It's Monday now, the day after surgery and we are collectively exhaling after what has been a long 24 hours for Phil. He did very well during his surgery although he did bleed quite a bit and needed additional platelets during the 3 hour procedure. Dr. Mansfield found very infected ethmoid and sphenoid sinuses and had to remove a small portion of free floating bone deep inside the sinus area which appeared infected as well. He called in Ghosh to observe because the bone removed was very close to the paracranial flap he had created during the previous surgery for mucor. From the gross appearance in the OR it looks like a routine bacterial sinus infection. So, after packing the sinus cavity with three different antibiotic laden products he sent Phil up to the ICU to recover and then back to his room on 3 South. He recovered fairly quickly and was groggy but gave me the thumbs up when I came in to see him.
The rest of the morning was spent hanging out and helping him eat ice chips and come out of the heavy anesthesia. Phil's brother David had come down for a few days and we spent the day napping, telling stories and engaging/encouraging Phil. He did fine until just after I left to take my kids to dinner and get them to bed for the night. Apparently the drainage from his surgery combined with his oral intake was too much for his stomach and he threw up all of it. Poor guy. He wasn't in any pain but according to David he was pissed off! He hadn't eaten in 4 days and he was finally at his rock bottom. He was sick and tired of feeling sick and tired (I can't believe it took this long) and just wanted to eat something and feel better. Once things settled down he and David watched The Godfather and he finally fell asleep for the night.
This morning he is feeling better after receiving more platelets overnight and getting some much needed rest. He ate some Jello and broth and started in on Gatorade and saltines. A repeat MRI was done late morning to check the status of things post operatively and we got the report on his cultures - all are growing staph aureus, NO MUCOR. So, we're dealing with a routine sinus infection and got to it very early. We are so thankful and Phil was fist pumping. Major relief around here. He is so tired and fatigued and although I know he would have rallied for the mucor fight too, I am glad he doesn't have to.
Now he can sleep, eat, take his medicine, build blood and hopefully go home in a few more days. Never has a sinus infection been a more welcome diagnosis!
Showing posts with label Mucor. Show all posts
Showing posts with label Mucor. Show all posts
Monday, February 14, 2011
Saturday, February 12, 2011
Phil's Latest Update
This current hospitalization has shown me what a well-oiled machine my local crisis management team has become. We're so accustomed to this roller coaster routine by now that each of us knows our role down pat. My sister Terry called me early yesterday morning to say she'd come sit with Phil for the morning shift so I could go with Olivia to celebrate the "First 100 Days of School" and Valentine's Day. Josh started cooking in the morning so we could have homemade manicotti for dinner, brought to us at the hospital I might add, so Phil didn't have to gag down the Turkey a la King they put in front of him. He also picked up the kids from school and entertained them/developed their character (depending on how you look at it) for the rest of the afternoon and evening. Josh even took care of our dog Nero's deep emotional needs and brought him over to hang out all day with their dogs.
Today my parents joined in and took Bennett to his baseball game. Terry and Josh have Olivia and Nero and will resume with Bennett when my parents meet up with them later today. Tomorrow will be more of the same with Jason and Becky and their dogs for entertainment and more dog camaraderie for Nero. It's what families do, or should do that is, and I am very fortunate to have good family around me.
Phil called me at 9 this morning and sounded well rested and strong of voice. He had a decent sleep despite being bothered all night getting blood and antibiotics. He was able to take meds to get back to sleep and after 3 units of blood he's singing a new song. His L eye is a bit swollen and slightly red so his on-call infectious disease consultant ordered a STAT MRI to see what's going on with the eye, sinus and mucor situation. Dr. Kossman was going to do this anyway so now it's in the pipeline. He just returned from having that completed so we'll await that important piece of information. Otherwise, his blood counts are coming up, including the WBCs, and he is slowly feeling better.
That's all for now so stay tuned and thank you for keeping us in your prayers.
Today my parents joined in and took Bennett to his baseball game. Terry and Josh have Olivia and Nero and will resume with Bennett when my parents meet up with them later today. Tomorrow will be more of the same with Jason and Becky and their dogs for entertainment and more dog camaraderie for Nero. It's what families do, or should do that is, and I am very fortunate to have good family around me.
Phil called me at 9 this morning and sounded well rested and strong of voice. He had a decent sleep despite being bothered all night getting blood and antibiotics. He was able to take meds to get back to sleep and after 3 units of blood he's singing a new song. His L eye is a bit swollen and slightly red so his on-call infectious disease consultant ordered a STAT MRI to see what's going on with the eye, sinus and mucor situation. Dr. Kossman was going to do this anyway so now it's in the pipeline. He just returned from having that completed so we'll await that important piece of information. Otherwise, his blood counts are coming up, including the WBCs, and he is slowly feeling better.
That's all for now so stay tuned and thank you for keeping us in your prayers.
Friday, December 17, 2010
Tsunami's and Celebrations
Take a seat folks, this is a long one!
Several years ago I gathered my closest friends together for a retreat to talk about "Winter Spirituality". I was living in Washington at the time and desired to go deeper with my lady friends. Having gone to some retreats with my oldest sister and having experienced incredible intimacy and growth during those times, I craved more. I wanted it for myself and for my peeps. And while I was a little unsure if they'd respond to it as I did, I knew I wanted to offer it to them. I invited my sister Anita to lead us and we gathered one night to talk about this concept of "Winter Spirituality" ~ the hard times of faith; the cold, dark, frozen, quiet times with little observable life. They knew who she was from the constant stories I'd shared about her and that was enough for them to jump at my invitation.
Aside from holding a PhD in Psychology, they knew Anita ran a Christian psychotherapy practice and was my go-to person to help sift through everything useful I could learn about myself, my experiences and my faith. Intriguing enough in it's own right, yet that's not why they came. Remember the Christmas Tsunami of December 26th, 2004? I think everyone does. Well, it was just a month later in late January of 2005 when Anita's personal tsunami hit and we all got the news that her husband Randy had died suddenly and unexpectedly at age 51. At the time of our get together, my friends knew she was a few years into single-handedly raising two incredibly bright, independent, self-aware young girls while negotiating an enormous mountain of personal tragedy and grief. We were young mothers. We had young husbands. We wanted to know how she'd done it, how she was doing it, could it be done? That's why they came.
Little did I know about the tsunami that would hit my shores all these years later...
I don't remember a lot from that night. One thing I do recall with immense clarity is Anita saying something along the lines of this. "It's not a matter of if the shit will hit the fan, it's a matter of when". And she looked around the room at all of us ~ a gathering of women friends who suddenly felt a bit more vulnerable. She went on to describe the harsh realities of her situation, how several of her women friends were battling breast cancer and some were dying, how marriages were being torn apart by mental illness and scores of other maladies and realities of our collective life and world. The other thing I remember is she said "get ready" and "surround yourself with the body of Christ".
