8/31: Staying the Course

I finally got a chance to scan and upload the letters we received from Dr. Chang (the radiation oncologist) and Dr. Goodell (the pediatric oncologist), both from Lutheran General Hospital. Click on a bullet below, then scroll to see the letter and click on it to see a larger image and read their handiwork.

• As a reminder, Dr. Chang refused to treat Leo if we declined his radiation "therapy." He seems to honestly believe radiation cures cancer in the long-term. This was only July 7, 2006.
  
• Dr. Goodell seemed to care more whether we were neglectful of Leo because we refused his feeble attempts at "treatment." I wonder if he'd go for his course of treatment, himself, if, G-d forbid, he needed it. This is from July 14, 2006.
  

I spoke with Dr. Szymkowski today, who said that even though the 6% reduction reported yesterday was not uncommon, it was still very encouraging news. Leo's next MRI will be during the last week of September.

Regarding treatment, Leo started the maximum dose of both bags yesterday. For those keeping score, that's 210mL of A10 and 19mL of AS2-1, for a grand total of 229mL of antineoplastons per treatment. The A10 runs for 2 hours 48 minutes and AS2-1 now runs for 16 minutes. So out of every 4 hours, Leo gets 3 hours 4 minutes of medication.

Leo's mood seems to have been a little better over the past few days. His swallowing also seems better. We think those "symptoms" were really a cold he caught from Anna and Nina. Even thin liquids don't give him as much trouble. Speaking of the girls, they still get antsy when I drop them off at daycare in the morning. They insist on multiple hugs and kisses, which of couse I provide regardless whether I'll be late for the (late) train, but at least they don't cry anymore. When they come home, usually one of the first things they do is run over to Leo. Nina was trying to give him something to drink the other day and Anna brought him a blanket. He just smiles and laughs at them.

Leo and I made a deal. I told him yesterday that the doctors from Houston called and said that the medicine is helping him. He nodded in agreement. So I told him that when he gets better he and I will go to a store and buy a couple of big shovels and dig up (his favorite activity) the back yard. He nodded no, which surprised me. Then I realized that he wants to dig-up the back yard on his own and when I said that to him, he smiled and agreed. What a character.

Heard some good news about Leo's fellow warriors. Chase is home and doing better and James' infection seems to be under control. Hopefully everyone will end the week on a high note!

8/30: The Call

The tumor seems to be 6% smaller as measured by the Parkside MRI radiologist (i.e. not the Houston folks -- that's still in the works), Dr. Barry M. Rabin, in the following report (emphasis is my own):

CLINICAL HISTORY: Brainstom glioma. Comparison 07/15/06.

TECHNIQUE: Multiple sagittal, axial and coronal sequences were performed through the brain both pre and post intravenous gadolinium administration. The exam was performed with anesthesia provided by Dr. Gonzalez.

FINDINGS: There is diffuse abnormal signal and marked swelling of the pons consistent with pontine glioma. The pons appears slightly decreased in size compared to prior exam currently measuring 3.6 (width) x 2.5 (AP) x 3.1 (height) cm. On prior exam, the mass measured 3.7 x 2.7 x 3.3 cm. The fourth ventricle also appears to be less compressed. This is best demonstrated on axial T-2 weighted sequence image number 8 compared to prior exam axial T-2 weighted sequence image number 7. There is a different enhancement pattern of the tumor now with a ring enhancing portion within the left side of the tumor. The ring enhancing portion measures approximately 9.0 mm in greatest diameter. The vast majority of the tumor does not enhance with contrast.

There is a diffuse supratentorial brain volume loss that has progressed compared to prior exam. There is no hydrocephalus. There is no pathologic extra-axial fluid collection. There is no herniation.

IMPRESSION: There appears to be slight decrease in size of the pontine glioma compared to 07/15/06 with slightly less compression of the fourth ventricle and minimally decreased size measurements. There is a slightly different contrast enhancement pattern of the tumor compared to prior exam of uncertain significance.

8/29: MRI Done Today...Results Tomorrow

Although Dr. Gonzalez showed-up about 15 minutes late to Leo's MRI, he had a good excuse: surgery. Leo's MRI went without a hitch and we were out of recovery in record time. This process started last night, at about 10:30, when the last dose of antineoplastons ended. I disconnected and turned-off the pump and Leo woke-up only once at night, just before 2am. He was hungry, but not thirsty. I gave him a little something and after going back to sleep we all woke-up at 6am. Leo was absolutely ravenous, but with only 3 hours to go until the MRI we couldn't give him anything to eat. So those last few hours leading up to our brief visit to Lutheran General weren't good ones. Afterwards, of course, Leo ate and ate. I think he only had one meal today -- it started at about 11am and ended recently at 8:30pm!

We got 2 CDs with the MRI scans on them. One is already on its way to Houston and will arrive tomorrow before 10:30am via UPS. I should also be getting a call afterwards with Dr. Khan's or Dr. Dolgopolov's analysis. I have a feeling that at about 10:35 I will be calling them! The other disc is here, at home. Needless to say, I looked at it for a while today. Tried to compare today's to the previous one, but just couldn't. Some things seemed to look better (not sure exactly what that means). Other things, maybe not (again, not sure). So we don't really know because nothing was obvious. Are bright areas good? Are dark ones? That's probably why radiologists make the big bucks (right, Lisa? :) Thought I was anxious for today...I'm really anxious for tomorrow.

Leo's mood today was very good (so I'm not expecting much tomorrow). He even tried to sit-up a few times when he was laying down. I don't know what this means, other than a cure being in the works. I'm not making-up or seeing anything not there, but there are signs of hope all around Leo.

Stan the Man came through with someone familiar with the FDA and its rigmarole, in light of those U of I chemists' discovery I posted yesterday. No surprises there. It's very difficult to even get a Phase I trial, never mind Phase II, or consider children -- they seem to always go last when it comes to these things. But even if those chemists are on the right track, unfortunately at this point there's nothing there except interesting research. Besides, Leo will be cured by the time they're ready! Speaking of cure, one of Leo's fellow fighters, Chase Sammut, is hope from the hospital and things are looking up! James Neubauer is still fighting the infection and hopefully will be home shortly.

Last, but definitely not least, thanks to everyone for the e-mails, letters, calls, and other support. Leo's grandparents, who are definitely putting in as much overtime as humanly possible, deserve a special tribute and we know there's just one form of thanks they, and everyone else, want.

