I'VE GOT NO STRINGS!

I got no strings to hold me down, to make me fret, or make me frown. I had strings but now I'm free, there are no strings on me.  Nothing ever worries me, I'm as happy as can be. I want the world to know nothing ever worries me!  I've got no strings so I have fun, I'm not tied up to anyone. They've got strings but you can see, there are no strings on me!

Today the doctors decided to take Johnny off TPN completely.  Normally they would never think about doing such a drastic maneuver, but because we are here at least until next week, they felt they could take a chance and see what happens.  Hopefully nothing.  Johnny's weight has increased everyday -- and it's not water weight either.  His counts are coming up -- his ANC is 500 and platelets have held steady.  He's eating small meals all day long and doing PT. 

 

Yesterday...

All morning long we plotted our adventures for when Johnny was free and unhooked.  We walked ALL over the hospital -- on our way back to the room Johnny said, "Since we walked so much today, I think that counts as my PT", and just as he finished his sentence the PT nurse came around the corner.  The cool thing about PT is they never take no for an answer.  She took him up to the PT floor where I watched him play basketball, work on his balance and building his leg muscles.  If he's standing in front of you, he looks 'healthy' but once he starts to walk, you can tell something is up, his PT nurse said he 'hides it well".  He cannot get up from a sitting position without help, but hopefully that will be fixed by the end of the week.

The lung CT is scheduled for Wednesday.  The ID docs came in late this afternoon to say they want a CT of the gut and sinuses too, just to make sure there isn't anything happening in either place before they start to cut back on the meds.  Because the gut and sinus CT were just added today, they might have to be scheduled for another day -- unless they can knock it out on Wednesday.  I hope that makes sense...

TODAY!!!!

Joey comes home tomorrow and Johnny cannot wait!!!  The boys have been talking to each other every night -- no one makes Johnny laugh more than his big brother.  I bet there will be a HUGE improvement in Johnny's spirits and health once the boys are together again.

Not So Fast

So yesterday Dr. Shah and Dr. Bracket mentioned that they would like to spring Johnny before the holiday weekend. They didn't say it was a done deal or anything, but it sounded like the TPN (or "tube food" as Julie would say) was the main hold-up, and if he started eating this week we might be out of here. Today they were a little more realistic with the timeline. It's true that Johnny does need to start eating so he can get off the TPN, but there is also the issue of the anti-fungal meds he is still getting by daily IV. Since nothing grew on the culture from the biopsy no one really knows what is happening in his lung, and therefore no one is ready to take him off the anti-fungal meds. The Hem/Oc docs would like him off because of the stress on his kidneys, but the ID docs don't want to end the cycle early unless they are either sure the issue is gone, they know for sure it's not fungus, or the cycle is finished (two more weeks from now). They should know more after the next CT scan of his chest on Tuesday. We'll see if it is enough to convince them to pull the meds. I'd love to take him home, but I don't want to come right back to the ICU, so I'd rather that everyone be comfortable before they set him free.

Johnny's TPN was pulled back to 18 hrs/day so he was actually completely unhooked from the IV pole for six hours today. Freedom! Not having to drag that thing around is a big improvement. He made it up to 16 today to play a few video games, and went down to 1 to check out the model trains. He's seen them a hundred times before, but it gave him a destination.

Julie and I also had a little freedom today. Since Johnny is finally doing better my mom came up and sat with Johnny and Sophie for a couple of hours so we could go get a bite to eat. It was nice.

TOUGH LOVE

We slept in this morning, I mean really slept in -- 'till like, 10am!  I woke up to our HemOnc docs telling us the plan for the weekend, so some the details are a little foggy.  Basically all of his meds are oral with the exception of one anti fungal and the frickin' tube food. Chemo isn't due for another week and that is just a spinal.

The underlying theme/vibe/phrase was; 'When you go/get home..."  I loved how it casually rolled of their tongues; 'At home you can...,' , 'When you get home...', or 'We will talk more about going home...'.  The big topic was nutrition -- Johnny's least favorite hospital topic right after PT.  Whenever we get home, Johnny still might be on tube food. Of course we don't have an IV pole sitting around the house, so they have this nifty little backpack he would wear 8-12 hours a day -- full of tube food.  Oh goody.  To avoid this from becoming a reality, he needs to eat real food -- the nutritionist said anything from gummy bears to steak and baked potatoes loaded with butter. 

Here's the catch, his body thinks it's full because of tube food 24/7.  The natural reaction would be, 'Take him off that crap', right?  It's not that simple.  The anti fungals (most notably, ampho) not only eat up fungus, it also gobbles up just about every nutrient you need to function, like potassium, sodium, calcium, albumin, to critical levels that can't easily be fixed by a vitamin or a few bananas.  Everyone knows that chemo messes with your taste buds -- so does the ampho.  He doesn't feel like eating because his body thinks it full, when he finally does eat, everything tastes like sour metal.  

Once the docs left I was all over Johnny about eating -- 'What sounds good, what can I get, what can I make...' His answer is always 'nothing', so I started pushing him hard.  Which I knew was the wrong thing to do, but I really feel like we are so close to leaving, and didn't want to mess it up because of stupid tube food.  Just eat, damn it!  How hard can it be?  I really upset him --  Mike noticed and asked for Sophie and I to leave the room.  They talked and Johnny promised Mike that he would at least try one bite of everything we bring him -- because some food he didn't like before might taste better now.  Mike got through to him and then had a little talk with me.

I stopped obsessing and talking about food and quickly jumped on the PT-train-to-nowhere.  If Johnny got up and walked around a little, he would burn a few calories which might make him hungry! See how clever I am?  -- knocking two tasks out at once. Clever yet so transparent... Johnny shot me the hairy eye along with a few other 'signs' that I won't repeat.  We are a lot alike in that, if you push him/me to do anything, even if it's something we like/love -- we shut down, refuse to do it -- suddenly it's the worst thing in the world.   ...And I know this, yet I still push...  

Today a friend of ours had a big lunch, provided by other cancer families, up on the 16th floor. It was in the 'teen room' which meant there would be arcade games, music, foose ball and other fun activities. WHO WOULDN'T WANT TO GO, RIGHT?   Johnny refused until a couple girls that were helping with lunch on 16, knocked on our door asking him to join them. Only then would Johnny get out of bed -- oh, sure -- for a few hot teenage girls he'll do it....

On 16 there were tons of families, food and fun -- none of which Johnny wanted to fraternize with. I sat him down at an arcade game for a while so I could at least talk to a few people.  Once his tube food drip started beeping we headed back down to our room.  When we got back to the room, amazingly, he didn't jump back into bed, but walked over to the window and started chatting with me.   Mike and Sophie left for the house about noon so it was the two of us most of the day -- we talked, played games (he's been kicking my ass at Uno the past two days!) and had great afternoon together.  

Johnny ate 3 meals (gummy bears and chicken nuggets count) and walked to 16 without a wheelchair -- the first time he's done that since we've been here! Don't worry, I didn't make him take the stairs -- I let him use the elevator - I'm not that mean...   Even though we started the day on a sour note with tough love, I think it ended nicely and this might be a real turning point for all of us!

NO COMPLAINTS

Today was pretty good. Chemo started back up -- the last time for the trial drug epratuzamab. All that's left for this block is a spinal tap sometime next week along with a bone marrow aspiration to see if he's in remission (5% and lower for blast count). Because 4th of July would be the day he is 'scheduled' for the procedures, we are hoping that everything will be moved to the following week. That will give his body time to recover from infection, chemo and the possibility of a false reading from the GCSF (stimulates white cell count).