You may say to yourself reading this, wait a minute!! This was supposed to be a time of deeper connection and bonding and wasn't this going to be a gift from you to your friends, etc...??!! WTF! You craved more of this? Who exactly are you Sally and what are you playing at? Well, yes, I do in fact crave more of this, and yes I do consider this a gift to my friends and to anyone who is reading this as well. Because frankly, this is all there is ~ the truth of life. For me, there is nothing else. As I learned in PA school from a cancer patient, "shit happens, carry a big shovel". Tsunami's happen and in fact, that night I had no idea but God was preparing me in His wisdom for one helluva tsunami in our lives. Here I was, thinking I was providing my sister Anita, this sage conduit of wisdom, to come talk to my friends to show them how it really was when God was really saying "no Sal, I'm talking to you girlfriend". Well, thank you Sweet Jesus once again.
Randy was one of a kind and his death has changed my family and each one of us forever. I do not take anything or anyone for granted ever. My relationships and my orientation to things that are fleeting have changed. Nothing trumps relationships. Nothing trumps people. I am striving to live a life of love. Anita is still right beside me every step, we are still grieving Randy, she is still my most trusted advisor and there is no way I could negotiate these rough seas without her experience and guidance. But God is a genius and He wastes nothing ~ not even our sorrow or our pain. He uses it for us to help one another. It continues to be my hope that our tsunami is helping you and that our pain and suffering and our joys and celebrations are helping you.
PHIL'S UPDATE
On that note, we continue to have much to celebrate!! A CT scan of Phil's chest/abdomen/pelvis was repeated this week to re-stage his lymphoma. If you remember, his only other CT scan was done to initially diagnose him back in early August. At that time he had a huge 13 cm mass of lymphoma tissue in the center of his chest. That area is now shrunken to 2.6cm and there is no residual lymphoma (only scarring) in the axillary nodes (armpits). The radiologist describes this as "dramatically improved".
Last week Phil's kidney functions started to worsen and he had to stop taking his iron-binding medication Exjade. Since then his creatinine levels have also improved and are stabilized. They are much better and the plan now stands with continuing the Ambisome through the new year and then probably changing to an oral medication.
He has been feeling a bit more tired lately but his Hgb and HCT are holding steady and well at 10.9 and 32% which are much better than they've been in a long time. I think the fatigue is actually more due to activity than anything else. He's been walking our dog, going Christmas shopping, going out to dinner, seeing the Nutcracker, going to the movies etc. He's quite the busy guy these days! BTW, he's also pushing 190 lbs and can almost pinch an inch!
And now for Dr. Kossman's take on things... First of all, he thinks Phil looks fantastic and joins the chorus of the other guys saying he has surpassed all predictions that he'd even be here. That always makes me feel great for Phil and then I feel kinda weird...it's very sobering no matter how many times I hear it. Kossman explains that Phil has had one complete round of chemo and at the least probably needs four. He's been spending the last 10 days talking with Dr. Mayer about where to go from here. Now we find ourselves at a crossroads, a philosophical dilemma; a delightful, difficult dilemma.
Here are the options from here as they see them.
1) Don't rattle the cage. Do no chemo.
The idea here is that we've bought some time. The lymphoma will eventually come back but without using chemo we can have optimum quality of time, not necessarily quantity. Eventually chemo will have to be done again but waiting until the lymphoma forces our hand is the main idea here. Just keep doing what we're doing.
2) Treat with chemo and go after the lymphoma now.
The idea here is to go after the lymphoma while it is already beaten back. It is more likely that the lymphoma will respond to the chemo if it is treated now but there is a distinct risk of making the mucor reactivate with this approach. Additionally, there will need to be a lot of nuanced decisions regarding the chemo to avoid renal toxicity etc. Dexamathazone will not be given as the risk of inflaming infectious growth is way too high.
So, you see, there is no play book, no studies to guide us, no standard of care. We're really down to a philosophical dilemma and a judgment call that only Phil can make. He's made his call and he's gonna go all in again. Big surprise huh? He'll have another MRI right after the new year to recheck the brain issues then probably one last meeting of the minds to firm up the chemo plans. Then we'll let you know how to pray when we know.
Until then, we'll be celebrating what we have to celebrate, riding the wave of our tsunami, opening presents and eating prime rib, and basking in the reason for the season ~ Jesus Christ our Emmanuel!
Several years ago I gathered my closest friends together for a retreat to talk about "Winter Spirituality". I was living in Washington at the time and desired to go deeper with my lady friends. Having gone to some retreats with my oldest sister and having experienced incredible intimacy and growth during those times, I craved more. I wanted it for myself and for my peeps. And while I was a little unsure if they'd respond to it as I did, I knew I wanted to offer it to them. I invited my sister Anita to lead us and we gathered one night to talk about this concept of "Winter Spirituality" ~ the hard times of faith; the cold, dark, frozen, quiet times with little observable life. They knew who she was from the constant stories I'd shared about her and that was enough for them to jump at my invitation.
Aside from holding a PhD in Psychology, they knew Anita ran a Christian psychotherapy practice and was my go-to person to help sift through everything useful I could learn about myself, my experiences and my faith. Intriguing enough in it's own right, yet that's not why they came. Remember the Christmas Tsunami of December 26th, 2004? I think everyone does. Well, it was just a month later in late January of 2005 when Anita's personal tsunami hit and we all got the news that her husband Randy had died suddenly and unexpectedly at age 51. At the time of our get together, my friends knew she was a few years into single-handedly raising two incredibly bright, independent, self-aware young girls while negotiating an enormous mountain of personal tragedy and grief. We were young mothers. We had young husbands. We wanted to know how she'd done it, how she was doing it, could it be done? That's why they came.
Little did I know about the tsunami that would hit my shores all these years later...
I don't remember a lot from that night. One thing I do recall with immense clarity is Anita saying something along the lines of this. "It's not a matter of if the shit will hit the fan, it's a matter of when". And she looked around the room at all of us ~ a gathering of women friends who suddenly felt a bit more vulnerable. She went on to describe the harsh realities of her situation, how several of her women friends were battling breast cancer and some were dying, how marriages were being torn apart by mental illness and scores of other maladies and realities of our collective life and world. The other thing I remember is she said "get ready" and "surround yourself with the body of Christ".
