Ups And Downs

So today started really well.  Johnny woke up about 7am, and then woke me up about 5 minutes later.  It was really nice to see him have a little energy.  We spent the morning watching skate videos, and he even ate a little a little for breakfast.  At about 10am Johnny had his first set of visitors.  Jim T., his wife Lynn, and son Jack flew out from Oakland last night, and came to the hospital bringing swag.  Lots of cool videos, books, and a couple of decks.  Exactly the type of stuff to keep Johnny occupied during hospital stays.  Johnny really lit up when he saw Jack, and it was really fun listening to Johnny and Jim talk skating.  Johnny was still really weak, but that was the most animated I have seen him in over a week.   The Thiebauds have become really close friends over the last few years, and it's obvious Johnny really loves them. 

Jim and family had been here about half an hour when Johnny got two more visitors.  Pro skaters Kenny Anderson and Chris Haslam are in town for the opening of the new skatepark in Houston and stopped by the Hospital to surprise Johnny.  Kenny was part of the group of skaters that spent time with Johnny at his first MAW Texas Jam, and he has kept track of him ever since.  He has got to be one of the coolest and most laid back people ever.  Johnny had never met Chris before today, but they really seemed to hit it off.  I know they were probably really busy, but they seemed comfortable just hanging out.  It was super cool for those guys to take the time to visit Johnny.  I think he had a really nice morning.

The ID doctors stopped by to explain the plan for continued treatment of Johnny's bacterial infection.  Although the really nasty bug in his blood seems to be responding well to treatment the doctors need to keep him on the antibiotics that target that infection for at least another 10 days.  They also believe he has a secondary infection in the walls of his gal bladder and intestines.  They started him on another antibiotic to treat that infection, and said the initial plan is for 14 days of doses by IV.  That means Johnny will be in the hospital for at least another two weeks.  That should take him through the end of the first block of treatment.  The second block starts with a scheduled 5 day hospital stay, so it is very possible that Johnny will be here for the next three weeks straight.  I could tell that when he heard this he wanted to react, but he didn't.  I don't think he wanted anyone to see that he was upset.

At some point while everyone was still there it became obvious that Johnny hit a wall.  Kenny and Chris needed to get back to the park, and Jim took the family to the zoo for a while to give Johnny some time to rest.  Shortly after everyone cleared out Julie showed up with Kathleen, Joey, and Sophie.  By that time it was clear that Johnny wasn't just tired, but really not feeling well.  He started turning red, and his temp started rising.  My first thought was that the infection was returning, but the doctors think that he may be allergic to the new antibiotic.  They treated him with Benedril, and he quickly lost the redness, but his temperature remained high (flirting with 103).  It's after 10pm as I write this and it has only now dropped below 101.  It's good that the reaction probably isn't directly due to infection, but it sucks that he appears to be allergic to the first choice of treatment.  Apparently nothing is going to be simple and easy this time around.

The Thiebauds returned in the afternoon, and since Johnny wasn't feeling that well we all gave him some space and only spent short periods in the room.  That seemed to work well, and it was really good to get to spend some time catching up.  Kathleen took the kids back to the house around 6p, so that Julie and I could spend the evening together with Johnny.  I think Johnny liked having both of us in the same place for a while, and I agree.  Julie and I have literally been passing each other in the parking lot as we traded off staying with Johnny this last week.  

Johnny seems to be feeling a little better, and is resting comfortably.  Even though he didn't get out of bed much, it was a pretty big day for him.  He is worn out. 

We're Out (of the ICU)

Just as Johnny was about to get a sponge bath from a pretty ICU nurse the word came down that the room on 9 was ready.  Looks like he will be showering himself tomorrow instead.  He's stoked.  It's midnight, and we are finally settling in to room 910.  No more constant blood pressure cuff automatically inflating every 10 minutes.  No more oxygen sensor taped to a finger or toe.  A whole lot less hoses attached to his IVs.  I never thought I would be glad to be here, but right now I'm very happy.  

Johnny is feeling better too.  While I was on my way to relieve Julie he called and asked me to stop at Wendy's.  He wanted two packages of chicken nuggets and a Dr. Pepper.  After not eating for a whole week that was what he wanted, so that was what he got.  He actually ate two nuggets, and took about two sips of the drink, so I got dinner too.  It was still a big step for him.  

Johnny got almost all of the second week of chemo today, and he did very well.  Unbeleavable after the week he just had.  It may be my imagination, but he is starting to get a little puffy around his jaw.  Starting to look like a kid being treated for cancer again.  I guess all the steroids may be starting to show.  

