12-4-05 | 7:14 PM   

Well hello!  Sorry for the lack of journals in the past few months.  The main reason I haven't been writing is because there is nothing to write about!  I am feeling mostly great, without any symptoms of Crohn's.  The only problems I have are related to drugs I'm taking and residual problems from the SCT.  And even those are mostly just migraines...nothing alarming.  My lab results are all great, and I am gaining back the blood cells that make up my immune system ahead of schedule.  I am not completely healthy yet, but I am very close.  Aside from the migraines, my main issue is just being doggone tired.  But what teenager isn't tired?  I am only on a few medications...a narcotic for the migraines and to help me wean off the pain meds I was on in the hospital, a heartburn med, a headache med, low dose steroids to help me wean off of those, and that's it!  I had a colonoscopy recently which showed no visual signs of Crohn's (in my past colonoscopies the doctor could actually see inflammation and other signs of the Crohn's).  There were very limited signs of the Crohn's in the biopsy they looked at under the microscope.  This is awesome news!

So, since I am doing so well at the moment, I don't plan on writing much anymore.  This journal was for when I was sick, and I'm not anymore (at least as far as I'm concerned).  I will probably update the journal once every 1-2 months, and I will of course keep the general website up for those that want to learn about Crohn's and SCT's. 

Thanks to everyone for their concern and support as I recover.  I appreciate it so much!

Happy Holidays!

Jordan

8-31-05 | 11:05 PM   

Hi!  I got back from Durham (and of course Duke) for my 100 day post-transplant appointment yesterday.  I had appointments on Monday and Tuesday.  My Aunt Jamie came to visit us while we were there and we had a great time.  My testing went well -- I had a chest x-ray, a pulmonary function test (PFT), an echocardiogram, bloodwork, and an ophthalmologist appt.  A chest x-ray looks for problems in the lungs and other nearby organs, a PFT is a measure of lung capacity and how well I'm breathing, an echocardiogram is a measure of the heart, bloodwork did tests all over the body, and the ophthalmologist is an eye doctor.  All tests came out with great results.  The pressures in my eyes that were up most likely because of steroids were down significantly.  My cortisol level, which is a measure of adrenal production and is tied to my steroid wean, has gone up, which is good news.  I have been shown to be adrenal insufficient so even though I'm finally off of the prednisilone (the steroids I was on for the better part of 3.5 years -- hooray!), I am now on a brother steroid.  This is called hydrocortisone -- some of you have probably taken it low dose and short term for things like poison ivy or sun burn.  Note the cortisone, like cortisol.  It helps keeps my cortisol levels in check without most of the nasty side effects of the other steroids.  Dr. K says I can go back to school, but I should wear my mask to and from classes and of course be sensible in terms of things like person to person contact, sharing food, etc.  She said it is up to me when I feel can start work, although she would recommend after the middle of September after I get into a routine of school and things.  I was reduced 2 or 3 meds, and will be off 1 more in 2 weeks.  I still have 4 or 5 left.

Thank you -- everyone, everywhere -- for your wonderful support.  Some people have e-mailed me and mentioned that I have not been updating as much.  I'm sorry!  I start school next week and I'll be honest...I probably won't be more than once a month, if that.  Please do not take it as a sign that I do not appreciate everyone's support.  One person e-mailed me and said that they thought I wasn't updating as much now that I didn't need people's money.  Not only was I hurt, but to be honest (again, haha) that couldn't be further from the truth.  One thing is that my updates before were purely because I liked writing and because it gave me a place to vent.  It was also to let people know how I was doing and to help others who were interested in the process, such as those with Crohn's.  It was never about money -- if anything, my family and I still need as much money as we did before.  Any chronically ill patient or parents of one would tell you that the bills don't end just like that when your treatment is over.  We are not actively seeking it like we were before and during the transplant, but if someone would still like to help, it would mean the world to my family and I. 

New pictures are up as well!

Jordan

8-11-05 | 12:14 PM   

Hello!  Being home is great!  I have seen many friends and I hope to see many more.  I am feeling wonderful, but I still have a while to go in terms of getting back to my old self.  I still get a lot of migraine headaches, I am still very tired.  Also, although this is not normal, I just threw up in the kitchen sink!  I guess everyone has their days when they're not feeling well though. I've also developed these funky blister/skin tag/boil/all of the above thingys on my legs that are somewhat worrisome, but look like they are starting to go away.  They go in streaks and in patterns, and when they pop they are very painful and form blood blisters.  Dr. K recommended increasing one of my anti viral meds temporarily until we got a culture from one of the blisters back, and now that that seems to be negative and they seem to not be increasing in intensity she has back off on the dose.  I also am down more on my steroid dose -- from 5mg and 2.5 mg alternating every other day, to just 2.5 mg once a day.  However, I am back up to a full dose of that fentanyl pain patch because half a patch just wasn't cutting it for me (no pun intended).

I've been going to weekly doctor visits at my local GI doctor, and he's been reporting back to Dr. K and the team at Duke.  At the end of the month I'm going back to Duke for my 100 day checkup and if they say everything is going well I should be able to go back to school on time on Sept 6. 

Thanks to everyone for their continued support, donations, prayers, etc!  My family and I very much appreciate it.

Thanks also to everyone who e-mailed me about several broken links that went nowhere (stupid me!).  They have all been fixed.

8-1-05 | 10:59 PM   

Well, after four months, six surgeries, one endoscopy, over a dozen prescriptions, and 28,800,000 total stem cells flooded into me (that's 450,000 per kilogram for those of you counting), I am finally back home in Roanoke.  In fact I am sitting on my couch watching the Sixth Sense with the inimitable Haley-Joel Osment.  I have consequently wet my pants several times in the last two hours.  Despite the fact that most days I am tired during the day, I am for the most part feeling great and I continue to gain more strength and endurance with each day.  I do still have migraine headaches which I am on my old headache medications for -- the dosages have been tinkered with here and there.  I have also gone back on half of the fentanyl patch, which is changed every 72 hours.  I'm settling in and getting started on my summer assignments, and maybe hanging out with some friends.  My sister Abby (HOLLA!) is in Israel right now studying at the Pardes Institute so I am taking care of her cat Ariel.  I have a 100 day check up Aug 28 - Aug 31.  I plan to go back to school on time on Sept 6.  I am still on many medications, but we're trying to get off as many as possible as soon as is safe to.  

8-1-05 | 7:17 PM   

Home!

7-25-05 | 6:15 PM   

Yesterday we went up for a visit to 5200.  I saw a lot of my nurses from the floor, Dr. Szabolcs, and my friend Michael and his mom.  Michael gets out on Tuesday!  That's my last clinic day while we are staying here in Durham, so we'll go up and visit again and throw confetti at him to celebrate his discharge.  I've been feeling fairly okay recently, but I've been getting these pounding migraine headaches ever since I came off the fentanyl patch.  I don't necessarily want to go back on the patch because then who knows how long I'd be on it, but I have to admit it did work very well.  The good news is I get to come home this coming weekend!

7-22-05 | 12:57 PM   

Not much of an update today.  Just hanging out at the apartment and trying to get some homework done or maybe going up to the exercise room.  We don't have to go to clinic again until Tuesday, and that will be our last here before we go home.  Then we start back with weekly visits with my Roanoke GI doc, Dr. Hart.  Exciting stuff!

7-18-05 | 12:37 PM   

Hello!  Sorry I haven't written in a few days.  Not having to go to clinic every day is nice.  Mostly we stay in the apartment and read or work.  Sometimes we go for a walk or my sister likes to go for a dip in the pool.  I would like to tell you I am doing my summer assignments, but because I am such a big procrastinator I keep putting them off.  I know, it's a bad habit and it's something I should probably break -- but I can work on that later. 

Last Friday I had a clinic appt which was fairly uneventful.  Sue said I was doing well and just to continue everything like we are doing it now.  I had my fentanyl patch changed also.  (For those of you wondering -- yes, I have seen the news stories about fentanyl patches, and that is mainly related to people who are on them long term and those who are abusing the patches.  By long term I mean even as long as a few years.  I have only used it since I got out of the hospital on June 20 and I believe my last day will be tomorrow, so that's pretty much 1 month -- not considered long term by any means.  Thanks for asking, though!)  Anywho, where was I??  Yes...I had my patch changed last Friday.  They wanted to wean my off of it, rather than just stopping it cold turkey, but there is no lower dose than the one that I was on.  The manufacturer recommends that you not cut the patch in half because the medicine might ooze out.  Instead, half of the medicine side of the patch was covered up with tegaderm (clear tape), then the patch was put on me like normal, and then another piece of tegaderm was put over all of that like we normally would.  They normally put a piece of tegaderm over the patch just because it's not too sticky and it keeps it in place better when I'm moving around and in the shower and things.   

I have been feeling pretty good in the past week or so.  I have gotten  a few migraines, so I am sort of worried about coming off of the patch, but I know it is best to not be on so many medicines.  I also am eager to finally not have anything attached to my body -- the dressings from my central line site came off on Saturday and it is healing up great.  Like I've said with other things, it is sort of an odd feeling to not have anything fastened or taped to my body.  I've been eating things like pizza and grilled cheese -- things that I never could have eaten before -- and it's great.  But I am still cautious because I am in a phase of weaning steroids and if I were to have a reaction to the dairy we would not be able to tell if it was from the dairy antigen or if it was that I came down on the dosage of steroids. 

Thank you all for all your support, good wishes, and prayers.  Please pray for those who are still on 5200 as well.  Several families who we are in personal contact with are having a rough time.

-Jordan

7-12-05 | 5:11 PM   

The past five days...well...  Having the central line out feels great.  It is sort a feeling of freedom.  I can finally lay down on my bed on my stomach and read a book, something which I couldn't do before because of the position of the catheter.  At clinic yesterday, Dr. Rice (the surgeon) took a look under the dressing to see how it looked.  He said it was looking good and they put just some gauze and tape on it there, told me to go home and take a shower and reapply this stuff called duoderm, which covers the site while still allowing it to breath and ooze a little.  Apparently it's good stuff because Dr. Rice really likes to use it -- it's sort of rubbery, almost like silicon but not quite. 

