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Our ever-evolving situation.....

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Here's what's been going on with David:

Back in Dec. 12/13-16 David had a BBBD treatment that had seriously negative side effects. Because he had such a bad reaction, he was taken off the BBBD protocol. It took him until the end of January to recover enough to attempt another, less harsh chemo treatment.

1/23 David was to be admitted the next day for an intra-arterial chemo treatment, but around 11 pm he had two tonic clonic seizures, back to back, really bad ones, and was taken to the hospital by ambulance.

1/24 David was released from ER in the morning and admitted later in the day for the scheduled chemo--even though it had only been a few hours since those horrible seizures.

1/25 David was released from the hospital because his platelets were too low for chemo; however, the MRI that they did the night before showed "dramatic improvement" and the BBBD team was "ecstatic." Because of the favorable response, David's team of drs revisited the BBBD protocol decision and wants to put David back on that protocol. David agreed to try the BBBD again. I'm scared and dreading it but I am awed by his bravery and I support that decision fully. They told us that they would check his platelets in one week and do another BBBD then. We didn't make it a week.....

1/27 David had a lot of pain in his butt muscles and in his rectum. I took him to ER. Diagnosed with cellulitis and given antibiotics. Suspicious spot for abscess but not big enough to drain. CAT of butt etc. area makes an incidental discovery....a serious one. David has two blood clots in his groin/upper leg. Risk of pulmonary embolism. Put on IV blood thinner.

1/28 Went home (way too soon, in my opinion) to David's apartment with oral antibiotics and a twice daily shot of the blood thinner Lovenox. I stayed with him and and tried to help him as much as possible. David was frighteningly weak, incredilby shaky, in terrible pain, and unable to urinate. I was giving him his meds and shots very carefully. He was not looking good...

2/1 David couldn't stand the pain any more. Infected area looked TERRIBLE--all red, hot, swollen, skin sloughing off....called an ambulance and back to ER. Dr. took one look and said that David needed immediate surgery to have abscess drained. Blood cultures showed bacterial infection in bloodstream too. There is a chance that David's port is infected with that bacteria and will need to be removed. David went to surgery and during surgery had a complication...."heart block" where he had an erratic heartbeat. Drs suspect bacteria "seeded" in heart and David may now have endocarditis. Very serious. David was removed from blood thinner that was treating clots because he can't have surgery with blood thinners in his system. During surgery, David bleeds excessively and drs are afraid to put him back on blood thinners because of risk of bleeding, but afraid of pulmonary embolism if he doesn't take the blood thinners. They decide to keep him off blood thinners and put a filter in his vein to catch any clots that break off and head to his lungs. Surgery was successful---they drained a lot of pus and fluid. They left an open wound the size of a lemon in David's butt right near his anus. It looks awful. They said he will have an open wound there for a long time and I need to learn how to pack it. David is still in extreme pain. Drs keep giving him more and more pain killers and it helps somewhat.

David's entire situation is really impacted because he is immune-suppressed from chemo. It's going to take a long time for the wound to heal and to get over the infection. The doctors tell us that David has a whole "host of issues." I am fighting a feeling of panic...I feel like this is a cascading series of events, and they are all going downhill really rapidly.

2/2 An echocardiogram is scheduled to check on endocarditis. Hematology department says NO FILTER with a bacterial infection present in the blood because that foreign body will also get infected and cause even more problems. But the risk of embolism too great...so they agree on a compromise...they will start blood thinners 48 hours after surgery if an ultrasound shows no changes in clots or no new clots. If there are changes or new ones, they will have to risk filter and infection. They do an ultrasound on both legs and in David's groin and abdomen---the clots are stable, no new ones found. So David will start a blood thinner again tonight. Echocardiogram is done....no infection in heart. Thanking God! Hematology team says that there is a high probability that his clots are infected with that same bacteria. No way to culture a clot...and clots form a skin or shell over themselves and are very resistant to antibiotics. They will consult with infectious disease dept. to see how to treat his infected clots.

2/3 Today....we got the preliminary results from the cultures...it's a form of e coli. Not the kind you get from bad food or eating mushrooms...not the kind that puts you in ICU or trashes your liver and kidney. This one is from an organism that lives on your skin etc. They suspect it came from the abscess near his rectum. They said this strain of e coli loves to live in your lower GI tract. They take David off the wide-spectrum antibiotics so he doesn't become antibiotic-resistant to them and they started him on one that will hit the e coli hard.