8/28: Preparing for the MRI

Yesterday was a good, fairly uneventful day for Leo. Today seemed to be an even better one. Leo smiled and laughed and even make a joke! So all in all, a good day. Anna and Nina were buzzing around Leo like a couple of little bees tonight, giving him something to drink, bringing him a blanket, stroking his arm, and talking to and playing with him. They are such sweet girls. But not such a good day for the home nursing we've gotten from OptionCare, so I've already made calls to other agencies to see who else can do pediatric home health. I really can't believe this...

It started last night when nurse Gail called to tell us that she would be at our house between 9:30am and 10:30am. I told her that our agreement was for 9am. She said she'd have to call the supervisor because there was no way she could be here by 9. Fine, I said, do whatever you need, but someone better be here by 9. She called back and said she would try to be here as close as possible to 9am, but it would still most likely be 9:30! Was she for real -- what part of "9" did she not understand!? I told her to call back her supervisor and get someone else because 9am was the only option. She called back a little later and told us, sure enough, that she would be here by 9, and she was. But this turned into a case of "careful what you wish for, it might come true."

Nurse Gail showed-up right on time, but that's about the only thing she did right. I had disconnected Leo's pump earlier, flushed the port with saline, then heparin. Since our return from Houston, the port hasn't given us too much grief. Nurse Gail, though, got grief. She couldn't get a blood return no matter how hard she tried, which wasn't very hard. She was only getting the saline and/or heparin return (mixed with a little blood) that she had been using to try to clear-up a potential clot. So after only a couple feeble attempts she just gave up and left, telling us to call the nursing supervisor to get someone else to come.

Surprisingly a few hours later, I got a fax from the lab with today's results. How could this be? I thought there was no blood to be gotten. A few minutes later, I got a call from Dr. Szymkowski (who calls herself Dr. Barbara for obvious reasons), frantically asking me what was going on. "With what?" I asked. She told me to look at the platelet count: 10,000. The "normal" range was from 150,000 - 400,000, and Leo was in the range Friday. I immediately understood what Gail had done: she dropped-off the mixture of blood, saline, and heparin to the lab! While I had Dr. Baraba on the phone, I asked for an order of TPA, since the port didn't work in the morning, and had the order faxed in just a few minutes. Later, Dr. Kroin also called frantically asking the same question.

After a few explatives that may have annoyed my neighbors at work, I called the nursing supervisor and got our usual home health nurse to come in the evening. But she said the TPA would be delivered tomorrow. What!? What was the point of someone coming tonight, when we know the port isn't working!? I said the nurse should pick-up TPA on the way to our house. To make a long, painful story just a little shorter, the TPA was couriered over just as I got home; Candice showed-up at about 7:30pm to draw blood -- and did so successfully, without needing TPA; and I go the perfectly normal (290,000) results at about 10pm.

I just disconnected Leo in preparation for tomorrow's MRI, which will be at 9am CDT. We'll be praying for the scan to show that the treatment is working and even though the symptoms have gotten worse, it's because of tumor breakdown. On the prayer front, please pray for two other children fighting similar battles: James Neubauer, who's in the hospital with an infection, and Chase Sammut, who was in bad shape in the hospital, but now seems better.

Finally, a request to anyone with any kind of "connection" -- regardless how many degrees of separation -- at the FDA. I read an interesting article today about chemists at the University of Illinois at Champaign, who have discovered molecules that cause apoptosis (programmed cell death) in cancerous cells, while leaving healthy cells unharmed. This is similar to the theory of Dr. Burzynski and they unknowingly compared their research to his (one of the genes that Dr. Burzynski targets is the p53 gene and these guys claim their method works faster and more reliably). The link to their research is here: http://www.scs.uiuc.edu/~phgroup/publications.html. It's the information under section 39, currently at the very top.

I sent an email to professor Paul Hergenrother, the leader of the research it seems, and got exactly the answer I thought I would get: this is all pre-trial, meaning they're still testing this on lab rats, not humans. Having read about the speed (or lack thereof) at which the FDA functions and the absolute lack of time that Leo and other children have, we need to get the FDA off their duffs and fast-tracking this research. Not that Leo needs to be a guinea pig, but they claim the toxicity is quite low, so more time shouldn't be wasted -- they discovered this in 2003!

8/26: Symptoms Seem Stable

Leo spent most of today at his Grandparents' house. He was generally in a good mood and the symptoms seem to have been stable, meaning not any better or worse. Once he got home, though, he asked to sit on the floor and smiled a lot. We have to support him completely when he's sitting because he's basically like a newborn. Of course he ate and drank, and we're trying to be more careful on the swallowing. Solids are still more or less ok, but thin liquids like water and juice -- which he prefers during drinking binges -- do cause more coughing than before. Coughing isn't the real issue, though. Getting pneumonia from liquid that accumulates in his lungs, even from tiny droplets when he coughs, is the real problem. Maybe we need to whip out that nasty can of ThickIt.

One bright spot happened on the way home. Leo told me where and how to drive. He has a preferred way of getting home and starts pointing at the street as soon as he realizes it's coming. When I respond by saying that yes, of course I'll be taking that street, he grins from ear to ear, but still holds-up his little finger to ensure I don't go the "wrong" way. What a character...

8/25: MRI #4 Scheduled

The folks in Houston suggested we move-up Leo's first MRI on treatment mainly because of the symptoms. They -- and we, of course -- want to find out what's going on. So Granpa Leonid (the Medical Maze Master) scheduled the MRI for 9am on Tuesday, August 29 at Lutheran General Hospital. This will be Leo's third MRI on that equipment, so we'll definitely be able to compare and contrast to previous MRIs.

A reminder to self: disconnect Leo at about midnight or so because he'll need to be sedated, which means he needs to be off treatment for about 8 hours, since he can't have anything to eat or drink. Maybe, just maybe, everyone will be able to get a decent night's rest, especially Leo.

Otherwise, Leo's blood tests this week have been good, with normal sodium and potassium levels. His hemoglobin has been on the low end, but we've started giving him more red meat and other products that supposedly help hemoglobin levels (i.e. food with iron). We actually saw a slight increase, so we'll continue doing what we've been doing. Regardless of hemoglobin, since the sodium and potassium levels have been fine, we're getting closer to the maximum dose of antineoplaston AS2-1. I've been cleared to increase it to 18mL -- just 1mL to go! At this dose, it'll be pumped for 15 minutes per cycle. So both antineoplastons now add up to 228mL, pumped for 3 hours and 3 minutes out of every 4 hours throughout each day.