This past Saturday there was a fundraiser in Roanoke for the Jordan Fifer Fund.  I would like to thank very much everyone who helped out with this -- friends from my dad's work, from my work (Kroger!!), friends from school, friends from synagogue, and friends from the community.  So many people came together to help my family and me -- and I appreciate it very much.  (There are some pictures up of the fundraiser if you like.) 

Today I had clinic with Sue Wood, the main nurse practitioner, and Dr. K.  Mom and I were there from around 11am until around 4pm.  Dr. K said I can start weaning off the fentanyl patch, so they divided it into half.  Its not recommended to cut the patch in half since it could ooze and you might not get the right dose, so they covered half of it with tegaderm, then put the patch on my skin, then put the tegaderm over like normal.  Dr. K said I shouldn't make any changes with the pancreatic enzyme pills that I take whenever I eat a meal.  This is because since I am still coming off the steroids, which effects enzymes such as that, if we change several things at once, we wouldn't know the source if something went wrong.  She did say, though, that next week I could go down to 5mg on the steroids...right now I am at 10mg.  She said that I shouldn't put in any sort of port -- we had been wondering about that now that my central in is out.  It is very hard to draw blood from me peripherally for many reasons, so we asked if I was going to be having a lot of blood work in upcoming months, would it be a good idea just to put a single lumen port in.  She said the labs are going to be chemistries, which can be done with as little as a finger prick of blood and that she doesn't want to put a port in.  And for the things that do need more, it would be a few weeks or more in between each test and hopefully that would give my veins time to "rest and recover".  Ah yes, and starting with this Friday, I get to go to a Tuesday-Friday clinic visit schedule, rather than every day! 

Today is day 40 for me, and Dr. K was originally planning to let me go home to Roanoke at day 60 if I was doing well.  I would still have to go to clinic with my GI doc, Dr. Hart, there once a week, but at least I'd be home.  Well today she said if I was doing well as soon as a week from this coming Tuesday, she'd  be comfortable with me going back to Roanoke.  Like I said, I would still have to see Dr. Hart once a week and have labs drawn and all, but still.  I don't think we will leave that soon -- probably it will end up being more like the end of the month, so that way my dad can help us steadily move things when he comes each weekend so it's not such a big ordeal.  Dr. K said then after that, they (or even in Roanoke possibly) do all of those tests that I did as pre-tests (colonoscopy, chest x-ray, breathing, etc as well as a general checkup) at 6 month intervals for 2 years, and then yearly then on out for pretty much my entire life.  They also do blood tests like hormone levels, endocrine levels, chemistries, blah blah blah.  Since I got my own bone marrow back into myself, they said I shouldn't have to have my vaccines again, but they said they can test to see if it is necessary after 6 + months. 

In other news, I shaved my head.  Well, to make a long story short, it was really more of a combined team effort of mom, Abby, and me.  I had dyed my hair awhile back before it mostly fell out, and now it was growing back in with my normal dark hair below yellow/red hair -- it wasn't going to be pleasant.  So...figured why not start with a clean slate -- a nice, shiny, round, one.

7-7-05 | 8:42 PM   

Yesterday I had my central line in my chest taken out.  A piece of hardware on it meant to secure it down had been digging a hole into my chest, so they wanted to get it out.  I don't have many (or any) IV medicines any more, and labs draws will have to be done by peripheral stick.  It feels good to have the line out, though.  I went to clinic today and the nurse practitioner said I was doing just great.  I was really tired today so I took like a 3 or 4 hour nap, but that's about it.  For July 4th, my mom and I went to the Durham Bulls Baseball Stadium and saw a baseball game and fireworks.  My sister and her friend, Laurence, met up with us there later in the evening just for the fireworks.  Last week I had called up the ticket office and pretty much just said that all I wanted to do was see the fireworks show, and that I wasn't allowed to be in big crowds.  I knew that had those skyboxes and things and I asked if there were still any open -- that I didn't need any fancy food or anything, just a place to be out of the crowds to watch the fireworks.  Well before I knew it, Tim, the director of group sales had lined up 5 free tickets to a skybox for me and my family for the game, aftershow concert, and fireworks.  As if that wasn't enough, when we were there the staff was super nice and gave us food, hats, and programs, and brought up the mascots to take pictures.  The Vice Pres. of the baseball team also came up to meet us.  So that was really great.  Thanks to everyone there.

7-4-05 | 8:47 AM   

I have been going to clinic everyday and the nurse practitioners say I am doing very well.  I am still wearing the fentanyl patch for my headaches.  I think it sometimes wears off one day too early so I was going to ask about increasing the dosage, but we'll have to see.  The area around where my central catheter comes out of my skin was hurting, and when the nurse changed the dressing in clinic yesterday we found out why.  Two stitches that secure a piece of hardware to my skin to anchor the catheter had come undone, so the piece of hardware was constantly digging into my skin and the catheter could freely be pulled up.  I couldn't see it obviously since I was lying down, but the nurse and my mom and the nurse practitioner said the piece of hardware had dug quite a little hole there on my skin.  So they put what's called a wet-to-dry dressing on.  On the skin is a piece of packing (essentially fluffy gauze) that was wet with sterile water, then the piece of hardware, then on top of that was a regular piece of gauze.  Some antibiotic ointment also.  So when I go into clinic today I will have to have the dressing changed again -- everyday until we can figure out what to do about it or until it just heals by itself.  My oldest brother, Craig, was down here to visit on Saturday and Sunday, and my other brother, David was here Sunday into today.  Abby gets back into Durham from a friend's wedding tonight and we can go see the fireworks tonight at the stadium.

6-30-05 | 11:11 PM   

Clinic visits have been quick in the morning -- they say I am doing well.  They said I had the beginnings of a yeast infection in my mouth so they prescribed some little lozenge type things to put on my mouth and dissolve.  The infection hasn't done anything bad yet but they want to prevent it from getting bad.  The lozenge things leave a bad taste in my mouth and conflict with things like OJ and lemonade.  I am also still using that fentanyl patch for my headaches and possibly bone pain.  The bone pain is probably gone, that's why we stopped the toradol, but with all the medicines, stress, and residual Crohn's I still have it here and there.  The patch is really more for my headaches, and it has been working pretty well.  The only side effect I can see is that it makes me tired.  ]

Tomorrow I have labs to pull from my central line so we will find out some info from that (I hadn't been pulling labs the past couple of days).  One of the pigtails of my central line, the "red" one (they are color coded to make it easy), won't pull back.  I can flush it fine, but I can not pull back blood out of it no matter what position I get in.  I have learned that my lines are very positional, meaning that lying down on the bed and raising my arm and things can change how it flows.  The "blue" line pulls perfectly most of the time and flushes fine too, so I don't get it.  I will ask tomorrow at clinic.  I also have some sort of breathing treatment that is standard to get once a month -- I don't really know much about it but I guess I'll find out tomorrow. 

There's going to be a sidewalk/sample sale at Towers Shopping Center, in front of Kroger, on July 9^th from 10:00 – 2:00.  More info to come on what sorts of things will be there, but there will be donated food, drinks, and merchandise, all of which the proceeds go to the Jordan Fifer Fund.  Thank you to all who are / will be helping with this and really to everyone who is so supportive of my family and me.  Thank you for your prayers, and please if you are praying -- please keep in your thoughts the other patients and families on 5200 who are going through the same struggle now.

6-28-05 | 5:26 PM   

Just an update to say hey and that I'm feeling good.  Went to clinic today and saw Dr. K who said things are looking good -- she took me off the toradol, decreased my hydration so it's only 10 hours, lowered my steroids, and made the lasix only once a day so I don't have to pee so much.  There's going to be a fundraiser on Sat, July 9 at the Towers Kroger from 10am - 2pm -- a giant yard sale.  Stay tuned. 

6-24-05 | 10:37 PM   

The past few days have been clinic visits everyday in the morning.  I have my hydration, an IV bag of fluids that runs for 12 hours overnight, and it ends in the morning.  When it end I flush the line it is running into and then draw whatever blood the doctor's ordered that day -- they gave us slips for the whole week.  Then I take my slew of medicines, get ready and we're out the door.  My sister is here with us (hooray!) so we take her to work and then we go to the hospital for clinic.  After I sign in and drop off the labs, we wait in a special room called the Fish tank Room (it used to have a fish tank in it apparently, now it only has a painting of one) that is only for people who have recently have BMT's/SCT's and are not sick.  By sick I mean have an infection or something.  So then once your labs have come back you meet with the one of the nurse practitioners (or a few of the) and see how things have changed since the past day.  Once a week I actually meet with one of the doctors, like Dr. K.  If anything is funky with my labs or with me they can treat it right then and there in the clinic -- like I might need platelets or antibiotics or something -- and if not I get to go home.  So for example one day this week they did cultures on my lines and it looked like I had something growing on my central line, so they did an infusion of antibiotics just in case.  The cultures haven't been growing anything since, so I guess we're good.  And the past couple of days my labs have been great so we've gotten to leave early.  Today I didn't have any labs to do.  Tomorrow my dad is taking me -- I have to go every day including weekends.  I don't know how much longer I have to do the hydration overnight -- I can ask Dr. K when I see her on Tuesday, but that's pretty much the most annoying thing at this point.  I had been having bad headaches that seemed to be getting better, but I got another one tonight.  In the clinic I had tried something called fentanyl lollipops -- little pops that have medicine in them so when you suck on them over time you get relief.  They didn't help much -- I hadn't asked for them in the first place, they were more given to me, but anyway now I am trying the same medication but in a patch.  It releases a little amount slowly over time.  So when I felt a bad headache consistently for a few hours tonight I had my mom put the patch on my shoulder.