Either way, we aren't worried about it right now. Johnny got hit with two big drugs today in addition to the stuff he's been on for the past 3-4 weeks and he did very well. We played games, watched movies, did PT and even gave him a bath! We are living in the moment and not thinking about 'what comes next'. Still no fevers (the 'F' word) and we are hoping for an extremely boring, uneventful weekend!

Joey comes home MONDAY! WOO HOO! I guess the only complaint would be from Johnny -- his brother isn't home yet, and his little sister will be with us all weekend long. As long as he's yelling at her, we know he's still got a little spunk left, no matter what drugs they throw at him!

BORING IS GOOD

The HemOnc docs gave us the results from both procedures this week (bronchial wash and needle biopsy). Both came back negative for any growth -- most would think that is great news (we do!) but if it doesn't grow, you can't target the infection. HemOnc seemed happy with the results but the ID team was disappointed.

ID really wanted to know what was going on in his lung -- the procedures told them it was an infection and as it healed, left dead tissue behind -- no news there! From the slides, you can't read what type of cell it was which is good because it's healed, but bad because we still don't know anything. One thing everyone agrees on -- it was using any ANC it could get it's greedy little hands on. Which might explain why it appeared to be larger and brighter on the last CT. At this point we won't know what it was unless we go in again and get a big chunk -- but NO ONE wants to do that. And frankly, I'm tired of talking and thinking about the 'mystery mass'. Onward!

As the game plan stands now (tonight, at this moment -- tomorrow it will probably be different), chemo resumes tomorrow, continue both anti-fungals and one antibiotic for another 2-3 weeks, plus a follow up CT sometime next week. He will be closely watched next week by every team this hospital has to offer to make sure he's stable and balanced.

PT will continue -- currently, not his favorite thing because it requires him to get out of bed for more than just a squirt. Everyone agrees he must keep his strength --that is what saved him the last few weeks. No more GCSF (the stuff to boost ANC's) but he will continue with TPN (tube food) and meds to make him hungry. He's been on tube food for a few weeks now and it can/will ruin his liver, which he will need when he transplants (or, pretty much in general). The incentive is, if he were eating well he wouldn't need TPN and most of the day we would be tube/wire/IV free!

Overall it was a good day, nothing to shocking or earth shattering -- and we (doctors and nurses too) welcome boring at this point! Boring is GOOD.

Julie's B-Day

We celebrated Julie's birthday today.  I'm not going to tell you how old she is, but I met her in '91, and I'm pretty sure she was legal then.  I'm going to go out on a limb and say that today was a pretty good day for her all things considered.  She only asked for a few things; that Johnny not spike a fever, that Johnny get out of bed and walk around, that he smile a lot, and that he take a bath at some point during the day.  She also asked for a couple of things from me.  I'm happy to say we both delivered, and Julie got all her birthday wishes.  We definitely need to keep mama happy.  

 

UNO

Today was the first day Johnny and I played Uno since he was admitted 30 days ago  -- of course I let him win both games.  Once he really starts to feel better, the gloves are coming off -- I will show no mercy! 

The HemOnc team discussed 'thinking about a game plan' when the biopsy results come back, at least 48-72 hours.  Not much has changed since yesterday, we will s-l-o-w-l-y peel off one antibiotic a day or maybe every other day depending how he does and continues to be fever free. Although a prophylactic antibiotic (Cipro) will be added just in case.

Good news about the biopsy is nothing has grown.  Once we find out which fungus or bacteria is/was in his lungs, specific meds will be used.  If he needs both anti fungals the same plan applies; eventually and very, slowly cut back on dosages/meds. Treatment for fungus is long -- possibly months and usually given through IV.  

Today Dr. Shaw very causally said, "Once your HOME, you will have to come back 2-3 times a week for the anti fungals" -- What?  Home?  That hasn't even been close to being on anyone's radar in weeks!  Her goal is more than just making him well enough to go home, but strong enough to go home and skate!  How cool are those doctor's orders?

REPLENISHMENT DRIVES

July is a busy month for the Blood Center -- we have 3 drives organized by family and friends to try and give back what Johnny's used.  If you think you don't qualify to donate, think again -- go to giveblood.org and check out the list.

Thursday, July 3: Damian and April are holding a drive/marrow registry.   Go to skateboarder.com or giveblood.org to sign up.

Sunday, July 6: Jason and Rene organized a drive after mass at St. Ignatius on Cypresswood.

Wednesday, July 16: Dad's company has been working on a drive for a while now - you can also register to be marrow donor.

Make your appointments online for faster service, but walk-ups are usually welcome too.

BIOPSY AND PICC

This came from Jim T. -- Mike calls him Johnny's 'fairy godfather' because he does all of these really cool things for him... like this shirt:


One of Mike's friends did a little photoshop for us:




Nothing too exciting today (I guess that is kind of exciting).  This weekend the HemOnc team decided that this whole 'illness thing' has been going on w a y too long and their goal is to end the cycle once and for all!  Not their exact words, but definitely the vibe we got. Teams of doctor's came to check Johnny physically, his chemistry's and CBC's.

The fevers and constant crappiness that Johnny's been feeling lately could all be medically induced -- every one of the meds he is on has a side effect of fever, vomiting, plus more fun stuff.  But to get to the bottom of this cluster f@&k, we first have to biopsy his lung and target each specific infection rather than hitting him with the 'broad spectrum'.  

Our main objective is Johnny's health and ability to fight infections, so the needle biopsy has been on the back burner -- until now.  Nothing has really changed chemistry/CBC wise, his ANC is still zero, but we have to find out what the mass in his lung is, so we can move on.  Our doctor's had all of their ducks in a row (honestly, as fast as things were happening today I think HemOnc slipped the other departments a Jackson or two to help 'facilitate' the process....) -- IR (interventional radiation) called for Johnny at 10am!!!!  

The procedure took about an hour and a half -- the biopsy and PICC line were done at the same time.  A few hours in recovery and we were back in the room by 3:30.  Fast. So fast that by the time we got back to the room it was time for mommy to take a nap.  I slept though the rest of the day, but woke occasionally to see a few doctor's make their rounds.  They all said the same thing, "Once we figure out what is going on in his lung, we will target that germ and peel off the drugs he doesn't need".  

Basically his lung has a hole in it (before they poked him for the biopsy).  It could be where the fungus was very aggressive in the beginning and as it healed, the dead cells ate a hole in his lung.  This will heal on it's own, but in the process, it is very painful as the wound rubs through to his pleura. It could also be bacteria -- possibly a weird strain of TB. Truthfully, we are just shootin' blanks right now trying to guess what's the mystery mass is, within a day or two we will have some answers.  

All of the doctors thought that his lungs looked very healthy, hence the reason they opted for the biopsy.  Another concern was that since his lungs looked virtually clear of fungus except the one spot, it could be leukemia (very rare, but possible).  When they did the wash this weekend, from what they saw through the scope,  everyone was very much relieved to see that it wasn't a cancerous lesion.  uh. yeah, to say the least!!!

Now we wait for the results from the biopsy and move on!

Grand Central Station

Not a lot of new news regarding Johnny today.  He still has a low grade fever,  he still has occasional chest pain, and he still feels like hammered poo poo.   Both the Hem/Oc and ID teams came by today, but everyone was pretty much just focused on figuring out what is going on with the spot in Johnny's right lung.  Since that won't happen until we get the biopsy, hopefully tomorrow or the next day, they just went over the options that may be available, and what the risks of each might be.  The Interventional Radiology team will be the first option since they would do the needle biopsy.  If they don't think they can reach the spot safely then the procedure will be done by the surgical team.  Since Johnny seems to get an infection every time anyone touches him I'm not that excited about anyone poking a hole in him, but the IR team will poke a smaller hole than the surgical team, so I'm really hoping they can do it.  A needle biopsy still has risks.  My dad had one that later leaked air into his chest cavity and he blew up like a balloon.  It was freaky looking.  Also very painful when they installed a vent to let the air out of him.  Not fun, and I really don't want Johnny to go through that after everything else that has happened to him.

