgeon in the world. We've come across so many people that are living with inoperable brain tumors or whose surgery wasn't as successful as Rion's, these other brain tumor patients aren't as lucky as us and we always try to keep that in the front of our minds when something goes wrong. Our heart aches for each and every cancer patient who has it worse than us and at times we feel guilty complaining about side effects when it could be so very much worse. I couldn't imagine how horrible it would be if Rion still had to continue working right now, he can barely stay up for more than 5 or 6 hours these days and just doing house work leaves him worn out. I'm confident his treatment wouldn't be going as well if he had to manage the stress and demands of a job on top of his treatment & side effects. WE ARE BLESSED!
So things aren't exactly what we would like for them to be but we are constantly humbled by what others have to go through in their treatment. I am hoping that Rion's side effects will subside now that he isn't taking the chemo each day and that his quality of life will improve some what.
Thank you for your continued prayers and support, it blows my mind that we are still getting get well soon cards and donations in the mail almost every day. It makes me want to fight even harder and do even more to keep on top of all of this and take as much stress off Rion as possible- you guys make me feel empowered and I can't accurately express my gratitude and the extent to which I rely on this to keep going.
God Bless,
Emily & Rion
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