6-20-05 | 9:39 PM   

Okay so I'm finally out!  I was discharged today!  We tried not taking any oxycontin to see if I would actually have bone pain, and I had a good night.  I slept well and didn't have any troubles, so they felt comfortable discharging me.  Although today I felt sort of achy and just tired, and I had a bad headache.  Everyone on the unit gathered and threw confetti as my mom and I walked down the hall.  I have a bunch of pictures up from it.  So I am in the apartment now and I have clinic visits every day for awhile.  I have fluids running at night just to keep me hydrated, so this is in a backpack and runs for 12 hours each night probably for the next 20 days.  I have a ton of oral meds -- I haven't even looked at them yet but I need to go take them.  I am pretty tired so I'll keep this short, but that's the good news.

6-18-05 | 11:15 AM   

Well three nights ago I got that horrible bone pain back again.  It was in my ankles and feet.  It started out small and grew -- several times I have used the analogy that it spread like a weed.  They had been weaning me off of the PCA pump with fentanol so it was smaller doses when I pressed the button.  So it was practically like water whenever I pressed it and the pain just kept getting worse.  So finally they just turned the pump off and gave me a larger dose of fentanol by IV push.  This, too did nothing.  We might have tried this twice -- I don't remember.  Then I finally dosed off for awhile (mind you this was in the middle of the night), and I woke up and still had the horrible pain.  I pressed the call button and another nurse came in who said she was helping out while mine was giving chemo to another patient.  She was suggested tylenol and some heat packs, and I'm lying there sobbing thinking to myself, "listen, lady -- I don't know where you came from, but we've tried all this stuff already and it doesn't work".  But I didn't say that, and I tried the heat packs only to prove to her that it did nothing -- which I shouldn't have had to have done -- the nurse should have listened to the patient (but that's another story).  Finally I got some dylaudid and ativan and even this was not enough, but it was a half dose (go figure why it wasn't enough) so I got more in a few hours and it helped a little more.  By the middle of the morning all of the medicines had caught up with me and I was so out of it anyway -- dosing in and out of sleep and making no sense when I talked!  haha

The next night the same thing happened in a similar routine, so the next day the docs put me on toradol every 8 hours for the pain.  So they started that as a scheduled pain med and then kept the dylaudid and ativan with a full dose (keyword: full) if I need it up to every two hours.  My first dose of PO toradol I threw up with -- well at least we thought it was the toradol.  I had been feeling really dizzy and lightheaded and then I threw up and felt better, so who knows.  I haven't thrown up with any of the doses since, so I could've gotten used to it or it could've been something else.  But anyway that seemed to work for the day, and then at night I got the same pain back again.  You guessed it -- dylaudid and ativan.  So now we are up to yesterday and I've had several days of various narcotics in various doses and I am completely zonked.  I woke up in the morning and did some things but by mid afternoon I just couldn't keep my head up.  I slept off and on for awhile because the slightest thing would bother me, and then I started sleeping more deeply.  My mom and my nurse said I was saying stupid things in my sleep but I suppose I can't account for that.  Early evening and I wake up to Dr. K staring down at me.  Now I'm drowsy, loopy, tired, all of the above...and here she is with her team to do rounds.  It was pretty funny.  After I woke up a bit and came to my senses (as much of them as I originally had at least), Dr. K talked about the medical plan and then actually stayed just to chat for awhile about non-medical things.  OOOHHHH -- I forgot to mention Abby came in yesterday with her cat Ariel, who's staying at our apartment while she's in town.  So she was here and we were all just talking for probably like half an hour.  That's what's cool about Dr. K -- she's not the type of doctor that's in and out and you never see them again.  At some points she stays with you so much you don't even have enough to say --- but it's a good thing!

They're still trying to get me on as many PO meds as possible, so I just took a boatload of pills.  In addition to the toradol, Dr. K put me on scheduled oxycontin (i think maybe every twelve hours) for the pain.  She believes that it is a serum sickness reaction to the ATG that I had a week or two ago.  The ATG is made partially from horse protein, so it is common if not always that people react to it.  I did during the infusion when I got low blood pressure and intense bone pain, but Dr. K says it's common to also get a 'post-reaction' one to two weeks after getting the ATG.  So she thinks it is the ATG, not the neupogen, which we had thought before.  Really it could have been a combo of both before, but my white cell counts are down to a more normal level now, so that's less likely. 

Today I am feeling relatively well, but that's controlled by all these drugs.  I don't even mean the IV stuff I always have running -- that stuff is antibiotics, antivirals, anticlotting, anti-this, anti-that.  I mean if I wasn't on all this pain med who knows how I would be feeling.  By now I could be feeling fine.  Or I could still be in agonizing pain.  So for that reason Dr. K and I decided rather waiting for the pain to come and then using a big rush of some IV pain med, I would stay on scheduled doses of oxycontin and toradol for a few days (which she says is the typical amount of time this reaction lasts), and then come off the drugs and see how I feel.  They also gave me a bolus of steroids to ease any inflammation....and you know how I feel about steroids.  I'm finally down to 20mg a day and we're slowly weaning so I should be done by the end of July I guess.  Sounds about right....haha I have no idea but I think somewhere around there.

Obviously this all means I am not getting out as soon as expected, but hopefully still this week.  Dr. K said it is really up to me in the sense that if I am feeling well enough to go, I can go.  The narcotics I'm getting have to be given in the hospital, so until the bone pain is gone or at least managed to something I could take in a pill, she said I have to stay.  Otherwise, that's about it.  I had some virus when they tested my urine, but Dr. K said it was common and just to drink more since they were already giving me anti-viral meds.  My appetite is definitely coming back, but still not all the way there, but that's still a good sign. 

6-14-05 | 9:42 PM   

Well there was an article in the Roanoke Times today about me.  You can go and read that if you want.  Today Dr. K started switching me to more PO meds so I would be ready to be discharged.  She also is backing down my TPN so it is not 24 hours a day.  Right now I think it is 18 hours, and then it will be 12 hours, and if I am eating enough when discharged then I won't have to have the TPN when I go outpatient.  But right now I am just eating a little bit -- my appetite is slowly gaining.  I felt good today, just tired and right now I have a headache and a stomach ache.  I got a pass to leave the hospital again which was nice.  We went to the apartment and got some lemonade.  Things look good to get out on Friday but we will see.  Then I will still have tons of outpatient visits for different treatments and labs and things. 

I know a lot of people are praying for me, so I would like to please ask if you could to pray for the other patients and families on the floor.  There are a lot of sick children here, many or most more than me.  Many of them face challenges much greater than mine.  As I have stayed here, I have learned than some may not walk off the the unit.  Thank you.

6-12-05 | 6:17PM   

Today my white cell counts were even higher -- something around 17.8.  They were even flagged as being too high!  Dr. Szabolcs cut back my neupogen so I would not put out so many cells.  That's what the neupogen is used for after all, but they never expected my counts to rise this quickly.  It normally takes several more days, if not weeks.  So today was my official engraftment day!  This is because it has been three consecutive days of my ANC over 500 (today it was around 20,000) and also me having no major symptoms.  In fact I've been feeling great -- today I got a two hour "pass" to leave the hospital and go take a shower at the apartment.  I had to wear my mask, but that is no major deal because I have to anyway in the halls and lounge and all or whenever I leave my room.  So that was nice. No IV to deal with for a little while.  Now I am back hooked up, my dad (who was here for the weekend) just left, and I am going to watch the Simpsons in a little bit.  Dr. K starts as the attending physician tomorrow so she might have some different opinions on things, but I think it still looks like I could get out of this joint by the end of the week.  The doc has started weaning different things, like my PCA pump and later in the week said plans on switching some of the IV anti-viral/fungal/biotics to oral so I wouldn't have a pump at home.  I finally got a little bit of an appetite back this weekend, so I had some macaroni and cheese and mashed potatoes (gotta have the mashed potatoes) that a group provided for the parents and patients on the floor.  I still can't taste some foods quite right -- they just taste bland without any taste.  Either that or some people say that after their transplant they develop totally new tastes.  I don't want to not like macaroni and cheese, that's for sure.

6-10-05 | 10:00PM   

An additional update!  When Dr. Szabolcs (who has been on of my rotating attending physicians the past two weeks) came by for rounds I got some additional news.  In addition to my white cell count being 1.2, my neutrophil count was 696.  (Neutrophils fight against infection and represent 50-60% of the white blood count.)  Anyway, one of the lab tests done is an ANC, or absolute neutrophil count.  When this count gets to be greater than 500, and stays that way for 3 consecutive days, the stem cells have engrafted (engraftment is when the stem cells transplanted into me "take" or are accepted by me and begin to produce new blood cells.  So if the count stays above 500 (which it is now) until Sunday, today would be considered my engraftment day!  This is surprisingly quick.  We'll see!

6-10-05 | 12:17PM   

First off, for all you cruciverbalists and logophiliacs out there, the proper spelling of the narcotic I have so commonly referred to is dilaudid, not whatever funky ways I might have been spelling it.  My apologies to both Merriam and Webster. 

Uhh otherwise -- the past two nights I have been having some really bad bone pain from the IV neupogen.  I've been getting it since the day of my transplant but I guess it took a few days for it take effect (see below).  So two nights ago I developed this horrible pain in my thighs that spread, much like a weed, to my waist, back, ribs, arms, and legs.  It was like when I was getting the shots where I could feel the blood pulsing and you feel like you could take your pulse from it.  So I went through that night playing the "what medicine will work for the pain" game with the doctors.  First I tried tylenol, then quickly moved to dilaudid and ativan (the ativan because I sometimes throw up with the dilaudid).  Then.....since I was still hurting and couldn't have more dilaudid, I had fentanyl, which doesn't really take away the pain, just makes you not care about it.  Long story short, it was a long night.  That morning the doctors and I decided to split the neupogen dose into 2 doses in the hopes that maybe it would lessen the pain.  They gave me a PCA pump again, but this time with fentanyl.  It wasn't a continuous drip, just when I push the button I would get a little bit of medicine.