8/24: Symptoms Getting Worse

Even with the recent increase in decadron, Leo's symptoms seem to be getting worse. He has more difficulty swallowing thin liquids and isn't opening his mouth as wide. Although he did yawn a few times -- something we haven't seen in a very long time. So we want to move-up his MRI, which is currently scheduled for September 2, to earlier in the week. I asked Dr. Szymkowski again today what all this means. She repeated that if the decadron increase helps, it's "just" swelling. If the decadron increase doesn't help that much, something is going on with the tumor. Would the MRI give them an idea of what specifically may be going on with the tumor? She said it should -- they will be able to tell whether the tumor is growing and becoming more active or whether it's breaking-up and dying. It's obvious for which option we're praying.

OptionCare claims to be coming through. Both the home health nursing supervisor and the home health nurse said that on Mondays, Wednesdays, and Friday, when Leo has blood drawn (and the Monday needle change), the nurse will show-up at 9am. I told them this is the last time we were having such a discussion. In the mean time, I've started getting a list of independent home health nurses who live around us, just in case.

8/23: The Sticky Stuff

It seems all of OptionCare had today off, except for Cathy the nurse. I left a voicemail for Michelle and will call her again tomorrow with my ultimatum. Nurse Cathy was nice, was prepared, knew what she was doing, and was fast. So far so good with Leo's port. I think I figured out what the problem has been with the blood draws. It isn't his blood clotting, although that of course may have something to do with it. I think it may be the antineoplastons. First, both antineoplastons are goopy and sticky (Leo's pee is even sticky). Second, until recently there were long gaps between treatments, which now last over 3 hours in total. So there was a lot of time between treatments for the sticky stuff to clog the port, needle, etc. Now that it pumps almost non-stop, I think there isn't enough time for stuff to stick together and cause problems. Well, it doesn't really matter as long as a the port keeps working and the blood keeps coming.

Leo's symptoms aren't getting any better. In fact, maybe they're again a bit worse, like the drooling that's slightly started and the coughing while drinking. I honestly believe that it's because something good is happening with the tumor. We were told several times that things may get worse before they get better because the tumor first breaks-up. That causes more swelling. Then the cancerous cells die and get cleaned-up by the body, which of course reduces swelling. Obviously we want this to happen asap, but we're willing to wait for good news. Another "symptom" that's really related to the combination of decadron and thirst is the utter lack of sleep. Leo now takes little naps throughout the day. The decadron causes sleep issues in the first place and the antineoplastons make him so thirsty that even when he does fall asleep he wakes-up for a drinking binge. So the regimen is very, very tough, but we are committed to the treatment and are going all the way. We'll get plenty of sleep I'm sure when he's cured.

8/22: Last Chance for OptionCare

I don't know whether it's OptionCare the company or if it's the nurses themselves, but we are almost at wit's end. I thought I was clear when I first arranged this: each day same time, same nurse. So far, we've met Candice, Gail, and Cindy, but tomorrow are going to meet Cathy because Candice is off, her sister Gail can't make it during the time we need, and Cathy is the one that's available. Tomorrow morning I'll be calling Michelle Reed, the nursing coordinator at OptionCare, with an ultimatum: each day same time, same nurse. I know it'll be difficult to find another company to do this, but at this point I'm thinking of calling independent home nurses and finding a set of 2 or 3 that live around us who work with children. What's more, they've been running tests on the wrong days. Dr. Szymkowski called today asking why a CBC wasn't done Monday, so she's rewritten lab orders for Mondays, Wednesday, and Fridays to ensure that these nurses get their acts together.

Leo seemed to be in a decent mood today, although he didn't sleep at all last night. The decadron 3 times daily is really doing a number on sleep for all of us, unfortunately. His dosage is now 210mL of A10 and 17mL of AS2-1. Symptoms are getting better, but they also aren't getting worse. We're just hoping things are getting better inside.

8/21: An Average Day

Today started as most Mondays: Huber Needle change. I can't say Leo's used to them, but between our being "ready," plenty of Emla cream, and the home health nurse seeming to know her job fairly well, the process is done very, very quickly.

Right after this, Anna fell and hit her forehead very hard on the corner of a kiddie table. Nevermind the goose egg, she cut herself in the process. She cried mainly because of the ice pack, not so much from the pain it seemed. Nina cried for sympathy. Of course we were worried all day, but by evening the swelling had gone and just the cut remained. She had no balance issues, didn't cry, didn't sleep more than normal, drank, ate, played with the same little attitude of hers, and generally seemed ok. Obviously Marina kept a very close eye on her while I was at work.

Now we're focusing on Leo's hemoglobin. It's been on the low end of the scale and we want to get it back up. Lean red meat, pomegranite juice (I called it Daddy's Juice to trick him into drinking some), and more veggies. Any other suggestions? Marilyn and Dr. Szymkowski said an iron supplement may be needed if it gets lower, but obviously we're going to try to fix this with diet first. Another Eastern European "remedy" for increasing hemoglobin is caviar. Unfortunately caviar has enough salt to kill a horse, so we can't even consider this.

Leo's dose remains the same at 210 and 16, but will go to 17 tomorrow.

8/20: A Better Day

Today was better than yesterday for Leo. He sat on his favorite Batman chair this morning and had brunch with everyone. While most of us ate lunch, Leo started with breakfast and continued eating through lunch! He asked to go outside a few times and went for a walk in the stroller with Marina in the morning and to the park with Anna, Nina, the Grandparents, and I in the afternoon. The park visit didn't last long, but at least we got out a few times during such a beautiful day. We're realizing that Leo is basically on a roller coaster. Each bad day seems to be followed by a better day, so we aren't expecting a lot tomorrow.

The Clinic today suggested increasing Leo's dose of AS2-1 to 16mL. We're going to go up every few days by 1mL at a time now, instead of 2.5, until we hit 19mL. This antineoplaston makes him sleepy and the point is to keep him awake to ensure he drinks plenty to keep his sodium level normal.

Tomorrow is another Huber Needle change day. Last time is when the abscess was discovered near the port site. With the daily dressing changes and antibiotic cream, the abscess looks much better. At this point, there's a scab about the size of a dime. Although it isn't oozing much anymore, it seems we're going to have to continue to daily changes for at least another week or so to ensure it's fully healed.

