January, 2004

January 31, 2004                    Day 9, Induction

Today is the day my family is going to be in town.  We were supposed to have a combined birthday party for Andrew and Brittanie's birthdays.  However, that was the plan BC (before cancer).  So, all that went out the window.

Nate did great taking his meds this morning.  Hardly any fighting.  This is the best day yet for that.  Gives us hope that someday he can just take them without the huge struggles that cause us all so much stress.

Everyone came down, but they went to my parent's house rather than ours.  My sister's came over, not all at once.  Vicki brought Ali's girls over, and Nate actually went outsite and played with them a little.  He rode his big tricycle around the path once or so, played in the sandbox a little, and otherwise cruised around.  But, Nate ran out of steam pretty quick (image that) and came inside.  He ended up watching some TV.  Everyone ended up coming over to see him, except for Dale, Missy and Megan.  I guess they had colds earlier in the week, so we couldn't let them near him.

Nate was having stomach pains, most likely because he's constipated.  We gave him some MiraLax, like we did yesterday, but it didn't have any results.  Christa called the on-call Hemo/Onc and he said the miralax is more of a maintenance thing.  It's not strong enough if we get behind.  So, he said we should get magnesium citrate and use that.  Christa ran out to the store and bought a bottle, and we started his first dose about 7:30 pm.  We're supposed to give it every 4 hours.

Nate was in quite a bit of pain tonight.  We ended up being up late, because he was crying from stomach pain.  This laxative sure isn't kicking in the way I would like.   Nate finally fell asleep about 1:30 am, leaning against me in bed.  I tried not moving too much, because I wanted him to get some sleep.  He slept till 7:30 am, so we missed his 3:30 am dosage.  Oh well.

January 30, 2004 - Friday                    Day 8, Induction

This is the day after Nate's surgery.  He's been a little sore, but otherwise ok.  We stayed home, which was nice.  The homecare company that is handling our supplies for the Hickman line sent out a nurse today.  Her job was to do training, and to do a sterile dressing change.  The dressing change was painful.  Getting the dressing off induced a lot of crying and screaming.  Nate's too sensitive to that part.  Christa did a lot of the dressing removal, using the adhesive removers.

The nurse did the cleaning of the site, using iodine and alcohol.  I'm not that impressed with her technique.  Ok, but not great.  You can just get a sense of these things, and we were trained very specifically the prior day.  However, her flush of his line I had a real problem with.  She cleaned the cap quickly with an alcohol pad, a little brief in my opinion.  She flushed his line, and then closed the clamp before disconnecting the heparin.  When she took off the syringe, the white valve in the cap never popped out.  I told her that looked wrong, and she said don't worry about it.  It'll eventually pop out.  She said she teaches people this way so that they don't forget to close the clamp.  As soon as she was done, I released the clamp to let the cap pop out.  She was wrong, and we knew it.  The positive pressure in the line should hold the valve out, and seal out contaminants.

The nurse said something about coming back Monday, for some reason or other, but Christa and I were pretty sure at this point we didn't even want her here.


January 29, 2004 - Thursday                    Day 7, Induction

Nate had surgery today.  He couldn't eat since midnight, and no fluids after 6:30 am.  His surgery was scheduled for 9:30 am, but didn't end up happening until a little later.  He got a liquid sedative as part of his prep, which probably helped with the IV stick.  Got this one in the right hand.  Not many good spots left.

His platelets were low from the prior day labwork, so they did a platelet transfusion.  Didn't take too long once they got Nate's hand positioned just right.  His IV was positional, so if he moved his thumb, it would kind of stop up the IV.

We walked with Nate down the hall to see him off to the operating room, and he got to keep his green-blankie with him.  That is the single most important thing to him, probably more than Christa, Andrew or me.... or close to it.  They gave us a pager, and said they'd page us when surgery was done.  Rather than sit in the waiting room during his surgery, Denise from the home pharmacy took us downstairs to her office where she trained us on how to care for the new Hickman line.  It involves daily heparin flushes, bi-weekly cap changes, and once a week dressing changes.  We practiced on Chester, her model of a chest with a line protuding from it.

Once Nate was in recovery, we got to go in and see him.  We saw the doctor on the way in and he said everything went just fine.  In recovery, Nate was a little in and out, like most people.  His throat was real hoarse, so we gave him a few sips of apple juice.  His blood pressure was a little high, so they were watching that.  When he was more awake, he told us that he didn't want apple juice, he wanted BBQ chips.  And he was very serious about it.  We had a hard time not laughing about it.

After he was "recovered", we wheeled him down in a wheel chair to Clinic D.  There, he received his vincristine injection into his cool new central line.  It didn't require a needle stick.  What a wonderful thing.  Nate kind of felt sick, however, so they gave him a Zofran, to help.  And, we took a bucket home with us.  On the drive home, I sat in the back next to him, and Christa took us home, nice and slow.

Nate was feeling some pain later, so we gave him some Tylenol 3, which helps.  It also helps him sleep.

