Cancer Journal August 31, 2010

September 2nd, 2010

August 31, 2010

Hi everyone,

It’s been awhile since I’ve caught up, so I thought I would back track a bit to catch you all up to date on Kyle’s progress.

In June we returned to Houston for a week of tests and consultations to determine the next step for Kyle to take. He’d had 2 months of avastin treatments, along with staying on the sodium phenylbutyrate from Burzhinski clinic. He was experiencing considerable pain in the area of his primary colon tumor, so we had scheduled another cat scan and were hoping there was no tumor growth. We were also scheduled for blood work and a repeat MRI of Kyle’s brain.

We stopped over in Dallas and had a nice visit with my brother, Jeff and his family. We left Dallas early so that we could get into Houston by 10:30 for Kyle’s first appointment at MD Anderson for his blood work. This was followed by a cat scan, and his MRI, all in different buildings. During the MRI, I received a call on my cell phone from Dr. Bloom. She said that the CT showed that Kyle’s colon tumor was dead, the other tumors in his lymph nodes and his pelvis were gone, but there was some spread in his liver and lungs. The zinger was that he had developed an abscess at the colon tumor site, because it had grown all the way through the colon wall – so when it was dissolving away it left a thin walled area, and caused a blow out which filled with infection. As soon as he was finished with the MRI, we were required to go directly to the Emergency Center, where he was admitted. It took them until about 3AM to move him to a private room, but eventually we got there. All of our things were still packed in the van in the parking ramp, and I called Homewood Suites to let them know that I wasn’t sure when we would be checking in.

After they got Kyle settled in his room, they also gave him two units of blood, since his blood work had also shown he had low hemoglobin again. So we were up most of that night. The next morning a surgical team came to visit and said that the first thing they would do is insert a drain through Kyle’s backside, into the abscess to drain the fluid. This was done on Thursday. On Friday they performed a colostomy, which diverted his colon above the abscess so that it comes out his side into a special bag. It was the only way to allow the rest of the colon to heal. So far this has been a fun trip. But at least we know that the colon tumor is dead, and what all of his pain was from.

We spent about a week in the hospital, and then were released to go stay at the Homewood Suites for a week. We were to come back for a final check up and consult before they would approve Kyle for the drive home. We also consulted with the Brezinski Clinic doctors. They said that avastin is no longer recommended for Kyle since he has had surgery because it can cause bleeding. So they recommended another similarly acting drug that also limits tumor growth by cutting off the cancer’s ability to build blood vessels to itself. They also recommended that Kyle begin oxcalyplatin, a chemo drug that has fewer side effect than some of the others, since his liver and lungs had continued to grow.

So we waited the week, had a whirlwind Monday of last consultations. The MRI had also shown good news, the brain tumors were dead or gone. I was beginning to pack that night, to leave on Tuesday, when Kyle began to bleed heavily. I ended up calling 911 and following the ambulance to a small nearby hospital. We spent another night in the emergency room, where Kyle received more blood. The next day they transferred him back to MD Anderson and another week in the hospital.

They removed his drain, which they said had gotten dislodged, and put in a new one, so then he had two holes, a literal pain in the butt. He complained about the pain from those drains more than all the other things he’d been through. They did a colonoscopy to try to locate the source of the bleed. They couldn’t find anything specific, just a lot of necrotic, dying tissue from the radiation treatments last spring. They confirmed that all of the visible tumor was dead. There did not appear to be any fresh bleeding, so they just kept him for a few days to make sure his hemoglobin was staying up and released us back to the Homestead Suites to wait another week before we were released to go home.

Our one week trip took us a month, and we are very very grateful to Ken and Carol Clark and to Dick and Lois Verheilles for the donations that helped us to extend our stay and bring Kyle home safe.

We had one appointment with Kyle’s oncologist in Madison after we got home, and made an appointment that Friday for him to begin treatment with the new targeted drug. However, we had been home only a week, when Kyle woke up at 6AM, bleeding again. We got in the car and drove to St. Mary’s hospital in Madison, and back to the ER. His hemoglobin was down to 6, and they gave him blood and admitted him. They did a procedure to cauterize some areas around the tumor, but said that there was so much friable tissue that they couldn’t be sure they’d gotten it all. It also left Kyle in a great deal of pain, to go along with the pain from the drain tube site. They had him on pretty high doses of oxycontin to control the pain, and he slept a lot and faded in and out a lot.

At least we were in town, so Britton and Patty, Rae, and Austin all came to visit – bringing me clothes and supplies from home so that I didn’t have to leave Kyle. They kept culturing his blood because he was running high fevers and they were afraid he had an infection of some kind – so kept him on IV antibiotics also. I told them I wasn’t really worried about the fevers as he has run them pretty regularly the whole time he’s had cancer. If it gets too high, we give him a little Tylenol to bring it down. But they weren’t convinced, so they kept him long enough for the cultures to come back negative three times. They were also trying to find a pain medication dosage that would work for us at home. When they did the cauterization they had also done another CT and said that the abscess was flat and drained, so the day before they sent us home, they also pulled out the drain tube. By the next day, Kyle only needed about half the pain medicine, and by a couple of days after we got home, we’d cut it by a fourth. He was in much less pain and making a lot more sense. So that was another week in the hospital.
The past three weeks, Kyle finally started on the herbivex (not at all sure if I’m spelling that right), which hasn’t made him sick, but sure makes him tired. He’s also had another blood transfusion. Just yesterday he had his first treatment with oxcalyplatin. He has to have those every other week, and the herbivex every week. He is also staying on the medicine from Houston. We began going back for Vitamin C infusions once a week to help his immune system, and to help cope with the side effects from chemotherapy. Our hope is to get him down to no visible disease.