MAYBE THIS WILL SPEED THINGS UP

I get crappy phone reception in our room.  If you need to talk to us, you can call the ICU front desk:

832-824-5949 and ask for room 25.

I hope as soon as I publish this, they will get us up to the 9th floor and we will have NEW phone numbers to give you!

WHERE ARE THEY?

Our nurse Melissa called to get the 'scripts to start Johnny's chemo this morning and the Hem/Onc doc's asked, "Where are the Romano's?  How come they aren't on 9 yet?"  Melissa found out there is indeed, a room on 9 for us and she has been working hard all morning to get us up there. She rocks. 

Last night was uneventful -- whew!  Johnny ran a slight temp of 101.3 about 2am, and his oxygen levels dropped a bit too, possibly due to the fever, so he was put back on oxygen (02).   When Melissa came in the morning she saw that he was on 02, hasn't eaten in days and has the sniffles. She ordered him food (jello and chicken broth) and gave him orders to eat and walk around. She told the doctors that she feels the lack of food and walking could be the reason he needs 02 and that the sooner he gets out of here the better.  She also asked for another xray just to make sure his lungs still look good.  

The ID docs came by to give us the morning bacterial reports (my words, not theirs). They discussed the results of yesterdays ultrasound -- there appears to be a mild thickening of the gall bladder and intestinal walls.  This could be due to a few things -- possibly a bacterial infection, but more than likely because of the antibiotics treating the infection and all of the vomiting and diareah the poor kid had this week.  All cultures have come back clear of any infection,  but because Johnny has been through so much this week, the doc's are changing his antibiotics to drill down on the possibility of a gall bladder and intestinal wall infection. He did have a little diareha last night -- but no vomiting.  

His cultures and stool will continued to be monitored for bacteria, but nothing is expected to grow.  His antibiotics will change to cover the possibility of gall bladder and intestinal wall infection, the new stuff is called zosyn and a broad spectrum antibiotic that he had before called gentamicin to kill anything else that could be floating around. The ID doc's said they are "thrilled, amazed and in awe of Johnny's strength and recovery." I am so proud of the little guy too -- really, there are no words to describe how grateful I am that he is as strong as he is. Slightly frightened of the 'amazed and awe' comments -- but he really did make a remarkable recovery this week.  I honestly think the doctor's didn't expect him to make it.  It doesn't get much scarier than that...

Right now he's getting chemo (the trial drug epratuzamab) and resting comfortably.  To make sure he doesn't have a reaction like he did last week, he gets what I like to call his "Rush Limbaugh/Paula Abdul" premed cocktail; benadryl, hydrocortisone, tylenol and Demerol.   It's given about 20 minutes prior to chemo and he fought hard not to fall asleep.  He said it makes his eye lids sleepy -- not him -- just the lid part of his eyes.  I guess the cocktail is stronger than his eye lids because he's out like a light right now.

I am praying for a very, very, very boring afternoon and I will update more when we get a room on 9.

 

RANDOM, SILLY, CRAZY THOUGHTS:

After a week of bad news I thought I had to put something funny in the blog:

We've been in ICU 4 days now and TV is the only thing we have going on. The other night as I was flipping through the stations for the millionth time, this photo kept popping up on random stations. It doesn't get much sillier than this!

At first it frightened me -- why does this guy have a bob? Why the carefully manscaped facial hair? Does this poor creature know the 80's are over? Maybe he's stuck inside the hospital TV?

Later, I was mad because I didn't know who the hell this guy was and why he was so important that his photo had to be blasted across the airwaves taking up valuable cable space. Finally, his soft woman-like facial features lulled me to sleep.  I woke up the next day, went channel surfing for our semi-famous photo but he was gone as quickly as he popped up.  I've since tried to search for him, to no avail... which makes me think (hope) I was hallucinating or something from lack of sleep.  

WALKING PAPERS (ALMOST?)

This was the most stuff I have ever seen ANYONE hooked up to at one time. When our new ICU nurse came in Tuesday morning the first thing I asked her to do was untangle the mess to make it a little easier for him to get up.

The ID doctor's came in today and said that as soon as there is a bed available in the 9th floor, we are outta ICU. They have pin-pointed the type of bacteria that infected Johnny's GI tract -- pseudomonas aeruginosa -- don't ask me to pronounce it. It is one of the deadliest ones out there -- a few doctors used the terms 'grave' and 'grim' the past two days when describing Johnny's condition. The good news is the last two cultures haven't shown any growth -- it can take up to 5 days for something to grow, but as of right now -- they remain negative growth.

This is what all of the wires were hooked up to.  It was more electronics than our TV, PlayStation, XBox and surround sound had combined! Every box on both poles and the oxygen on the wall were being used the past 4 days. 

