JP...Thanks for the update...My prayers are with Brenton and his family!!!

Update

Yesterday they performed the biopsy, tomorrow we hope to get the results. Since Sunday at midnight he has eaten only one meal which was around 6pm Monday evening. He has had a few bites on Tuesday around 930pm, nothing to eat today, maybe one or two small glasses of orange juice this morning. He is not able to take his meds, or eat or drink due to nausea. The nurse has requested nausea meds from the doctor on call tonight at which time he/she hasn't answered their page. Maybe the body is protecting itself/kidneys since the kidneys are only working at 30%. Maybe the doctors are waiting on the lab reports to respond correctly. I am wondering at what point do they (doctor/nurses) respond, how long can he go without his meds, without food , without water, before they take some action which actually works. being on the outside (medical community) makes me wonder are they (medical personnel) just burnt out, and only see my son as a number. We are waiting for a call from the on call doctor, to see what plan of action is currently in place for Brent. Joy (my wife) made a comment to me tonight that I am being overly dramatic like some old lady over this situation. I thought about it for a moment. I am over weight so I am more likely to have more estrogen than normal and old (58) so my testosterone level is much lower that when I was 18. She says the hospital knows what they are doing. I think no food and no water and no meds is more in line with a prison camp or a right to die group. I know I am being unfair to the medical community but the old lady in me is not going down with out a fight. Brent's a marine, still active duty. Its the least we can do.

Later

Roger


Prayers on your way my friend

He fell asleep after he received the anti nausea med last night, he currently is sleeping, will be waken for blood drawn shortly, as of yet still no water or food, one pill scheduled at 8 pm, we can put a man on the moon....

Later

Roger

For Roger:

Roger, trust your instincts. They're right. Be the old lady if that's what they tell you. I make a lousy patient. I can be cranky enough as it is but put me in a hospital and I really have to work at it to behave myself. With an RN as a wife, I hear a lot about what goes on in hospitals. Some is unbelievably funny, some is downright scary. Anyone who's in a hospital, at least here in the US, these days is normally VERY sick. The days when patients could often tend to many things for themselves are long gone. Nurses are in increasingly short supply and that could take a decade to really change if something major was done about it immediately. Nurses have to tend to more and sicker patients these days so when it takes them an hour to get you your pain med., it's not because they are ignoring you. They are that busy. The automated paperwork that a new patient requires can take a full hour for the nurse to complete. It's not uncommon to have to get information on a patient's condition every 15-30 minutes because they are in such serious condition. Doctors have their own challenges trying to care for more patients for fewer dollars, ordering the tests that are needed (and the occasional fights with the insurance companies over covering them) and making sure you've ordered the right tests you need to cover yourself in the rare case that turns out to be needed. Doctors and nurses will tell you the best thing the patient can do for themselves is to look out for themselves and have someone there with them who can when they can't. Be patient and understanding with the doctors and nurses but be assertive when you think it's needed. Just making sure anyone entering the room to do anything with the patient washes their hands is one of the best things you can do. Patients who are involved in their treatment decisions have been shown to have statistically better outcomes. Many hospitals have patient advocates on staff. Don't hesitate to use them to understand what is happening and get more information when you need it. Doctors and nurses want you to have that information too but they have to juggle you with 6-10 other patients too that are just as sick or sicker. Marines never go down without a fight, plus Brenton has to get some of that from you. My prayers are with all of you!

From Roger

Good Morning, I will be leaving shortly to see Brenton, but first an update. Things have been moving rather quickly since Friday morning. The results were partially given to us on Friday in bits and pieces; first we were given notification around late morning. His mom called that the results were in and to our understanding was that we were going to meet with his team that evening between 5 and 6 with Brenton about the biopsy results.

That wasn’t the case, Debbie called me crying that Brenton just texted her that the cancer was back around 12:45. We were pissed, what happened to the “everyone gets together to hear the news together meeting tonight at 5.

Needless to say the newest results are given to the patient first as soon as things are known or changed first thing in the morning by the doctors during the first round. This is actually the time for the parents to get the news the same time the patient does and is the best time to ask questions. We have missed all those windows, since you have to be there when the window opens.

It was now around 1pm or so, and it’s around 2 to 3 hours to Boston depending on the traffic heading south down route 16 from Ossipee, through Portsmouth NH down 95 picking up route 1 into Boston. She had to pick up our daughter at 3pm and drop her off at home and then head down. She might make it then between 5:30 and 6.

The traffic was bad, heavy rains all the way to Seabrook NH.

I had gotten there around 5PM and planned to wait to page the doctor so we would get the news on what the plan of action was together. The social worker was there from Dana farber, and all she did was asked about us our feelings in the matter. We were there to find out what was going on, what the results were, what the plan of action was, things that were useful to parents you see, not my feelings!!, first I needed information, then I have the feelings part.

At that time my feelings were “WTF” why can’t we get real information about the situation not “How did you feel when you first got the news”, what fricking news? That’s what we there for, to get the news. Looking back now, I should have paged the doctor, which was part of the team and past that on when Debbie got there. My wife Joy said she social worker was a bit early, and she didn’t want to give us the details

I called Deb to see what here progress was, not good, heavy traffic through the tolls around the beaches as in stand still moving .5 to 1 miles an hour, looks like she wouldn't bee there to after 6:30 or so.

Later that evening we met with the night on call doctor which had very little information. She did say the AML was back. Luckily just in the kidneys, and they were still trying to figure out the best plan of action which would use the least amount of Chemo to stop/shred/destroy/mutilate/obliterate the AML cancer.

I see the story is getting rather long at the moment; I need to get to Boston to beat the traffic. So in a nutshell, Brenton has been moved to the oncology floor, and his Chemo is scheduled to begin on Monday, of course this is probably old information, will update later.

Actually I cannot get past Taco bell in Saugus Mass. before they start this morning. Brent has requested 3 Soft Tacos, his appetite is back, and I have found out whatever I can do to get food which helps him to get nourishment, it’s the least I can do.

Roger and his whole family