Johnny had quite a few visitors today.  Julie's parents came by and spent a couple of hours with him.  While they were here my mom, and her friend Jenny stopped in also.  They were here dropping off food they had prepared for families here at the hospital, so they only stayed for a few minutes.  As soon as everyone was gone Julie showed up with Sophie, and then my mom and Jenny returned.  It had been pretty quiet around here for a while, and I think Johnny liked the action... for a while.  Then I think it wore him out.  When everyone left he was definitely ready to chill for a while.  Then after about an hour we got another knock at the door.  Our friends Troy and Jessica Guffin, Missy, and Jessica's friend Erin stopped by on their way back from a weekend in Dallas.  Although Johnny was already pretty worn out I think he really enjoyed the visit.  Everyone was talking story about surfing and sharks and stuff, so all he had to do was sit there and listen.  He loves that stuff.  Those guys had a truck full of very large dogs in the parking garage so they couldn't stay long.  That worked out because Johnny fell asleep within a few minutes of their departure. 

No Answers Yet

Johnny had the scope of his lungs today.  They went in as far as they could, but couldn't get all the way to the spot in question.  They did fill the area with clean fluid, and then collected it for testing.  The doctor that did the scope said the fluid looked pretty clear so she wasn't confident that anything will grow on a culture.  She also said the area of Johnny's lungs visible through the scope looks really healthy.  Johnny's Hem/Oc doctor was both pleased and disappointed in the report from the scope.  She was very happy to hear that Johnny's lungs look healthy, but she was hoping that there would be some material that would confirm what type of infection is working on that spot.  They did send all of the fluid off for testing, and there is still some hope that we will learn something.  If that happens I hope it will be soon because Dr. Shah will schedule a surgical biopsy of the spot early next week if we don't have some answers before then.  She is getting impatient because Johnny is going on two weeks without chemo while we fight this mysterious infection.  She wants to know exactly what it is so that she can make an informed decision on whether he can move forward on treating the leukemia, and so that she can take him off some of the meds he is getting just to cover every base.  At this point the spot in his lung seems to be the only really abnormal thing going on, so the thought is that once we know what is going on with that we should be able to focus on just the meds needed to treat that infection. 

Right now Johnny is on so many different types of medications that the nurses are having trouble scheduling everything.  He only has the peripheral IVs so he can only get so much medication at once which is why they have him on a pretty full schedule.  Dr. Shah wants to get him off of everything that is not directly targeting the infection in his lungs.  She is worried that because many of the drugs are very strong they are making him feel really bad, and she also believes there is a possibility that some of the drugs may actually be causing this constant fever that is currently being attributed to an infection.  Obviously the best case would be that we find that the spot is actually popping on the CT because it is healing, and that the fever and overall crappy feeling is due to the meds.  The only way we will know is to actually confirm what is going on in his lung.  I'm not excited about the idea of poking a hole in Johnny's lung, but he needs to get back on chemo so....

A Little Chest Pain

Johnny has been feeling like crap since this all began over a month ago, but until last night he wasn't really having any pain.  At least not any he would complain about.  During one of the every 15 minute trips to the bathroom Johnny complained that his chest hurt on the right side.  He has asked for pain meds a few times today for the same pain, so it is probably bothering him pretty bad.  The chest CT he had yesterday shows that his lungs have actually cleared nicely, except for one spot on the right side.  You don't actually have any nerves inside your lungs, but this spot looks like it is very close to the wall of the lung so it may be pressing on the lining, which does have a lot of nerves.  The doctors had been willing to take a "wait and see" approach to the lung issue, but now that it is starting to bother him they want to go ahead and find out exactly what is in there so they can make sure they are dealing with it appropriately.  So Johnny has now added the Pulmonary department to his growing team of doctors.

Once everyone had examined Johnny, and reviewed his history, CTs, and charts, it was decided that they would try the least invasive procedure first, and then if they can't get a sample of the tissue they will move on to more surgical procedures.  The least invasive procedure involves running a small hose with a camera into his lungs and flush the area with clean fluid and then suck the fluid out with the hopes that some of the infected tissue will collected.  Because of the location of the spot they won't be able to get the camera all the way down to the infected area.  If they could they would just grab a piece with a little claw, but this will have to do as a first try.  If they aren't able to get a sample then they will start looking at surgical options early next week.  Because the spot is near the outside wall of the lung they will probably do a needle biopsy.  Usually that isn't a big deal, but because of Johnny's propensity for infections everyone would like to avoid poking holes in him if possible.

The spot may be the cause of his lingering fever, but he also has a spot on his arm where he blew an IV a couple of days ago that is pretty red and irritated.  If this is infected he is covered for anything that might be trying to grow there, so the doctors aren't really concerned, but they are keeping an eye on everything.

We are going to try to get Johnny back on physical therapy this weekend also.  This last week or so has been pretty hard on him, and he hasn't gotten out of bed much at all.  I hate making him do anything he doesn't want to, but he needs to get a little exercise so he can keep his strength up.

One Problem Figured Out

The ECCO of Johnny's heart came back fine.  His heart has been getting quite a workout due to the high fevers.  I've gotten to the point where I can tell his temp by looking at his heart rate on the monitor.  When he as up over 104 his heart was beating in the 180s - 190s/minute.  This is one more reason why we are lucky he is in such good shape.  The doctors are constantly commenting on how well he is handling the stress of these infections and medications.  They weren't really looking for damage.  They were checking to see if there was any bacteria or fungus stuck to the valves.  Apparently that can happen, but luckily Johnny not an issue for Johnny at this point.

The ultrasound of Johnny's kidneys also came back ok.  The Renal team did discover that due to the amount of fluids he is receiving his blood saline levels are really out of whack.  This is allowing fluids to "leak" from his circulatory system and cause him to bloat.  Julie and I have noticed he has looked "puffy" from time to time, but it usually cleared up pretty quickly.  When this happens his belly button turns into a little slit.  It looks like his stomach is smiling at you when this happens.  His normal doctors weren't really all that concerned about it until yesterday.  This time he has stayed puffy, and his hands and feet also look bloated.  That's why they asked the Renal team to take a look at him.  Fortunately they were very quick to diagnose the problem and suggested a couple of new drugs to help him shed the extra fluids and bring his blood chemistry back in line.  A simple fix, but he will probably be waking Julie and me up all night so he can go to the bathroom.  I'm just glad this issue is figured out.  The smiling belly button thing was starting to freak me out a little.

No word yet on todays CT scan of his lungs.  The ID and Hem/Oc doctors will probably take a look and tell us what they think tomorrow.  If the radiologist looks at it first they will give us the results.  If not they will give us their opinion with the disclaimer that they are not radiologists.  

Johnny has had a consistent low grade fever since leaving the ICU.  At this time he is being covered for just about every bacteria or fungus known, so the doctors are working hard to figure out where the issue lies.  The first assumption is that he still has some type of infection, but it's also possible he could have a virus, or even some of the medications can cause fevers.  Hopefully we will have more answers tomorrow.  

BUSY DAY PLANNED

Last night was interesting, about 7:30pm Johnny spiked a 102.9 fever, his heart rate was slightly higher, but nothing like it was on Sunday, and his blood pressure started to climb as well. Oh, and he started retaining water all over his body -- hands, legs, feet, belly -- like he's been eating General Joe's sweet and sour chicken all week or something. 