The doctor's know the bacteria sensitivity (what drugs to use to kill the bacteria). The new antibiotic will be ceftazidime. again, don't ask me to pronounce it. They are thrilled with how good he looks, and remain positive that he can beat this. What we want to find out today is if the bacteria is 'sterile' -- meaning that it only affected the blood stream and is not in or attached to any organs or lining of his intestines. The ultrasound this morning will tell if there are any abscess in the GI tract. If there are, it could mean more surgery to repair the lesions then, not much changes except the duration of antibiotic treatment. Best case scenario is that it's sterile, and treatment will be 7-10 days, if it isn't sterile, treatment will be at least 14 days. Antibiotics must be administered through IV's, I asked if that means we have to stay in the hospital for 7-14+ days. You think after the week we've had, I would learn a thing or two about predicting the future -- but no, I haven't.

This was after they cut down on the wires and tubes.  I had to get a shot of the thing in the middle -- it looks like a power strip for a computer or something.

 
The doctor's looked at me and said, 'Lets see what the ultrasound results say, and get you up to the 9th floor. We are thrilled that Johnny looks so good, he's turned the corner, but not yet wining the battle."  If the stars and planets align perfectly today and everything comes back good -- then today can be day one for treating the sterile infection.

Johnny has been awake most of the day, very weak, tired and hungry (he hasn't eaten since Sunday night), and ready for a change of scenery -- even if it is the 9th floor.  I will update when we get moved!

The Port is Gone

Johnny started feeling a little better last night. His fever has dropped back to normal, his blood pressure is still good, and his stomach seems to be a little less tender. He is hungry, and in a bad mood. All good signs. The surgeons removed his port at about 4:30am, and they said he breezed through the procedure. One of the Infectious Disease (ID) doctors came in early to let us know he is anticipating a faster recovery from the infection now that the port is gone. Johnny just had an ultrasound on his stomach to make sure there are no lesions that would continue to allow bacteria to enter his bloodstream. He doubts that's the case, but we should know something for certain by noon today. The last two blood cultures have been clear so far, so we are keeping our fingers crossed. Hopefully today will be a little less eventful than yesterday.
I haven't slept in two days, so the next post will probably be from Julie.

The Team is Getting Larger

To my surprise two new doctors just visited Johnny (they all seem to walk around in pairs for some reason). These two were surgeons, and came to evalute him for the possible removal of his brand new port. It appears that the blood they took this morning is still growing bacteria. We pretty much knew that based on the fact that he is still really sick, but I was hoping for different news anyway. They are also starting to narrow down the type of Bacteria. Although they can't confirm it yet, they believe that it is a very aggressive strain that they also characterize as "sticky." The "sticky" part is why he might have to have the port removed. Although they haven't ruled the port out as the cause of the infection (if it is, a great reason to take it out), there is some concern that even if it isn't the bacteria in his blood will "stick" to the device and be very difficult to kill. If that has happened it causes two potential problems. The first is that it will be much harder to bring the infection under control. The second is that if some bacteria stays "stuck" to the port then the next time he gets chemo, and/or his counts drop, we will be going through all this again.

All of the doctors, I think it's over eight now, are talking it over to determine whether or not the port needs to come out, and what the plan might look like if it does. He's using it right now, along with IVs in both hands, so there will need to be a plan B.

Julie or I will probably post again later tonight, or tomorrow.

Not Out Of The Woods Yet

Johnny is still in the ICU, and it looks like we will be here for a while. His blood pressure has come up and stabalized, and is holding steady without medication. That's the good news. The bad news is he is sicker than a dog. He started throwing up this morning, and has been having bouts of nausea all day. His fever is also back up a little. The blood cultures have remained positive, so although it looks like we are making progress, it is obvious he still has the bacteria infection. His ANC is currently at 0 (yes, zero), so he doesn't have much to fight with other than the antibiotics. The infectious disease doctors were here to take a look at him a few minutes ago, and will be keeping a very close eye on the treatment of his infection. I think his personal team of doctors has now increased to at least six. As usual Johnny is the center of attention.

His regular Hemoc doctors stopped by this morning also. They are very anxious to get chemo started up again. He was scheduled to start week two today, but they have to get control of this infection before we can really do anything that would suppress his immune system any further. There is also the problem that we would not be able to tell if he was having side effects, or is just still sick, so we have to tackle one problem at a time right now.

It's a good thing this kid is a fighter. He's definitely taking a couple of punches.

Julie or I will update as soon as we have more information.

