March, 2004

It's been a while since I put up an update.  Mostly, because things have been going pretty smooth.  Nate wrapped up the steroid last week, taking his last dose on the night of the 16th.  What a relief.  It's hard taking care of Nate that way.  One of those last days on steroid, Christa was taking care of Nate while I was at work.  Apparently he threw a major fit, trying to hit and kick her, just hopping mad.  She managed to distract him, get him focused on something else.  He snapped out of the funk, and a couple minutes later he asked her: "Mommy, why was I mad at you?"  What can you say.  It's not him, it's the drugs.  Really.  It took a couple days for the steroid to clear.  Even Friday, on the 3rd day off, Christa had to bring him home from preschool because he was pitching a fit.  Part of the problem was that she was there, and parents bring out the worst behavior in their kids.

Over the weekend, Nate was doing quite well.  We even did some playing hockey on the back patio.  Andrew even got in on the action, chasing us around in his walker.  It was hilarious.  One of these days they're gonna leave me in their dust.   On Tuesday, Auntie Reggie came down with her girls, and Christa and Nate and Andrew headed met them at the Rosicrucian Egyptian Museum in San Jose.  Seemed they had a pretty good time there.  But, when they got back to the house, Nate played hard with the girls, all day long.  He really hasn't had that sort of day, getting crazy with the cousins, since before his diagnosis.  I didn't get home until 6:30, so I missed most of it.  But, they were still playing then, so i got a glimpse.  Hard to believe, watching him play, that he has a deadly disease.

Over the last week or more, we've been spending some time up at LPCH visiting another family that's there.  Little Spencer is another boy with ALL, all of 3 1/2 years old.  But Spencer has T-cell, which is worse than Nate's B-cell.  And, worst yet, a couple weeks ago, he relapsed in his CNS (spinal/brain fluid, not his bone marrow).  Since then, he's getting beat up with spinal taps, getting TIT (triple intra-thecal chemo drugs) a couple times per week.  The methotrexate is causing mouth sores, such that he hasn't talked for 3 weeks now, and he can hardly eat.  The doctors have been trying to get his leukemia back into remission.  Spencer's parents, Kerri & Brian, have decided that he will get a cord-blood transplant at Duke University in North Carolina.

The good news today is that his spinal yesterday showed no leukemia cells.  That is great news.  However, Spencer's blood counts are so low that he can't travel to Duke yet.  So, they're in a holding pattern waiting for his counts to come up.  Hopefully they will, real soon.  Then, off they go, making the move.  And we are hoping for all the best for them.  Please visit Spencer's website, and you'll see pictures of a very courageous little boy, and can read about his story.  

Now, onto Nate's treatment.  For everyones education, I've added a link on to a page that gives copious details about the different chemo drugs that Nate is taking.  The information was gathered by a parent of a child with ALL.  It's a great reference.  This week was IT & IV MTX week.  It's been 3 weeks since Nate's in-patient stay when he got his first IV MTX treatment.  This week would be different, however, where we would get to do this outpatient.  So, yesterday morning, bright and early, we headed off to the hospital.  We had labs drawn in the clinic, and Lynn checked Nate over physically.  We got the bicarbonate solution IV running early so that we'd be able to start the IV methotrexate infusion at a reasonable time.  After she was done, we headed upstairs to the PACU to wait for "surgery".  For him, it's not really surgery, just the spinal tap procedure.  But, we're putting him to sleep for this now, so we had to wait for the anesthesiologist.  Once Nate was asleep it took only a few moments to do the LP.  Lynn took a sample of his CSF to check for leukemia, and then injected methotrexate into his spine.  Then, we headed off to the recovery room so they could monitor him.  He slept quite a while in recovery, far longer than last time.  I think he was just tired from the day before, playing with his cousins.  That's ok.  We weren't going anywhere.  After recovery, we headed downstairs to the day hospital.  That's where he would be getting his IV MTX.