Unfortunately all this hospital time, and with being drained from the treatments, has kept him from working, and our business has dwindled significantly.

On the happy side, my brother, Jay received a settlement from a cycling accident he was in over a year ago (he’s OK now), and is donating $5,000 of it to us and also another @$1000 that he raised by running an iron man competition in Canada. So, now we have the money for the September meds.

On October 1, CancerFuture is holding a golf outing and silent auction at Yahara Hills Golf Course in Madison, WI. Please go to www.cancerfuture.org for information. If you can donate time to work that day or donate an item for auction, please call Jodie at 608-212-8749. If you would like to sponsor a hole or golf, please call Rae at 608-592-3859, or follow the directions on the web site.

On a personal note, Britton and Patty just finished in the show “Into the Woods” at Portage Community Theater. It was great to see them on stage again, and this time Britton had a lead. We really enjoyed the performance. Austin participated with his friend Josh’s band at the Green Lake battle of the bands. Josh spent the summer with us here in Lodi, and is now back to school at Osh Kosh. Austin is back to school at Clarke University in Dubuque, IA. Jason is in Los Angeles in training as a store supervisor for a Pinkberry frozen yogurt store, and also works night shifts at Hilton Garden Inn. He is also lead singer in a band called No Regime, which just competed in Battle of the Bands at the Las Vegas Hard Rock Café. We are very proud of all of them.

We just got back from a week trip to Myrtle Beach, SC. Kyle’s Dad used some of his Blue-Green resort points to get us a unit on the beach across the hall from George and Rose. Kyle didn’t have much energy. He had always wanted to golf Myrtle Beach with his dad. We took his clubs, but he never had a day good enough to try the courses. We also took his wheel chair, so we took him for a couple of nice walks on the board walk, and got to spend some wonderful time with his dad.

Congratulations, you are officially caught up. Thanks for taking the time to read this through. We appreciate all the thoughts and prayers and ask that you hang in there with Kyle for the long haul.

Love,

Jodie

Tags: , , , , , , ,
Posted in CancerFuture Events, Updates on Kyle | No Comments »

March 2, 2010 – Homeward bound from Houston Burzynski Clinic

March 6th, 2010

March 2, 2010

 Hi Everybody,

 Well, today’s the day for the gamma knife treatment.  Kyle is beside me in his bed with this metal frame screwed into his head.  He’s had his MRI, so we are just waiting while they program the gamma knife machine’s computer to do his procedure.  And, I must say, it is a very small planet.  In the space next to us is Trey Rood, one of Kyle’s room mates from the Germany clinic we were at last year!  He is also having the gamma knife treatment on a small brain metastasis.  I knew they were going to be back this week for treatment, but imagine all of our surprise when they strolled into the same waiting room of this monster size cancer hospital this morning at 6:30, just behind us.  So Trey and Kyle are wearing matching head gear.  It’s strange looking stuff, but necessary to hold them immobile during the procedure. 

 Yesterday was an extremely busy day.  We had to run from blood testing, to nursing visit/patient education, then go have his IV put in, because that department isn’t open early enough in the morning, so the patients have to have it done a day in advance, then rush over to his regular radiation appointment.  The first three appointments were at least in the same building, although not on the same block.  The last appointment was a get in the car and drive again appointment, and we barely made it before they closed for the day.  But we crammed it all in because we didn’t want to get pushed back another day for our trip home. 

 Today we had to be here at check-in by 6:30AM.  That meant I had to get up at 4:30.  It’s been awhile since I had to do that.  I had tried to get to sleep early last night, but the folks upstairs had different ideas about that.  I’m not sure what they did, but it shook the ceiling and made a heckuva bang.  I hypothesize that they opened the sofa bed up and just dropped it and let it hit the floor.  But only they know for sure.  Too late, I put in my ear plugs and spent the next hour trying to get back to sleep.  So, I’m a lil’ sleepy today. 

 I don’t know how Kyle will feel after this procedure.  They act like they release him pretty quickly afterward.  But I plan on packing our things myself tonight.  I hope to get the car pretty much loaded, and only have to pack a couple of things in the morning.  We will check out before he goes to his final radiation treatment.  Then we have to stop at Burzynski Clinic to pick up his month long supply of medicine before pointing the car northward toward home.

 Jeff is finding us the Hilton nearest to him, so we can use our month of Hilton points to get a room there for the night.  They are guestroom impaired at the moment, and Kyle isn’t in a position to sleeping bag it on the floor right now.  But we will get to spend a little time with him and his family and are looking forward to that.

 Thursday night we will be in Kansas City.  Joni – are we at your house or George’s?  We left a pillow on the guest bed in your house by accident, so we’d like to grab when we are able to visit.  Just let us know.  I’ll try to call when we leave Dallas, so we can give you a better idea of when we’ll be there.