LOOKING GOOD

It's 2am and I finally stopped shaking about an hour ago. I'm actually sitting in a chair and not pacing the room!

His blood pressure has been steadily increasing little by little. Right now, dare I say -- it's almost normal? Not bad for a kid recovering from septic shock. No fever, heart rate is 110ish. His blood culture came back and confirmed it is a gram negative bacterial infection (bacteria from within the body). Now we can start targeting and treating specifically for that particular infection with antibiotics to obliterate the bacteria.

I know this will be way too much information for some people, but he just stood up to go wee-wee. THAT my friends is a HUGE deal to me! I'm not a doctor (but I play one while I'm here) but if his numbers keep inching up, I think we might get to go to the 9th floor sometime on Tuesday.

Thank you everyone for your continued prayers and support!

hugs jules

FIGHTER

Pediatric intensive care unit.  It's where Johnny and I are spending the night.  

Sorry, it's going to be a long one...

The day started like any other day -- at 6:10am I awoke to the noise of Johnny getting sick in the kitchen (not really how we like to start our day...).  Seemed harmless enough, we both agreed it must be that I didn't give him the super charged Zantac (I can't pronounce or spell the real name) he's supposed to take with his chemo the night before.   Gave him a shower, we talked a bit and he went back to bed.

Mike took his temp at 7:15am and it was 104.9 -- pretty darn high.  Mike rushed Johnny to the ER while I packed a bag -- I typically pack for at least one night, but this morning I thought "this might be a three-nighter."  Good thing I came prepared.

They made it to the ER in record time -- and within a couple of hours blood was drawn, labs and blood cultures were taken, and it was decided to start antibiotics. His ANC was 10 -- TEN. Normal/acceptable for cancer kids is somewhere between 500-2,500.  Platelets were a bit higher coming in at around 16 (acceptable numbers: 100-300ish).  HGB was 8.5 -- not terrible -- they transfuse at 8 and under.   Obviously the kid needed platelets.  The kicker was when they started administering the antibiotics.  It all went to hell in a hand basket, F A S T.

The antibiotic concoction started with high doses of gentamyicin, tencomyicin and vancomyicin. Not all at the same time though.  Apparently when you have a bacterial infection and you get the first dose of antibiotic it breaks up the infection, then spreads it all over your body. Ever hear the term 'septic shock'?  Me? Only in movies and tv.  Today it was real life. Up close and in my face type of real life.  

Within seconds of his blood pressure dropping (as low as 60/13), fever (102+) and heart rate increasing (169!), we had 2-3 doctors, 3+ nurses, an EMT, and some guy who never really did anything except watch.  I don't think he was a looky-loo, he was wearing a hospital badge, but never really did anything.  Johnny had so much stuff being pumped into him that he had his port accessed plus a few IV's. He needed fluids super fast so he wouldn't 'crash'.  The fluids were administered by hand -- 600cc's in about 10 minutes -- and IV's don't go that fast, so it was 6 big fat serineges full of fluids. With little improvement.  

The awesome thing about this kid is he's a F I G H T E R -- hard core fighter.  Typically when this happens, kids fall asleep (not enough blood pumping to keep them awake), then it becomes really, really scary (the nurses wouldn't say specifics, but defineately gave us that vibe).  But not Johnny  --  he was awake the whole time, he didn't have the strength to talk, but would answer us with a shrug. He fought hard to stay awake for hours, just to show the doctor's and nurse's what he's made of.  It was all the doctor's needed to keep from calling it a 'Full Code' -- but he still needed to be stabilized before he could be moved to ICU.

Just about the time things started to calm down (ha!) he blew chunks -- big time -- we all gave him a 10 for distance. After he stopped and we got him all cleaned up he looked at Mike and said, "I was aiming for you."  Everyone hovered outside our door and wouldn't let us close it until they felt comfortable with only one nurse in the room at all times (that never happened). 

About 4ish (it's all a blur) he was stable enough to be moved to ICU.  Not only is ICU scary, but the precautions, rules and guidelines pretty much tell you this is very, very serious.  

Here is what I remember:

Only two persons allowed in the room at a time (they even badge you)

No cell phones (like I get reception!)

No one under the age of 14 (without doctors approval -- then only with Child Life)

Showers are on the 7th floor

About this time I said, "you don't have to tell us the rest, because we're not going to be here long enough to need a shower."

The receptionist kept reading the guidelines and asked us our religious preference and told us where the chapel was located. Then I lost it. Shit. This is serious.  But I said to her, "thank you -- we won't be here long enough to need any services."