In the day hospital we got him to go pee, so the nurses could check the pH level.  It was good, so they were able to get the MTX infusion started at 1:15pm.  That started the clock running for the 4 hour infusion.  And, it's important for the follow up days.  Nate was a bit restless this time, didn't really settle into any one thing.  Watched some TV, played some video games, played cards, but didn't do his usual watching of a movie for a couple hours.  He took some entertaining.  At 5:15 the infusion was done, so the nurse removed his MTX bag.  A little bit later, the home health care nurse showed up with our portable infusion pump, in a little backpack.  In the pack was a bag of bicarb solution and the pump programmed for 24 hours of infusion.  She got us hooked up, and we headed home.  Nate fell asleep on the way home, as expected (it was around 7pm of a full day).  Off to bed he went.  The night was not uneventful, however, as he did wake up after wetting the bed.  This was the first time he has since starting treatment.  We expected it a lot earlier, especially with some long days of hydration, but he's got a bladder of steel.  So, we changed his clothes, washed him up a bit, and changed the bed.  I try to do all of this if possible, keeping Christa in her pregnant glory, away from the chemo drugs.  Of course, I suppose I ought to be careful too.  Some of the chemo drugs cause cancer.  How ironic is that?

So, today we headed to the hospital for a blood draw at the 24 hr mark (1:15pm).  We hung around for a few hours waiting for the results.  It turns out he was at a level of 1.4 ( the units don't matter... ), where we need him to get down to 0.2.  Last time, in the hospital, he was at 0.4 at the 24hr mark.  Apparently he's not flushing it out as quickly this time.  We'll be heading back to the hospital tomorrow for another blood draw to check MTX levels.  Also, at 7am tomorrow morning we'll be giving the first of the leucovorin rescue (follinic acid) to stop the methotrexate toxicity.  Again at 1pm we'll give the leucovorin, and have the blood draw at 1:15pm.  

The beauty of doing this whole process outpatient is that even though he's confined by having to lug around the infusion pump and hydration solution bag, he can pass the time at home with his own toys, games and TV.  It's hard for us because he has to urinate frequently, and he needs help often to get around with the bag of solution.  But that's ok.  Hospitals are for sick people.

In all, it's been a pretty good weekend.  Nate has demanded a lot of attention, but that's to be expected.  The weather here in California has been just beautiful.  Yesterday we had 3 tickets to the SJ Sharks vs. LA Kings hockey game.  Christa, Nate and I headed off to the game.  It didn't work so well.  Nate's fear of heights has worsened lately.  We were in the upper deck.  I carried him up to our seats.  After about 2 minutes, he had a big problem.  He was crying, just wanting to go home.  Of course, he's under the influence of steroids.  But, his phobia is definately kicking in.  So, we have these cool towels from the game that say "Beat LA" or something.  After leaving before the puck even dropped, we headed over to Johnny Rockets, the burger joint.  He liked the vanilla milkshake, for sure.  When we got home, I got to watch the rest of the sharks game on TV.  Go Sharks.  I told Nate I was proud of him for trying.  He later said sorry for having to leave the Sharks game.  It's amazing how unimportant the event was.  

We did lots of playing this weekend.  I'm trying to make sure that Andrew doesn't get left out.  Andrew just loves his big brother.  He wants to wrestle with Nate.  He'll scoot on over close by, and grab hold of him and scream.  Nate will even get Andrew, which is a big change.  Not long ago, I don't know if Nate even knew he had a little brother.  That's an exaggeration, but he was mostly disinterested.  Babys don't do much, and so they're not much fun.  I have a feeling that soon they're gonna be trouble together.

We managed to pick up a second hand bed for Andrew this weekend.  It's a race car bed, like Nate's.  But, it's the toddler size, rather than the twin size that Nate has.  It ought to do the trick when we have to kick Andrew out of the crib for the new baby.

Nate's eating has started.  His kick this time is Subway sandwiches.  For breakfast, lunch and dinner today.  Yesterday, Christa bought him a foot long on wheat, mayo, lettuce, tomato, turkey and cheese.  Today, I ran out and bought him another one.  Cheaper than sushi, that's for sure.  It all started with a Togos sandwich on Friday, but the bread got too hard in the fridge.  The Subway sandwiches seem to keep better in the fridge, and they're a little smaller and easier for Nate to eat.  Whatever.  I'm just glad it's not Beluga caviar that he needs.  He only needed a small snack at 3am last night.  Two more days of steroids.  We'll get through it.