This morning the HemOnc docs told us they are going to ask the renal team to check Johnny's renal (kidney) function, plus an ultrasound of his kidneys to make sure there isn't any bacteria or fungus hiding out, breaking off every now and then causing fever.  

An ECCO of his heart to make sure that fungus or bacteria isn't hiding on a valve or in the lining of his heart as well as checking heart function because it's been pulling down so much overtime lately.

Then a follow up CT of his lungs to make sure the spot hasn't grown, with hopes that it might actually be shrinking...

Last but not least a visit to ophthalmology to make sure there isn't any bacteria or fungus in his eyes either!

I have no idea when any of these tests will happen, but I will let you guys know when they do and what the results are!

This kid is made of steel -- he has super human powers that surprise everyone -- everyday.  We need to make him a 'Superman' shirt, but instead of an 'S', it should have the initials 'JR'!

903

WE ARE IN ROOM 903!!!!!!!!!  

The doctors made their rounds today and gave us the okay to go back up to 9 and a few hours later -- HERE WE ARE!  No changes in meds, a CT will be Thursday or Friday and no real talk of when chemo will resume, but I'm sure it's on their minds.

The volunteers must have mystical/magical powers because soon after we settled in on 9, they already had egreetings for Johnny!  I think we single handily used up the special egreeting card stock because now everything is on giant index cards...

Hugs to all!

jules

WE'RE ON THE LIST

Last night went really, really well.  No fevers, heart rate and blood pressures are trending down and oxygen levels are great.  ID said since they know the source of the bacteria (the PICC line) and it was removed yesterday, they will start peeling off the antibiotics and get down to the ones that target the resistant bacteria. I actually had to mention something about the spot in his lung -- they didn't seem too concerned about it and not to overly excited/rushing to get another CT.  We will have another one this week, but it's not an 'emergent' issue.

We were last on the HemOnc list of people to visit -- that's a good thing.  They told us that Johnny is on the list to go up to 9!!!  Unfortunately, we don't carry the same kind of clout as we did coming down to ICU (we literally had so many people/doctors/specialists following us down it required two elevators).  I asked if I could slip the Attending's on both floors, a 'Jackson or two' to help the process along, but apparently our doctor's have 'morals' and don't accept 'under the table donations.'  Hopefully we can get up there by tomorrow evening.

Keep sending the egreetings -- the entire hospital staff, Junior League volunteers, Ronald McDonald House volunteers and  mail room staff knows our location at all times, so we don't have any problems receiving mail.  The FedEx guy usually has an AM and PM run for us....  I like the FedEx guy -- he wears  appropriate uniforms -- he looks like a FedEx/mailroom guy. The other day a hospital 'thingy' was broken in our room and needed repair. I was sitting in the room minding my own business when a man dressed in a white doctor's lab coat with his name embroidered across his chest, walked in our room.  I looked up and thought "crap. now what?" and asked him what his speciality was, and he told me 'repairs'.  I yelled at him "You guys need to wear repair man stuff, like a tool belt or big clunky boots or something -- you almost gave me a heart attack!'  I doubt they will take my fashion advise, but it would be helpful to parents to see a repair guy walk in shabby clothes once in a while. 

This weekend was the TransWorld Skateboarding 10th annual awards ceremony and the entire show was dedicated to Johnny Romano -- go to dlxsf.com and click on the link.

Rotating Doctors

So how do you know you've been in the hospital a long time?  When you outlast their rotations.  Today was Dr. Su's last day with us.  His rotation is over, and we will get a new Hem/Oc Attending starting tomorrow.  The new Attending will be our third since Johnny started re-induction over a month ago.  We also got a new ID Attending today.  I'm starting to lose track of who is who.

The new ID doctor, Dr. Munoz, came with some news about Johnny's new infection.  It was confirmed this morning that he has another Pseudomonas infection.  This time a more drug resistant version than he faced last time.  Apparently this is a pretty smart bug, and adapts pretty quickly.  We will now be using the Mercedes Benz of antibiotic drugs.  The ID doctor actually said we will be using the Cadillac of antibiotics, but when she saw the look on my face she stopped.  "Not a fan of Cadillacs?"  Well, they're really just Chevys with a coat of lipstick.  "OK, what's a really high end car?"  That's how we got to the Mercedes analogy.  We are also keeping a close eye on the lung infection.  The latest CT scan showed that one of the spots may be growing.  Johnny will get another CT scan of his chest after a few days on the new antibiotics to see if there is any improvement.

Johnny also lost his new PIC line today.  Both the ID and Hem/Oc doctors felt that because Pseudomonas is a "sticky" bacteria that the line had to go.  Back to Johnny Needlehands for a while.  That's better than the Human Torch.  I wasn't in the room, but Julie said the PIC line got "stuck" coming out.  A doctor had to come in and give it a good tug to break it free.  Julie's first questions was "Did it break?"  Luckily the end was still attached.  It's a good thing I wasn't there or they probably would have sent me to the ER after I fainted.  

Johnny did a little better today, but he needs to be fever free (or at least less than 101) for 24 hours before we can start thinking about going back up to the 9th floor.  We can't wait.     

   

Back In ICU

Johnny has been fighting a fever since Friday, and yesterday it was confirmed that he is fighting another gram negative bacterial infection.  It's too early to know for sure, but the ID doctors believe he probably has another Sudimonus (sp?) infection.  Since he should have still been covered for that type of bacteria they switched him to some meds that are more effective against resistant strains.  There was some hope that we could treat this on the 9th floor, and keep him out of ICU, but he continues to spike pretty high fevers.  Pretty high being 105+ with a heart rate in the 190s.  He's definitely pretty sick again.  Before moving him to ICU Johnny had another CT of his chest and torso.  His gut still looks pretty good, so if the infection started at his bottom it hasn't spread to his intestines at this time.  They did notice on this scan that one of the spots in his right lung looks a little larger.  Most of the others are much smaller, or gone, so they will keep an eye on that one place to see what it does.  It may or may not have anything to do with his current condition.  

Doing an impersonation of the Human Torch, and being moved to ICU, did not stop Johnny from entertaining a few visitors from out of town.  One of our friends, Mario Miller, is now the team manager for Circa.  He was up in Dallas with a group of skaters doing a promo tour, so he loaded up the van and drove everyone down to the hospital for a visit.  In addition to the team already in Texas, Peter, Ernie, and Justin flew in to join them.  All in all there were ten guys waiting around to see Johnny.  ICU rules state that there can only be two visitors in a room at any one time, including parents.  When Julie told the doctors that there would be a bunch of pro skaters coming to see Johnny, and asked it an exception could be made she got an immediate "no problem."  Only at a children's hospital.  We did break them into two groups of five, but only because the room was really too small to fit the whole group.
 

The first group to go in were the guys who have known Johnny for a while.  Ernie, Justin, Peter, and Mario are regulars at the Texas Jam for Make-A-Wish.  Ernie Torres was one of the original guys who spent time with Johnny at MAW almost three years ago, and they have been buddies ever since.  All of these guys really seem to care for Johnny, and there was a pretty serious air in the room during their visit.  They were joking around with him, but I could tell they were really concerned.  The next group in were the Circa guys who came down with Mario.  None of them had met Johnny before this, but they all seemed to hit it off right away.  A couple of the guys get boards from Real, and let Johnny know they were looking forward to riding his new deck.  That stoked him out.  All of the guys who came today had been traveling a lot lately (some had just gotten back from China), and were probably still suffering from jet lag.  I'm sure they were tired, but every one of them acted like they had all the time in the world to hang out with Johnny.  Definitely good people.