The ER thought the possible cause of  the 'bacterial infection' (they can't confirm until the blood cultures come back -- 24-48hrs that it actually is a bacterial infection) is the port. Once we arrived in ICU a doctor came in to explain what they thought could possibly happening.

There are two types of bacterial infections:

Gram positive, which is usually caused by something from outside the body (i.e., ports, grocery carts -- yucky stuff like that). Gram positive infections are relatively easier to treat.  Don't get me wrong, it's still scary, but the antibodies (?) are easier to kill.

Gram negative, is a bacteria infection from within the body (found naturally in the body -- to help you digest your food and is usually found in the GI tract).  This type of infection is much harder to treat, and are usually very dangerous.

Guess which one Johnny has?  If you guessed gram negative -- give yourself 10 points.  Until the cultures come back to confirm this, he will be treated with antibiotics that treat BOTH infections.  As well as dopamine (which they are decreasing as we speak), and putting him on norepinephrine.  Both drugs are used to increase blood pressure. The dopemine wasn't cutting it, so they are weaning him off that and adding norepinephrine. Because his blood pressure still sucks.  80's/30's.  We are shooting for 100's/60's to be able to move to our floor (9th floor -- Hem/Onc).

He is still not even close to being out of the woods.  He is still considered acutely septic.  I'm afraid to ask what will happen if the norepinephrine doesn't work.  But IT WILL!  So don't even go there!

He's had his eyes open for almost an hour now.  The longest since we've been in ICU.  Hopefully the rest of the night will go status quo or better.  I will update more in the AM -- with good news I'm sure!

HOME AT LAST! HOME AT LAST!

This is the Johnny I want everyone to think about!

WOO HOO! Johnny was released at 4pm today, or 'first thing in the morning' hospital time. I think I know what it is -- there must be some sort of weird vortex inside the hospital that slows down time and space, and makes everything work at the reverse of warp speed. We need the clocks that show time in Tokyo, Los Angeles, New York, and Hospital time.

Yesterday afternoon I picked up Sophie and Joey to be typed for a possible match. I know transplant is a serious thing, but when I went the 8th floor (marrow transplant floor) it was way more serious than I thought. You have to get germ clearance about every ten feet. We went through 3 sets of doors and two holding areas just to give a sample of blood and we weren't much further than the front desk. Every nurse asked us if we had a runny nose, cough, fever or been exposed to chicken pox within the last two weeks. Luckily none of us had -- who knows what they would have done with/to us otherwise.

Joey and Sophie were terrified to get stuck. I tried to comfort them using my motherly instincts and told them to 'man up and grow a pair', but it didn't seem to work. Fortunately for them the hospital has Child Life specialists who are there for the sole purpose of talking to and distracting kids through treatments. After I gave my sample, Sophie hopped up for her turn. She and the Child Life specialist looked at a Surf's Up I Spy kind of book -- she didn't even flinch or whimper.

Next up, Joey. The Child Life specialist used the same book and asked him to find certain characters -- which he found in an instant almost without looking at the book, but kept a steady eye on the nurse holding the needle. He sailed through no problem. He started to remark on how well he did when the nurse asked if he wanted to lay down (he was already sitting). He said sure, but I was a little surprised because he looked fine to me. Except that he was all gray colored and clammy. I didn't know you could pass out while sitting down, but apparently it's completely plausable. They ran and got him a juice box and cookies and a cold compress. I gave the nurses a heads up about Dad, I told them to expect the same results but on a much larger scale.

Joey went up to get Mike with us and acted like nothing happened, he insisted on escorting Mike to his appointment. Once they made it through the 3 sets of doors and 2 staging/holding areas and the nurses saw them together, they all giggled and showed Mike the juice and cookies they already prepared for his anticipated reaction. He did fine -- no crying or fainting. What a BIG boy he is!

We won't know the results of the typing for about a week or so. As soon as we know, you will know too!

His surgery went well last night. As they were wheeling him in he started to crack. He never full-on cries, maybe a tear or two, but he never loses it. HE HATES HIS PORT, and it makes him sad he has one again. I tried to cheer him up by thinking about food and asked him what he wanted to eat when he got out, I leaned in to hear his tiny little voice squeak 'pizza hut' (like Orson Wells in Citizen Kane -- rosebud!). I hope I don't offend anyone here, but Pizza Hut sucks. He's never asked for Pizza Hut before, so I tried to clarify with him "you mean Mario's? Star Pizza? Hungry's? Anything but Pizza Hut, right? I don't think you like Pizza Hut." He looked at me and said Pizza Hut. When we arrived to his room I had two Pizza Hut pizza's waiting for him and he ate them until he couldn't eat anymore.