You may say to yourself reading this, wait a minute!! This was supposed to be a time of deeper connection and bonding and wasn't this going to be a gift from you to your friends, etc...??!! WTF! You craved more of this? Who exactly are you Sally and what are you playing at? Well, yes, I do in fact crave more of this, and yes I do consider this a gift to my friends and to anyone who is reading this as well. Because frankly, this is all there is ~ the truth of life. For me, there is nothing else. As I learned in PA school from a cancer patient, "shit happens, carry a big shovel". Tsunami's happen and in fact, that night I had no idea but God was preparing me in His wisdom for one helluva tsunami in our lives. Here I was, thinking I was providing my sister Anita, this sage conduit of wisdom, to come talk to my friends to show them how it really was when God was really saying "no Sal, I'm talking to you girlfriend". Well, thank you Sweet Jesus once again.
Randy was one of a kind and his death has changed my family and each one of us forever. I do not take anything or anyone for granted ever. My relationships and my orientation to things that are fleeting have changed. Nothing trumps relationships. Nothing trumps people. I am striving to live a life of love. Anita is still right beside me every step, we are still grieving Randy, she is still my most trusted advisor and there is no way I could negotiate these rough seas without her experience and guidance. But God is a genius and He wastes nothing ~ not even our sorrow or our pain. He uses it for us to help one another. It continues to be my hope that our tsunami is helping you and that our pain and suffering and our joys and celebrations are helping you.
PHIL'S UPDATE
On that note, we continue to have much to celebrate!! A CT scan of Phil's chest/abdomen/pelvis was repeated this week to re-stage his lymphoma. If you remember, his only other CT scan was done to initially diagnose him back in early August. At that time he had a huge 13 cm mass of lymphoma tissue in the center of his chest. That area is now shrunken to 2.6cm and there is no residual lymphoma (only scarring) in the axillary nodes (armpits). The radiologist describes this as "dramatically improved".
Last week Phil's kidney functions started to worsen and he had to stop taking his iron-binding medication Exjade. Since then his creatinine levels have also improved and are stabilized. They are much better and the plan now stands with continuing the Ambisome through the new year and then probably changing to an oral medication.
He has been feeling a bit more tired lately but his Hgb and HCT are holding steady and well at 10.9 and 32% which are much better than they've been in a long time. I think the fatigue is actually more due to activity than anything else. He's been walking our dog, going Christmas shopping, going out to dinner, seeing the Nutcracker, going to the movies etc. He's quite the busy guy these days! BTW, he's also pushing 190 lbs and can almost pinch an inch!
And now for Dr. Kossman's take on things... First of all, he thinks Phil looks fantastic and joins the chorus of the other guys saying he has surpassed all predictions that he'd even be here. That always makes me feel great for Phil and then I feel kinda weird...it's very sobering no matter how many times I hear it. Kossman explains that Phil has had one complete round of chemo and at the least probably needs four. He's been spending the last 10 days talking with Dr. Mayer about where to go from here. Now we find ourselves at a crossroads, a philosophical dilemma; a delightful, difficult dilemma.
Here are the options from here as they see them.
1) Don't rattle the cage. Do no chemo.
The idea here is that we've bought some time. The lymphoma will eventually come back but without using chemo we can have optimum quality of time, not necessarily quantity. Eventually chemo will have to be done again but waiting until the lymphoma forces our hand is the main idea here. Just keep doing what we're doing.
2) Treat with chemo and go after the lymphoma now.
The idea here is to go after the lymphoma while it is already beaten back. It is more likely that the lymphoma will respond to the chemo if it is treated now but there is a distinct risk of making the mucor reactivate with this approach. Additionally, there will need to be a lot of nuanced decisions regarding the chemo to avoid renal toxicity etc. Dexamathazone will not be given as the risk of inflaming infectious growth is way too high.
So, you see, there is no play book, no studies to guide us, no standard of care. We're really down to a philosophical dilemma and a judgment call that only Phil can make. He's made his call and he's gonna go all in again. Big surprise huh? He'll have another MRI right after the new year to recheck the brain issues then probably one last meeting of the minds to firm up the chemo plans. Then we'll let you know how to pray when we know.
Until then, we'll be celebrating what we have to celebrate, riding the wave of our tsunami, opening presents and eating prime rib, and basking in the reason for the season ~ Jesus Christ our Emmanuel!
Monday, November 15, 2010
You Gotta Have Friends
This Monday morning finds us back in the waiting room of the imaging center as Phil has yet another MRI. I've lost count but he must be nearing number 10 or so. Today's scan includes the brain, orbits and sinuses and we're looking at the edema and inflammation to see if it has resolved and of course, getting a read on the Mucor in the basal ganglia to see how it is responding to the increased dosing of Ambisome.
Our family had a great visit this past few days with Jason Mayer, a good friend from WA who flew down to hang with us and enjoy some fantastic weather. Paradise I think he called it. We met him on Friday morning at the San Diego Zoo and he got to experience first hand how odd our lives have become with all this cancer business. First of all, Phil was wearing his Walgreens Home Health fanny pack with his Ambisone mobile IV in it. Secondly, he had to caution Jason not to bear hug him because of the port in his chest! Jason gave his bear hugs to Bennett and Olivia and I instead, fo shizzle! Lastly, before we could go into the zoo, Phil had to meet his nurse at the entrance and have a blood draw. He proceeded to climb into her Mercury SUV and stealthily get a few tubes of blood taken from his port. The nurse preferred that he do it alone - it was all very hush hush and kind of bizarre. Like a drug deal but legit. Welcome to our life Jason! He rolled with it like a champ.
We had a great day at the zoo and Phil did awesome. The temperature was in the high 70's, the kids ran amuk, ate ice cream, saw tons of cool animals and decided the monitor lizard was the highlight. As Jason would soon see however, the Piper has to be paid. Saturday's plan to meet us for breakfast turned into a late lunch because Phil was so wiped out from the big day before. The funny thing was, after our late lunch, I found both of them asleep on the couch!! Jason maintains he was "supporting" Phil but I wonder.... He was a great guest and spoiled us with dinners, did some chores for us and basically rolled along at our pace. Olivia latched onto him immediately and cried alligator tears when he left!
On Saturday night Phil's Edgewood High School Class of 1980 had their 30th reunion in Pittsburgh and took the opportunity to Skype with him. We dialed in the call and were quite surprised with what we saw ~ Richard McKenna et al in his mother's basement, apparently "just like the old days"! Unfortunately, there were problems with the reservation at Foli's so the McKenna's became the place to be. Classic!! Oh yes, there was Rich's mother too, partying with the crew and saying hello to "dear Philip" and admonishing him to "get well soon because we've all been praying for you". She was so sweet and sincere and represents everything I love about his hometown and his small high school and the close knit bunch of yahoos they are!! You must know this is said with the most love you can imagine and not some slanderous slur.