As I write this Johnny has now had three consecutive hours of temp below 100.  I'm praying that the new antibiotics are doing their thing, and we can get back up to the 9th floor as soon as possible.  It's pretty sad that my goal has shifted from leaving the hospital to just moving to a different floor.   

JOEY'S SUMMER VACATION

Joey has been hanging out in Waikiki for 12 days -- I think he misses us, but somehow he mustered enough strength to be the life of the party...

I miss Joey SO MUCH!  This is the longest he's ever been away and he still has 16 days left!!!
You can't go to Hawaii without taking a picture in front of two statues of bug-eyed children wearing pineapples for hats...

Joey feeling the Aloha vibe.  Nice wave, nice shot.

We have the results from the blood cultures drawn yesterday -- it's positive for gram negative bacteria. ... yippie...  

BRAVO! to our doctor's for anticipating the infection and treating it before it got out of control.  We're not sure which gram neg. bug it is, but we suspect the infection started where Johnny ends (his butt).  

Man, I can't catch a break -- with Joey half way across the globe I thought for sure I could go a day without someone talking about butt cracks...

The cultures will be checked daily to determine the culprit. Whatever it is, it has found a home and set up shop in his PICC line -- just one lumen (the tube-y things sticking out of his arm).  If after 3 days of cultures and the line still tests positive for bacteria, the line will be removed and we're back to 'Johnny Needlehands'. The caveat to this is if the bacteria is considered to be "sticky" (hard to get rid of) then the line will be pulled ASAP. 

I didn't ask what the docs thought it might be -- it doesn't matter, he's being treated for just about all of them. I'm just grateful they caught it in time, and we avoided a week in ICU. Monday, Johnny is scheduled for a CT of his gut to make sure nothing else is happening, like tephlitis (inflammation of organs and intestines).  Think positive (actually, negative...), and the docs caught it so early the bacteria didn't have a chance to accelerate!

Mike and Johnny sent me home Wednesday and Thursday,  my first time home in over 10 days.  I have to admit, it was nice to be on the 'outside' for a while.  Mike had been pushing me to go home for quite some time, but I didn't want to leave -- then Johnny told me to leave because I was 'freaking him out' .  No matter what time of day or night he looked over at me, I was starring at him -- sometimes I blinked, but for the most part just stared at him. I tried to explain to him it was a' mom thing and he wouldn't understand', but he didn't go for it. 

My time on the outside was pretty uneventful all the way around so last night I came and relieved Mike.  About an hour after Mike left for the outside, Johnny decided to spike a fever -- first one since last Friday.  Great. He was given Tylenol and started back on his antibiotic concoction. His temp was about 102.1, heart rate 177, and blood pressure seemed to be dropping.  Awesome.  I had flash backs of our ER experience and started to 'panic' a little. Okay, A LOT.  I had the nurse charge, the doctor's and anyone else who would listen to me, in the room as I demanded that he be put on a heart and blood pressure monitor.  They gave in and put him on a heart monitor but passed on the BP.  Johnny told me to "cool it!"  It took 4 hours for his heart rate to drop to the 140's-130's and fortunately his blood pressure stabilized.

Cultures were drawn and so far nothing has shown up.  We may know what is going on to make him spike a fever again.  His Butt. This is the time you may want to stop reading if you don't like butt/poop talk.  His platelets/red blood cells/ANC's have been extremely low for weeks and weird things happen to you when your counts are low -- like little fissures (tears) on your ass. In addition, this 'special area' is already irritated from radioactive poo shooting out the past 20 days.    

The docs came in this morning and said that this is probably another bacterial infection due to low counts and a sore bottom, in an area that is hard to keep squeaky clean. He will continue with 4 antibiotics he's had in the past, stuff for pain, anti fungals -- and no chemo on Monday. Our goal is to keep him on the 9th floor and OUT of ICU.  I think that we nipped this in the bud and he will get past this like he did the other infections.  The kid's a fighter!

Making Progress

Almost all of Johnny's counts were better today.  For the first time in quite a while he didn't require any type of blood transfusion.  His K is still a little low, but it was high enough (just barely) for him to get his anfo this morning.  I hate that he had to delay getting the antifungal yesterday because it's really important that we keep the pressure on the infection, but I do have to say I like how the timing worked out.  He had been getting the drug late at night, and because of the possible side effects either Julie or I would stay up to watch him.  He is now getting it around 11a so I'm anticipating that we will get a little more sleep than we've been used to.  That should relieve a little of the physical stress since it will be easier to stay rested.  The one downside of his receiving the med in the day is that he needs a full dose of Benedril for pre-medication.  This puts him to sleep for a couple of hours, which isn't bad for him, but does make having visitors a little tricky.  If anyone wants to see him awake they will either need to be here early, or arrive after about 1p.  

Heath and his family timed it perfectly today, and came to visit about 2p.  As always they brought Mario's pizza.  I was a little worried since Johnny didn't really eat much this morning.  His stomach still looks a little bloated, so I was concerned that he might be having some pain that he wasn't admitting to.  It turns out he was just waiting for the pizza.  When Kim walked in she asked Johnny if he was ready for a piece.  He just took the whole box and went to work.  It's a good thing they ate before coming because nobody got a piece of Johnny's pizza.  He also had Wendy's again for dinner, so I was probably worried for nothing.  All the eating is making an impact, and Johnny has started gaining a little of his weight back.  Although it seems like Johnny is just pounding fast food his doctors are happy that he is eating.  He is getting nutrition and vitamins though his IV, so they aren't really worried about what he is eating, they just want him taking in calories.  He seems to be happy to oblige.  

Heath, Kim, and Ellie stayed until after 9p.  This was really the first day Johnny has had visitors where he didn't seem to burn out quickly.  He had a really good time watching skate videos, and going through a new stack of Thrasher and Skatboarder magazines with Heath.  It was really good for these two to have the time together, and I can tell Johnny is starting to think about  getting out of here and skating again.  He and Heath were talking about how he would need to secure his PIC line when he gets out of the hospital.  Today was the first day he has really mentioned doing anything after getting out of here, so I think this is pretty exciting.  I'm not sure skating with a PIC line would be a good idea, regardless of how it is secured, but I'm not about to discourage the discussion.  In case any of his doctors may be reading this I'm sure this will not be an issue since his plateletts will have to come way, way up before he gets anywhere near a skateboard.  My friend Allan and his wife Jennifer also stopped by for a while this evening.  We had a pretty full house for a while, and Johnny doesn't usually like feeling crowded (even when he's not sick), but he seemed to really enjoy all the company.  

The evening rounds by Johnny's doctors were also pretty enjoyable.  Both the Hem/Onc and ID doctors came at the same time.  This was one of the few times that has happened.  The last was when they came to tell us that he had the lung infection.  This was a much different experience.  They were together to let me know that they feel Johnny has beaten the bacterial infection and will be coming off his last antibiotic either tonight or tomorrow!  This has been a long, difficult battle, and it has taken a toll, but it looks like Johnny can but this test behind him.  We are praying that he will not have to fight this foe again.  Now Johnny has set his sights squarely on the infection in his lungs.  Fungal infections like this are not as aggressive as bacteria, but are very difficult to get rid of.  Johnny's doctors admitted today of being very surprised at the amount of improvement he has made in the last week.  I think they may have to get used to Johnny surprising them.  He's a pretty special kid.

"SPOTS ON THE CT SEEM SMALLER..."

Mike and I were ecstatic when the docs came in this afternoon to tell us from what they see, "some of the spots seem smaller", but wanted to hear from ID before they make any assumptions/official word. Mike and I (My sister was there to watch the kids in case we had to spend hours with all the docs like last week) looked at both CT's side by side and we think the progress Johnny's made in a week is amazing! Some spots even look like they are almost gone! My sister asked a question as the docs were filling us in, and I said "Oh, this is my sister Kristin...", and he looked at her and gave a nod like "of course she is, she's asking questions isn't she?" I give our docs a hard time, but they are truly gifted, talented, thoughtful people and I wouldn't want anyone else! ...I wouldn't ask them to be Public Relations people or run my political campaign, but none the less, excellent at what they do!