They say that the e coli is serious but treatable. They said it's gram negative, whatever that means. I am hoping for the best but this has been incredibly crazy, even worse than normal for us. We have seen so many doctors and specialists...I think over 20 different doctors on four different teams. The oncology department even sent a team over to talk about David's condition and treatments. Dr. Neuwelt himself has come over every day. Of course this sets chemo treatments back a lot. The doctors told us that they are treating David as their number one priority. I'm glad that they are taking such good care of him but I am also afraid because I know that this much attention is an indicator that David is in serious trouble.

Today was the first day that I could see an improvement in David. He was able to get out of bed and walk for about five minutes down the hall. He needs to do that to help prevent more clots. He also shaved today and he's eating better. But he has a long road ahead of him. The doctors want him to just take it easy over the weekend and then they will do another ultrasound and check on the status of the clots. We should know by Monday whether or not they can salvage the port. I don't know when we will go home. The oncology team said that David will need to be on blood thinners for a long time, more than the original 3 months that the ER department told us. And this infection will take a long time to clear up too. I'm not sure if they will be able to do another BBBD or even an IA chemo treatment with the bacterial infection not resolved. As amazing as it sounds, the oncology team says that they would do another BBBD with just the clot issue still there. They go up an artery and not in a vein. His clots are in his vein...his inferior vena cava, the big one that goes up to his lungs. They told me that if he has a pulmonary embolism, it will be fatal. I'm fighting hard not to let that freak me out. I'm sleeping on my camping cot next to David's bed and I'm not leaving his room at all. I'm in full mother bear mode...and that's a good thing. He needs all the special care and attention that I and the hospital staff can give to him.

So....here we are. I'm telling myself that today is rainy but tomorrow could be sunny. And that David is going the right direction now...he's getting better, not worse. And I still am saying that God is good, all the time, and I still trust Him, all the time. :)

Love and blessings and peace,
Cindy (in Portland again, dang it!) OR

Raani01
Posts: 68
Joined: Mar 2011

Cindy,
I am at home on this Friday evening. Jacob, my husband, is taking a nap and the kids are watching their TV shows..As I reflect on the last few days what you were going through, I am kind of feeling numb, started thinking about God, the meaning of life , and why things like this happen to people etc. etc. Well, one thing I know; you find peace in the midst of all the pain. As I think of this life as a journey to a better place (my Christian faith), I find peace also. Sorry, if I sound philosophical with not much reasoning.Like you said, when I write down my feeling (or feelingless) and knowing in my heart that there are people like you out there understand know why I feel like this, I find comfort also.
Hang in there,
Raani

connsteele
Posts: 232
Joined: May 2011

Cindy: I don't know what to say, other than I am SO sorry for what you and David are going through. Before I started reading this latest post, I could tell by its length that lots of stuff was going on and my heart skipped a beat.
(And Please don't feel bad for the lengthy post. You need to vent and we want to know all that you are going through so we can pray for you and David appropriately.)

I also can empathize with the fatigue that you must be feeling, in dealing with so many different doctors and medical teams. You must feel overwhelmed with so many conflicting opinions. When we have been in that situation with our son, David, my brain begins to shut down and everything becomes a blur. Is there one doctor who is "driving the train", looking at the big picture as opposed to each specialty group focusing only on thier particular area? And, do you have someone to be there with you, a third party who can just be there to take notes for you so you can review them later, when you are not so tired?

You and David are such fighters, true inspirations to us all us fighting brain cancer. I say, "hooray for momma bear...she means business and you all better listen!"

And, as time and energy permits, please keep us posted.
Love and prayers, Connie

m/o David, age 34, dx AA3 4-13-11)

Radioactive34's picture
Radioactive34
Posts: 387
Joined: May 2011

Wow, that is just a lot to deal with. Hugs and prayers...I hope recovery is a quick and painless as can be.

sadinholland
Posts: 226
Joined: Apr 2011

Keeping you and David in prayer!

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

My heart goes out to you....You are a wonderful mother bear, remember to take care of your self too. I hope things are getting better every day.

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

You and David are in my prayers, and I am so sorry that he has had this set back. You amaze me with your strength, and David is a lucky man to have such a wonderful Mother! Be sure to take care of yourself as well as David.

Lots of Thoughts and Prayers heading your way!!

Michelle
Mobile, AL

barbn
Posts: 33
Joined: Jan 2012

It is heartbreaking to hear what you are going through. You are an amazing lady. Stay strong and optimistic and take care of yourself.
May God be with you.
thoughts and prayers with you.

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