8/19: I had a Dream Leo was Walking

Today Leo's symptoms seemed slightly worse in the very early morning (before decadron) and late evening (also before decadron). He was drooling a little bit, seemed to be alternating fixation in his eyes, coughing a lot while drinking, and so on. He didn't complain of headaches. I relayed this to nurse Marylin during our morning talk, and then Dr. Szymkowski called. She started by recommending we space-out the decadron doses. Instead of giving 5mg every 12 hours, to give 4mg every 8. So another slight increase. Clearly, and we were told this initialy, decadron is heavily used to control symptoms. In addition, she said one or two things may be happening (although I'm not positive I got this right, so I'll ask again tomorrow).

First, if the symptoms get better, that may be a sign that there's just increased intracranial pressure from all the antineoplaston fluid that's being pumped into Leo, which causes more swelling. The antineoplastons seem to cross the blood-brain barrier and at the current doses he's getting 1,260mL of A10 and 90mL of AS2-1, for a daily total of 1,350mL. Obviously not all of this gets into his brain, but probably enough to cause some swelling. Second, if the decadron doesn't seem to help too much with the symptoms, that means "something" is happening with the tumor...

For the first time, I heard the following in relation to Leo. She said the tumor may be breaking down. Unfortunately in the same sentence she said that it may also have increased its own evil activity. The evil portion seems unlikely because these symptoms occurred virtually overnight and even this aggressive tumor doesn't grow that fast. Logically (but no one said these damned tumors are logical) that gives us hope for the best-case scenario: the antineoplastons are working. Marina and I believe this is the case. We won't really know for sure until the MRI in September (or possibly the one in November), so until then we just have to keep Leo on treatment and ensure his symptoms are controlled, even if that means more decadron.

Last night, during one of my countless nap breaks between Leo's drinking binges, I had a dream. I dreamt Leo was walking. He was off the decadron and looking like he used to (i.e. skinny). He was walking perfectly normally, but I did see he was still connected to the antineoplaston bag and pump via the IV tubing. He was walking on grass and it was warm because he was wearing a red t-shirt with a blue iguana on the front, blue shorts, and his favorite Thomas the Tank Engine gym shoes -- all clothes he owns. We'd love to see this soon or on a nice, warm day in the quickly-approaching autumn, but even next summer or the one after is fine, too. As long as he's going to make it, there's no rush.

8/18: The Port and the Antineoplastons

Today's home nurse visit was in the evening because she's on call all night and wasn't working in the morning. This was ok since Leo spent a nice day at the Grandparents'. Unfortunately his port wasn't cooperating when she came. It was flushing (going in), but not returning blood. Even heparin didn't work and we were getting ready for TPA. She suggested we leave the heparin for a while, while everyone got something to eat. Smart lady. When she returned from her dinner, voila, blood. Sorry Genentech. The only bad news is that it's already been a couple of hours since the blood draw and even though the order said stat, I doubt I'm going to get the results faxed to me tonight.

Antineoplaston AS2-1 has gone up by 2.5mL. Leo is now getting 15mL per cycle, which means it pumps for about 12 minutes, up from 10. The A10 is now at the max. Hopefully this increase in AS2-1 will enable Leo to sleep a little more/better (and us, of course), since it has a sedative effect. We saw that in a big way in Houston, especially after the last increase, to 12.5mL. He was very, very sleepy at first but then built-up a tolerance.

Yesterday we realized that we were running out of decadron. Today I asked the folks in Houston to call in a prescription for 5mg tablets to the Osco Drug pharmacy across from my work. They said they didn't have it and referred Dr. Szymkowski to the CVS, "a block away." She called Marina at home to tell her about this pharmacy switch and their phone number. I called and was told that no one makes 5mg tables. Only 4mg and 1mg were available, which were ready for pick-up. I went to this CVS "a block away," but they had no idea who I was or why I was there. To make a long story short, I had to leave work early, run in 100% humidity/rain, and still missed my train. But I got Leo's decadron.

Marina came-up with an interesting way to bathe Leo, since he doesn't like baths anymore. Instead of one of us holding (me) holding him and praying that the other one (Marina) works quickly, she sat him in his little Batman chair. It has a metal frame and cloth back and seat, which means it dries quickly. It also seems comfortable for Leo, since he now has a morning ritual of sitting in it in the kitchen for breakfast. Anyway, he still didn't like the bath that much, but it was much easier and less stressful -- for everyone.

8/17: Maximum Dose of A10

In a few minutes I will be preparing the bags, tubing, and pump at the maximum dose of antineoplaston A10! This is a huge milestone for Leo. He's been such a trooper and we think he's doing better at home -- not that Houston was so bad. Starting tonight, though, he will be receiving 210mL of A10 every 4 hours. At about 75mL per hour, this bag will be pumping into Leo for almost 3 hours! If I remember correctly, the second bag of antineolaston AS2-1 will be increased Saturday to 15mL, which means only 4mL more until he's at the max of AS2-1 as well.

The abscess near Leo's port seems to be getting better with the daily dressing changes, antibiotic cream, and cephalexin. We're still working on getting a "routine." The only one we have right now is not sleeping, although Marina does more of that than I. We still have mini-battles to get Leo to take the decadron and antibiotic, but we're finding ways. He's let his guard down a little so we've been able to trick him, which is something no one's been able to do in about a year. We need to schedule Leo's September MRI before it gets too close to the date to ensure we don't have issues being first that day. We're not expecting a lot at this point. Maybe we'll be able to start reducing the decadron by then, though...

8/16: Almost There

Leo's blood test was good today, so we increased the dose of A10 to 205mL. Just 5mL to go until we hit the max! Then we focus on getting to the max with AS2-1. He's still taking the antibiotic (about a week left) and, of course, decadron. I spoke to Marilyn today, who was surprised we only have 3 bags of AS2-1 left, but will have some FedEx'd to us asap.

These silly home health companies can't help but send us more boxes with junk their nurses hardly use. We have so much saline and heparin syringes, as well as alcohol wipes, I think we're going to start selling them on eBay to raise some money! Speaking of home health companies and nurses, Marina and I almost jumped out of our respective skins today when the nurse showed up seriously late for Leo's blood draw, even though we called every few minutes to find out where she was. Before our first appointment, when I was arranging all this, I told her and her company, OptionCare, that we have a zero tolerance policy -- come hell or high water, whoever is assigned to us is coming on time because Leo can't be off treatment. She's outta here and a new nurse will be doing Friday's blood draw.