Now today after having two half doses, each one with accompanying pain but having the PCA pump, I am feeling better.  They switched the pump to be continuous drip and I can still press the button every 6 min as needed.  Most of the time I get the pain soon after my neupogen dose and it is seeming to last a few hours. 

In some good news, my white cell counts today were 1.2.  Now you're thinking...."so what?".  Well three or four days ago they were "<.1", then one or two days ago they were ".5" and now they are 1.2.  The docs/nurses don't make lightly of this...they are very happy to see any slight increase in my white cells.  It means my immune system is coming back and getting closer to engraftment.  (Engraftment is when my infused stem cells are totally accepted by my body.  It's largely based on watching those white cell counts, but there are other lab values they look for.)  

In other good news, my next door neighbor in 5206 got to be discharged today.  My mom had become friends with her mom. Most of the patients and/or parents have become at least somewhat friendly, but I guess they struck it off.  Courtney is 18 and her mom's name is Debbie.  The nurses, doctors, and patients able to all lined the hall and threw confetti and blew bubbles at Courtney to celebrate her discharge. 

6-8-05 | 10:27PM   

Short entry tonight.  Good news is it looks like the pancreatitis is getting better.  My amylase and lipase had been way high in the bloodwork -- that was what flagged the doctors to something being wrong -- but now they are lowering back down.  The docs let me back on clear liquids today which was a welcome relief.  I am actually not really that hungry for food anyway.  I guess it is the chemo -- apparently it happens to a lot of people and the nurses and doctors are prepared for it.  When the nurses see that you start to not feel like eating (for me it was around my transplant day) they start you on TPN, which stands for total paraenteral nutrition.  So you get all your nutrition through your veins (para-away, enteral-intestine).  When they see you are eating enough they can stop the TPN. 

6-6-05 | 6:02PM   

My brother and my father have been here the past few days - my brother left two days ago and my dad left yesterday.  In the past few days in general I have been nauseous, although I have only thrown up a few times.  They give me ativan because it is the only drug so far that has helped my nausea, but it also makes me drowsy if used in a low dose or totally knocks me out if used in another, higher dose.  I don't have the PCA pump with the pain medicine anymore b/c I don't really need it -- all that ATG pain is gone -- but I still do get a lot of headaches and things.  I've been getting these really bad night sweats where I will wake up in the night (it's the hospital -- you do that a lot) and my shirt and the pillowcases and all will be soaked.  It's really annoying and of course uncomfortable, not to mention it smells like all of the medicines that are infusing through my body (it can't even smell like a normal soccer player, for pete's sake).  The doctor switched me from IV steroids to PO (per oral) thinking this would help, but just today we found out I have pancreatitis.  This means he doesn't want me eating or drinking anything for awhile, which also means he took away as many of my PO meds as possible (switching the steroids back to IV).  All of this is just toying with my adrenal glands, and tonight I will probably soaked even more.  Gross.  As for the pancreatitis he said since it is not dangerous at this point and, and b/c they did a CT scan of the abdominal and chest area....which found nothing, the only thing to do is rest with NPO and wait it out.  This morning, though the first thing that happened was that when I was showering, I got really faint and like I was going to pass out.  I called for my mom in the middle of the shower and just had to sit down for a bit before I felt better.  And I'll tell you, there's nothing worse than having to have someone help you walk when you're wet, naked, and feel like you've been drinking for way too long.  Then soon after than I got this horrible stabbing pain in my lower right and left flank, and in my abdomen.  I eventually got some dylottid for it and it has been better since then.  I'd been having pain in a certain area in my abdomen whenever I would sit up, but this was in a different location.  So the doctors come for rounds and, long story short, just say to wait it out and see if it gets better.  This is apparently extensive medical treatment at its best.  They said I could get more pain medicine if it keeps hurting, but aside from the fact I don't want so many chemicals and all, I'd sort of like to know whats going on inside of me. 

Some people from the The Rick Hendrick Marrow Foundation came to the unit a couple days ago.  I had been asked if there was anything they could bring for me last week, so I knew they were coming.  Still, it was really nice.  Several members of the Hendrick pit crew, their publicist I guess, and the child life lady came.  They gave me this bag with a lot of Nascar stuff obviously, but also this awesome Naploean Dynamite poster and the Big Fish DVD.  They brought some cool clothing and hats and things too.  It was really nice of them.

So as of now I am just really tired and again sort of nauseous.  Since I am NPO I have a funny taste in my mouth, but I guess there isn't much to do about that besides swish some water around or something like that.  I try to walk the floor (it is a right angle, so one 'lap' is back and forth) because Dr. K said that is the best thing I can do for my part to keep healthy.  The child life people give you these little feet shaped beads for every 5 laps you walk and you put them on a string to hang on your IV pole.  They do the same thing with procedures -- like when you have surgery, or when you have a PCA pump, or when you have your Transplant day -- for all these little things you get a different type bead that goes on a necklace with your name on it.

Thank you very much to everyone who has signed my guestbook and e-mailed.  I appreciate it a ton and I read all of it, but please don't feel hurt if I don't respond back personally.  Even though I don't really do much here in the hospital, I just often feel fatigued and, well, yucky.  But thank you, thank you, thank you.

Someone asked about the address here at the hospital.  With all the cleanliness stuff and routing and all, the best way to mail something is to the address on the contact page.  My mom checks the mail at the apartment every few days.

6-2-05 | 9:48PM   

Today was the big day.  The actual infusion of the cells is actually somewhat anticlimactic, but I guess it is the idea of "starting" over that is the big umph.  I got my cells sometime in the afternoon -- I'm not really sure on the specifics because I slept through most of it -- but the infusion was about 45 min long.  I was premedicated with benedryl and tylenol, and I was nauseous from the dylottid so I also got some ativan, which all in all knocked me out for the afternoon.  It also made me pretty irritable when anyone would try to wake me up or do simple things like move a bottle of juice.  For the most part, though, transplant day went pretty smoothly.  No reactions or anything.  I get to pick out my own little certificate from a book of ones they have here on the floor and we took some video and pictures and things.  By now, I think the plan was that my white cells would be totally if not very close to being ablated, but I am a bit slow at that (in a similar way at being very quick to produce them I guess).  So instead I received my cells back without my immune system totally wiped out (several people have asked this), and honestly I'm not quite sure how that will help.  But apparently they're not concerned...I guess my counts are low enough that it is okay.

So right now I am still allowed out of my room to walk on the unit, just not off of it.  In fact my mom got me a hamburger at Wendy's -- the doctor said it was okay as long as we made sure it was cooked fresh (no finger tips).  But since I have labs drawn every morning anyway, one of these day I will probably have to start the contact isolation as protection for the next few weeks.

6-1-05 | 10:22PM   

My first dose of ATG was Monday night.  It was about an 9 hour infusion.  It was absolutely horrible.  They except that most if not all patients will have reactions to the ATG because it is partly made from horse protein.  It is reasonable to say that all patients get a fever, most get hives (whether they itch or not), achyness, chills, etc.  My highest fever got up to around 104 F°, I got horrible ( I mean horrible) bone and joint pain, which they said was one of the more uncommon reactions.  My blood pressure dropped quite a bit so they were worried and couldn't give me any pain medicine until they had gotten my blood pressure back up to a reasonable amount, which took the whole night.  They put me on dopamine, which I am still on, to get my blood pressure up but like I said it didn't even stabilize at a reasonable level until the morning and then I was able to get some medicine.  The medicine they gave me, delottid (spell), makes me throw up occasionally, but its the best medicine that works for me so it is a trade off.  There were some others they tried but they didn't work for me as well.

Yesterday I had my final chemo dose and more ATG.  They boosted my solumedrol (steroids) up to 300mg, which is a way high dose, to prevent another bad reaction.  Even so the docs say most people have their worst reactions on the first dose, the so called "sensitizing" dose.  The added steroids, plus benedryl, tylenol, and the other tons of drugs I have going for various other reasons helped a lot to reduce the symptoms.  They also added a PCA pain pump which gives a constant small dose of the delottid to keep the pain away, and if it gets to be too much I can give myself an added burst.  The chemo also has been giving my significant eye pain -- this kind of stabbing in my eyes -- so it is for that too.  I've also been getting nauseous, mainly from the delottid, but also from the chemo, so I have been getting ativan for nausea.  Typically they give another drug called zophran, but that also hasn't helped me like it helps a lot of other people.

Tomorrow I get my cells back transplanted into me through my pheresis lines.  My brother, Craig, and my dad are here for a few days and of course so is my mom.  I believe my Rabbi is also coming in to visit for an hour or two.  Right now I feel pretty good with the pain pump, benedryl, tylenol, and all, which is a big change from the first dose of ATG on Monday.  I am getting an ATG dose right now -- they extended it out a little further to see if that would make it easier as well so it is more of a 12 hour infusion.  The good news is no more chemo!

I put some pictures up!  I'm not sure when the next time I will write will be but I want to thank everyone who is so concerned for me and is checking up to make sure that there is an update everyday.  I appreciate it very much.  Thank you all so much for your well wishes and prayers!

5-28-05 | 3:26PM   

Yesterday mom and I sort of settled into the hospital and got to know the flow of things.  I was still a little sore so I took it slow.  The room is pretty small, probably about 2/3 the size of a normal hospital room.  Around 4pm since I wasn't having anything done except IV fluids and a continuous heparin drip, they allowed me to leave the floor for 2 hours and go to Target and the apartment to get a few things.  Also since I hadn't started chemo yet that is why -- I was not yet immuno-compromised.  But as of today I got my first high dose chemo round.  I got some zophran and I got my mesna and the chemo.  Before the chemo (and each one of the next doses as well) I had an EKG, and during the infusion I am hooked up to the monitor, I guess to make sure my heart doesn't stop or anything funky like that.  I also have to be hooked up to the monitor at night when I'm sleeping, but other than that it's just tugging around the IV pole -- which I will have with me pretty much always for the next few weeks.   So the chemo infusion was an hour long and it made me a little nauseous and it made my eyes hurt.  I took a nice nap after lunch and now I am here in the lounge typing this.  Tomorrow I will have another dose of chemo -- same thing as today.  Right now I am just getting my normal PO (per oral) meds, the heparin drip (prevents clotting and protects my organs), and some other IV meds, and fluids.  