Today he had a few bags of platelets before he was released. The doctor's knew he'd be out skating or something this weekend and with all of the chemo and shots in his legs, spine and back, his legs can give out on him without warning. So they bumped him up for good measure.

The results from his spinal came back clear of blasts! That means the point of relapse is probably the marrow. The only other place it may have started are the testes -- which are considered a sanctuary for cancer cells. I think there might be some sort of markers the doctor's look for on the blasts or maybe it's a protein or amino acid. I will ask the at the next clinic visit.

IT'S IN

Pizza and a port...

The port is in. Johnny's surgery was late this afternoon, he's in the room finally eating his fourth slice of pizza. Poor kid, hasn't had anything to eat since yesterday about this time. we've requested that he been seen first thing in the morning so he can get his walking papers ASAP. They still have to give him two more shots -- the PEG asparigense -- IM (intermuscular). Insult to injury for him -- a week of IV's, chemo, bone marrow aspirations, spinal taps, surgery's and just as his mood improves because he's leaving, they shoot two large shots of radioactive liquid into his thighs -- "Oh, you like to skate? Here are two shots in the muscles you need the most ... don't forget to wear your pads".

Okay, I'm being a smart ass -- I'm very grateful of the quality of care and attention they give us here. His doctor even went to bat for him when the trial doctor wanted a pic line instead of a port. Pic lines are nasty -- it's like an IV that is partially under the skin except for two little tubes sticking out they use to hook him up. You can't shower, swim or pretty much ANYTHING fun until they are removed. The port is completely under the skin. You can live life just as normal as anyone. Dr. Dryer knows Johnny's activity level is always in high gear and a pic line would only slow him down and depress him.

He's sassy as ever -- nothing has changed -- but we wouldn't have it any other way!

TODAY'S SCHEDULE

When we had our clinic visit last Friday, the doctor's told us to be prepared to stay the night when we came on Monday, in case things ran late. We are four days into our 'maybe one night' visit. Just goes to show you that all the planning in the world goes out the window when you live on the 9th floor. I'm not complaining, it's a good thing -- the doctor's and nurses are going over Johnny's treatment and reactions to treatment line by line, then meet at least twice a day to decide their next move. Every time they drop off the menu for tomorrow, he tells us "You don't have to fill it out because I won't be here then..."


We were told last Friday that he would have a port 'installed' sometime around week four. That changed... today he is scheduled for surgery, he's on the schedule for this afternoon, but if they can fit him in sooner, they will. Johnny is actually happy about getting a port this time, he's been double fisting it for 3 days now and is pretty tired of not being able to move either hand. He has requested that at least ONE IV be taken out once the port is in. Can't say I blame him either. When I showed up last night, Mike and Johnny had come up with a signal to let each other know when Johnny needed something. It was this weird clicking noise that Johnny would make to tell Mike that he had an itch, wanted a drink, or had to use the bathroom.

Because I wasn't in on the signal planning meeting, I had no idea what was going on when Johnny started his dolphin like clicking and just chocked it up to a kid being bored and payed no attention to him. The clicking noise progressed until he finally screamed at me "What do I have to do to get a drink around here?!" At that point the guys decided to fill me in on their new communication signal. Now I got it. The kid clicks, I jump.

Before he goes to surgery he will get a few transfusions --platelets. His number was 95 on Monday and today it's about 28. If you want to donate -- now's the time. It's always a good time to donate blood products, but if you want to replenish the supply Johnny is about to use over the next few months, I will need help -- I can't do it alone!!!

I am going to pick up Joey and Sophie from school today and bring them back to get typed and tested for a possible match. Hopefully the next few hours will be uneventful for the guys while I'm gone!

TRANSPLANT

Some info about transplants and donors. We will all be typed tomorrow afternoon to find out if any of us are a match. From what the doctor's tell us it's usually a sibling, if it isn't one of us they will go to the Bone Marrow registry to find someone.

To register yourself, all you have to do is find a blood center near you and tell them you want to register. The first step is to swab the inside of your cheek, which will be sent for testing and listed on the registry. If you are chosen to be a possible match, you will get a call for further testing (this part requires giving a blood sample). If you are still a match, you might be asked to be a donor. Of all the registered donors that are tested, typed and possibly asked to donate, only 8% actually agree to be a donor. Let's make that number 100%!!!!!

Cord blood. We've had tons of family and friends generously offer their/child's cord blood if we needed. We talked to the doctors about cord blood and found out it's not a viable option for a number of reasons. First being the amount of stem cells in the cord blood is not enough for anyone to transplant, and also the potential quality (how it was taken and stored varies from company to company).