We found this site tonight about fundraising for Leukemia research.  Check it out.  It's a crack up.  I'm gonna have to do this for sure, and get a bunch of buddies to do it also!  http://www.stbaldricks.org/

Steroid boy is back.  The hunger isn't here yet, but the other effects are.  He can't focus very long.  His mind is racing.  He has absolutely no patience.  When he says "Daddy, can I tell you something".  If you don't respond within about 10 milliseconds, he starts screaming at you.  So, I take a deep breath, and calmly say "yes, Nate".  I know it's just the drugs.  Still doesn't make it pleasant to experience the fits.

On Tuesday evening, when we were getting Nate ready for bed, Christa noticed that the wound where the surgeon put in the Hickman catheter  seemed extra red.  Not the site where the tube exits Nate's chest, but the spot on the collar bone where a small incision was made to get into the chest.  After they put in the tube, a small suture was put in there and it seemed like it was healing fine before.  But, the skin seemed to have a red area that was growing over the prior few days.  So, Christa called the on-call hemo/onc fellow.  After describing to them, the advice was to come into the clinic in the morning and have it looked at.  If it was the site where the tube exits Nate's chest, we probably would have had to head to the emergency room.

Wednesday morning, Christa and Nate headed to the clinic.  I headed to the local internet cafe to work, and Nana was watching AJ.  After the oncology clinic nurses looked at it, they called someone from pediatric surgery to check it out.   They took a look at it and said that his body was just trying to get rid of the suture.  The treatment:  apply a warm compress 5 times a day and clean with peroxide.  How's that for a simple procedure.  Since they were already in clinic, Lynn decided we should move clinic day to Wednesdays instead of Thursdays, and they did labs and the vincristine injection.  And, we started the Dirty Dex.  That's a name I've seen parents use for the dexamethasone, the nasty steroid.

That evening, Nana was making dinner for us.  I joked to her, saying "ok, now you guys enjoy dinner.  Christa and I will be back in a while.".  Christa picked up on this and said to Nate "Nate, we're going out for a while.  Be good for Nana and Papa.".  He said "Ok, bye".  We didn't have to be told twice.  I felt bad about leaving when Nana was so nice and cooking dinner for us, but I think this might have been the first time since diagnosis that Christa and I could both be away from Nate.  We took the chance and went for it.  We headed to a very close by mexican restaurant and had dinner.  Not a long one, but it was dinner for two.

Thursday Nate started exhibiting the signs of the steroid:  restlessness, screaming fits (called 'Roid Rage).  How quick the effects kick in.  We'll see when the hunger starts.  Saturday we're going to the SJ Sharks hockey game.  It's a noon game, and we've got three tickets.  We'll see if we can get through it.

It's been a while since I've updated the website.  So, let's talk about Nate.  Since we finished Induction 2 weeks ago, Nate has been steadily improving.  He has lost a good amount of the weight that built up from the steroid.  His face is still quite round, and he pretty well doesn't have any hair.  He's got some blonde peach fuzz, that must have been underneath his normal hair.  Christa said it reminds her of when he was a baby.  His energy level is much better than it was.  He's keeping us busy, wanting to play a lot.  This week, he even wanted to do some wrestling, or as we call it "playing rough".  It's been a while since we've done that.  His legs are regaining their strength.  He picks himself up off the floor ok, but uses his hands on his knees to help push him up straight.  Climbing steps is a slow careful process.  He's even started to be a bit afraid coming down the stairs from our upstairs family room.  I think the lack of leg strength makes him feel like he might fall.

Christa took Nate to school a couple times over the last week.  He can't keep up with the physical play, but he still seemed to have a good time.  It was good for him to get out of the house, and do some stuff.  It's amazing how much better he has been feeling since we stopped the steroid.  Unfortunately, we'll be starting it up again for 7 days next week.  Oh joy.