5-26-05 | 7:40PM   

I had my bone marrow harvest this morning.  We came around 6:15 in the morning and I actually went into the OR around 7:45am.  This morning I had this really horrible stabbing pain in my lower left abdomen and we were sort of worried it was kidney-related.  I've had kidney stones before.  I haven't had as severe pain today since then, but I have been feeling like I have to go to the bathroom really bad but then nothing comes out, so something is suspicious.  The harvest has left me very sore in my lower back and very tired.  They took just over 1.5 liters of fluid out.  Because of this I got two units of blood when I was admitted to 5200.  It was pretty impressive to see how quickly I perked up when I got the blood transfusion, but I still feel wiped out.  People say I should except the lower back / hip soreness to stick around for a few days though. 

After my blood transfusion I was off the IV for an hour or two and I got to walk around on the unit a bit.  Now I'm hooked back up and will stay that way pretty much until I am discharged.  I think I might get to have it disconnected in the mornings for like 30 min when they're changing out tubing and medicine, so that way I can shower and stuff, but that's about it.  I suppose where I am really planning on running off to anyway?

5-25-05 | 8:57AM   

YAY!  Mom and I met with Dr. K and Sue Wood, who is one of the nurse practitioners, yesterday.  I am having my bone marrow harvest on Thursday morning, and then once I am out of the recovery room they will just wheel me on up to 5200.  (5200 is the unit number for the peds stem cell unit so that is how everyone refers to it.)  So then I will start my chemo on Saturday, and if all goes well that would mean my transplant day would be next Thursday! 

5-24-05 | 12:30AM   

Well I just got finished dosin' with my zosyn, and I couldn't be more tired.  The past few days I've been doing antibiotic stuff -- I've been doing it every 8 hours since my surgery on Friday just to make sure I didn't get a full blown infection.  Each dose is a 1 hour infusion with the same style pump that I used when I was doing IV neupogen.  The infusion itself isn't so annoying it is the entire repetitive process that is.  Then also last night and today as well there was this huge clot in one of my lumens that I could literally see moving in the line, so understandably was freaking me out.  Long story short -- after many attempts of trying to lyse the clot I think I finally did this afternoon, but it was a big thing.  My mom and I finally got it by changing the end cap that screws onto the pigtail of my line and you could see it right there.

Umm so tomorrow I have clinic with Dr. K, aside from some schooling.  But at clinic we are supposed to discuss Thursday's bone marrow harvest, and then the possibility of being admitted to 5200 (the peds stem cell unit) immediately after that.  That would start the chemo on Saturday and put the transplant on Thurs June 2.  But nothing is set in stone till we talk with the doc and see what's what. 

5-21-05 | 12:49AM   

Had the surgery to remove my groin line today.  The surgery itself took less than 30 minutes but with recovery and all that stuff it was a 3 1/2 hour deal.  When I was finally going home and I stood up, I was almost surprised at not having any pain...I had become so accustomed to the pain of sitting down or standing up for the past three weeks that it was almost strange not to feel it.  Other than that...yesterday at my pre op screening they had noticed I had a low grade fever of 99.something but didn't think much of it.  Today when they were taking my vitals in the OR it was 100.something, so the concern was that there was an infection in the groin line.  It was a moot point because they were taking it out, but the doctors still wanted to culture the line to find out what kind of bacteria it was to give me the right kind of antibiotic if needed.  So...they did culture the line (meaning they took samples from the line site and from the catheter to grow in the lab) but those take a day or two to come back.  In the mean time I am stuck on IV antibiotics every 8 hours.  Yes, every single 8 hours which means in the middle of the night as well.  I suppose that is not as bad as getting an infection and having to be hospitalized, though.

5-19-05 | 8:38PM   

Today I had a pre-op screening just to make sure I'm still healthy enough for anesthesia and all.  I've already had 2 or 3 at Duke since I have had surgery and a colonoscopy here before, but you have to have at least one every 30 days to be sure.  So did that...and some homework.  And later a lady from the Jewish Federation came over to give us some assistance and to chat.

So I get to finally have this groin line taken out tomorrow.  It's been bugging me and bleeding and today especially it has been painful.  So that is good.  Then as of now, this coming Thursday I will have a bone marrow harvest.  (Bone marrow is where blood is formed in the body. The marrow is a sponge-like material that fills the inside of the bone. There are tiny spaces in the marrow that hold the stem cells that make other things in the body.)  The bone marrow harvest is done in the OR under general anesthesia and takes about 1-2 hours.  It is collected by putting a large bore needle through the skin into the hip bone. Most of the time enough cells are collected from the rear hip bones. Sometimes the front side of the hip bones must also be used though.  The stem cells, with some blood, are pulled out through the needle. The needle is put through the skin 2 to 3 times on each side of the rear hip bones. For each needle stick there are many bone punctures. After the procedure, a large dressing is placed over the area where the needles were inserted to prevent bleeding.  One to two liters of marrow are collected. The marrow looks like a bloody fluid. This fluid has stem cells and blood. About 5% of the body's stem cells are collected. It takes much fluid to collect enough stem cells.  After the marrow has been collected, it is filtered to remove fat and bone material.  The marrow is frozen until it is transplanted back into me.  There is often post-op soreness in the hip so sometimes they give you medicine, but some people say they have been just fine.


So I'm going to watch the Apprentice.  Fifer out.

5-18-05 | 7:00PM   

I had another pheresis today -- I had one yesterday, too.  Today's went a lot better than the previous ones.  Now we know that when I go in I should lay flat on the bed so my central line is straight.  So for around four hours that's what I did.  Sleep, listen to music, sleep some more.  The pheresis doesn't really hurt it is just annoying and uncomfortable, especially when you get some numbness and tingling every so often.  And by then time I'm done I am really wiped out.  I don't even feel tired in the sense that I want to sleep so much...just burned out. 

Anyway so I did that today and fast forward to this afternoon.  June e-mailed and said that I have a pre-op appointment tomorrow to make sure I am still healthy and all and then I am scheduled to have the groin line come out on Friday, time TBA.  Yay!  But then she called a little later and long story short said that they STILL were not able to get enough cells, despite getting enough volume and an apparent good count with the CD34.  So now Dr. K wants to get it from my bone marrow, a.k.a. sticking a giant needle in my hip.  So probably next week Tues or Thurs I will have it drawn from my hip.  It is just as well anyway because I cannot be admitted to the hospital yet -- it has to be at least 10 days after my cytoxan infusion which I had this past Friday.  This is so I do not get another blast of chemo too soon.

So that's a disappointment...but here we are.  I feel really tired now and just like I can't move my body around, but other than that I don't really feel sick or anything.  June said I don't have to do the neupogen injections anymore, so that's a plus.  Always a good side to everything, right?

5-16-05 | 8:43PM  

Today I had my first of the second round of harvests.  The first ones did not yield the amount of cells that I needed to move forward with the transplant.  So I redid the chemo at a half-dose, redid neupogen this weekend at a boosted dose, and this morning I went in to see if the pheresis would work out.  I got labs drawn around 9:30am so that they could be processed quickly.  Anywho, three hours and 14 CD34 cells later, I started pheresis.  Dr. K said 14 (that's to the millionth) is adequate -- she wants over 10 -- but she would prefer higher.  My hemoglobin and platelets were also a bit low so she said to go ahead with it today but tomorrow they will prime the pheresis machine with blood.  This means I will basically get a blood transfusion because there will already be blood in the lines rather than saline.  So mom and I were at the hospital until around 4:45ish -- tomorrow it should only be max maybe 4 hours, hopefully only 2 or 3.  The line that was put in at my waist/groin that is supposed to be better kept giving errors just the same, so I ended up lying on my back the whole time and then the machine wouldn't beep.  Fine with me -- I am good at sleeping.  Only problem was a bit later through the day I started to get that really bad bone pain from the neupogen and I still have that now.  It is the kind of pain that surges through your bones and you can feel your blood pulsing in your bones -- all across my spine and rib cage and neck and all.  Anyway I won't go on about that but that was today.  Tomorrow I have another pheresis scheduled.  They will then combine today's and tomorrow's and do a "collection" to see how much usable stuff they really have.  If they have enough they may do another on Wed. just for backup, and also if they don't have enough they may do another on Wed.  We shall see. 

5-15-05 | 7:01PM   

Hey!  Update tomorrow  -  kinda pooped now. 

Night!

5-13-05 | 4:52PM   

Today is Friday the 13th!  Scary!  Well this morning around 9am my mom and I went to the CHC to have labs drawn.  We were told to go early so they could draw a CD34 and see if we should start the neupogen, and when we might start the harvests again.  When they pull the labs they were taking a lot of blood and a lot of vials and we asked why -- turns out they have to do all of the original blood work again because it has been too long since my pre transplant testing.  Sue said I shouldn't have to repeat the physical tests like x-rays, CT scans, etc., so that's good.  So I got a bunch of labs drawn and my dressing on this stupid catheter in my groin that keeps bleeding whenever I bend or sit or whatever.  So I'm not really so much worrying about it, we just change the gauze and tape and all every day, but it is still painful and annoying.    Umm, okay so a little bit ago Sue called with labs results and said my CD34 counts are still low and white cells are at 2.5, which is trending slightly down which is good.  I'm supposed to start a higher dose of neupogen this weekend than before -- it is 400 something mcg rather than 300mcg.  Sue said then we should should come in early Monday morning to do labs, and depending on how they are I might have my first pheresis Monday.  Hopefully!