Yesterday morning one of our ID docs stuck her head in to say a cheerful "good morning!" -- nothing serious, just to give an update. When I saw Dr G, we both smiled, then I told her "GO AWAY! I DON'T WANT TO SEE YOU!". She knew I was joking, but Sophie said I was very rude and probably hurt her feelings. I chased after her, but saw our nurse and said, "I hope she didn't take that the wrong way...". She said Dr. G's reply was "normally I would be hurt, but I completely understand this time" We LOVE our docs -- really. I would however, trade our business relationship for something more social -- like at a Bar-B-Q, or Happy Hour or something...

No real changes in meds; he's getting fewer antibiotics, still on TPN, anti fungals, and chemo. Can't say I blame the doctors for treading cautiously about Johnny's treatment and prognosis (we haven't asked anything even close to that), we have had a few ups and downs the past month. A few weeks ago I told our doctor that Joey was leaving for Hawaii in a week for one month and asked if we should keep him home instead -- you know if Johnny's condition worsened. He replied "No. Nothing is will change in a week... let him go", to which I said, "he leaves in a week and will be gone for one month..." His reply was, "oh. huh. um, well I can't say what will happen two weeks from now, that will be up to you..."

HA!  I think Johnny LOVES proving people wrong -- if you say it can't be done, he's right there showing you it CAN! -- maybe in a smart ass, I-told-you-so kind of way -- but  the kid rocks! -- okay, a slight understatement...  There are no words to describe how proud Mike and I are of Johnny and his relentless, unwavering determination.  You can see it in his eyes everyday. He still feels like crap, but is fighting his way back each day, because he knows he will win this battle!  He has received HUNDREDS of egreetings from around the world -- all of them make us smile and keep us going!

Big hugs to all

jules   

Lots and Lots of Good Vibes

Johnny got 120+ messages just today at the hospital! That brings the total so far to well over 300 (I haven't counted, but the stack is huge) messages received from friends, family, and the world wide skateboarding community. He has gotten messages from all over Europe (East and West), Australia, New Zealand, Canada, Mexico, Iceland, Singapor, Brazil, probably every state in the US, and a bunch of other countries I'm missing. The support for Johnny has just been amazing. The people out there who take the time to write him a message are completely amazing, and truely wonderful. I'm pretty sure the people at the TCH who have to type all of these messages onto the delivery cards are getting pretty tired. I don't care though; keep them coming! Johnny reads every one, and knowing that there are so many people out there thinking about him is having a tremendous impact on his ability to keep a positive attitude. TCH is a wonderful hospital, and the doctors and nurses here are some of the nicest people I have met anywhere, but this is still a hospital. Being here for three days can wear you down, and Johnny has now been here for three weeks. I know it feels a lot longer than that to him, and I can't tell you how much Julie and I appreciate having so much help in keeping him positive and focused on getting better. Thanks!

Johnny seemed to feel a little better today, and he had a little more energy than yesterday. I think getting the PIC line worried him a lot yesterday, but he is realizing that it's not too bad, and a lot better than having IV lines coming out of both hands. We know there will be good days and bad days, and we are praying that he can start stringing together more of the good ones, and that the bad ones will be fewer and farther in between, and not quite so bad. His potassium has been low since yesterday, so he has not been able to get the heavy anti-fungal meds. He was also taken off two of the antibiotics yesterday so fewer meds are probably making a difference. We are hoping that the blood test they just sent off will show higher levels of K so he can get moving on the anti-fungi meds. We need to keep those guys on the run.

Tomorrow Johnny is scheduled for a follow-up CT scan of his lungs to see if any progress has been made. If so then we will know for sure that we are dealing with a fungus, and not something else. If his lungs have not cleared at all, or gotten worse, then his doctors will do a needle biopsy to find out exactly what is going on. We are obviously hoping to see improvement.

More tomorrow.

BMA RESULTS/PIC LINE PLACED

Today we received the results for our family regarding a donor match -- and none of us are a match. Bummer I know, but they are already checking the registry for a one. The closest match was Sophie, she had 4 of the 6 markers. It sucks, but it's not a show stopper yet.

The other big news for the day was the PIC line placed. We were both a little nervous about the whole thing, so I asked to see what it looked like and had them walk us through the procedure. We checked a PIC out, held it, played with it (don't worry, it wasn't the one they were going to put in Johnny's arm) and tried to figure out where they might put it, which made us feel more comfortable about the process. The surgery took about an hour and we were back in the room by 5pm. Late tonight Johnny confessed that it wasn't as bad as he thought and he was happy to have his hands back. The PIC will make it much easier for treatment and procedures -- and it came in the nick of time -- the other IV was placed 13 days ago, started hurting and blew today. As we took the tape off to pull the IV, the tape took with it all of his 'tan' and he has these weird Michael Jackson white splotches on both hands.

The doctors came in shortly after we got back to our room. The ID docs are taking him off 2 of the bacterial infection meds, but will continue with one antibacterial and both anti fungal meds. The HemOnc docs started chemo today and TPN (IV nutrition).

Today was an okay day -- not as bad as Friday, but not as good as Saturday or Sunday. PT came early this morning and worked with him (a loop around the floor). When he came back he was exhausted and fell into bed huffing and puffing. He slept until his surgery at 2:30, and was drowsy the rest of the day. Mike brought him some food from 'the outside', which he gobbled up and seemed to give him a little more energy. He couldn't eat before his surgery, so I'm hoping that played a small role with him acting a little disengaged.

Wednesday he is scheduled for another CT of his chest to see if there has been any improvement. The docs are hoping for improvement because it will confirm it is fungus and a needle biopsy won't be necessary. The docs said if there is no change, we will cross that bridge when we come to it. So, hope and pray for fungus?

I hope that with food in his belly and the TPN, he will be a little stronger tomorrow. I will tell the PT to take it easy on him too!

hugs to all

jules

ANOTHER GOOD DAY

Today was another good day for us.  Johnny was up and around, he's slowly starting to eat real food and he started physical therapy. 

My parents came up to visit and brought Sophie back (she was at my sister's since last Wed.) to us. It  was great to see Nana and Pops -- I think Johnny enjoyed seeing them too.  

The doctors gave us a quick update about the latest on Johnny's treatment. Still no bacteria growth on any of the blood cultures!  His counts are okay, but he will probably need a transfusion tomorrow, his ANC is still at zero.  He has lost 12 lbs. in 12 days, so they will start TPN (nutrition/food through his IV's),  and potassium supplements in addition to whatever food he eats. 

One IV has been bugging him for the past 3 days, I accidentally touched it yesterday and he screamed and gave me the dirtiest look.  I asked him what happened, where did it hurt and of course he denied the whole incident.  Peripheral IV's only last a few days, so when one starts to hurt or gets blown, they try to find a stronger vein to access -- and let's just say he's currently running short on veins. 

The docs want to put in a PIC line tomorrow to get things rolling.  It's this thing that is half in, half out of your arm and has two accesses on the same line. We all knew this was around the corner, PIC lines freak us out big time, but we don't have a choice. The upshot to having a freaky PIC, is Mike will no longer have to call him "Johnny Needle Hands" -- the peripheral IVs will come out and his hands will be free to move about!  