 Friday and Saturday night we’ll be at my sister, Jill’s in Dubuque, so we can spend a little time with our son, Austin.

 Then, Sunday, late afternoon, we should be HOME.  I hope the driveway is clear enough to get the car into the garage.  Then I get to unpack and sometime this week, take down the Christmas decorations.  We have been gone awhile again, and I just didn’t have time to do it before we left.  Britton and Patty said they’d help come put it away with me.  As Britton says, I’m particular about how it all gets put away, so I can find things again next year.

 Well, that’s about it for now.

 Jodie

Tags: , , , , , , , ,
Posted in Updates on Kyle | No Comments »

Houston Burzynski clinic- Tuesday, February 23, 2010

February 23rd, 2010

Tuesday, February 23, 2010

 Hi everybody,

 I can’t believe it’s been a week since I wrote last.  It doesn’t seem like I’ve been all that  busy, so I’d better try to catch up. 

 Kyle has had 9 of his 14 radiation treatments now, and he’s really feeling it.  The doctor has put him on vicodin every four hours for the pain at his tumor site, but it wasn’t lasting long enough.  It was fading at about 3 hours, then would take about an hour to kick in after he took it, so he was only getting a couple of hours relief out of each pill.  So today when we went in we asked if there was anything that was extended release that he could take.  Now he’s taking a low dose of oxycontin twice a day as well.  None of it even seems to make him drowsy.  But he says it is helping the pain, so if it gets him through the treatments, I guess we’ll have to go with it.  Don’t worry, I do all the driving.

 We met with the gamma knife radiological oncologist yesterday.  They showed us a DVD that explained how they can do brain radiation and not fry your brain.  Kyle has to have a frame pinned into his head (I told him I’d love him no matter how many holes he had in his head), so that it can be attached to the machine bed, preventing movement.  Sounds like a good idea.  The bed is programmed to move his whole body around inside the machine for pin point accuracy.  About 160 weak beams are pointed at the brain tumor from all directions and converge at the tumor.  When they are all combined at the convergence, they are strong enough to zap the tumor in one treatment.  But each individual beam traveling through his head separately is not strong enough to cause damage.  Because of the tumor’s location in the occipital lobe, there is a small chance that some spots may occur in his vision, but virtually no chance there will be overall vision loss.  If you know what Kyle does for a living, this is very good news. 

 The gamma knife is scheduled for next Tuesday, March 2 – moving his final colon radiation to March 3.  We plan on leaving directly from the radiation center on the third, as soon as his treatment is over.  That should be about 10:30, if all goes as usual.  We plan on being home about the 6th.  We will stop in Kansas City, and in Dubuque. 

 We have to go in to the hospital on Tuesday by 6:30AM.  I hope they have a bed for me too.  It’s a whole day ordeal, after which Kyle will probably have one heck of a headache and a desire to come back and do nothing but sleep.  OK by me, if it inactivates that little tumor.

 We really appreciate all of the things everyone is doing for us to help us afford this thing.  I wouldn’t have been able to afford those pain pills if not for the contributions that came in this week.  It may not feel like you are giving large amounts, but every bit counts.  It’s the aggregation of all of those small amounts, and a few pretty big ones, that have come together to get Kyle his treatment this month.  I wish I could say we were through the needy part of it, but that’s probably still a couple of months away.  We’ll cross each bridge as we come to it.  So far, God has provided for each need as we’ve come to it.  We’re pretty sure he’s got the money stashed somewhere for us to finish this thing up and get Kyle better.  I know he wants to get better so he can get back to work and build up our business, catch ourselves up financially, pay back everybody and their dog that we owe money to, and be able to help others again. 

 I did not get a chance today to call Dr. Joseph and ask how much time we are supposed to take off between the radiation and coming back for the other treatments.  I’ll get that done tomorrow so we can know how long we get to be at home.  I know that CancerFuture is giving a wine tasting event for us on March 19th in Lodi, so we’re glad we’ll be there for that, even though we won’t be having any wine.  There will also be a silent auction.  I hear we have lots of items donated and I can’t wait to see the list.  Everyone has been very generous and worked hard for us, and we are so greatful. 

 In the nonmedical department, we drove to a small gulf town called Kemah on Saturday.  It was a pretty nice day, mid-fifties, mostly sunny, bit of a breeze off the gulf.  The Boardwalk Inn there loans wheelchairs, so we were able to get one for Kyle and stroll the boardwalk, watch the sail boats come in and out the harbor, watch people play at the permanent carnival.  There are lots of restaurants and shops as well, so we spent a few hours perusing.  Our only souvenirs are pictures, but it was nice to get out in the air for awhile. 

 Sunday we found a different church quite near here and attended.  (Different as in, not the church we went looking for last week and never found.)  My Pentecostal friends would have been delighted.  They had a great worship team, spoke in tongues, some even sang in tongues, and danced in the aisles.  We’re a bit more demure than that, but enjoyed the joy and sincerity expressed.  The people were wonderful and the message was great.  I’m sure we’ll go back this week. 