5-12-05 | 4:40PM   

Nothing too much to write right now.  Will write later.

5-9-05 | 2:52 PM   

Yes, yes so I am sorry that I have not updated the page in a bit.  I have been feeling absolutely, positively, tremendously, awful since Friday and have just simply not felt like doing much of anything.  But anyway...on Friday I had chemo again to pretty much start this process over again.  I have been spitting out great counts of mature cells, but not enough immature cells which is what they need to harvest.  So Friday I got half the dose of chemo I had the original time, that will lower my counts, and then when as soon as they start to rise again I will start the neupogen course again.  I think this time I will do the IV infusions -- the shots were getting painful and were bruising me.  So chemo this past Friday -- I slept most of the day -- well pretty much all of the day -- but it made me nauseous and of course like I said tired.  Although who's to say if it is the chemo that makes me tired -- with all of the drugs I am taking and everything else I could use a good hibernation here and there.  My dad came in for the weekend as normal and esp. for Mother's Day so that was nice.  On Saturday there was a walk -- the Rainbow Walk for Heroes -- to support the Family Support Program for the Bone Marrow / Stem Cell Unit.  I put pictures up from that and also from mother's day.  On Sunday for mother's day we went to the Sarah Duke Gardens which are these huge 55 acre gardens that were really pretty, and then we ate out at an Asian restaurant. 

The pheresis catheter in my waist is feeling better pain-wise but still bleeds and drains a lot and so I have to have the dressing changed daily or twice daily.  I'd rather just have them take it out until next week (or a bit later) when I need it again for the pheresis, but Dr. K said she'd prefer to tough it out and keep it in.  So that is that.  New pictures up!

5-3-05 | 8:13 PM   

Well I am still in a ton of pain from the surgery.  At first I was on some left over oxycodone every 4-6 hrs from my last line placement, but that wasn't enough so the nurse practitioner over the weekend refilled that for me, and then it still wasn't working so they switched me to 2x a day oxycontin.  The oxycodone had been making me loopy, but now this makes me tired and makes it hard to concentrate.  Plus it makes me irritable as each dose wears off.  So I wish this pain would go away.  I don't like taking so many medicines in general, but i think the pain category is one area where you should tell the truth about if you're in pain.  Otherwise I try to get off as many of these medicines they put me on as possible.   So anyway I tried pheresis again today with not much luck.  First of all my white counts shot back up again to well over 100,000, which many medical people today told me they have never seen in a patient.  But my past history is that I have spit out white cells like crazy.  That is a bit high, though.  This morning I went in for pheresis early because June calling saying Dr. K wanted to do a CD34 count to see how much I was making before pheresis.  So we got there around 9:30am, did labs, and didn't really get started with the pheresis until 11am while we were waiting for the labs to come back.  My CD34 counts were low, but we went ahead anyway.  My new line flowed pretty okay -- we got some errors on the machine but altogether it was better than last week -- so that wasn't a problem.  Then afterwards when my pheresis was done Dr. K said they would call when they had a final count of what they got today.  So this afternoon they called and said it wasn't enough -- which leads us to believe it is not just the flow of my lines but really how I am putting out the cells.  Dr. K thinks that I am no longer in the peak that they want me in -- that my cells are starting to drop again despite the apparent highness (if that's a word) in the white count.  (Remember the whole point of the chemo/neupogen thing was to mobilize my cells and get them active.)  So the new plan is for this Friday me to have another dose of low dose chemo, then do more neupogen, and they will closely monitor my labs for the right point, now that they know exactly what to look for especially in me with my funky counts.  Well I wish in the meantime they would take out this second line (did I mention that now I have TWO lines in, not just one?) -- because it is bothering the heck out of me.  But it doesn't seem practical to go have surgery to take it back out, and then sometime next week when I need it again for pheresis, put it back in.  So I doubt they're going to do that.  Hopefully the line will heal up quickly.  It just seems to be in a bad position -- the catheters come out right at my waste line.  I suppose, though, for a groin line, it is better to have it up higher than having it hang lower. 

Anyway thank you thank you thank you to everyone who continues to write to me and donate to the fund.  My family and I appreciate it so much!!

Love, jordan

4-30-05 | 12:14 PM   

Yesterday I went to have my central line taken out and have a wider one put in to make pheresis easier.  When we were talking with the surgeon, Dr. Skinner, who had done my last surgery too, he was saying that he didn't think it would be safe to fit a bigger one in because he hadn't felt entirely comfortable putting the original one in in the first place.  Two reasons: I am prone to clotting (I am already clotted off on my left side, this is why my port had to have been removed in my first surgery; and he said there were small clots developing on my right side as well), and that I am short and chubby, which is not good for an adult catheter.  He is working in a tight space.  So anyway he decided that because all I really needed this line for was hopefully just the pheresis, he'd put it in a vein starting near the groin.  The pigtails actually come out near my wasteline, almost even with my original pigtails on the first line.  After pheresis is finished next week we may decide to take it out again with surgery or we may decide to just keep it depending on how things go.  So this new line is bigger and wider.  I am still really sore and taking pain medicine and in a bit we're going to the clinic to get the dressing changed and have it flushed and all.  I had stopped neupogen for a few days since my white counts were too high so tonight I start that back up at 300mcg and on Tuesday we're going to restart pheresis.  So being admitted into the hospital and doing chemo and proceeding from there is dependent on how many tries it takes to get good counts from the pheresis.  My hair is falling out more, too...it's a lot more patchy now, especially in the back where it rubs on my pillow and things.

4-29-05 | 10:11 AM   

So on my third pheresis day we got my line to flow better, but apparently they did not get the number of cells they were looking for.  Dr. K is not happy with the central line that I have, she says its not even the one she wanted in the first place, that it is not a pheresis catheter and just a regular double lumen broviac.  So in about an hour I am going to have surgery to pull out the first line and put in a bigger, wider, pheresis catheter.  Then next week probably around Tuesday she said I'll probably start the pheresis again to see if we can't get some better counts. 

A few days ago my hair started to fall out more, so then two days ago I went to have it buzzed.  There's still plenty there, but it'll make it easier when the rest comes out -- I think probably by this weekend or next week.

Thank you everyone for your continued support and donations!!

4-26-05 | 9:34 PM   

Today was my second pheresis day.  I went at 10:30 and left around 5:15.  All day long they could not get my lines to give good return so we were trying different positions -- on my back, on my sides, arms up, etc -- to get the best flow.  This slowed me down tremendously.  Normally the harvest probably would have taken only maybe 3hrs to get 15,000 cells, but it took about 6hrs to get 14,000.  Now I am really wiped out mainly just because of the blood they did take -- I don't really feel bad just like I ran a marathon or something.

I learned a little more about how the pheresis works.  The blood goes out of me in one line and flows around a spinning wheel.  The wheel pushes the blood into a centrifuge in the machine that spins the blood around fast.  The white blood cells (what they are trying to get) are lighter, so they spin to the top.  The red blood cells then keep spinning on the bottom, and the white cells every so often 'spill over' into a bag and that is what is collected.  The red cells are then put back into me through my other line along with an anticoagulant, saline, and and calcium drip.  One of the side affects of the anticoagulant is that it binds the calcium in your body together, so most people get a tingling feeling and that is why they typically give a calcium drip to everyone just in case.

So the white cells are what they collected from me.  They are looking for a certain number of this CD34 cell, which I guess they have determined is the best way to see when I'm ready.  They want immature cells, as opposed to mature cells, because the immature cells haven't developed into anything and still can become things in the body.  Yesterday I happened to have a large amount of mature cells but less immature cells, so we'll see what happened today.  I was low on platelets and red blood cells -- well pretty much everything, so it is anyone's guess whether I will have to do another pheresis after tomorrow's.  If by the good chance I start spitting out cells, they I can be admitted this week -- if not then it will be more like next week. 

My hair started coming out yesterday and more so this morning.  So far it has only been when I brush through my hair with a towel or something, but it is definitely starting to come out. 

Alright goodnight.

4-25-05 | 6:00 PM   

So today was my first phaeresis day.  My sister Abby, my mom and I went to the CHC 4th floor around 10am this morning for my appointment.  The first thing they did is hooked me up to the EKG leads to monitor my heart.  Then they drew a bunch of labs from my lines, and they took the caps off of them.  The caps are these little connectors that are there to connect to syringes and stuff and have a little ball in them that retracts and prevents air from getting in when you take the syringe off.  I thought it was worth noting that they took the caps off before connecting the phaeresis lines because it shows how much extra flow they needed to get the blood moving.  Umm so then I think I was started on a calcium drip, as well as an anticoagulant medicine drip to prevent clotting.  These ran throughout the day and were replaced several times.  It was obvious that they were necessary because in just the short few seconds in took to switch to a new calcium bag, my lips went numb, and when she replaced the anticoagulant bag my body started to tingle. 

I was hooked up to the phaeresis machine -- in simple terms -- by putting one tube onto me that takes that blood out and another onto me that puts the filtered blood back in.  The filtered blood had been filtered of platelets and stem cells, to be nonprecise.  And thus began the day -- from about 11am to 4pm.  It normally would have taken a lot less time except my lines were being fidgety and would not give a good flow into the machine.  (There are different settings on the machine.  One of them shows mLs per minute, another shows total cells collected [our goal for today was 15,000], another shows volume infused, etc.)  So the goal was to be running at 80 mLs per minute and get 15,000 stem cells collected by the time we're done.  But since it was my first phaeresis (this was the explanation the tech Tiffany gave), my lines were probably up against a vein wall or, what happened too was that a clot formed.  So then (I think this is cool), the nurse and her just switched the lines around -- going out on one pigtail and going back into me on the other -- and continued.  Something about the catheters in my body was probably positional and after about half way through of alarming and slowing down and gradually speeding up the flow rate, we finally got a constant 80mLs/min for the last hour 1/2 or so. 