Right now is a Saturday evening that's much too quiet.  Andrew is sleeping, and I'm sitting in bed typing this update.  Christa and Nate are in the hospital, staying at Lucy's Hyatt.  That's the humorous name for Lucille Packard Children's Hospital.  This is Nate's first ever time staying in the hospital since he was born.  If the stars and planets align just right, this would be his last.  He's there for his first dose of IV methotrexate (MTX).  Yesterday he went in for MTX into his spine, and also the IV MTX.  He's going to have this done every 3 weeks for a few months.  We chose to do something different this time with the LP.  This time, an anesthesiologist put Nate to sleep for the lumbar puncture.  Last time, he was only sedated, and it was not pleasant at all.  This time, he was put to sleep so that Pam could do the LP, and then he woke up quickly thereafter.  Real quick, actually.  Then, back in recovery, he was really good.  He was chatting away, and in great spirits.  He didn't seem to be ill from the anesthesia and recovered quite well.  The only trouble was that the procedure started a little late, and afterward we had to hang out in recovery forever, waiting for a bed to be ready in the oncology ward.

Once Nate was moved to the Onc ward, he was sharing a room with another child, a young woman of 17.  Apparently she has relapsed recently with her ALL.  She's proceeding to a bone marrow transplant.  However, I didn't actually meet her.  She was out of the room when Nate went in there, and I didn't stick around very long.  I managed catch a cold on Thursday, and I couldn't put the kids at risk.  The ward has plenty of neutropenic children (extremely low immune systems) who can't be exposed to germs.  Our original plans were for me to stay over in the hospital with Nate, and Christa would stay at home with Andrew.  But, we had to change that up.  Nate did amazingly well with the change in plans.  Sometimes he's a little too rigid in his thinking, but he did great.

Last night, after running a bicarbonate hydration into Nate, and when his urine tested for the proper pH, the nursed hooked up his IV MTX.  Christa said the nurse put on a special coat to prevent splashing on herself when hooking it up.  There's something so unnatural about hooking a bag to your child's IV, where the bag is clearly labeled as a bio-hazard.  But that's what has to happen.  It's sadly ironic, that after these years of trying to make sure he eats good foods, and keeping him clean and safe, we intentionally poison him.  Luckily he's not on high dose MTX.  The most common side effect fromt he MTX is mouth sores.  I'm not sure when those might show up, if at all.  I've heard from several parents on the ALL-KIDS email list that their children got through the methotrexate without any real side effects.  I hope we're as lucky.

Nana went down to visit and hang out this morning, and I met the three of them in the cafeteria for lunch.  I had dropped AJ off at Madie's house, and just went to the hospital cafeteria.  They came down, dragging Nate's IV cart with them.  Nana, Nate and I hung out and had lunch, while Christa went out for a walk.  She hadn't been out of the hospital for a while, and you end up feeling disconnected from the world.  The weather was beautiful and sunny, so she went out.  We finished lunch, and Nate decided he wanted to go back to his room and watch a movie, after complaining that his belly hurt.  Probably because he really hadn't eaten much last night or this morning.  But when I talked to Christa tonight, she said he didn't eat any dinner.  Oh well.  I guess half a sandwich is better than nothing for a day's eating.

Nate should be able to come home tomorrow, after blood tests show that the MTX level has dropped to a sufficently low level.  If his body hasn't eliminated it sufficiently, then they'll give him another drug that is effectively the antidote for the MTX.   It seems likely that it'll be late Sunday night when he's released.  We told them that even if it's late, we'd like to take him home.  Driving 25 minutes in the car to get home should get him back to sleep so I can just carry him to bed.  It would be much nicer for my little buddy to wake up in his own bed.

The next time we do this treatment is Mar. 24th.  We'll be putting Nate to sleep again for the LP, and then he'll hang out for the MTX IV.  But, my understanding is that we'll get to go home, probably with an infusion pump to keep IV fluids running.  I bet we'll have to come back each of the next two days, to check MTX levels, but that we won't have to stay in the hospital.

Christa is amazing.  She keeps everything going.  Tonight on the phone she told me about a 1 year old that's in the ward.  I guess the parents can't be there much for some reasons.  So, volunteers or staff hold it as much as they can.  I think hearing the baby cry was getting to Christa, so she asked if she could hold the baby.  There's no off switch to that maternal instinct.  So many kids in there are much worse off than Nate, and I'm sure we'll feel their pain as we live through this process.

Good night.