 Today Kyle wanted to go someplace fun for lunch.  There has been a costumed man in a Kangaroo suit standing in front of Outback Steakhouse every day since we’ve been here advertising that they are now open for lunch.  Since we still have some gift cards for Outback from Christmas gifts, that’s where we went.  We each had a salad.  Kyle ate all his, and I brought over half of mine back here, where we split it along with our fish and broccoli for dinner.  Some times we don’t eat the meal that’s provided by the hotel, if it’s something that Kyle can’t eat.  Tonight it was pork tacos – bad on so many levels.  So we cooked in our room.  I think the smoke cloud is finally beginning to clear.  At least I didn’t set off the sprinkler system.

 We’re supposed to get an inch of snow, which will no doubt melt the second it hits the pavement, but around here they’re running severe weather warnings and advertising all of the “closings”.  We just smile at all these people talking about how cold it is.  It may not be the balmy weather that Houston usually has, but they have not seen cold until they’ve been to Wisconsin!

 There are a few other people in the hotel who are here for medical treatment.  One woman we talked to today said they’d been here 3 months for her husband’s prostate cancer treatment.   The hotel staff is really good to us long term residents.  There’s one whole family here, kids and all.  But they speak Spanish, so we haven’t talked with them.  We smile and nod a lot at each other. 

 We’ve gone down to the little pool a couple of times and paddled around just for something to do to get out of our room, and to move my limbs.  I’ve never done so much sitting in my life.  We’re thinking that the next time we are here, Kyle’s tumor should be dramatically smaller, he shouldn’t be in pain, and it will be nicer out – so we can get out and walk more, like we did our last trip to Germany.

 That about does it for now.  Only one more week (unless they change their minds again) and we can start towards home.  See you then – well, if you’re in Lodi.

 J  Jodie

Tags: , , , , , , ,
Posted in Updates on Kyle | No Comments »

Houston Burzynski Clinic – Feb. 16, 2010

February 23rd, 2010

Feb. 16, 2010

 Let’s see, where did I leave off.  I think it was last Thursday.  So I’ll start with Friday.

 Kyle had his third radiation treatment.  It takes us about half an hour to drive over there, ten minutes for his treatment, and a half an hour to drive back.  But he’s not in the mood to go exploring or anything, so we just come back to our little place and hang out in front of the TV.   He is also up to his full dose of the PB, 4 times per day now, and he has to take it with food – so I am back to carrying bottles (of medicine) and crackers around with me like when the kids were young.  The medicine upsets his stomach quite a bit, as well.  So, although, we were invited to a Valentine’s banquet at a church Friday night, we just stayed in and watched the opening ceremonies for the Olympics. 

 Saturday we made another try at finding a book store that had chairs, and failed again.  We’re wondering if they get the wrong kind of loiterers around here or something, that there is no place to sit and read in their book stores.  Next time we come, we’re bringing camp chairs.   They are missing the boat, loiterers or not.  I don’t know how many books we own because we started them in the book store and took them home to finish them. 

 So that just left the laundry to do – whoopee.  The hotel has a small coin op, so at least we don’t have to go out.  We just had wet laundry hanging all over the place for two days.  We miss having an outdoor space, like we did in Germany, and a drying rack to hang up the wash.  (Kyle doesn’t like his laundry done in the drier).   Also, watched more Olympics. 

 Sunday we got up early and tried to find this church we had been invited to.  We mapquested it and I gotta say, it’s one of the worse maps ever quested.  We finally stopped at a convenience store and got directions to Pasadena Blvd., then spent half an hour driving up and down, looking for the address.  We found nothing but a gated off industrial park and a Catholic church just getting out.  Eventually we gave up because we would have missed the service even if we’d found it. 

 Since we had already driven an hour all the way around the south end of Houston and paid all the tolls to get there, and it was a beautiful day, Kyle said he felt pretty good, let’s drive over to Galveston and see the gulf.  It turned out to be only another half hour drive.  We drove into Galveston and stopped at the Visitor’s Center – which was closed, but was having a private Valentine’s Party, so we snuck in to use the bathrooms.  Then we snuck back out. 

 Driving along the beach road, we couldn’t help but note the destruction from Hurricane Ike in 2008.  The Visitor’s Center had a high water mark on the front of the building.  But many of the hotels and businesses on the beach were just annihilated.  The windows were still all broken out and they were closed up.  I tell you what, if you were a person with deep pockets, there is some beautiful beach front real estate down here begging to be flipped. 

 We had lunch at a place called Fish Tales, right on the beach.  We ate outdoors and enjoyed the sunshine.  Afterwards, we took a short walk down by the beach.  Mostly we walked to a bench and sat, then walked to another bench and sat, because Kyle just doesn’t have the stamina to walk more than about half a block, and that very slowly.  Even though it was Valentine’s Day, their Mardis Gras parade was amassing along the gulf shore while we were there.  Houston slants their parade toward families however, and the whole family plus their dogs gathered dressed in full Mardis Gras regalia, with everyone sober and behaving themselves.  It was odd timing with Fat Tuesday being only two days after Valentine’s Day, and many wore beads shaped like fat hearts. 

 We didn’t stay for the parade, since it would have meant standing in a crowd for quite some time, and Kyle was pretty tired.  So we slowly made our way back to the car and headed back home, having enjoyed the sea air and sunshine.  We got back in enough time for me to make a run to the nearby Whole Foods and stock up our bitsy kitchenette.