In this picture I think you can see how this works fairly well if I just confused you to death.  On one of those wheels my blood comes out of me using one of my catheters, and then circulates and filters through the machine.  The machine -- again in the simplest of terms -- filters out the platelets and stem cells -- and then with the other wheel puts the rest of the blood back into me using my second catheter.  (The catheters are the same thing, just split into two lumens). 

So that's it.  It was mostly boring.  I slept for a lot of it but people or things kept waking me up.  I got tingly and numb a lot and had bad tastes in my mouth.  One time (ok this part I did not like), when Tiffany was flushing some saline through the line to see if it would help make it flow better, it flushed really really fast and I could feel it all across my mouth and lips and then it sort of flooded into my chest...and mind you this feels like ice cold water since that is pretty much what it is, salt water.  So that I did not like -- the other stuff was annoying but tolerable.  Tiffany, who if I didn't mention was the lab/med tech that was with me the whole time and knows a heck of a lot about blood and this phaeresis machine and, well, a lot of things, said that she was going to be taking my cells back over to the lab and analyzing them, and then tonight she would freeze them.  These ones are my backup cells -- in case when I am transplanted I do not engraft I would be in a life threatening position without an immune system.  That's when we would use these.  Tomorrow's and possibly Wednesday's will be the ones they will actually use -- and they will be filtered even further to get even better collection of stem cells -- I don't even know what more filtering is done but it is more to further separate them out.  

So I'm incredibly wiped out and exhausted so I am going to take a nap now.  Oh also today and yesterday people from the local Jewish community have been so kind and gracious in cooking food for us.  We have had what might be called a bounty of food cooked from people and it is wonderful to see such caring and support and to meet new people.  We appreciate the help so much.  It means a lot to us. 

4-23-05 | 7:40 PM   

Today my family came with us to the hospital so after I got my labs drawn we could get a tour of the stem cell unit.  I got my labs pulled and my dressing changed on the line site.  The results came back later and apparently my white cells shot way back up to the 70's from being 17 something.  So after already halving my dose of neupogen from 600mcg to 300mcg they are halving it again from 300mcg to 150mcg.  This is sort of annoying because the 600 mcg dose was in 1mL.  Okay that's fine.  And halving that into .5 mL is fine too.  But then halving 300 mcg becomes complicated when you have to give 0.3 mL.  That's a little tricky.  I guess I just have to draw up as close as I can get it.

Anyway after getting my labs done we went and took a tour of the stem cell unit.  It is unit 5200, which means it is on floor 5 of the adult wing which is attached right next to the CHC.  To get in you first have to be buzzed in.  (Once I am admitted my parents will get a ID badge to swipe so they won't have to be buzzed in each time.)  Then once you are buzzed in, you are in this little room.  You put on shoe covers, and wash your hands with soap and water under an automatic sink and dry your hands with an automatic paper towel dispenser.  When you are done with this, you open the next set of doors (also automatically).  So....one set of doors is never open while the other one is. 

The floor has 16 beds total if I remember correctly.  Each one has a Playstation, VCR, TV, bathroom/shower/tub, parent fold-up bed, and some storage.  They are pretty small -- a little smaller than a normal hospital room.  They all have special filter units in them that can be reversed as well, in case let's say one of the kids has an infection and they don't want it to get out into the hallways, they can reverse the pressure in the room.  There is a parent lounge, kid lounge, and all that good stuff.  It looks like they try to make it is nice as possible for having to be cramped up there for a month or more.  They encourage you to color and hang up things and bring your own sheets to make the room as lively as possible.

On the way out/in there is a framed message from a patient that once had a bone marrow transplant.  I took a picture, but it is a little hard to read so I typed it up as well.  The message goes as follows:

Words of Wisdom From The Pediatric Bone Marrow Unit

To all the people who enter through this door, there is something you must accept at this moment. You are going to experience physical and emotional pain and suffering of which the likes cannot even be imagined by another human being. I advise you one thing: channel your rage into beating your disease, not against those who are here to help you. This whole bone marrow process is and trade off and nothing else. You must give this hospital, these doctors, your disease, a few weeks to a couple months of your life for a brand new one. You will be asked to give up everything, all shame, all pride, all embarrassment, all the false vanity that you can make it through this on your own without anybody, but if you lean on the love and support of those around you, or those that love and care about you, you will stand firm. There will be nights when you will cry, nights when you think that things are at there worst, nights when you feel your time has come. Don't let it. Don't give in and don't dare give up. You make it through this and you have a brand new life ahead of you. And trust me, there will come a period where you will hit rock-bottom, and the slide down is as unpleasant as pulling yourself out, but believe in yourself, believe in the magic of your spirit, and you will reach the skies once again. "Long is the road, and hard, that out of hell leads up to light." This is not an easy path to walk, you will be hard-pressed on every side as you venture upon it, but keep your head up. There is dignity in walking this path, honor and courage. We have all been chosen to bear this cross, and whether we think that there is a reason for it, none of that matters. It doesn't matter whether you believe God is doing this for a reason or even if you do trust in a God, and if you do, what God you trust in. Our suffering makes us all equals, all part of the same species, and while all of our stories are different, one fact of the tale will always remain true.

As long as you walk with your head held high, as long you stay firm in your belief that things can and will get better, there will come a day when you will no longer have to walk with your feet on the ground. Being here opens our eyes to a whole new world, and don't be afraid to accept this world. Because in this world, people like you and me, no matter how ordinary we may be, can make a difference if we choose to do so. So get up every time you get knocked down, and before you know it, you will no longer be merely walking through life, you will be soaring, floating above the ground, helping others as you have been helped. And in each of our lives, there come the opportunity to be great, it may be this, or this may just be leading up to it. But when it comes, pick up that cross with pride and courage. When that moment comes, let your fears and inhibitions go; close your eyes, spread your wings and fearlessly take to the skies. Once you have walked on the threshold of death, you learn to appreciate life all the more fully. So don't miss out on one more day of it. Pain is living, and while life is full of pain and suffering and despair, it is all we have.  Carpe diem!  Seize the day!  Reach for the stars and someday, some way, you will get there.  Just believe, because any and all things are possible.

So that is a profound message in it of itself, right?  But then I read the end:

Ryan Patrick Kishbaugh

July 26, 1984  January 3, 2003

Bone Marrow Transplant  November 19, 2002

4-22-05 | 7:17 PM   

Today my family got in -- my sister first, then my dad later, and then he went to pick up my brothers from the airport.  Right now we are about to eat Shabbat dinner all together -- it looks like a big feast.  We have a lot of great food that was graciously given to us by families in the local Jewish community.  They have even told us they will bring us a meal each night next week, which of course is very, very nice.  Thank you to all of the kind people who have and are donating their time, efforts, and money to give us a enjoyable meal with the family.

Earlier today my sister, mom and I went to the CHC for labs.  Today was the first day I got my CD34 cells tested, or, rather, counted.  The CD34 cells are the ones they look for to see if they will get an adequate harvest.  They look for a count of over 10, which is really 10 x 10⁶, so it is measured in millions.  They want to have over a certain amount of this kind of cell, because if they don't have enough it is not worth harvesting.  This type of cell, what is called the CD34 cell, is the one that is like a momma cell and that is why it is what they use to transplant, because it will engraft into almost anything in the body. 

My white cell counts are also up today, which is another good sign that I am progressing in the right direction with the neupogen shots.  So after I got my labs drawn we met with Sue again, who had spoken with Dr. K.  She said I am scheduled to have my first harvest on Monday in the morning.  It will be the back up harvest; the ones they will use in case I do not engraft.  On Monday I will be using a machine that is not the one they will use for the actual two harvests.  Sue said there was something different about it -- she wasn't sure quite what but that the better machine does something else to do something spiffy with the stem cells.  My harvests on Tuesday and possibly Wednesday will be with a aphaeresis machine that they have to rent because it is so expensive.

So the food is starting to smell good so I will go now.  -Jordan

4-21-05 | 11:21 PM   

Well we learned later this afternoon that my first harvest is going to most likely be Monday morning.  One of the nurses from the 4th floor CHC (that's where I go most days to get all my blood work and labs and stuff done) called and said that she had spoken to Dr. K and provided all kept going smoothly with my labs, I would probably do my first harvest on Monday.  Like I have said, most often it takes two or three attempts to get the right number of stem cells they need, so it is not just one harvest.  The whole process takes like six hours and it is done right there on the 4th floor.  So tomorrow I will go get more labs and hopefully everything will keep going well.  And my family is all coming in to visit for Craig's birthday and for Passover.  So that is cool.

4-21-05 | 4:24 PM   

Hi, so I have been continuing with the neupogen shots in my thighs.  They are not too fun...like I said they sting when I put them in and a lot of the time since it is a bunch of fluid to inject, I will have some come back out of the injection site.  I'm sure that's not a good sign.  Then sometimes if I hit a high up capillary or something then it will bleed, and because there is residual fluid coming out it makes it look like a freakin ER show when really it is just a little bit of blood.  Anyway at least the shots are working because my white cell counts continued to go down, and now they are going back up, which is exactly what we wanted (see two updates ago...).  Now the white cell counts are back on the rise...yesterday they were 2.5 and today they are 17.8.  So tomorrow Dr. K will probably start measuring the CD34 cells, which are the ones that tell them how many good stem cells are in my blood.  So all is going as planned.  In fact it is going very closely to what Dr. K says would happen for me.  When we talk to her she'll say something like "Oh I think Jordan will respond this way" or "My guess is he'll respond that way" and then it'll turn out I will.  More proof I am in good hands.

4-18-05 | 9:37 PM   

Oh one more thing.  I thought this was funny.  This is a copy of a portion of the insurance approval letter we were sent in the mail.  I think the 'quantity' part is funny...like someone else ordered 6 autologous stem cell transplants but we just got the 1 SCT package.  It's like a packing slip or something.  I dunno...made me laugh.