Leo was great this morning. He asked to sit in his little Batman chair and have breakfast in the kitchen along with Anna and Nina. This was so nice to see! The girls were like little flies and couldn't sit still for a second, while Leo laughed at them, probably thinking how he used to be like that and looking forward to it again in the future.

8/15: Increasing A10 Dose

Based on yesterday's blood test, Marylin today said that we should increase Leo's dose of A10 to 195mL. That means only 15mL to go until he reaches the maximum of 210mL! She said they want to reach the max dose on this bag first and then move onto the second bag (of AS2-1). That dose is currently 12.5mL and the maximum is 19mL, so it's almost there as well. It also looks like we didn't get enough of the AS2-1 bags, since there are about 13 of A10 and only 3 of AS2-1. Will have to order some, stat!

More fun with home health. Yesterday the ER doctors told us to change Leo's dressing (tape and gauze over the Huber Needle) daily, the home health company said they could have a nurse come for about a week, which is the anticipated duration of these daily changes. Candice came at 8am today for this and proclaimed she was only here to teach us how to do this and that she wouldn't be coming daily. She just wants to come for the blood draws. Given our completely chaotic life right now, I set her straight and told her that we'd be glad to watch, but she would be changing his dressing, not us. After all, isn't that her job!? Also, even though it's just replacing a big chunk of tape on his chest, neither Marina nor I want to make Leo any more uncomfortable than he already is -- let her be associated with that. Fortunately it didn't take long at all to convince her, but it was still an annoying way to start the day.

Speaking of schedule, Marina and I now divide all the work as evenly as we can. We take turns getting up every 3-4 hours at night, whenever Leo wakes-up for a drinking binge. I take care of hiding the 2 decadron pills (4mg and 1mg) in something edible and ensuring Leo eats it, while Marina makes sure he takes the antibiotic. All the Grandparents are still working overtime and helping every which way possible...

8/13: Another Quickie at the ER

The home health nurse had 2 objectives today: draw blood and change the Huber Needle. Unfortunately only the blood draw objective was met. When she took out the old Huber Needle she noticed some sort of abscess near Leo's port. I called the Burzynski Clinic and spoke with Dr. Szymkowski, who suggested we have it checked-out either by Leo's pediatrician, who left for a 2 week vacation, or the ER. So Marina took Leo to the Lutheran General ER. Fortunately it wasn't anything terribly serious (or maybe we're getting used to ER visits), but again Leo was given cephalexin, the antibiotic. The dressing over the needle needs to be changed daily for a while and to use an antibiotic cream just in case. So the home health nurse will come each day for about a week to take care of this. A new Huber Needle was placed and they were home in just a couple of hours and back on antineoplastons. Most of the above happened during my first day back at work, so the late afternoon was a very nervous one.

8/12: Staying the Course

After yesterday's decadron increase Leo stayed the course today. Drink, eat, drink, sleep, repeat. Marina took all 3 outside this morning while I tried to make-up for some seriously lost sleep last night and Leo seemed to enjoy being out more than Anna or Nina. In a nutshell, we thankfully had an uneventful day, other than a new babysitter starting to help while I'm at work. Leo even took a liking to her because she was "warned" not to be too aggressive and just stay back for a while. This strategy seemed to work because Leo eventually "let her" feed him, give him something to drink, read some stories, and even change his diaper! What a character! Anna and Nina still come by and talk to him and give him little toys or something every once in a while. They are such sweet girls.

Tomorrow will be my first day back at work. It will also be Huber Needle change day and a blood draw and we're praying both are uneventful.

8/11: A Decadron Increase

After a restless night, Leo's symptoms seemed to get slightly worse today. He seems to have started having minor headaches recently. I think his first headache was actually on our way to the airport in Houston, when he started crying in the car, but we couldn't figure out why. He started the same crying in the car on the way home, after we arrived in Chicago. I finally asked whether he had a headache and he said yes.

This morning, Leo started crying and touching his right temple. He isn't really using his left arm, so it's hard to say whether it was really on the right or left. Regardless, when we asked if he had a headache, he said yes. I immediately called the Burzynski Clinic and spoke to the on-call doctor, Dr. Alam, I think. He told us not to worry because headaches, it seems, are common for people with brain and brain stem tumors. This made sense. He said that unless Leo has a headache that doesn't stop, starts vomiting, or becomes somnolent (constantly sleepy) we shouldn't worry (more than normal). At the same time, we should increase decadron to 10mg per day, up from 9mg, to help with symptoms like this. But we worried all day while Leo spent some quality time at the Grandparents'.

It wasn't very long ago when it was next to impossible to take Leo out of the bathtub. He spent hours in the tub, freezing in water that had gotten cold (well, maybe not cold cold) and then argued when getting dressed. Now bathtime is a nightmare. He despises being undressed, probably because he thinks something unpleasant is coming his way. While I hold him, covering the dressing in his chest, Marina (and Granpa in Houston) washes as fast as possible. If that's not bad enough, washing his hair is even worse. Afterwards though, dressed and calm, Leo ate and drank and finally fell asleep. He didn't sleep well last night and didn't nap much during the day, so we're hoping for at least a little sleep tonight -- for all of us. And praying for a good day tomorrow.

8/11: Leo's First Restful Day in Over a Month!

Yes, it's true. Leo has been in a hospital, clinic, doctor's office, or airplane every single day for the past month or so. Not today. We did have home nurse Candice from OptionCare come in the morning (early!) to draw blood from the port, which worked without TPA, but that was fast and painless. So Leo was in a much better mood because he finally got a chance to rest a little bit at home. We drank, watched television, drank, ate, slept (yes!), drank, and just had a nice day. Granpa Leonid came over and went for a nice walk with Leo -- the weather in Chicago has been perfect since we returned.

I made copies of the lab orders and per Leiann's excellent suggestion put STAT at the top, as well as all the fax numbers, etc. The results, all good, were faxed to everyone exactly 2 hours after the draws, so our local lab and home health nurse seem to have their acts together!

Leo's moving up to 185mL of antineoplaston A10 and staying at 12.5mL of AS2-1. That means he'll be at the maximum dosage on both bags within a week or two. Also, two other children, Justin and Gus, had fantastic news this week of the antineoplaston treatment seeming to work!

I finally had a few minutes to add the image from the original MRI on June 19, 2006, showing Leo's tumor.