 Monday was President’s Day, so the clinics were all closed.  That meant another day off from treatment, but Kyle didn’t feel like getting out much, so mostly we just watched more Olympics.  I’ve been doing a lot of paperwork also, trying to get everything documented to turn into the insurance companies, and to apply for aid as soon as our taxes get finished.  I hear our accountant has started on them.  When we have those tax forms in hand, we’ll have proof that, regardless of our income, we have been eaten alive by medical expenses, and maybe we can get some help with paying for Kyle’s medications.  None of those expenses showed on the ’08 returns, so we are filing the ’09 returns as quickly as possible. 

 Today we went in to Kyle’s 10:15 radiation appointment.  We came back to the hotel so he could rest, and found that the dishwasher I had run while we were gone, had not drained properly.  So they sent someone up to work on that.  We also found out the hard way, by trying to flush the toilet, that our water was off.  I called the front desk and they said a main was broken on the first floor and it was being worked on.  They offered to send up bottled water – but we decided maybe we were supposed to go out for a little while. 

 We went to visit some friends, whose son, Trey, is at MD Anderson.  He is almost 18 years old, a talented high school football player who has melanoma.  We met them in Germany, and were happy to see them again, we just wish it wasn’t because he was hospitalized here with brain metastasis, for which he had surgery yesterday.  Trey looked great, although he has phenomenal Frankenstein stitching up the back of his head.  He seemed in good spirits, texting his many loyal friends while we were there.  It was great to see Cherie and Charlie, hugs all around.  They will go home tomorrow, but be back on the 28th to begin further treatment for Trey, so we will get to see them before we go home in early March. 

  We do miss all our Germany friends.  We had a little community when we were over there.  That isn’t the case here.  While we are less isolated culturally, we don’t get to know the other patients and families here, as we did in Germany.  We spend almost all of our time in each other’s company.

 This evening I did the ironing.  Watching Men’s Short Program.  Off to bed soon.

 Love to all,

Tags: , , , , , ,
Posted in Updates on Kyle | No Comments »

Houston Burzynski Clinic – February 11, 2010

February 23rd, 2010

February 11, 2010

 Just thought I’d catch everybody up to date.  Our plans have taken a detour lately.  Don’t worry we haven’t abandoned the Burzynski clinic that we have paid so much for. 

 Kyle started his radiation treatment yesterday.  He said there wasn’t much too it, but he was pretty tired afterward.  We came back to the room and he was taking a nap, when my phone rang.  It was Dr. Joseph from Burzynski’s asking that we come back in at 2:30 that afternoon to re-do Kyle’s blood work.  His last sample had come back with a spiked white count, which could indicate either an infection of some kind, or that they messed up the lab work.  So in we went, with thoughts of perforated bowels haunting our imaginations.  Especially when Kyle woke up from his nap in quite a bit of pain from his tumor site.  He went in and gave his blood – again – and we were reminded of a presentation that was being given that afternoon about the workings of the genetic research going on here.  It was an hour from the time we were finished with the blood draw, and Kyle had slept through our lunch, so we went to a nearby Panera for a tuna sandwich, then returned to the clinic for the presentation. 

 Kyle pretty much just listened to it from behind closed eyelids because he was exhausted, but he didn’t want to skip it (believe me I offered to just go back to the hotel.)  I’m glad I listened with my eyes opened because there were very clear, simple diagrams that helped me understand the scientific mumbo jumbo.  It was very informative, and made us feel that we are in a good place to save Kyle.   

 As soon as it was over, we headed back to the hotel, just in time for vegetable lasagna night.  As Kyle hit the sofa for our favorite Wednesday night TV, I noticed that I had a voicemail on my phone – which I had silenced during the presentation.  It was from Dr. Joseph asking me to call her before 5 because she had Kyle’s blood results (that was fast).  His white count was normal again, so no infection (deep sign of relief), but his hemoglobin was down to 8.4 so she wanted to get him into the hospital that night for a blood transfusion.  Well, Kyle wasn’t leaving the couch again that evening, and the clinic was closed anyway, so we left it for this morning.

 As soon as the clinic opened at 9, I called Dr. Joseph and left her a voice mail.  Then we went into MD Anderson for Kyle’s radiation.  Kyle was really dragging today.  His tumor hurt, he was exhausted.  I wished I could carry him.  Dr. Joseph called about 1:00 and told he we were cleared to go back into the hospital for two more units of blood.  So that’s where we spent the rest of the day.  We got back at about 7:00 tonight.  Kyle slept a lot in the hospital, and seems more comfortable now than he was earlier.  Hopefully tomorrow he will start feeling a little better.  We knew the radiation had a possibility of making him feel this way, and also of dropping his hemoglobin.  Eventually it should shrink up that tumor and inactivate it so that it quits bleeding.  That’s certainly the point anyway.  His last radiation appointment is scheduled for March 2 for is colon tumor.  We don’t know yet, when he’s supposed to have his brain tumor done.  That’s supposed to be an entirely different experience though.  With the gamma knife, he will probably have to do only one treatment. 

