Meanwhile, he still hadn't been told anything about another appointment with the doctor, but since we had now been told he had qualified for the trial we were hoping that meant the scan was OK. We still wondered why it seemed important for him to see a doctor on Wednesday, but again we were hoping all was OK. Now with the delay we had our doubts again. We had been told that the trial had to begin on Thursday in order to be in compliance and now everything seemed to be on hold. We didn't know what was going on. Talk about an emotional roller coaster ride!
We decided to go down to the hospital and talk with a patient advocate and perhaps she could find out what was happening. She spoke with the clinical trial nurse and then told us he was definitely in the trial, but because Reid was the first patient at MD Anderson to qualify for this trial some additional information was needed. We were told that the trial didn't have to begin on Thursday and one or two days later would be OK and we should go home and wait for a call on Friday.
Friday morning Reid received a call around ten telling him to be down there at twelve. Jim was off work, so we both went with him. The clinical trial nurse explained to us that everything was ready as far as the sponsor and MD Anderson were concerned but a third party who I guess oversees the trial wanted some earlier scans first. She said his latest scan had been fine and the doctor's appointment was just to go over everything again. The trial is supposed to begin seven days after Reid signed the consent form, but because of the additional scans that the third party wanted it was OK to start a day late. So, Reid saw the doctor, a fasting blood sample was taken, and the drug/placebo was finally started a little before four. We were home by 6:30, let out the dog and fed the cats, and then headed to Cheddar's for something to eat. Reid hadn't had anything all day and by then was pretty hungry.
This week we've all been on an emotional roller coaster ride and hopefully things will settle down a little now. He will be receiving the drug/placebo every 21 days which will require a doctor's visit the day before and then a fasting blood sample each time. There will be numerous scans done during the trial and once a person has had cancer these scans can be a little nerve wracking, but this will be our "new normal" as they like to say. Hopefully, all will go well.
I've been blown away by the moral support and prayers we've received once again this week. Thank you so much!
On Monday he has his regular appointment with his stem cell doctor. He still has the central venous catheter and is hoping on Monday they will tell him it can be removed.
I hope everyone has a wonderful Easter day tomorrow. I thought I'd share some older Easter doll pictures with you. These are mostly Vogue Ginny Dolls...modern reproductions and vintage dolls from the 1950's. I know some of you have seen them before, but I haven't had time to play lately so I'll share these again. Click on the pictures to enlarge.
Happy Easter!
Hi, Betty, those darling miniature Easter items are incredible. I really hope that the routine starts settling down for you and Reid so you can both get some R&R.
ReplyDeleteLooks like you all have been running. I'm glad Reid has finally been able to start the drug/placebo. Your doll vignettes are really adorable and I hope you all have a blessed Easter. {{{Hugs}}}
ReplyDeleteExhale.
ReplyDeleteOkay, now take a deep breath.
It sounds like things are moving in the right direction, at least! Hooray for small blessings!
Seeing your vignette made me realize how much I have missed them. This was so charming. I hope it gave you a little peace to do something you love.
Sending Easter prayers your way for a day filled with joy and jelly beans.
Oh, Betty, what a hectic time you have been having. I know exactly what you mean when you talk about being on an emotional roller coaster. I do wish you a Happy Easter and you are all always in my thoughts. Love from Sicily. xx
ReplyDeleteI've read your post a few days ago...and you all continue to be in my thoughts and prayers. I'm so slow at responding in this way, but not with my prayers.
ReplyDeleteI hope this week is going smoothly!
Hugs..
Love your doll scenes...