These "yahoos" have done so much for my family, you have no idea. They have sent out the battle cry to all corners of this country, set up our cleaning service, inundated us with books, letters and gifts and many are supporting us financially. They have come out of the woodwork to support Phil, the skateboarding-Ted Nugent loving-tennis playing-acting-swimming-running-joking guy they knew and loved in high school. The call gave him lots to laugh about and was excellent medicine in it's own right. These are very good people.
The rest of this week has us following up with Dr. Ghosh and Dr. Kossman for next steps regarding the MRI results. We've got teacher conferences for the kids and my best friends Tricia and Cherylyn are coming from Washington for a long overdue visit. I plan on relaxing at the spa, going clubbing one night with my ladies and getting in as much girlfriend time as possible in between the demands of my regular life. It's going to be crazy but that's the only way we're gonna gitter done. Bring it!
Our family had a great visit this past few days with Jason Mayer, a good friend from WA who flew down to hang with us and enjoy some fantastic weather. Paradise I think he called it. We met him on Friday morning at the San Diego Zoo and he got to experience first hand how odd our lives have become with all this cancer business. First of all, Phil was wearing his Walgreens Home Health fanny pack with his Ambisone mobile IV in it. Secondly, he had to caution Jason not to bear hug him because of the port in his chest! Jason gave his bear hugs to Bennett and Olivia and I instead, fo shizzle! Lastly, before we could go into the zoo, Phil had to meet his nurse at the entrance and have a blood draw. He proceeded to climb into her Mercury SUV and stealthily get a few tubes of blood taken from his port. The nurse preferred that he do it alone - it was all very hush hush and kind of bizarre. Like a drug deal but legit. Welcome to our life Jason! He rolled with it like a champ.
We had a great day at the zoo and Phil did awesome. The temperature was in the high 70's, the kids ran amuk, ate ice cream, saw tons of cool animals and decided the monitor lizard was the highlight. As Jason would soon see however, the Piper has to be paid. Saturday's plan to meet us for breakfast turned into a late lunch because Phil was so wiped out from the big day before. The funny thing was, after our late lunch, I found both of them asleep on the couch!! Jason maintains he was "supporting" Phil but I wonder.... He was a great guest and spoiled us with dinners, did some chores for us and basically rolled along at our pace. Olivia latched onto him immediately and cried alligator tears when he left!
On Saturday night Phil's Edgewood High School Class of 1980 had their 30th reunion in Pittsburgh and took the opportunity to Skype with him. We dialed in the call and were quite surprised with what we saw ~ Richard McKenna et al in his mother's basement, apparently "just like the old days"! Unfortunately, there were problems with the reservation at Foli's so the McKenna's became the place to be. Classic!! Oh yes, there was Rich's mother too, partying with the crew and saying hello to "dear Philip" and admonishing him to "get well soon because we've all been praying for you". She was so sweet and sincere and represents everything I love about his hometown and his small high school and the close knit bunch of yahoos they are!! You must know this is said with the most love you can imagine and not some slanderous slur.
These "yahoos" have done so much for my family, you have no idea. They have sent out the battle cry to all corners of this country, set up our cleaning service, inundated us with books, letters and gifts and many are supporting us financially. They have come out of the woodwork to support Phil, the skateboarding-Ted Nugent loving-tennis playing-acting-swimming-running-joking guy they knew and loved in high school. The call gave him lots to laugh about and was excellent medicine in it's own right. These are very good people.
The rest of this week has us following up with Dr. Ghosh and Dr. Kossman for next steps regarding the MRI results. We've got teacher conferences for the kids and my best friends Tricia and Cherylyn are coming from Washington for a long overdue visit. I plan on relaxing at the spa, going clubbing one night with my ladies and getting in as much girlfriend time as possible in between the demands of my regular life. It's going to be crazy but that's the only way we're gonna gitter done. Bring it!
Tuesday, November 9, 2010
Hurry Up and Wait
It's getting harder for me to find ways to share what seems like the same old information. To make our lives seem more interesting to read about than they probably are. As I sit here preparing to give you the current run down from our visit to Dr's. Mayer and Mansfield I'm putting myself in your shoes and thinking about what it must be like to check the blog and read the latest update on Phil and our family. Do our lives sound as mundane to you as they feel to us? Are you getting as antsy to move on with treatment as Phil is? Are you waiting for a new story line - ready to hear more than "keep on taking the Ambisone, schedule another MRI in 2 weeks, and yes, no more chemotherapy for the time being"? Well, join the exclusive club known as "hurry up and wait".
This week however we had some great news to add to our blog in that Phil's creatinine, at 1.47, was at an all-time low. This means his kidneys are functioning very well with the Ambisone and he can now start the iron-binding medication Exjade twice daily. Mucor, you may recall, needs the iron to replicate. Exjade robs the the Mucor of iron. This is just one more way to combat the Mucor and hopefully send it packing. Dr. Mayer continues to emphasize that Phil has a small area in his brain that is essentially inoperable without risking serious neurological deficits so these medical therapies are his best bet for getting at this infection.
This afternoon Dr. Mansfield must have put about 12 different instruments up Phil's nose in order to "get a better look at things". Not for the pushovers of the world is ENT. I know why I called him a Zen Master. He is one smooth operator. Anyway... Overall, Phil looks great to him and he saw no signs of Mucor. He did take cultures of some purulent discharge (pus) he saw in there (sorry squeamish people) and we'll await those results but there was no ischemia (reduced blood flow) or necrosis (dead tissue). He will be seeing Phil after the next Skull Base Rounds in a few weeks and will add on some additional studies to Phil's next MRI which will happen on Monday the 15th.
Until then, it's start the Exjade and see what that does over the next month or so. When asked how much longer on the Ambisome, Dr. Mayer's reply to Phil was, "awhile". So, there you have it. Awhile, folks. Just another way of saying "hurry up and wait" which of course is easier some days than others. Thankfully, the lymphoma is still quiet which has afforded Phil the "luxury" of waiting.
This week however we had some great news to add to our blog in that Phil's creatinine, at 1.47, was at an all-time low. This means his kidneys are functioning very well with the Ambisone and he can now start the iron-binding medication Exjade twice daily. Mucor, you may recall, needs the iron to replicate. Exjade robs the the Mucor of iron. This is just one more way to combat the Mucor and hopefully send it packing. Dr. Mayer continues to emphasize that Phil has a small area in his brain that is essentially inoperable without risking serious neurological deficits so these medical therapies are his best bet for getting at this infection.