So, at this time, we are scheduled to be home for a couple of weeks around the 5th of March.  We’re hoping the wine tasting will fall in there sometime before we have to come back to get on with the rest of Kyle’s treatment. 

 They are planning on using Avastin to shut down the VegF gene for Kyle.  Avastin is expensive, and we have to pay for it up front, but the possible good news is, that we think our insurance company will reimburse for it, and the Xeloda in the long run.  That leaves us with $4600 worth of PB to pay for each month he is in treatment, but at least it seems a little less insurmountable.

 We think we have a buyer for Kyle’s car, and we’ve had a couple more donations come in this month, and we are so grateful for everyone’s help and for God’s grace. 

 Bless you all,

 Jodie

Tags: , , , , , , , , ,
Posted in Updates on Kyle | No Comments »

Houston Burzynski Clinic – Monday, February 8, 2010

February 23rd, 2010

Monday, February 8, 2010

 Busy busy day today, but hopeful.

 We began by phoning the radiological oncologist who was supposed to do Kyle’s brain tumor consultation.  They were trying to get us in with her today, because she was leaving until the 15th tomorrow.  Turns out she’s not leaving until Wednesday, but her Tuesday is jammed because she’s trying to get out of town for a conference later Wednesday.  When I called this morning, they explained to me that the Burzhynski clinic didn’t get them the paperwork before close on Friday, so since they got the paperwork late, it would take them a day to clear our insurance for payment, so they weren’t going to be able to get him in until Tuesday – except her schedule was full Tuesday.  So they said they would call back in half an hour and let me know what time Tuesday we were supposed to come in.  When they called back, they said they’d been able to clear his insurance for payment already and could we come in right now.    So off we went, and half an hour later we were in the office of Dr. Elizabeth Bloom. 

 This woman is sharp.  She discussed Kyle’s brain tumor and possible treatment options with us.  As it turns out we have to be put on a list for the gamma knife treatment at the main hospital location of the MD Anderson Cancer Center and it will take a couple of weeks to get him in.  But he is on the list now.  Then she asked about radiating the primary colon tumor.  We told her that we’d had a consultation at UW Madison almost a year ago to see if radiation could be used to shrink the tumor, and they said that, because of where it was located, they couldn’t do it without affecting other organs, etc.  Dr. Bloom said that they could do it successfully here, because their machine allows them to use shields to protect vulnerable areas of the body, and other shields are placed around the body to minimize negative affects.  She said there is maybe a 20% chance they could kill the whole thing, but that she was sure they could shrink it by at least 50%, keep it away from the nerve endings that were causing Kyle pain, stop the bleeding, so he can quit getting transfusions all the time.  This will give the other medicine more time to work, and make Kyle feel better.  Well, that’s what we were looking for when we consulted with the UW guy last year, so we said, sign us up.  I am so ticked at that guy.  He didn’t say, well WE can ‘t do it here, but there are other places, he just said it couldn’t be done, and being the naïve cancer debutantes that we were, we believed him.

 Long story, but the scoop is, Kyle starts radiation therapy on his colon tumor on Wednesday.  He has to go 14 times, so that means he won’t complete treatment until about March 2nd, by my calculation.  Then if it takes another day or two to complete the gamma knife treatment to the brain tumor, we’ll be headed home around the 5th, unless something else unforeseen happens.  We will have a couple of weeks at home, then have to come back here to begin more treatment with Avastin, for probably another month.   They tell me Avastin is not a chemo drug and won’t have those side effects, but it costs a pretty pile of money.  I will attempt to find out tomorrow whether our insurance covers it.    We paid up front for our Xeloda today, but we may be able to get reimbursed now that Kyle is having radiation.  Dr. Bloom said that it should be submitted to the insurance as a sensitizer for radiation, and then the insurance should cover it.  So we met with the Burzhinski finance person (Bridget, for future reference), and they are going to give that a try.  Meanwhile, we still had to pay for it up front until they start getting reimbursed, but there’s hope for that anyway.

 Kyle had been feeling pretty good the last couple of days, but he said that the exam he got today was pretty uncomfortable, so he’s not feeling good tonight.  I’m hopeful that he will be better again tomorrow.  He had been taking less pain relievers, feeling more energetic, and now he is kind of wiped out again.  The PB is supposed to be turning on those cancer prevention genes.  It also depletes the body of glutamine, which starves the cancer cells without harming the rest of the body.  And it carries ammonia and other waste from the bloodstream, and can revert cancer cells back to normal cells.  It’s also been used for Cystic Fibrosis, so somebody should tell the Fredericks.  We couldn’t believe how fast he started feeling better.  I just hope he feels better again tomorrow.

 The Avastin they want him to take later is to turn down the VegF gene which is for building new blood vessels.  His VegF is up too high, and his tumors have been busy little bees using it to build themselves new blood supplies.  So with the glutamine cut in slim supply and the blood cut off, the cancer just goes away.  Well, that’s the hypothesis anyway.  Seems to be working for a lot of other people around here, so we’re taking it one day at a time and hoping for the best.

 Well, that’s it for this installment.  Hope this finds you all well and happy.