If you want to find out more about becoming a donor go to: Marrow.org it's a great site that can answer A LOT of questions. As we find out more information, I will let you know

hugs to all

jules

An Interesting Night

Double fisting it


Johnny had a pretty full day of chemotherapy on Tuesday. He is still feeling pretty good, but I know he is getting a little tired since he wasn't complaining much about being in bed all day. In the morning Joel came by to visit, and they went down to see the trains, but I think the only time he got out of bed in the afternoon was to get wheeled down for for a chest x-ray (routine), and to go to the bathroom. Later in the day they had to put a second IV line in his other hand, so he couldn't even do that by himself any more. I feel bad for the guy. Now that he has lines in both his hands he can't really play any of his games, or even feed himself. We told the doctors that Johnny needs to go ahead and get a new port if we are going to be doing this every week.

After all of his regular chemo Johnny was scheduled to have the trial drug. This is pretty serious stuff, and the first time he gets it the drip is scheduled over six hours. Because the drug is pretty potent, and experimental, they start the infusion very slowly, and then gradually increase the rate every hour. We didn't get started until pretty late, maybe 9p or so, so I knew it was going to be a long night. Before we got started the nurse read off a laundry list of potential side effects that she would be watching for during the infusion. Of course that was just a precaution, and Johnny would sail right through everything.

Johnny was asleep when the infusion began, and the first hour went very smoothly. At the one hour mark the nurse cranked up the rate a little, and took his vital signs. Just as she was about to leave I noticed that he started scratching his face a little. I knew that I had heard "itching" on the list of side effects so I told her to hang on a little before she left. Then his arm started twitching. He's usually a really sound sleeper, so that didn't seem right. Very quickly the twitching progressed into pretty violent shaking (like he had the chills really bad). Both the nurse and I knew that wasn't right, and within a couple of minutes the doctor and every nurse on the Hem-Oc floor was in our room. The doctor stopped the chemo, and they pumped Johnny full of Benedril to control the reaction. Since this is a new drug the staff doesn't have a lot of experience with it. It was obvious they wanted to wait until the next day to let Johnny's regular doctor, and the doctor leading the study decide how to proceed. I was definitely fine with that. Johnny's chills started calming down within about half an hour, then he tossed his dinner, a bunch of candy, and some stuff I don't think he even ate. I think nausea was third on the list of side-effects. Then his fever spiked. Fever was on the list too. Johnny has always tolerated his meds really well, but this stuff really kicked his butt. I was pretty bummed because this drug looks very promising in treating the type of leukemia Johnny has, and I was afraid they might pull him from the study. I think Johnny would have been fine with that though.


You know how I know Johnny's a real skater? He's been wearing the same smelly shirt for 3+ days.


This morning he was the talk of the floor. Every doctor, nurse, the head of the pharmacy department, everybody stopped by to check his charts and talk about what should happen next. The head of the study and Johnnys' doctors finally decided to try again with some additional pre-drugs to help prevent the side effects. I was cool with that, but I wanted it done during the day, while everyone was still around. As I'm writing this Johnny is about three hours into the second try, and so far he is doing well. I'm knocking on some wood, and I will definitely update on the next post.

Johnny and I spent a lot of the day going over every inch of the new Real catalog on the Deluxe site. He was stoked at all the videos, and really liked how his spot came out. Jim T. and the guys at Deluxe also provided a way to write Johnny "get well" messages. I really can't believe the response. The support Johnny is receiving from skaters all over the world is incredible! Johnny is reading them all, and I can tell it really helps keep his spirits up.

DAY ONE

We know slightly more than the last time I updated.  

The good news is, Johnny has the same leukemia he had before -- acute lymphoblastic leukemia (ALL) -- sometimes treatment for cancer can give you other types of cancer, yeah I know, it just keeps getting better and better doesn't it?  He is now considered 'high risk' because he relapsed within 36 months of diagnosis.  I tried to reason with the doctors by telling them he relapsed just shy of 36 months --  it's really 35 months and 2 weeks -- can't we negoitiate on the dates?  I'm really good at changing numbers on documents -- I used to do it all the time on my report cards!  But they seem to be stuck on this number thing...  

Yesterday Johnny had a bone marrow aspiration and spinal tap, then the doctors are able to tell what type of cancer he has, the percentage of cancer floating around in his body, and with the cancer cells he has, if there are certain proteins (or maybe some type of amino acids) surrounding his DNA and white cells. This information tells them how to treat his cancer -- what chemo will or will not work on him. So far everything we've found out has been  good news.  We asked if there were any clinical trials that he qualifies for, and fourtunately they found one.  When you're on a trial, the scrunity regarding your treatment is very intense, if something isn't working out there are doctors all over the world that are combing over your data and deciding what to do next.       