8/10: Everything in Medicine is About the Money

We saw Leo's pediatrician, Dr. Kroin, today. Leo wasn't excited though. Afterwards I tried to schedule a home health place to send a nurse to us Mondays, Wednesday, and Fridays to do a blood draw from Leo's port. I lost track of the number of companies I called! The vast majority said they don't work with children, which I find hard to believe. The rest claimed that unless we purchase their supplies and/or use their IV infusion services, they wouldn't send us a nurse! All seemed shocked that I was calling, instead of a hospital person. So I finally called the 2 companies with whom we've dealth in the past: Coram (used for the antibiotics) and OptionCare (scheduled for us just after Leo got the port).

Coram checked and checked and finally the scheduling supervisor called me back past 6pm to tell me they won't do this because we aren't purchasing or using the IV infusion services. OptionCare started the same way, but when I told them that we never purchased anything from them, but still had a nurse offer to come (this was the smoker that didn't show-up), they checked their computers and said they'd send a non-smoker starting tomorrow. Incredible.

The one place that was reasonable today was the lab at Glenbrook Hospital. I came there, registered Leo for a standing lab order, a copy of which still has to be brought by the home health nurse when dropping off the samples, and left within about 5 minutes.

We're still trying to figure-out a reasonable schedule and routine for Leo. He hardly slept last night and kept Marina up most of the time. We've kept him on treatment the entire day and had our first call with Marylin from The Clinic. One problem that's reared its ugly head already is Anna got runny noses and sneezed all over the place. So we have our first taste of separating the girls from Leo. He was ok with this, but they wanted to be near him and help him. They know he has "an owie" and want to give him "medicine," water, and juice to make him better. They just want to be around him.

8/9: Sweet Home Chicago

Granpa drove Leo and me to Houston's Hobby Airport and we had a very good flight home. Leo wasn't in a good mood on the car ride to or from either airport, though. By the time we got home he was exhausted, but Anna and Nina were so happy and excited to see us and Leo was excited to see them! They grew so much in these past three weeks and their talking is awesome (and hilarious). Shortly after our reunion, Leo asked to go to sleep, which is a very, very rare occurrence, so I got a great opportunity to play with them.

Leo slept a few hours in our bed, of course, and woke-up about 30 minutes after the 8pm treatment started, thirsty as always. Good thing this time I put 2 of those absorbent hospital-style pads under him, because he's been going through a single, so the second was for insurance. His dose today remains the same as yesterday because of the travel, etc., at 175mL of A10 and 12.5mL of AS2-1. Until he gains more weight, the target/maximum dosage is 210mL and 19mL, respectively. One of the first things I did when we got home was prepare the antineoplaston bags on my own, without looking at the notes, and think I did well.

Tomorrow of course continues treatment, but we'll have to figure out who and how to do a blood test, and have an appointment with Leo's pediatrician, Dr. Kroin, in the morning. There's a lot of paperwork and other stuff to discuss with her.

For the foreseeable future and as much as we and Leo would like guests, unfortunately we can't have anyone coming over and won't be visiting anyone. We're being extra cautious when it comes to infection, since the tumor and decadron weaken the immune system. Our biggest concern is Anna and Nina in dayare, so we're going to have to tell the people there to let us know the moment someone sneezes, coughs, itches, has a temperature, etc. We're being paranoid, but the last thing we need to something to get Leo off the treatment and/or deal with another infection. We even went as far as changing the girls' clothes and washing their hands and face thoroughly when they came home today and will continue this from now on. I guarantee we'll go on a world tour when Leo is cured!

8/8: With Dr. Burzynski, Hope Exists

From left to right: Dr. Burzynski, Leo, me, Dr. Weaver, nurse Louise, and Dr. Samuel. Believe it or not (I was there) Leo took a serious liking to Dr. Burzynski and was trying to play with him after the picture!

This is the sign at the entrance to The Burzynski Clinic.

Houston, we're headed home. Flight arrangement have been made, some boxes shipped, and just need to pack. We'll be back in Chicago tomorrow afternoon.

Leo was discharged today with a very, very hopeful outlook. It has been -- and will continue to be -- quite a difficult road, but we are looking forward to the destination.

I want to thank everyone that has been so supportive over the last few weeks by phone, e-mail, comments, advice, support, thoughts, prayers, donations, and too many other things to mention. Thank you, thank you, thank you!

8/7: Back on Treatment

Thankfully today we spoke to Dr. Weaver. He looked at and touched Leo's chest where the infiltration had occurred and thought there was very little, if any, swelling. So in went the needle, followed by some freshly-brewed antineoplastons. Almost immediately Leo became thirsty and by the end of the day it was as if he never skipped a beat. His mood quickly became noticeably better as well. Leo laughed and smiled and drank and drank and drank. Phew...

We also met with Marylin, who is the nurse that's going to call us every day, including weekends and holidays, to check-up on Leo. The antineoplastons will be ordered through her because one of her questions will be inventory. We're going to have to keep track of everything. For a while, Leo will have to have 3 blood tests each week, per FDA rules. He'll need a monthly physical exam with Dr. Kroin and then periodic (every month or two) MRIs. We'll have a find a reliable and reasonable lab as well, because within 24 hours the blood test results need to be faxed to Dr. Weaver, to Dr. Kroin, to us, and to anyone else who's interested.

Tomorrow is discharge, which hopefully means another sighting of Dr. Burzynski, himself, and Dr. Szymkowski, whom we haven't seen in a while. It's hard to believe we've been here over 3 weeks. In preparation, Dr. Weaver performed a neurological exam and compared it to the first one, when Leo first arrived. He said Leo's strength was quite good -- as good as before -- and his symptoms did not get worse. I guess this is good news.

We've started packing and already have several smallish boxes with toys and medical supplies. Wednesday is quickly approaching and we're looking forward to going home. I think this was time well spent and we made the right decision to come here.

I finally found the PET scan CD and posted pictures to the date of the scan.

8/6: No Antineoplastons Today Either (Day 2)

Dr. DeLeon told us last night that there's some chance of getting a Huber Needle back into Leo's port and re-starting treatment today...

While we were waiting for the doctor, nurse Louise blew in and out of the examining room, dropping-off a shopping bag with the antineoplastons, saying nothing but, "Here you go." I bet she feels some guilt because she wouldn't look at or speak to us today.

Dr. Roa decided against restarting treatment today, but he actually looked and touched the area where the infiltration had occurred. He said it was best to let Leo rest another day and let the infiltration recede. I asked him to phone Dr. Weaver and he refused, asking, "Why? What for?" He claimed that a day or two off the antineoplastons won't do any harm or set-back Leo's treatment. This makes sense, but isn't what we need or want to hear. He also said that the protocol stated that Leo had to start antibiotics (cephalexin) as a preventative measure 4 times a day for 5 days. Great. Nothing but good news today.