4-18-05 | 9:08 PM   

An update...an update....  Well today my white cell counts were back down to 2.5, which is good news.  When I talk about white cell counts it is in the thousands, so 2.5 is 2,500.  Anywho they are back down from being much higher which is good.  The purpose of the whole chemo/neupogen deal is to essentially "wake up" my white cell counts -- give them a little roller coaster ride and push them down and then up again to make it easier to harvest.  Now after going down to 2.5, when they start to rise again the drs. will do the stem cell harvest.  So today I got another neupogen shot.  Actually two...we refilled the Rx and it came in 300 mcg unit doses.  Well I take 600 mcg so I have to use two, one shot in each leg.  Each shot is 1 mL, which is a lot to put in your leg especially because the neupogen stings when you put it in.  The needle itself doesn't even bother me, it is the medicine part.  Plus today I got these really bad bone aches across my ribs, chest, neck and arms.  This is very common with the neupogen but that obviously does not take away from my discomfort.  But I will not go on complaining.  The good news is about the white cell counts...hopefully harvest will be sometime near the end of this week.  My family is coming in for Passover this weekend and then if all works out it should actually be perfect timing to go into the hospital maybe early next week or something like that.  At this point it is a guessing game.

Thank you all for the lovely guestbook posts and e-mails -- I appreciate them very much as does my family.  We appreciate the donations -- it means a lot to us. 

Sorry for the downgrade in quality on the website....working on that.  - Jordan

P.S. it occurred to me that I mentioned getting the banners from school and said PH but never said gov school, so thanks to everyone there too!!!

4-17-05 | 8:57PM   

So first let me get a couple new pages up before I forget. 

This timeline is a general timeline of things to come in the transplant process.  I hope it should help make things a little clearer.  This medicine glossary is a list of the common medicines used during the transplant process so they are the ones I will be commonly talking about in my journals.  This is a list of some of the organizations that have helped me and my family -- it is definitely not complete by any means. 

And this is me getting my hair dyed.  My parents and I went today.  My chemo was last week so my hair will probably fall out in the next week or two, so I went ahead and dyed it.  At the top of the page there is a picture of me with the banners that my friends made at PH.  I wanted to put that up so everyone could see them.

Got more neupogen today.  I am doing them as shots now because it is less annoying than the 30 min IV infusion.  I still have to give myself two shots in the leg which is definitely painful and not pleasant, but it is quick so I figure its better than the other.  My white cell counts were back down to 12,000 today, so I'll get another CBC tomorrow and I guess they will start looking for how many CD34 cells there are too.  I think we are supposed to meet with Dr. K and Sue on Tuesday so I guess that means they expect something to happen by then or then.

Jordan 

4-16-05 | 10:12AM   

So several things have occurred to me recently:

1. Baby corn is one of the greatest inventions of our time.

2. I was at the hospital and I was thinking about all the thousands of other kids who are having bone marrow and stem cell transplants, and it occurred to me: many of them are going to die.  I mean not that I hadn't thought about that before.  But that registered at that particular moment.  And I thought about me and thought that...you know, if I don't have this SCT, I'm not really going to die, am I?  Maybe 50 years down the road I might develop some sort of cancer related to my Crohn's or I might develop some sort of bowel obstruction when I'm 20, but the answer is most likely: no.  I'm not in any immediate threat of dying.  It's the complications of my Crohn's that might kill me.  But these kids, they are having this procedure as a life or death procedure.  It is this or death. 

So who is really better off?  One kid who has leukemia, who for the past five years has led a complete, full life; done what he wants to, played the sports he loves, gone to school, hung out with friends, etc.  And then last month his doctor walked in the room and told his parents and him that he had leukemia, and it was either the SCT or he could very easily die shortly. 

Or is it the Crohn's patient, who for the past five years has been in and out of the hospital almost constantly, gone through blood transfusion and after transfusion, needle stick after needle stick, anesthesia for this surgery or for that colonoscopy, diarrhea, hemorrhaging, and need I go on.  And his doctor told him and his parents that this SCT gives him a chance at a better life.  He could go on living like this, but his life could very easily suck.

One kid probably hasn't suffered much at all, but in all likelihood will die in the next few months without this treatment, and still could if it doesn't work.  The other has suffered tremendously, probably hasn't led quite the life so far that the leukemia child has, but he's not in any immediate risk of dying.  Who's really better off?  The one who, without this treatment, could die young, or the one who could suffer with the same disease for the rest of his life.  Who's really better off?  I don't know.

3. If it doesn't fit, you must acquit.

Got my second dose of neupogen last night.  My white cell counts were way up too high.  They were 35,000 or something close to that when they are supposed to be down around 9,000.  I responded quickly to the neupogen the last time I took it as a sort of trial to see if it would work by itself for Crohn's, so we figured this might happen again.  Sue ordered a CBC -- comprehensive blood count -- every day to check just to make sure.  This so we don't overshoot how much neupogen I get and because if my white counts get too high my spleen can rupture and that doesn't sound too pretty.

Jordan

4-14-05 | 9:53PM   

I started neupogen today.  It is this big 40 ml syringe that you put in a device that slowly pushes the end of the syringe over a set amount of time.  It's pretty cool actually.  Mine are set to go over 30 minutes.  Mostly boring really.  I thought I would prefer the infusions over shots, which was one of my options, but I think if I have to go longer than two days (that's how many syringes the home health people brought over) I will ask for shot form instead.  Plus, tomorrow I have to go to the clinic for blood tests and I probably will over the weekend or on Monday.  They need to see where my white cell counts are to decide when to stop the neupogen and when to start the stem cell harvest(s). 

My principal and one of my school's hall principals came down to visit today.  Mr. Leah and Mr. Henritze came with banners that a bunch of my friends at school had signed (this link opens a video news story on it), some cards and letters, and some other cool things.  We ate lunch and it was good to see some friendly faces from home.  Thanks to everyone at PH!  I really appreciate it!

So that's it for now.  I feel really crappy...nauseous and have a headache and I am really tired.  I slept through the day yesterday and through the afternoon today -- either I'm a teenager or I just had chemo or...well anyway.  The neupogen makes people have bone aches more often than not so I am psyched for that...can't wait.  What I do have to look forward to is this weekend when my father comes in and we get my hair dyed.  I figure if it is going to fall out why not go all out with it.  My mom of course is not in the same line of thinking, but that is one reason why we will be going with my dad.  hehe

Sorry about the guestbook.  The place where I was hosting my other one was being stupid and said "we only offer it as a feature but don't offer support for it" when it wasn't working right.  So i went to this new one...has cool features and all but has those annoying pop up ads.  Oh well.

thank you all for your continued support and encouragement!

p.s. check this out.  it is in beta version if you will.  hopefully it will make things a little less confusing, also when i finish a list of some common medicines and things to be combined with it.

also please go to the hero's list when you get a spare moment.  thanks.

p.p.s. yes i know the banners dont work.  thanks.

4-12-05 | 10:36PM   

Is it just me or does anyone else think it is funny that this is the exact same time I did the update last night.  I dunno...  Anway so today my mom and I went into the Children's Health Center (CHC) at 9am.  Up on the 4th floor along with other clinic rooms they also have the stem cell/bone marrow day hospital where kids come to get chemo, blood infusions, and a whole host of other things.  So that's where I went.  They have a bunch of private rooms surrounding a big open area with Lazy-Boys and video games.  Most of the time the stem cell/bone marrow kids have to stay in the rooms for fear of infection.  I could go out if I wanted to since I am not that far along.

So last night into this morning I had gotten about 1500 mL of fluids running to hydrate me and keep fluids running over my bladder and kidneys.  So when I got in there, they immediately started me back up on those.  Chemo is bad on the bladder and such so they always pump lots of fluid through.  They tested my urine every so often throughout the day to make sure things were still in working order.  After getting some fluids I got my first dose of mesna a drug used to help the toxicity on the bladder.  I think I also got my first IV dose of zophran then, too.  I had already taken 1 PO (per oral) last night and 1 PO this morning, but they give you more there.  So I do the mesna and the zophran IV...those together don't take more than 30 min, and then they start the chemo.  The chemo ran for the better part of an hour and then...you guessed it...back to more IV fluids. 

So really the chemo part of this was only an hour out of the whole day.  The rest was just every so often scheduled doses of zophran and mesna, and the fluids running to keep me in check.  That and so I could be in the clinic to be monitored.  I did end up getting pretty naseous so they gave me some atiban.  They told me it is normally used to calm people down but the dosage I was getting would just help the nausea.  My mom kept getting scared because she said I was flush in the cheeks but it turned out to be nothing.  I also got this headache/pain in my eyes which Dr. Kurtzberg, who visited later, said was probably from the zophran.

Then (we're really already up to the evening now) Dr. K and one of her nurse practioners, Sue, came to discuss the next steps.  They said that on Thursday I should begin the neupogen, which is used to boost cell production in the blood.  It can be given IV or shot but I chose the IV way, which will be a 1 hr infusion every night.  I will have to do that for no less than 3 days, and probably not more than 7-9 days.  They monitor my white cell counts and other labs often, if not daily, to see when is the right time to get the CD34 cells -- the name given to the stem cells they are looking for -- and that is when I have the harvest.  It could take up to 3 shots at harvesting the stem cells to get the right amount for what they want.  June took my mom and I to see where I will have this done -- the aphaeresis room -- and it is really just like any other treatment room.  they have all the medical equipment of course, plus a tv and a radio and then the aphaeresis machine itself.  It's this big black box with lots of knobs and gauges and....well I can take a picture when I get that far but  I was confused with everything going on there.  It's amazing how they do this.

So that is the immediate plan for the moment, "subject to change", as the phrase goes.  Once we have a successful harvest of stem cells, after that I could have a couple of days off but that is really the point at which I am admitted into the hospital to begin the high dose chemo that will ultimately wipe out my immune system entirely.  We're thinking right now that looks like end of April