This afternoon Dr. Mansfield must have put about 12 different instruments up Phil's nose in order to "get a better look at things". Not for the pushovers of the world is ENT. I know why I called him a Zen Master. He is one smooth operator. Anyway... Overall, Phil looks great to him and he saw no signs of Mucor. He did take cultures of some purulent discharge (pus) he saw in there (sorry squeamish people) and we'll await those results but there was no ischemia (reduced blood flow) or necrosis (dead tissue). He will be seeing Phil after the next Skull Base Rounds in a few weeks and will add on some additional studies to Phil's next MRI which will happen on Monday the 15th.
Until then, it's start the Exjade and see what that does over the next month or so. When asked how much longer on the Ambisome, Dr. Mayer's reply to Phil was, "awhile". So, there you have it. Awhile, folks. Just another way of saying "hurry up and wait" which of course is easier some days than others. Thankfully, the lymphoma is still quiet which has afforded Phil the "luxury" of waiting.
Thursday, October 21, 2010
Brain MRI
Thanks to all of you who texted and called throughout the day today to share words of encouragement either for Phil's MRI this morning or for the struggles we've had with our ailing kiddos. Our day started out well with BOTH kids heading off to school happy and seemingly healthy, or at the least, afebrile! It always amazes me how restorative eight hours of uninterrupted sleep can be. But who am I kidding? In point of fact it was only six hours but anything more than four feels fantastic! I can't rightly remember the last time I had eight hours of sleep and that my friends is a crying shame.
After some serious head bobbing on my part during Phil's 8:30 a.m. MRI we saw Dr. Kossman for a follow up visit and he too had nothing but good things to say. The creatinine level has stabilized along with the potassium and magnesium levels. Phil is slowly putting on weight at the rate of a lb or so each week. He has a stable anemia which does not need to be treated at this time and is gathering energy day by day. Dr. Kossman is now comfortable with seeing him every two weeks in follow up. Praise Jesus for one less appointment per week!
We were counting ourselves lucky with a full day ahead of us to lounge and catch Zzzz's until my phone rang on the way home to pick up my eldest, Bennett, from school. Seems he'd been sent back to school too soon and was still coughing a bit too much for their liking. Oh well, the best laid plans... So, we picked him up and headed home to wait for the MRI results. It was a long afternoon of teaching our dear boy that staying home from school isn't supposed to be "fun". Did I mention it was a long afternoon? And that it wasn't any fun? For anyone? I could digress here but I shan't.
We eventually got the call report around dinnertime from Dr Kossman and in his typical manner he set me up with what to expect from the phone call with the following, "there are some good things and there are some things we're going to have to make some decisions about."
The good news is that the area around the L eye and the frontal lobe abscess that was removed is smaller and is now just a hematoma (blood clot). It does not represent any new process or danger. The more important area, the basal ganglia, just inferior to that area, is slightly smaller also which means the Ambisone has been effective in that area so far. Exactly what we were hoping to hear.
However, there is more edema (swelling) or inflammation around these two areas as well and they have merged together into one area of edema now, more than in the past. Edema always shows up after brain surgery and brain infection and is to be expected. The normal course of action would be to give a typical patient a course of dexamethasone (steroids) but this is completely contraindicated in Phil's case because of the risk of worsening the situation with the Mucor.
Dr.'s Mayer and Ghosh will be looking over the MRI tomorrow and confering on the next best steps. It is possible they will recommend increasing the Ambisone to 5 days a week from 3 which is what Phil is doing now. They may also add on the Exjade iron-binding agent which had been on hold to protect his kidney function. Remember if you will that Mucor needs iron to reproduce and the iron-binder will deplete Phil's iron stores and rob the Mucor of iron, thus interrupting it's ability to reproduce. Lastly, Ghosh could surgically insert a small catheter into the area of edema if he feels that the fluid is going to continue to accumulate and cause further brain shifting. There is a slight left to right shift beginning now that will need to be monitored. Ghosh has been very clear about his reticence to perform any further surgery deep in the brain because of the serious risks of paralysis associated with it. Tomorrow's update will determine another important step in Phil's battle, yet again.
Phil is typically taking all this in stride although he's not too excited about the prospect of having IV antibiotics 5 days a week. He is understandably getting tired of being hooked up all the time. He knows what his options are and is still willing to take his medicine so to speak but it is definitely getting old. I know how difficult it is to be on this roller coaster and I'm not the sick one. I need to remember that when I want to pull my hair out - at least I still have my hair!
After some serious head bobbing on my part during Phil's 8:30 a.m. MRI we saw Dr. Kossman for a follow up visit and he too had nothing but good things to say. The creatinine level has stabilized along with the potassium and magnesium levels. Phil is slowly putting on weight at the rate of a lb or so each week. He has a stable anemia which does not need to be treated at this time and is gathering energy day by day. Dr. Kossman is now comfortable with seeing him every two weeks in follow up. Praise Jesus for one less appointment per week!
We were counting ourselves lucky with a full day ahead of us to lounge and catch Zzzz's until my phone rang on the way home to pick up my eldest, Bennett, from school. Seems he'd been sent back to school too soon and was still coughing a bit too much for their liking. Oh well, the best laid plans... So, we picked him up and headed home to wait for the MRI results. It was a long afternoon of teaching our dear boy that staying home from school isn't supposed to be "fun". Did I mention it was a long afternoon? And that it wasn't any fun? For anyone? I could digress here but I shan't.
We eventually got the call report around dinnertime from Dr Kossman and in his typical manner he set me up with what to expect from the phone call with the following, "there are some good things and there are some things we're going to have to make some decisions about."
The good news is that the area around the L eye and the frontal lobe abscess that was removed is smaller and is now just a hematoma (blood clot). It does not represent any new process or danger. The more important area, the basal ganglia, just inferior to that area, is slightly smaller also which means the Ambisone has been effective in that area so far. Exactly what we were hoping to hear.
However, there is more edema (swelling) or inflammation around these two areas as well and they have merged together into one area of edema now, more than in the past. Edema always shows up after brain surgery and brain infection and is to be expected. The normal course of action would be to give a typical patient a course of dexamethasone (steroids) but this is completely contraindicated in Phil's case because of the risk of worsening the situation with the Mucor.
Dr.'s Mayer and Ghosh will be looking over the MRI tomorrow and confering on the next best steps. It is possible they will recommend increasing the Ambisone to 5 days a week from 3 which is what Phil is doing now. They may also add on the Exjade iron-binding agent which had been on hold to protect his kidney function. Remember if you will that Mucor needs iron to reproduce and the iron-binder will deplete Phil's iron stores and rob the Mucor of iron, thus interrupting it's ability to reproduce. Lastly, Ghosh could surgically insert a small catheter into the area of edema if he feels that the fluid is going to continue to accumulate and cause further brain shifting. There is a slight left to right shift beginning now that will need to be monitored. Ghosh has been very clear about his reticence to perform any further surgery deep in the brain because of the serious risks of paralysis associated with it. Tomorrow's update will determine another important step in Phil's battle, yet again.