Leo was not himself today. I thought without all the sodium he would at least sleep through the night. Wrong. He was awake from about 1-3am. He drank very little today probably because he was used to the thirst brought-on by the antineoplastons. Instead, he ate once -- all day long. Good thing Granpa figured-out how to make some tasty "chicken nuggets" from scratch so at least we didn't have to deal with Mc-you-know-what. Signs of constipation are already showing. Leo's mood wasn't good and his symptoms seemed just a tiny little bit worse today. Or maybe not. Maybe he was completely under the spell of steroids and antibiotics (and we saw similar effects while he was antibiotics for the last infection). Decadron is supposed to cause hunger, irritability, aggressiveness, etc., all of which were present from morning. I'm glad today is just about over.

While doing some research I found an article about one of the other two children at The Clinic being treated for a brain stem glioma.

One thing is for sure: we're going to be first at The Clinic tomorrow. Another Huber Needle and treatment needs to restart. At least we're going to see Dr. Weaver and get him back in the game.

8/5: A Trip to the Emergency Room

Today's start was ok. Leo and Granpa went for their usual walk and we thought our time at The Clinic would be short, since they now want me to do everything independently. As we were about to leave, I picked-up Leo from his stroller, which accidentally tipped over. I didn't think much of it until my Dad told me to look at the pump, which was on the floor, and the IV tubing, which was pulled tight. Leo didn't think much of it either and we headed out.

We were at The Clinic first and did the usual weigh-in, etc. At about 8:55am the pump kicked-in for the last dose of antineoplastons at yesterday's dose of 155mL of A10 and 12.5mL of AS2-1. Moments afterwards, when Dr. DeLeon walked-in, Leo was screaming in pain and pointing to his port. We called nurse Louise and explained to both what had happened. I lifted up Leo's shirt, they looked at the dressing without doing or touching anything, and said everything was fine but we should turn-off the pump. We basically thought that little accident at home just stretched things a bit and possibly pulled-off some of the tegaderm covering the needle and port. Nurse Louise said she was too busy to help at that moment and that we would have to wait for some time for her to have a good look, but she didn't know how long -- maybe 15 minutes, maybe 3 hours. So we left knowing either Leo would be ok or in an emergency room.

Back in our hotel I flushed Leo with saline and heparin and he just smiled at me. I thought we were in the clear. It took me about 20-3o minutes to set-up the bags and pump, which I then promptly connected to Leo to start today's treatment of 165mL and 12.5mL. As before, it took Leo just a few seconds to start complaining. I immediately disconnected the pump to calm him down and phoned the on-call nurse, Louise. What to do? Go to he closest ER, at Memorial City Hospital.

Leo was no longer in pain, but obviously something was wrong with the port, Huber Needle, and G-d only knows what else.

The ER was empty, except for a toddler, and we went in within about 10 minutes. Dr. Cassidy and nurse Patti looked at the dressing and without even touching it immediately noticed some puffiness and swelling and ordered an X-Ray. Unfortunately this hospital doesn't really have much of a pediatric department, so we started thinking of heading straight to Texas Children's Hospital. Here's what the X-Ray showed, with my annotation:

The X-Ray shows that the Huber Needle is not in the port, which is invisible to X-Rays. So Leo's pain came from the antineoplastons being pumped into his chest, not into his veins! Fortunately this didn't turn-out into the worst-case scenario -- at least not yet. Dr. Cassidy said they would take-out the Huber Needle and Dr. DeLeon, on call, confirmed and said not to put-in a new one until Monday. Dr. Cassidy refused to estimate how long Leo would be swollen and only nurse Patti was willing to take a guess that it would take about a day or so for the "stuff" in his chest to be absorbed and relieve the swelling. We left Memorial City ER about an hour after we got there, which has to be record timing. Again, Leo wasn't in any pain and demanded Chicken McNuggets, which we reluctantly provided, since there'd be no sodium pumped-into him until Monday and he must've had a hankering for nitrates and other chemicals. I told him this was his last batch until he was able to go out and buy them himself.

After we returned from the ER, Leo was hungry almost the rest of the day, but didn't take a sip of anything to drink. I guess the thirst brought-on by the sodium of the antineoplaston treatment was gone and he preferred to eat instead of drink. And eat he did. He also gave us one heck of an "attitude" today, which hopefully means that he's generally ok and this was a minor setback, but a big scare for Granpa and me.

In a second-of-its-kind, Dr. DeLeon called a few hours later to follow-up. (Dr. Kroin, Leo's pediatrician, was the first doctor to do this.) We still have to go to The Clinic tomorrow where the nurse will have a look and possibly put in another Huber Needle if there's no swelling, to get him back on treatment. This seems to be the best-case scenario, but I'll settle for second-best on Monday.

8/4: Culture Negative

Although we don't have the final, official statement from the lab that Leo's blood culture is negative, Dr. Weaver told us that nothing's grown and the official statement will come soon. He also told us that Leo is in the therapeutic range for both antineoplastons. Granpa got the tracking number from the shipping department, which sent the supplies and antineoplastons home yesterday.

Imagine for a moment you are generally feeling tired and unwell. You're taken into a small, cold, brightly-lit room. Your shirt is taken off. You are laid on a table. Someone starts rubbing the left part of your chest with 6 very cold, gigantic Q-Tips. Seconds pass... BAM! You're stuck with a 3/4 inch, thick needle where all that rubbing was done. No, this isn't from a horror movie like Hostel, although it could be. This has been Leo's typical Friday for several weeks now and will continue until he's cured. Today was no exception. The thing is, Leo is tough. Tough enough to wake-up at 4am, go through that and some other unpleasantness during the day, and fight-off sleep until 7:30pm. Mel Gibson is no Braveheart -- Leo is.

8/3: Less Than One Week Left

Leo woke-up last night at about 2am and decided to work-out his lungs by yelling a bit. It had something to do with my changing his incredibly soaked diaper and pajamas. He eventually relaxed and fell asleep until about 5am. That's when he seems to have the most energy, so he went for a walk in the stroller with Granpa to ensure all the local construction sites were excavating and bulldozing correctly. Unfortunately they weren't even working, but it was still a successful outing since Leo came back with a big, big grin.