 Love,

 Jodie

Tags: , , , , , , , , ,
Posted in Updates on Kyle | No Comments »

Houston Burzynski Clinic- February 7, 2010

February 23rd, 2010

I just wanted to share, since I am not typically a doom and gloom person, a little happy news.
�
As you know, Kyle started on the PB on Thursday.  By yesterday, he felt so much better that he forgot to take the pain relievers that he’s been living on for the past month.  Today, he’s not ready to run a mile or anything, but he has been playing his computer games, and wanted to go walk around the mall for something to do.  It was a small mall, but he did walk, slowly, but we didn’t get a wheel chair like we did last week.  Before the past couple of days, all he did was lie on the couch and was in discomfort all the time.  So, we are thanking God for today’s little miracle, and asking Him to continue to make Kyle better.  He’s bored and restless and tired of sitting in our little apt. with not much to do – but that is such a great sign!   He didn’t have the energy to be bored two days ago.�
�
So, I don’t know exactly where we go from here, but today is happy.
�
:) Jodie

Tags: , , , , , , , , ,
Posted in Updates on Kyle | No Comments »

Houston Burzynski Clinic- Friday, February 5, 2010

February 23rd, 2010

Friday, February 5, 2010

 Hi all,

 We had another long day today.  Not as long as yesterday, but it was still after 6 by the time we got home.  We spent a long time at the clinic today because they have revised Kyle’s treatment plan because of the brain tumor that was discovered by the MRI and confirmed by the PET scan.   They can’t do the full treatment while that tumor is active because it could cause it to bleed and that could cause a stroke or aneurism.  So they want to use radiation on it to shrink it, kill it, or make it go away before they begin their treatment.   Now they want to hook us up with a radiologist at MD Anderson.  They think they can use a gamma knife to pinpoint treat it, and that may only take two or three treatments.  If they can’t do that though, it may take 2-3 weeks of radiation, 5 days per week.  They are trying to get us in with the radiological oncologist there on Monday, because she goes to a conference until February 15 on Tuesday.  If we get the consult Monday, someone else can do the treatments, so then we could do those next week.  After the radiation is done, then we will come home for a couple of weeks while his brain heals, and then we come back here to pick up where we left off.  If they can’t do the gamma knife and he has to have 2-3 weeks of treatment, then it puts us back 5 weeks.  Kyle can still take the PB throughout all the other stuff, so at least we don’t have to put that off.  At least the insurance will pay for the radiation.

 They started him on Xeloda, which is an oral low dose chemo drug, until we have the radiation consult.   It costs about $2200 per month.   At first they were going to charge us for the whole month’s worth, even though the radiologist might tell him to go off of it next week during the radiation treatments.  Since I didn’t have that left in my checking account, and because it’s just common sense, I talked them into just giving us the nine pills that we would need for the weekend.  That way if we end up with a 5 week delay before he can take it again, I don’t have all those funds tied up.  However, if he ends up staying on the Xeloda, we’ll need to spend that $2,200. 

 Of course, Kyle is a very visual person, and the occipital lobe controls vision, so he is pretty upset about the whole thing.   He is a fighter though, and he’s not giving up. It puts more steps in the process, but we will take whatever steps it takes to help him get well.

So, again, we don’t know what happens until after the consultation on – hopefully – Monday. 

 I’m sure God has a plan.  Maybe he’s put Kyle on the PB to help him while we go home to get some more money together.  Guess we’ll have to wait and find out. 

 We’ve been talking about selling the house and downsizing.  We wouldn’t clear much even if it went for a good price, but maybe it would give us a little bit and get us out from under the payments, and leave us a little more for this process.  We don’t really want to move, but that’s not the priority here.  So we may be doing a major garage sale while we’re home, not to mention an interior painting party.  The drugs are going to be majorly expensive, around $15,000/month is my current estimate, and we’ll need four or five months worth from what they’re telling us.  We’ll cross that bridge when we come to it. Our insurance probably won’t cover it because the drugs they are using are all FDA approved, but for other cancers than colon cancer.  It’s their experience that these drugs work well for colon cancer, and they’ve been doing this for 30 years.  Insurance already turned down the Xeloda.  Maybe it won’t be quite that much.  Their price here for the Xeloda is pretty reasonable, compared to the retail price I found on the internet.  Maybe the other drugs will be like that.  I can’t see how it could possibly be less than $10,000 per month.  All that is really senseless conjecture until I can finally drag some facts out of someone here.

 Anyway, thanks y’all for listenin’. 

 Love,

 Jodie

Tags: , , , , , , , , ,
Posted in Updates on Kyle | No Comments »

Houston Burzynski Clinic – February 4, 2010

February 23rd, 2010

February 4, 2010

 Today was a long day, but at least we made some headway. 

 We had to be at the Clinic by 9:30 to pay our $10,000 for the 3 weeks of treatment (thanks to contributions by many of you).  Having written our check, Kyle was finally put on the PB drug.  They start with very small doses and work our way up over 5 days.  Before they put him on the drug, they did one more blood test.  We also got some of the test results. 

 His echocardiogram was good, so no problem with his heart.

His CA 15-3 was 3, which was good.

His CA 19-9 was 438, which was up from 59 in August, so that was bad.

We are still waiting on the CEA and KROZ?,

 His VEGF (a genetic marker) was 89, which is the high end of normal – so they will want to prescribe medication for that, besides the PB.

His EGFR was good.   HER2 was good. 