Phil is typically taking all this in stride although he's not too excited about the prospect of having IV antibiotics 5 days a week. He is understandably getting tired of being hooked up all the time. He knows what his options are and is still willing to take his medicine so to speak but it is definitely getting old. I know how difficult it is to be on this roller coaster and I'm not the sick one. I need to remember that when I want to pull my hair out - at least I still have my hair!
Tuesday, October 19, 2010
Super Star
It's been a week of follow up visits and Phil has received rave reviews. As I mentioned earlier, he was called an "outlier" by Dr. Ghosh. When he saw Dr. Kossman earlier this week he had gained a few pounds, was more energetic than he'd been for over a month and was able to make a few jokes with the office staff like in days of old. Everyone remarked at how far he'd come since being discharged from the hospital. He had surpassed all expectations.
We also saw Dr. Mayer who has always been the most serious of the bunch. He kept to character and shared the most recent lab results with us, presenting us with the news that Phil's kidneys are doing well and have stabilized on the current dosing schedule of Ambisone. He too was encouraged and will follow up with us once the results of Phil's brain MRI from Thursday are back.
Today we followed up with Dr. Mansfield, his ENT oncology surgeon. After a brief endoscopy of his sinuses, the good doctor emphatically reassured us that Phil is doing exceedingly well. He called him a "Super Star". He told us that when he first heard of Phil's case, saw his MRI, blood counts, read his history and gathered a gestalt of the whole situation he felt the clinical picture was quite grim. Today however, he feels Phil is in a "superior position" and there is a lot of reason to hope. He said he was genuinely excited and not just trying to give him a pep talk.
Dr. Mansfield explained that he has managed seven cases of Mucor in the last 2 years. That may not sound like a lot but actually, there is no one in the county with more experience. And every one of his patients have survived. Of those seven patients, only one has been an immunocompromised patient like Phil, but she too survived. His point in telling us all of this was to underscore that the decision points for Phil's treatment are still being made painstakingly slow and very thoughtfully. He is a case of one with Mucor on one side of the aisle and lymphoma on the other. There are no studies guiding his physicians on best practices and outcomes.
Interestingly, Phil's case is well known throughout the regional medical community because it has been presented every week or so at Skull Base Rounds, Neuro-radiology Rounds, Infectious Disease Rounds, etc., complete with medical history, scans, labs and surgical video. Literally the best medical minds in San Diego are coming together to make peer-reviewed decisions about the best way forward.
For now, with the kidneys working well and tolerating the Ambisome, the next MRI holds a wealth of information for what comes next. Dr. Mansfield put it very plainly and clearly. We need to know that the Mucor is gone in the basal ganglia or as close to it as we can get before we restart chemo. If we put Phil back on chemo too soon and the Mucor comes back it would be his demise. So, we bide our time on Ambisone and keep thrashing the Mucor with all we can and wait for Thursday's scan to see where we are.
Against a very painful, stressful backdrop of grief and trauma that our family is processing through, we are thankful that Phil is a super star and is giving us reason's to hope.
We also saw Dr. Mayer who has always been the most serious of the bunch. He kept to character and shared the most recent lab results with us, presenting us with the news that Phil's kidneys are doing well and have stabilized on the current dosing schedule of Ambisone. He too was encouraged and will follow up with us once the results of Phil's brain MRI from Thursday are back.
Today we followed up with Dr. Mansfield, his ENT oncology surgeon. After a brief endoscopy of his sinuses, the good doctor emphatically reassured us that Phil is doing exceedingly well. He called him a "Super Star". He told us that when he first heard of Phil's case, saw his MRI, blood counts, read his history and gathered a gestalt of the whole situation he felt the clinical picture was quite grim. Today however, he feels Phil is in a "superior position" and there is a lot of reason to hope. He said he was genuinely excited and not just trying to give him a pep talk.
Dr. Mansfield explained that he has managed seven cases of Mucor in the last 2 years. That may not sound like a lot but actually, there is no one in the county with more experience. And every one of his patients have survived. Of those seven patients, only one has been an immunocompromised patient like Phil, but she too survived. His point in telling us all of this was to underscore that the decision points for Phil's treatment are still being made painstakingly slow and very thoughtfully. He is a case of one with Mucor on one side of the aisle and lymphoma on the other. There are no studies guiding his physicians on best practices and outcomes.
Interestingly, Phil's case is well known throughout the regional medical community because it has been presented every week or so at Skull Base Rounds, Neuro-radiology Rounds, Infectious Disease Rounds, etc., complete with medical history, scans, labs and surgical video. Literally the best medical minds in San Diego are coming together to make peer-reviewed decisions about the best way forward.
For now, with the kidneys working well and tolerating the Ambisome, the next MRI holds a wealth of information for what comes next. Dr. Mansfield put it very plainly and clearly. We need to know that the Mucor is gone in the basal ganglia or as close to it as we can get before we restart chemo. If we put Phil back on chemo too soon and the Mucor comes back it would be his demise. So, we bide our time on Ambisone and keep thrashing the Mucor with all we can and wait for Thursday's scan to see where we are.
Against a very painful, stressful backdrop of grief and trauma that our family is processing through, we are thankful that Phil is a super star and is giving us reason's to hope.
Friday, October 1, 2010
Man on Wire
There's this little journal I carry around with me everywhere I go. Or at least I did. Originally I recorded all the overwhelming information that Dr. Kossman gave us at each and every visit- from the initial diagnosis, to the details of the chemotherapy on through to each hospitalization and follow up visit. Over time it has evolved to include consultations, phone calls, CT and MRI results, lab reports and what read like nursing notes regarding his intake/output, blood sugars, and assorted minutiae. Anything and everything I might need to remember or refer to has been written down "for the record".
I say I "did" carry it everywhere I go because lately, my personal ambition (dare I say, crusade) to record every fact of this medical odyssey (dare I say, nightmare) has finally wavered and I haven't always had it with me. Now I've got scraps of paper everywhere or am relying on memory...sleep-deprived memory. More often than not, when it is with me, I don't reflexively reach for it when the doctors come into the room. Of late, the consults, labs, scans and general information has been coming at us so rapid-fire and the content has been so entirely consuming that to take short-hand notes for posterity seems absurd at best. More to the point, it's hard to write when I've got Phil's hands in mine.