Today was a good day at The Clinic, albeit a very long one. Good because the blood culture remained negative -- 48 hours down 24 to go. Starting tomorrow I will no longer need to prepare the bags there; they now trust my bag preparation and pump programming skills. Instead I'll be training on a "gravity IV" thingie in case the pump breaks or something. The day was long because I decided The Clinic should ship our supplies home before Leo gets discharged. Usually people take all this stuff with them (and there's a lot), but I figured instead of worrying about hurrying to get home, unpacking, finding everything, preparing the bags, programming the pump, and plugging-in Leo, Marina can ensure everything is there and in good condition when it arrives and prepare it for Leo's arrival at home. Just one less thing to worry about. This was a long and somewhat inefficient process.

We first needed an order from Dr. Weaver, who was ok with this idea. While he was writing that order nurse Louise took us to see Margaret, who takes care of the supplies. Margaret told us what we would need, how to order it in the future, etc. She had some small pretzels (yes, with salt) and Leo just couldn't resist, so he had 2 or 3 of them. She gave us 2 forms that we had to take to Rachel, in finance, who was taking over for Debbie, who is on vacation. Rachel's from the insurance department, but was helpful and even though she left the office a few times, didn't take that long. One of the 2 forms was initialed and we now had to take these forms to the shipping department on the first floor. To make this a little more efficient, and because Leo was getting more aggravated as he got more hungry, we decided I'd take him to the car while Granpa went to shipping. The shipping person tried to tell Granpa how things worked around there -- that he wouldn't ship the first batch (i.e. we had to take it with us). That was his first and last mistake, since the Doctor's orders were clear, meaning the supplies would be shipped to us, without questions. I guess the person in shipping was at least bright enough to quickly understand with whom he was dealing and shut-up. I'll have Granpa get the tracking number from him tomorrow. :) We left the building about an hour after this process started, with Leo absolutely ravenous. This is the one day we didn't bring food with us, of course...

The sure-fire way to feed the hunger and tame the beast is with a fresh mozarella pizza from Whole Foods, which we all enjoyed. We came back and even though he fought and fought, the sleep won, at least for a short while. I napped with Leo, while Granpa slaved away in the kitchen, and woke-up to being smacked, clawed, punched, and periodically rubbed, with lots of giggling in the background! Leo was generally in a very good, fighting mood today, which are all positive signs. His constipation seems to have gone, which probably also helps, and we understand the medication-thirst-sleep routine a little better. He even told us when it was time to take the decadron!

The 9 year-old girl, from the Italian family we met yesterday, is here for the same condition as Leo, pontine glioma. She is the third child with pontine glioma currently at The Clinic, with 1 more possibly on the way. Their English-speaking relative stopped by this afternoon and Granpa drove them shopping, since they've been calling cabs to get around. Too bad we have a fairly small car and there's 3 of us and 4 of them; otherwise, we could at least take them to The Clinic and back with us.

So it looks like we're beginning to wrap-up our trip. There's still a very long way to go, but the end is now in sight.

8/2: Routine

Last night Leo decided to have some fun and sleep with Granpa. Of course he woke-up in the midle of the night, thirsty, hungry, and wet. Granpa took care of business and Leo decided to leave him alone and sleep with me. He woke-up again at either 4 or 5am -- I can't even remember -- and, well, repeated his routine. Granpa just asked if he wanted to sleep with him today but nope, not tonight.

Yesterday The Clinic decided to do a blood culture, not just a plain blood test. This was done as a precaution to infection. Fortunately today the results came back negative. Good, but not final. Only after 72 hours of negative results (i.e. no bacterial growth) can Leo be classified as infection-free. Back at home when he got the infection, the culture was positive almost immediately, so today's negative result is promising; 24 hours down, 48 to go. Today one of the small blood tests was required and, again, thank G-d for TPA, which worked in only 15 minutes. Today was also the first time I did an "independent" bag change of A10, in our room. I was very nervous and took about twice as long, but the bag looked good, without any air bubbles, so treatment continues.

We met a family from Italy that came to The Clinic for their 9 year-old daughter's treatment. They don't speak a word of English and have a relative from Connecticut translating. Granpa offered to drive them to Whole Foods or where ever they want to shop because they seemed a little lost, but they probably fell asleep jet lagged.

I also started a new "routine" with Leo. I start a slideshow of of recent family pictures on the laptop here, as well as on the Yahoo site, and we watch it over and over again (between showings of "I Love Big Machines 2" or the "Mega Machines" DVD with bulldozers, monster trucks, and tanks). He squeals with joy when he sees Anna, Nina, and Mom!

Leo's dose of antineoplaston AS2-1 is within therapeutic range now and A10 is increasing and almost there, so we're actually starting to talk about our departure! Our estimated time of departure is Wednesday August 9, with Tuesday being our "check-out." Of course that's very exciting, but also provides for plenty of anxiety.

8/1: Going Strong

Regardless whether Leo looks like a little water baloon, he's going strong. Clearly this is a difficult ordeal for him, but he's tough and still fighting. The sheer quantity of liquid is a mixed blessing. While Leo is very bloated, almost constantly thirsty, and pees like a water cannon, he doesn't seem to be constipated anymore and doesn't gorge himself. The thirst, if that's all it can be called, consistently starts about 45 minutes or so after each dose starts, so at least we know when we are going to be woken-up and can be "prepared." Roughly 500-750mL of liquid has been required so far to quench that thirst. That's something like 1-1.5 pints or so...for a 3 year-old...6 times a day.

Yesterday's blood tests came back good, with sodium at 134 and potassium at 4.1-4.2, which we're told is good; blood counts are fine, too. Today his dose of antineoplaston A10 was increased to 135mL and AS2-1 to 12.5mL. Dr. Weaver mentioned that A10 will max-out for Leo at about 200mL and AS2-1 at about 18mL, so we're more than half-way there!

If the whole computer thing doesn't work out, I think I can soon become a nurse, or at least an assistant. Do they get benefits? :) Seriously, I'm becoming an expert in preparing the bags of antineoplastons and connecting the tubing. I'm also getting better at changing the bags before all 6 treatments. The math works like this: 6 treatments of about 200mL each, for a total of 1.2L. The largest bag is 1L, so there will need to be a bag switch, but not a tubing switch, and a slight retiming of the pump. Having done this twice now at The Clinic, tomorrow will be my first attempt in our room at the hotel. I'm a little nervous, but have instructions that Marina started, so I should be ok.

Thanks again to everyone that has donated to Leo's Treatment Fund and sent us their prayers, thoughts, and emails -- all are needed, so thank you!