Chemo Round 2, Day 14
Today Collin had his last dose of chemo in this second round of treatment. He started out the day by waking up a little earlier than usual. He was a bit fussy, and had some vomiting. He wasn't too eager for breakfast, but seemed a little more interested in eating at lunch. The speech therapist saw him at lunch time, but since his facial muscles are still weak and he doesn't have complete control over his lips and tongue, she is still not ready to advance him to new textures. For now he remains on a pureed diet, and takes sips of liquid best from a spoon. He continued to work on using his right hand and arm during occupational therapy.
Some of Collin's medications are being changed a bit to make them more manageable at home. His blood counts are beginning to rise, so it looks like we may be able to go home for a little while at the end of this week. We will have home nursing care to oversee his feeding tube and broviac care, and it looks like we may come back here for outpatient physical, occupational, and speech therapy as opposed to having a different agency provide these therapies at home. It seems like there won't be any time lapse by having outpatient therapy, while it may take some time to have the services start at home. We will also come into the outpatient oncology clinic two days a week. He has a three-hour outpatient MRI scheduled for Wednesday June 30, and then two days later may start his next round of chemo. Some of that round of chemo will be done at home; apparently we will be taught at the clinic how to administer the chemo ourselves. There will also be a shorter hospital admission over a few days for one of the drugs to be administered. Of course at the first sign of a fever at home, he will be readmitted to the hospital to be monitored and treated for infection. So even though we will be sleeping at home, it still seems like we'll be spending a lot of time at the hospital. I will probably still live out of a suitcase at home, so that I am prepared if we need to be readmitted to the hospital quickly. I wonder if I'll ever stop feeling the unsettled feeling that seems to be my constant state of mind?
I've really been struggling lately. It seems my plan to keep myself numb so that I could continue to function may be catching up with me. I am starting to feel sadness, fear and anger that is larger than life. I want what no one can give me-a guarantee that we're all going to survive this ordeal.
I wish so much that I could give you that guarantee!! I'm glad to hear that you might be able to sleep in your own bed. Being in the hospital for so long has probably forced you to bottle up some of your emotions since you don't have much privacy. I pray that the Lord will give you a peace that passes all understanding (Philippians 4:7).
ReplyDeleteTesha said what I feel more beautifully than I could have said it!
ReplyDeleteDid you know that your kid's name when combined mean "Wish fulfilled-- victor(y)". Gives me chills when I think about it.
ReplyDeleteI picked Neya because it meant "fulfilled wish" but I didn't realize what Collin meant. That's awesome, thanks Greer!!!
ReplyDeleteThanks Tesha and Natalie!!!
Hi Jenn - It sounds good that you will be able to get home for a short while, but still so much to take care of that it definitely won't be much of a break. I can only imagine what emotions you are feeling and understand that you are feeling everything you mention. Is there anyone that you can talk to at the hospital? Some sort of support for you while you are caring for Collin? It is so important for you to be able to talk about it to someone that understands and knows what you are going through. We are constantly thinking about you guys and praying for you all. Love you!
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ReplyDeleteMy summer is absolutely empty ... no jobs, no work - by choice! I am at your disposal when you are home! You simply need to call, email or text!
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