Given all the results we've absorbed lately, I've been thinking about all the things that can't be measured, scanned and quantified such as Phil's sense of well-being and his inner life. Although there are no formal parameters to measure an individual by, when someone is "off" you can just tell. Now I believe Phil TOTALLY gets what is going on with his situation. When the physicians come in and tell him the results of his cultures and biopsies, tell him of his need for surgery NOW, tell him the risks and benefits of procedures etc., I know he gets it in his mind. But Phil is different since this hospitalization, encephalitis and eye infection. His affect is a bit flatter. His emotions aren't full range. That depth you expect with him just isn't there. Some of his response is no doubt secondary to having had encephalitis, infection in the frontal lobe of his brain, and the effects of being barraged with so much medication. While he's still got that sparkle in his eye, he just can't go deep like he used to and still mount the fight he's facing. He can't let a shadow of a doubt in. Yet, miraculously, he has very little anxiety, AT ALL. There is a peace about him even as the physicians speak to him about the grave nature of his situation.
For those of us who are here with him it is clear that he is different but it is also evident that this may be a mercy. We who hear the undiluted facts, who hear the truth without sugar coating over and over again see that an inability for things to sink in too deeply is an incredible mercy that God has given Phil.
This morning he has been moved out of the ICU back up to the corner office on 3 south where he was received with smiles by the nurses on duty. His things were hanging in the closet, his "Kick It's Butt Phil" poster was hanging on the bulletin board where we left it and the door had a piece of paper on it that said 'reserved for P.C.' on it. It is strangely comforting to be back in this room, away from the intensely sick folks in the unit and yet, disquieting to still be HERE at all.
Dr. Kossman called last night on my way home from HERE and we had a long conversation filled with medical details (what I would typically pull over to the side of the road to write down in 'the book ') and philosophical questions regarding Phil's future course. All of his brain tissue cultures are growing Mucor, and only Mucor, the nasty fungus. It is what we all expected but have been praying against. The surgeon had told us that during the operation he saw evidence of a breach from the sinus/orbit into the frontal lobe so we know where the Mucor came from. That unfortunately is what is going on in the deep brain structures as well. It just sucks, plain and simple.
Additionally, there is still Mucor involved in Phil's eye and surrounding tissues, even though they have been stable. For now we are so pleased that he has come through the surgery and has not had progression of his eye issues but the Mucor is still there and it is still a formidable enemy. Our ammunition is Ambizone, a powerful antifungal, and surgery. Currently, the Ambizone is beginning to take a toll on Phil's kidney function and it is depleting his potassium levels. He is taking replacements of potassium routinely and his kidneys are being monitored closely. Surgery is a huge risk due to the substantive area involved and the ever present concerns for healing. And as I've said before, chemotherapy is off the table even though the lymphoma is still there in the background.
The physicians on his case- Kossman, Ghosh, Mansfield and Mayer will be convening a case conference to coordinate the best plan of care for our Iron Man. It is my desire and the hope of Dr. Kossman that Phil go home on Monday or Tuesday for home IV therapy with a home health nurse coming in to monitor his blood draws daily. We know he needs a change of venue, fresh air and his own surroundings. From there, we will keep you posted as always on the next steps as Phil walks this tightrope.
I say I "did" carry it everywhere I go because lately, my personal ambition (dare I say, crusade) to record every fact of this medical odyssey (dare I say, nightmare) has finally wavered and I haven't always had it with me. Now I've got scraps of paper everywhere or am relying on memory...sleep-deprived memory. More often than not, when it is with me, I don't reflexively reach for it when the doctors come into the room. Of late, the consults, labs, scans and general information has been coming at us so rapid-fire and the content has been so entirely consuming that to take short-hand notes for posterity seems absurd at best. More to the point, it's hard to write when I've got Phil's hands in mine.
Given all the results we've absorbed lately, I've been thinking about all the things that can't be measured, scanned and quantified such as Phil's sense of well-being and his inner life. Although there are no formal parameters to measure an individual by, when someone is "off" you can just tell. Now I believe Phil TOTALLY gets what is going on with his situation. When the physicians come in and tell him the results of his cultures and biopsies, tell him of his need for surgery NOW, tell him the risks and benefits of procedures etc., I know he gets it in his mind. But Phil is different since this hospitalization, encephalitis and eye infection. His affect is a bit flatter. His emotions aren't full range. That depth you expect with him just isn't there. Some of his response is no doubt secondary to having had encephalitis, infection in the frontal lobe of his brain, and the effects of being barraged with so much medication. While he's still got that sparkle in his eye, he just can't go deep like he used to and still mount the fight he's facing. He can't let a shadow of a doubt in. Yet, miraculously, he has very little anxiety, AT ALL. There is a peace about him even as the physicians speak to him about the grave nature of his situation.
For those of us who are here with him it is clear that he is different but it is also evident that this may be a mercy. We who hear the undiluted facts, who hear the truth without sugar coating over and over again see that an inability for things to sink in too deeply is an incredible mercy that God has given Phil.
This morning he has been moved out of the ICU back up to the corner office on 3 south where he was received with smiles by the nurses on duty. His things were hanging in the closet, his "Kick It's Butt Phil" poster was hanging on the bulletin board where we left it and the door had a piece of paper on it that said 'reserved for P.C.' on it. It is strangely comforting to be back in this room, away from the intensely sick folks in the unit and yet, disquieting to still be HERE at all.
Dr. Kossman called last night on my way home from HERE and we had a long conversation filled with medical details (what I would typically pull over to the side of the road to write down in 'the book ') and philosophical questions regarding Phil's future course. All of his brain tissue cultures are growing Mucor, and only Mucor, the nasty fungus. It is what we all expected but have been praying against. The surgeon had told us that during the operation he saw evidence of a breach from the sinus/orbit into the frontal lobe so we know where the Mucor came from. That unfortunately is what is going on in the deep brain structures as well. It just sucks, plain and simple.
Additionally, there is still Mucor involved in Phil's eye and surrounding tissues, even though they have been stable. For now we are so pleased that he has come through the surgery and has not had progression of his eye issues but the Mucor is still there and it is still a formidable enemy. Our ammunition is Ambizone, a powerful antifungal, and surgery. Currently, the Ambizone is beginning to take a toll on Phil's kidney function and it is depleting his potassium levels. He is taking replacements of potassium routinely and his kidneys are being monitored closely. Surgery is a huge risk due to the substantive area involved and the ever present concerns for healing. And as I've said before, chemotherapy is off the table even though the lymphoma is still there in the background.
The physicians on his case- Kossman, Ghosh, Mansfield and Mayer will be convening a case conference to coordinate the best plan of care for our Iron Man. It is my desire and the hope of Dr. Kossman that Phil go home on Monday or Tuesday for home IV therapy with a home health nurse coming in to monitor his blood draws daily. We know he needs a change of venue, fresh air and his own surroundings. From there, we will keep you posted as always on the next steps as Phil walks this tightrope.