There was another genetic marker that they didn’t have the test results for.

 The PET scan results were not in yet.

 The MRI of his head showed good vessel flow, however there is also a 1.987 cm lesion in his right occipital lobe, which explains the couple of times lately that he’s seen spots.

This would worry the hell out of me if they didn’t seem so sure here that they can make it all go away.

 His hemoglobin was down to 8.6 again, so this afternoon they sent him for a transfusion of 2 more units of blood.  We knew he was low because of his low energy level, and for once the insurance should pay for that one.  So we were at Memorial Herman Hospital from 2-8 this evening. 

 Tomorrow we have to go back into the clinic to get the rest of the test results and to get their full treatment plan.  Hopefully we will finally know how much the remaining medications will be, so we know how money we are still trying to raise. 

 We were able to sell a piece of our lab equipment today – something we don’t use any more – for $3500, so there will at least be a drop in the bucket.  We are trying to sell Kyle’s car – so if anyone wants a 2000 Dodge Durango, red, in pretty darn good shape – except the AC isn’t working – let us know.  It’s an RT, big engine, will haul anything, tow package, leather, nice sound system, runs great.  We don’t want to let it go, but this is more important, and it’s paid off. 

 Kyle has had a long day and isn’t feeling so good right now, but he usually feels better on the day after a transfusion, so hopefully he will feel better tomorrow.  The PB drug that he is on is supposed to start making him feel better some time soon here as well.  We sure hope so.

 On a lighter note – the sun is supposed to shine on Saturday, then we plunge back into at least another week of rain.  So, I’m hoping Kyle feels well enough for a little outside time on Saturday.  We could use some sunshine.

 Hope this find you all well, especially our friends who also have cancer.  

 Love, Jodie

Tags: , , , , , , , , ,
Posted in Updates on Kyle | No Comments »

Houston Burzynski clinic- February 1, 2010

February 23rd, 2010

February 1, 2010

 Dear Family and Friends,

 Well, we sure appreciate the sentiments that have been flowing our way since my last e-mail.  Some of you have reached into your pockets and we’ve scraped together enough to have Kyle’s genetic tests done today.  Tomorrow we will have his MRI and echo cardiogram done, and on Wednesday we will have his PET scan done.  On Thursday we will get the results of those tests and find out how heinously much the medications will cost, and whether or not our insurance will cover them.  Kyle should be able to start on the PB that day.  That’s the main genetic medicine, not peanut butter.  We could afford peanut butter.  At least then we’ll have an idea how much moola we’re really aiming for.  I thank you all sincerely for listening and caring, and in some cases, coughing up your hard earned dough.  Boy oh Boy, thank you!

 Please do not think we value any of you any less, who have only been able to give your sincere friendship and prayers.  We’ve found out that we have some very caring friends, and we believe that the Lord will provide somehow. 

 We attended a new patient meeting tonight and the woman running it went into great detail and gave very clear explanations of how this process works, and we are very excited.  About 30 years ago, Dr. Burzinski discovered a peptide that is found in all healthy people, that is missing in cancer patients.   The absence of this peptide “silences” the genes that protect against cancer, and as a consequence, the oncogenes that promote cancer wake up and get noisy and start producing cancer cells.  He has synthesized this absent peptide in his PB medicine (short for some long chemical name).  When reintroduced into the cancer patient – the opposite happens.  The oncogenes get switched off, and the protective genes get switched back on.  This reduces tumor size until most of them just go away.  In many cases they will combine this PB with other FDA approved medicines that also work in different ways to cut off the blood supply to tumors, cause apoptosis (tumor death), etc.  Most patients have to be on the medicines for 4 to 7 months to experience remission.  The great thing is, this treatment does not damage the patient’s immune system, like chemotherapy does, it only hurts the cancer cells.  

 Since we got kind of a late start down here, we may be here 4 weeks, rather than the original three that we had anticipated, but we’ll cross that bridge when we come to it. 

 So far, Houston has been cold, cloudy, rainy, and 40-50 degrees, about like Ireland last April.  We haven’t gotten out and about because, A – we don’t have any extra money, and B – Kyle doesn’t have enough energy to do more than watch TV, eat his meals, and go to the clinic.  We tried going to the book store just to hang out for awhile, but there were only 4 comfy chairs in the whole place and they were full.  Since Kyle can’t stand for any length of time, we just came back to the hotel.  So we’re watching a lot of TV.  That’s OK, as long as there’s a cancer fix involved in here somewhere.

 Luckily our hotel serves both breakfast and dinner every day, and Jason got us our room very cheap with his Hilton employee connections, so the day to day living isn’t all that expensive.  Just the medical stuff. 

 So hang in their friends, as we are here.  Thank you to everyone who has helped us, and to everyone who is still digging for dollars.  Our dearest hope is that Kyle will recover and we can earn enough somehow someday, to pay everyone back.  Cancer doesn’t work on our schedule or budget though. 

 Well, I’m going to hang this up for the night.  Sorry this isn’t as interesting as the Europe installments, but mostly we’re seeing the inside of a hotel room right now, so not much fun to report.

 Love to all,

Jodie

Tags: , , , , , , , , ,
Posted in Updates on Kyle | No Comments »

« Older Entries