Chemo will resume tomorrow as well as some new physical therapy.  The PT came down today to assess Johnny and get an idea of what the focus will be.  Luckily, the kid is pretty athletic and had good muscle strength to begin with, so they will focus on girth more than anything.  I think he will like PT because they have a whole floor dedicated to it and it looks like a big gym. Basketball and everything.  I'm just happy he can walk!

The Colombo's stopped by for a visit today too -- it's always nice to see anyone NOT wearing a lab coat!

This is our friend David. That's not his real hair, it was part of his Halloween coustume last year --his Borrat wig. He added the press-on mustache and viola! It's me, Mario!


This is Mike and Johnny watching a video clip that Steve Berra and Eric Koston put together for him. It's an invitation to skate the Berrics (in LA) when he gets better. Jim put an invitation on his website to skate his giant 48' wide ramp in Berkley. More incentive to get the hell outta here as fast as he can. It brightened Johnny's day, lifted his moral and spirit, and inspired him to start drawing again. There are no words to describe how happy it made us to see Johnny smile.

Check out the websites:
DLXSF.com
theberrics.com

JOY RIDE

Yea for Saturday. 

This morning Johnny sat up in bed and started eating very small amounts of food. Uncle George (no underage gambling this time), Allison, and Lilly came for a quick visit and Johnny seemed to perk up. He couldn't help smiling because Lilly is such a little doll and has these big brown eyes. All she said is 'Johnny!', and would walk right up to him, put her nose to his and ask him 'What's wrong Johnny? Is Johnny sick?' None of us could stop laughing -- not even Johnny. She started winking at him and that cracked us up again. Every time Lilly looked at Johnny with all the wires and tubes and stuff, she asked him, 'Is Johnny sick?', his reply was always the same, 'Nothing is wrong. I'm not sick, I'm just here.' I tried to distract her by showing her all the toys in the hallway for the smaller kids, but all she wanted was 'Johnny!' It was a great way to start our day, especially after yesterday.

About 10ish we found out we had a 30 minute window where Johnny wouldn't be getting anything but fluids so we asked to be completely unhooked. We were DETERMINED to get this kid outside. He wasn't happy with our plan at first, but once we got him dressed he told us there was no need for a wheelchair -- he would just walk. In the short time it took to get him a mask, he decided to catch a ride instead. It has been THIRTEEN DAYS since Johnny was admitted to ICU -- 13 days of hospital air /no outside and we knew even 5 minutes of sunshine would make him feel so much better. It did for us! However, I forgot that we live in Houston, Texas and the morning temps were climbing up into the 80's. Needless to say, he wanted back in pretty quick. He suggested we go up to 16 -- the floor with arcade games, pool tables and foose ball tables. He played a quick video game and was ready to go back to his room. Mike and I were happy with our quick 'joy ride' and will continue to take them until we are told otherwise.

Joy Ride -- Mike and I felt so naughty for taking Johnny outside. Like we were criminals escaping from jail or something...


16th floor

Friday was a nightmare for us -- Johnny's counts had dropped dramatically, he was lethargic and on the verge of being admitted to ICU again -- we were all very scared (doctor's and nurses included).  The worst part was that no one really knew why he was feeling so bad after such a good day Thursday.  They ran all sorts of tests poked and prodded him but still no real answer why his condition was declining. They ran EKG's at 3am -- put him on heart and oxygen monitors -- and watched him like a hawk well into Saturday morning.

Mike and I were up the entire time and only had a few hours sleep. Johnny slept though it all -- scaring the heck out of us when his heart rate dropped under 40 bpm and  was very difficult to wake.  Mike and I tried to rationalize everything by blaming the infections, the meds treating the infections and the constant flow of benedryl, not to mention the whole cancer thing.  The doctors would just look at us, shrug their shoulders and kindly tell us that it was probably something else brewing. It sucks to see doctors walk in the room day after day with a 'we've done all we can'  smile.

Our nurse talked to us A LOT  last night and we decided  to slow down on the constant flow of benedryl, which could be one of the many things making him sleepy.  He needs the benedryl for allergic reactions he has to the antibiotics, the new fungal meds and when he gets blood products.  He gets this stuff all day long -- there is a 30 minute break in the day where he is just getting fluids, otherwise it's anti bacterial/fungal meds for breakfast, lunch and dinner. Our nurse decided to 'work with the timing' and figured out a way that one dose could cover multiple infusions and use the full 6 hour window, versus the 4 hour we've been using. 

We think it might be working.  

His blood work came back this morning normal for him.  The tests were measuring organ function, although I think the docs are thinking more like organ failure and internal bleeding because his numbers dropped so quickly.  But he surprised EVERYONE again with his counts this morning!  HA!  Take that medical people!  Okay, he still needed blood products, but the markers they were looking for indicating something much more grim weren't there. They are also doubling his GCSF because his ANC was 10.

The ID docs are glad nothing is growing in his cultures and he can tolerate the anti fungal meds -- most kids can't.  The HemOnc docs are still very worried about him because he's nowhere near 'out of the woods' yet.  The good news is they are starting to think it might be all of the meds, chemo and cancer battling it out in his marrow that makes him feel like doo-doo. Ya think? Johnny was also stoked to hear they are holding his chemo until Monday due the fever yesterday.

Our friends the Valleys also stopped by this afternoon. By this time Johnny was back to shrugging his shoulders and pretty much wiped out from our exciting adventures (parking lots and vending machines WOO HOO) earlier in the day. I did see Johnny's face light up when he saw his old friends walk in we had a really nice time catching up on everyone's activities and accomplishments and can't wait for the next time they visit.

praying for another uneventful day!

The boys acting 'crazy' with fake mustaches Heath brought up yesterday.


Here are the HUNDREDS of egreetings you guys have been sending! Keep 'em coming, we love reading them.

Ups and Downs

Johnny was scheduled for a bone marrow aspiration, spinal tap, and the third round of chemotherapy. Of course he was also scheduled for his daily doses of antibiotics and anti-fungal meds. A pretty full day by any account.

To start the day his morning counts were pretty low. His red cell count was really low (7.6), and his ANC dropped back down to 10. Unfortunately his red cell count was too low to get his procedures without a transfusion. So he had a bag of blood for breakfast. Even after the tranfusion Johnny was really tired. They finally took him down for the aspiration and spinal tap about 12:30p, and really only took a few minutes. While he was in recovery he spiked his first temp in over two days. Probably due to the GCSF he is getting, but still concerning. He is getting meds to cover him for just about any possible infection, but when you don't have a functioning immune system you have to be on the watch for anything.

Johnny's buddy, Heath, came to visit with his mom and sister. They came with gifts, but more importantly pizza from Mario's. They arrived right after Johnny went down to the OR, so they spent some time walking around the hospital, and just killing time until he got back to the room. Johnny was feeling pretty crappy after getting poked and prodded in the OR (combined with the fever), so they didn't stay too long after he got back to the room, but he did get a little time with Heath while the girls went up to visit the 16th floor. Although Heath is 17 I think he is pretty much Johnny's best friend. He is definitely Johnny's mentor when it comes to skating, and I know Johnny really looks up to him. Even though Johnny wasn't feeling well, I'm really glad that they were able to spend a little time together. I know Johnny really appreciated it.

Because of the fever, Johnny's counts being so low, and him not feeling well the Hem/Oc team decided to hold off on his chemo today. He seems pretty weak, and I think they want to be sure there isn't anything new going on before they hit him with all of the big drugs. We also found out that he will not be getting any more PEG. His body has had all it can tolerate of that drug. The doctors are a little disappointed because that was a pretty powerful chemo drug, but Johnny is stoked that he doesn't have to get any more of those gnarly shots in his thighs. They really freaked me out too.

