Today began at 2am since we decided to make this a one day trip and they scheduled David's first appt at 7am. So we left at 3am. We had no problems and arrived a stinking hour early. So we went to Whataburger for breakfast before heading in to MDA.
I am not a fan of the AM hours before about 9. Just saying.
This is the second time we've had a 7am blooddraw and he didn't get in until after 8. Grrr.
Then we waited for the Dr. The nurse called us back. She said our research nurse was not there so Dr. T would be in to see us. Knock at door and in comes a PA. She says Dr. T not there, so Zita, another PA will be in. Then knock at door and Shehanie, our research nurse comes in. Then another nurse comes and gets David for more blood because he didn't get enough at 8. While David went to do that, knock at door and Dr. T comes in. Who's on first? Does anyone really know what time it is? Does anyone really care? 🙄
Anyway. They all agreed that all the bloodwork looked great. And we could go on to get the infusion. But wait. They ask about side effects David is experiencing? Yay no stomach issues to speak of. A slight rash that has gone away. He also mentions that his back has been aching. We have read this is one of the most common side effects. But they decide he needs an xray of his spine. Just to rule out metastisis. And they want a full bone MRI next time. So instead of going to the infusion we stop for the xray.
Then on to the infusion. They call him right back! And get everything ready. Then we wait. An hour. Because the drug is not there yet. This happened 2 weeks ago too. Where is the drug? Downstairs in the pharmacy. Ugh. Finally it comes, takes about an hour and we are out!
It's now 2pm. We are tired and hungry.
Lunch and home!
I just checked online and the xrays show no sign of metastisis. Yay! But I guess he'll still have the bone MRI anyway. We finally met the whole deductible/co-pay, so whatever is fine. Do it now before the insurance year starts again in September!
It was a good day, all things considered.
We are anxious for the scan results in two weeks, but we remain optimistic!
Please pray for clear bone scans and shrinkage/disappearance of the other stuff, no more side effects, less back pain. And a good nights sleep!
Thank you for loving us!
Tuesday, May 29, 2018
Friday, May 11, 2018
Infusion confusion
Yesterday was a full day that started about 7am. David had early bloodwork and then his second of 3 needle biopsies at 8am. Then we saw the study nurse and PA, as Dr. Tannir was out of town. I hope he was having fun somewhere, I can't imagine being at MDA 24/7!
The study nurse and the PA were just so excited to hear how David's first 2 weeks on the new trial med went. They said everyone has been reporting that the side effects are minimal and so much better than anything else so far. Their little faces were lit up like we were at Disney! Truth be told, David has tolerated it very well, had a rough couple of days about midway through that we've now attributed to a virus and not the drug, since it went away. Happy dance, praises!
All his bloodwork looked good too. So on to the first infusion. Which they also seem to think is about the best thing since sliced bread. They don't expect many, if any, side effects from this round but warned him of the serious ones to look out for. I'm wondering which round they do expect the side effects to happen?
The infusion was pretty easy except for the hour wait for the drug to get there. What? Where was it anyway? They said most people either feel fatigued or high energy the first 24 hours after. I wonder which David will have. Just feeling normal would be great! This is the final waiting room I waited in. I wonder about those bouncing letters? Everything at MDA is pretty orderly, never seen any thing like this. Maybe the letters are ambulatory? Maybe the drug was ambulatory? 😁
So after a day of hurry up and wait, we were back home about 7pm. We go back the end of May.
Please continue to pray for:
1. No side effects
2. No more cancer
3. Many friends, including a 4 year old named Addy whose treatment for DIPG is no longer working. Devastating prognosis.
We count our blessings.
Thank you for loving us!
The study nurse and the PA were just so excited to hear how David's first 2 weeks on the new trial med went. They said everyone has been reporting that the side effects are minimal and so much better than anything else so far. Their little faces were lit up like we were at Disney! Truth be told, David has tolerated it very well, had a rough couple of days about midway through that we've now attributed to a virus and not the drug, since it went away. Happy dance, praises!
All his bloodwork looked good too. So on to the first infusion. Which they also seem to think is about the best thing since sliced bread. They don't expect many, if any, side effects from this round but warned him of the serious ones to look out for. I'm wondering which round they do expect the side effects to happen?
The infusion was pretty easy except for the hour wait for the drug to get there. What? Where was it anyway? They said most people either feel fatigued or high energy the first 24 hours after. I wonder which David will have. Just feeling normal would be great! This is the final waiting room I waited in. I wonder about those bouncing letters? Everything at MDA is pretty orderly, never seen any thing like this. Maybe the letters are ambulatory? Maybe the drug was ambulatory? 😁
So after a day of hurry up and wait, we were back home about 7pm. We go back the end of May.
Please continue to pray for:
1. No side effects
2. No more cancer
3. Many friends, including a 4 year old named Addy whose treatment for DIPG is no longer working. Devastating prognosis.
We count our blessings.
Thank you for loving us!
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