Here's the run down:  It is broken down into 3 "blocks" or months of treatment.  Today starts day one, of Block One (this block will last 36 days). Today will consist of a four drug re-induction (re- induction because he was initially induced 3 years ago), the drugs are: Vincristine, PEG Asparaginase, Doxorubicin, prednisone and the trial drug epratuzumab.  Because the drug is only in Phase II, he must be monitered during the procedure.  It will be about a 4-6 hour IV drip and he will have to double fist it (IV in both hands) too.  He's not too happy about that part.

Block One will be given once a week in the clinic four weeks.  At the end of the 4 weeks, 

if his counts haven't recovered, they will take a break before starting Block Two.

Block Two is 36 days and has scheduled hospital time for chemo.  The first 5 days will be in the hospital, more if necessary, continue on with 4 different weekly drugs (Cyclophosphamide, Etoposide 16, Methotrexate and epratuzumab.  Day 22 of this block requires a 3-5 day hospital visit as well.   If necessary, they will give his counts time to recover and start the 3rd and final block.

Block Three will only have 3 drugs -- Cytarabine, asparaginase and epratuzumab.  At the end of this block he will be admitted to MDAnderson for radiation and preparation for transplant.  We will all be tested to find a match -- usually a sibling.  If none of us match, we will check the National Bone Marrow Registry for one.

Labs from May 5 (we kinda knew then) showed 2% blasts (cancer), Last Friday showed 17% blasts, and yesterday showed 76% blasts (all in his peripherial blood) and 95% in his marrow.  

I have to get going... more info later 

They haven't drawn blood yet, so I'm not sure what his counts look like, but on this protocol no matter what his counts are doing the treatment doesn't stop.  

The Fun Before The Storm

Lots of things will change on Monday, but we decided not to worry about that this weekend. Johnny is still feeling pretty good, and we all thought that it would be a shame to waste what energy he has just waiting and worrying about what will come. Before we left the hospital on Friday we had a pretty good plan for the weekend. We had been putting off having a paintball party until his friends were done with the TGSA state championships, but obviously the time for waiting is over. Saturday would be war! Johnny has been looking forward to the opening of the new skatepark for months, and when he heard that he is sick again he was really disappointed (or pissed might be a better discription) that he would not get to skate it again. I didn't know if I could help him, but I made a call to a good friend who helped get the park built and let her know what was going on. Within an hour I got a call letting me know that the city was going to open the park for him on Sunday morning. I love Galveston!!!

Saturday morning started early. We picked up Johnny's friends and headed out to the paintball fields for a day of shooting each other. Everyone got involved, and I have to say that Julie scared me a little. I'm just glad she was always on my team. We got back to the house about 4p, and held a little belated birthday party for Johnny. The house was packed with friends and family, and there were kids running around everywhere. Lots of skating, basketball, games, and running (usually all at the same time) until almost 11p. I think everyone had a really good time, and Johnny was stoked to say the least.












Everyone was still pretty wiped out Sunday morning, but Johnny was up and ready. He was not going to miss an opportunity to skate the park. We me our friends Rhonda (who was instrumental in making this happen) and Wes, Heath's family (mom Kim, and sister Elle), and Johnny's grandmother and aunt (who have never really seen Johnny skate). We also met Barbara from the Galveston Parks Department who let us in and made sure the police didn't come by and kick us out. When we got there the bowl was pretty dirty so everyone went to work to sweep up all the mud and rocks so Johnny could get in a few runs. Although he didn't last long in the heat, he had a great time. Even though he didn't skate long, he seemed very satisfied. There were a lot of pictures taken, and I know they will mean a lot to him over the next few months. I will definitely post a few during tomorrow's update. After skating the whole crew went to Mario's, Johnny's favorite restaurant, for pizza. Everyone was pretty tired and full, so we headed back for naps. Johnny rested for about 5 minutes before he was asking to go to the beach. There weren't any waves, so no surfing, but he had a blast playing in the water with Aunt Liz, and his brother and sister. We then wrapped up the day shooting hoops until after dark.

It was a good weekend.

IT'S BAAACK!

During Johnny's clinic visit today we found out that he has relapsed.  Luckily his counts were good enough for us to come home and enjoy the weekend before the whole process starts. Monday we find out more -- what type of leukemia he has, and the genetic markers to find a donor.   What I do know is that he will have a few months of very intensive chemo, then radiation to prepare him for the bone marrow transplant.     

Right now he is outside playing basketball and skating with Joey. Sounds like a good I idea -- I'm outta here!