Overall Johnny wasn't feeling as well today as he did yesterday, but there wasn't much indication that he is really doing any better or worse than the last couple of days. We will probably have the results of the aspiration tomorrow, and hopefully Johnny's ANC will start to come up.

GOOD NEWS!

TALKING! EATING! BUILDING LEGOS!

Finally some good news to report.  The CT scans of Johnny's sinus show NO SIGNS OF FUNGUS!!!  WOO HOO! The ID docs made the rounds first, and said that they weren't radiologists but the scan looks clear and we should wait for radiology to confirm.  The course of treatment will stay the same -- 3 meds for bacterial infections (ceftaz, gent, flagyl), and 2 for the fungus (amphotercin and vorconosol).  Both are potent, broad spectrum and target the lungs. We didn't ask about needle biopsies or how long the infection/treatment will last -- we are taking it day by day --  see, it takes me awhile, but I finally get it.  

The HemOnc docs were cautiously happy and also confirmed today's scan looks good.  We discussed plans for chemo tomorrow and as long as Johnny doesn't spike a fever (he was fever free last night!), he is scheduled for a spinal and a bone marrow aspiration. He will still be on the trial, but because of the reaction (sepsis) last week, he will no longer get PEG -- the giant shots in his legs, trust me, he's happy about this decision.  There is an alternate chemo if kids have a reaction to PEG, but the other stuff is made with bacteria, and we want to stay as far away as possible from that shit. 

The next scan of Johnny's sinuses and lungs will be at least a week.  If it's done too soon sometimes the scan could look worse or show no change at all.  With at a week or more under his belt of the anti-fungal meds, we should see an improvement. But like the ID docs said "This is Johnny we are talking about..."  I really like them -- they are optimistic about Johnny and now know how tough he really is!

We got the good news earlier today, but once the docs said Johnny could start eating, all we've been doing is running to find what he wants or sounds good, or might sound good. He's lost about 12 lbs. and we will do whatever it takes to fatten this boy up!  Uncle George dropped by for a quick visit and Johnny scammed (gambled) a few bucks out of him -- that really made him happy.  Hey -- what can I say -- we're Italian...  And now he is building a Lego! And talking too!  So, it has been a great night, we are counting our blessings and enjoying each moment

Talked to Joey a few times each day so far.  He's having a ball surfing with the big guys, paddling out to 'Pops' (a longboard surf spot) with Gordon and keeping up.  Couldn't ask for anything more!

Thanks for keeping Johnny close to your hearts.  

love

jules  

RADIOLOGY IS RUNNING LATE

Wanted to let everyone know that we still haven't gone to radiology yet.  Johnny was scheduled at 12 noon, when our nurse called they told her they were backed up and will get us in sometime this afternoon. Once the CT is complete (usually takes about 10 minutes), it will take the team of doctors probably a few hours to read and discuss the results before talking to us.  They spent almost 3 hours with us last night discussing his previous CT and course of treatment, so expect the same tonight as well. 

Update more later!  

Back to Reality

Johnny has now had two pretty good days in a row. He is feeling a little better, and most of the news from the extensive team of doctors has been pretty good lately. We've definitely seen more smiles from the doctors. That's good, but Julie and I have to stay grounded and remind ourselves that Johnny is really, really sick. If anyone walked in to his room they would immediately recognize that Johnny is not well. Most of his hair is already gone, and he is very thin and pale. Not to mention he is hooked up to an IV pole. But after what he has been through the last two weeks he looks really good to us. I guess everything is relative. The one thing about this place is that if you start losing perspective there is always someone to bring you back to reality. Today that person was Dr. Su.

Joel had offered to stay with Johnny for a couple of hours this evening so that Julie and I could go eat dinner together and catch up a little. We really haven't spent 15 minutes alone together since this started several weeks ago. Right before we were to head out I passed Dr. Su in the hall, and he said he needed to talk to Julie and me in about half an hour. He said he needed to get the CT scan that Johnny had taken earlier today so that we could go over the results. Apparently there were "mulitple irregularities." I didn't like the sound of that. Earlier today the same doctor said that the CT was really only precautionary, and that because Johnny was feeling better he really didn't expect to find anything. I think he was even smiling when he said it. This evening the smile was definitely gone.

The CT scan showed two areas of concern. One is that he is still showing some pretty severe irritation in his intestine. At this point there are no tears or lessions, but until the surgical team takes a look at the CT to make a better assessment Johnny is on "colon rest" again. Basically nothing by mouth to reduce any possible further irritation of the intestines. That's the good news. The CT scan also showed lots of white, fuzzy looking, spots in his lungs. These spots could be several different things (none good), but the doctors are almost positive that this is a fungal infection. That is not good news. Apparently fungal infections are not easy to treat, and the drugs used to treat them are pretty nasty. Again, everything is relative, and they probably aren't that bad compaired to a lot of the chemo he gets, but they do come with a bunch of potential side effects. Unlike the chemo, he will have to get these drugs every day, twice a day, for at least the next two weeks. Unlike a bacterial infection a fungus infection cannot be cured by drugs alone, and Johnny's immune system will also need to rebound so that he can fight this. Johnny hasn't had much of immune system for the last few weeks. Although his ANC did come up to 10 yesterday he will need to be much stronger to fight this infection. To help him he started recieving a drug called GCSF that will help boost the production of white cells. There is some "theoretical" danger that this drug may also cause his bone marrow to produce more of the leukemia cells, but the doctors have no choice but to use it. He may also have his next round of chemo pushed back a little to give his system more time to strengthen. Neither of these stratagies make the cancer doctors happy, but much like the bacterial infection he had last week, if he doesn't beat this first the cancer won't matter much.

The plan right now is to start the new drugs tonight. He is getting his first dose now, so as I write this I am constantly watching him for signs of tremors (one of the side effects). The doctors will monitor his fever and then do another CT on his chest in about a week to see if there is any improvement. The Infectious Disease doctors would also like to do a biopsy of one of the spots so they can confirm that this is a fungus, and if so which kind, but they will wait a few days to determine if that will be neccessary. Because of everything he has already gone through he is pretty weak, and any type of surgury will be avoided if possible. Johnny does have a CT scheduled in the morning to take a look at his head. The doctors want to confirm that there is no infection in his sinuses. If so it will need to be cleaned out surgically since drugs have a difficult time getting to that area.

This is just another hurtle in Johnny's path to a bone marrow transplant. It's like he's a prize fighter who is trying to get a shot at the champ. He just has to kick a little more butt to get there.

QUICK UPDATE

Don't have time to go into a lot of detail because Johnny wants to watch movies on the computer -- BUT good news all the way around! Even though he continues to spike temps during the night, the nurses are obligated to draw blood cultures and they keep coming back NEGATIVE!  The ID doctor's came in with a glow on their faces because his numbers are improving everyday by leaps and bounds. They did a CT today to make sure that he isn't growing any 'fungus' that might be making him spike his fevers, but they said they are not expecting to find anything!

Best of all (don't know how I could top the above news) -- his counts today show NO BLASTS  -- not even listed on the counts. 

We have to watch Bill and Ted's Excellent Adventure....

BIG HUGS TO ALL!

love

J, J & M (my sister took sophie for the night!)

A Little Good News (For a Change)

Johnny hasn't had a fever all morning.  I know it seems like a small thing, but I'm stoked.  His counts also look much better.  His ANC is 10 (not good, but better than the big 0 it's been since we got here), the enzime in his pancreas continues to drop, and his liver looks good.  The ultrasound they took of his belly also looks better.  Not great, but the inflamation in his intestines and gal bladder is improving.  Still no new bacteria growth, and the best news of all is that his blast count is down to 5%!

Every day here has been a bit of a roller coaster ride, but so far today I'm stoked.