Monday, September 27, 2010
GPS Surgery
For those of you who don't live in San Diego or follow our local weather, it is hotter than Hades here. I mention it because it has added a little something to the backdrop of our lives right now. While our time together has been sweet it has also been hot and intense. Yesterday Olivia spiked a fever of 102 and this morning my stomach didn't feel so good. It was bound to happen. On top of it all, although Phil has a nice big room, "the corner office" is a full exposure room almost all day and he (and his visitors) tend to roast. An extra fan has been brought in to keep him cool. As if he hasn't got enough to deal with...
After a weekend in which I was treated to sleeping in, being cooked and cleaned for and having all my laundry done by my sister-in-law Michelle, I am back to reality and we have received the results of today's MRI.
There were many words we didn't want to hear when talking with our physicians today, but unfortunately we heard several of them. The frontal lobe process looks ominous and it appears to Dr. Ghosh the neurosurgeon that an abscess could easily be forming. In his words, if he were to send Phil home, something "catastrophic" could " blow up" at any moment that could be devastating if not "life ending". Very graphic words with a clear message.
Phil needs to have a small scale surgery to determine once and for all what the infectious source is in his frontal lobe. There is a deeper brain infection going on as well but those areas are not amenable to surgery. So at this point a biopsy/debridement will be undertaken in the frontal lobe. He will have a high falootin' GPS MRI tomorrow to place markers to use during surgery then have the actual surgery very early Wednesday morning.
On a scale of 1 to 10, Dr. Ghosh rates this a 2 - it aint nothing! We're just going to open up the braincase, remove some tissue and replace it with a small titanium plate, ok? Anyone grow up with Steve Austin, the 6 million dollar man? That'll be Phil, minus the new eye because he gets to keep his. So far that part looks stable.
Please don't take me wrong here with the humor and levity. I am scared and exhausted and wrung out and sick to my stomach. I am also hopeful, relieved to finally be doing something about that damn thing in his head, and a witness to the power of God's people in prayer. My husband is willing to undergo a surgery that carries above average risks and is only a stop-gap measure. But he's still fighting. So, I've got to find things to laugh about. There have been too many tears of late.
After a weekend in which I was treated to sleeping in, being cooked and cleaned for and having all my laundry done by my sister-in-law Michelle, I am back to reality and we have received the results of today's MRI.
There were many words we didn't want to hear when talking with our physicians today, but unfortunately we heard several of them. The frontal lobe process looks ominous and it appears to Dr. Ghosh the neurosurgeon that an abscess could easily be forming. In his words, if he were to send Phil home, something "catastrophic" could " blow up" at any moment that could be devastating if not "life ending". Very graphic words with a clear message.
Phil needs to have a small scale surgery to determine once and for all what the infectious source is in his frontal lobe. There is a deeper brain infection going on as well but those areas are not amenable to surgery. So at this point a biopsy/debridement will be undertaken in the frontal lobe. He will have a high falootin' GPS MRI tomorrow to place markers to use during surgery then have the actual surgery very early Wednesday morning.
On a scale of 1 to 10, Dr. Ghosh rates this a 2 - it aint nothing! We're just going to open up the braincase, remove some tissue and replace it with a small titanium plate, ok? Anyone grow up with Steve Austin, the 6 million dollar man? That'll be Phil, minus the new eye because he gets to keep his. So far that part looks stable.
Please don't take me wrong here with the humor and levity. I am scared and exhausted and wrung out and sick to my stomach. I am also hopeful, relieved to finally be doing something about that damn thing in his head, and a witness to the power of God's people in prayer. My husband is willing to undergo a surgery that carries above average risks and is only a stop-gap measure. But he's still fighting. So, I've got to find things to laugh about. There have been too many tears of late.
Wednesday, September 22, 2010
All In
We are no longer living day to day around here, time is now marked in 12 hour increments. That's how quickly things are changing and progressing.
Phil had another MRI this morning and the cultures have yielded more definitive results. Today has been a big and unfortunately, very difficult day. The cultures show absolute evidence of a mixed bacterial and fungal infection in the sinuses and henceforth in the brain. The fungus is called Mucormycosis and is very common in diabetics and immunosuppressed patients. The MRI shows advancement since yesterday of the infection to involve new portions of the brain. So despite having been on high doses of antibiotics and antifungals, ground is not being gained.
The optimal treatment for this fungus is surgical debridement, which although radical, is Phil's best chance for eradicating the infection. Combined with his antifungals, tomorrow morning he will be having a very involved neurosurgery to remove his left sinuses, his left eye and orbit and portions of his left brain that are infected and non-functioning anyway. It's hard core -- as if it wasn't before. During the next several weeks his chemotherapy will have to be put on hold lest any further immunosuppression allow the Mucor to take the upper hand.
We are awaiting the final debriefing from the team of surgeons and are covering Phil with our prayers and love. We (Jeff, David, Anita and I) are also telling stories and laughing a bit too. Phil is tired and a bit fearful for tomorrow's events but he is also ready to go. He's not one to sit back and do nothing if there's something to be done. He's going for it. Bravest man I know, facing down terrible odds and "fighting a raging fire in the middle of a hurricane".
If Phil were playing poker, I'd say he was all in. Trusting God, and all in.
Phil had another MRI this morning and the cultures have yielded more definitive results. Today has been a big and unfortunately, very difficult day. The cultures show absolute evidence of a mixed bacterial and fungal infection in the sinuses and henceforth in the brain. The fungus is called Mucormycosis and is very common in diabetics and immunosuppressed patients. The MRI shows advancement since yesterday of the infection to involve new portions of the brain. So despite having been on high doses of antibiotics and antifungals, ground is not being gained.
The optimal treatment for this fungus is surgical debridement, which although radical, is Phil's best chance for eradicating the infection. Combined with his antifungals, tomorrow morning he will be having a very involved neurosurgery to remove his left sinuses, his left eye and orbit and portions of his left brain that are infected and non-functioning anyway. It's hard core -- as if it wasn't before. During the next several weeks his chemotherapy will have to be put on hold lest any further immunosuppression allow the Mucor to take the upper hand.
We are awaiting the final debriefing from the team of surgeons and are covering Phil with our prayers and love. We (Jeff, David, Anita and I) are also telling stories and laughing a bit too. Phil is tired and a bit fearful for tomorrow's events but he is also ready to go. He's not one to sit back and do nothing if there's something to be done. He's going for it. Bravest man I know, facing down terrible odds and "fighting a raging fire in the middle of a hurricane".
If Phil were playing poker, I'd say he was all in. Trusting God, and all in.
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