January 28, 2004 - Wednesday                    Day 6, Induction

Today is Andrew's first birthday.  We're doing our best not to let him get lost in the madness.  Christa asked some of the preschool parents if someone could bake a cake for Andrew.  We had a 1 pm clinic visit.  They tried to get an IV into Nate, but had real trouble.  His left hand was all bruised up from prior sticks, his right had a bruise on the back from a stick, the crook of his right elbow had a bruise from a stick, so they tried his left arm.  I still had to hold him still, and tried to get him to use his breathing technique.  It's not as effective as we'd like, but it helps.  But, the IV stick was no use.  Poking around in his arm, and Pat couldn't seem to get it.  Nate's veins are not great for the needles.  Lynn walked in after the unsuccessful stick and said to just forget the IV and we'd just go to the lab for a blood draw.  That's easier than an IV stick.  She also new that we wanted to get home to have cake & ice cream for Andrew.

We had a surgical consult at 3pm.  We met with a PNP in clinic C, and went over his surgery information.  He was going to be receiving a Hickman double ended central line.  It would go into a major artery come out just above his collarbone, snake its way under the skin down to his chest, not very far from his nipple, where it would exit the skin.  It would have two lines there, and would be used in the future instead of having to put in IVs.  Since Nate's big fear at this point is the "pricks" as he calls them, this should make it much easier to go to the hospital.

Next we went to the lab, where he would get a prick.  So, the usual routine of Nate sitting in daddy's lap, where dad could hold him tight for the technician.  Once the needle is in, he settles down a lot.  The anticipation just tears him up.

We got home in time to have some dinner and then cake and ice cream with Andrew and the grandparent's.  Nate ended up sleeping in his bed during our small celebration.

Another day down, but tomorrow is surgery.

January 27, 2004 - Tuesday                    Day 5, Induction

Tylenol 3 is our friend.

Nate woke up at 5:30 am this morning, just screaming.  His head hurt.  His jaw, the sides of his head.  His ears.  Whatever.  But he was just crazy.  We gave him the Tylenol with codeine, and it took almost an hour for it to kick in.  He just screamed, for such a long while.  We talked to the on call Hemo/Onc and she said that if he won't settle down, then we'll have to take him into the emergency room.  The clinic doesn't open until 9 am, so emergency is our other option.

I called Nana at 6 am, asking for help.  The baby had awakened, but we had our hands full with Nate.  We have relied on the grandparent's so much, I can't possibly imagine how we could get through this without them.  Nana came over quickly, which was a big help.  The on-call doctor had said that we could re-dose Nate at 3 hours if necessary, and that's what we ended up doing.  We pretty well wiped him out with the codeine by doing that.

It was kind of a long day, and Nate ended up being so zoned out.  He hardly wanted to eat, which makes it tougher to give him his meds.

January 26, 2004 - Monday                    Day 4, Induction

Back to the hospital today.  We started off with an IV stick, which always bites.  Then blood draw for labs.  We moved to the day hospital for IV fluids, and hung out.  The nurses put on the numbing cream on top of both thighs, in preparation for our peg-asparignase shots today.  He's smart, and he knows what those patches mean.  When the time came, I climbed onto the bed, sitting behind him, with my legs pinning im in on either side of his.  The nurses took off the patches, sprayed his legs with cold numbing spray, and then did the injection.  One in each thigh simultaneously.  Obviously they know how to do this with little kids.  Nate had an unholy fit leading up the shots, but after he cracked us up.  He said "Oh.  That didn't hurt."  Yet again, the anticipation was worse than the event.

The nurses had to observe him for an hour to make sure he didn't have any reaction from the asparignase.  Then we got to go home, around 6pm.

January 25, 2004 - Sunday                    Day 3, Induction

Today was a day off.  No hospital visit.

Today was a great day.  Nate and I did a lot of playing.  He seems a little hyped up, maybe because his red blood count is up, and probably because of side effect of the steroid.  He wanted to chop wood, so chop wood we did.  Got out the sledge and wedges, and split some old wood outside.  He stripped bark of the sections, and checked out all the ants living in there.  Then, he moved on to wanting to dig for treasure.  But, we had to rake the leaves up first, before digging.  After raking, out came the shovels, and we dug for treasure.   He was crazy, but fun.

January 24, 2004 - Saturday                    Day 2, Induction

We spent a good chunk of time in the day hospital.  Nate still had the IV that was put in on Thursday, so he was able to avoid a prick today.  He was hooked up and hydrated for several hours.

His trouble this time was that he didn't want to take his medication.  He was refusing.  So, Paige, one of the nice nurses in the day hospital, got to show us how to force his mouth open by squeezing his cheeks between his teeth.  He took his meds there, but not by choice.

They took his IV out before we left, since it had been in for a couple of days already.  This means next time, he'll be getting a stick.  That's no fun to look forward to.

This evening Christa and I had to corner Nate, and force his mouth open to take his meds.  Unfortunately, I've had to see the bruises from this on his cheeks for more than a week following.  Problem with low platelets is the easy bruising.

January 23, 2004 - Friday                        Day 1, Induction

Nate started his chemotherapy today.  This is day 1 of "induction", the first stage of chemotherapy.  This stage will last for 29 days.  The chemo today consists of a couple of things.  A spinal tap (officially a lumbar puncture, or LP for short) to sample his spinal fluid for testing, and an injection of Ara-C into his spinal cord.  The spinal tap was similar to the bone marrow aspiration procedure, in that we started by sedating him.  He fought it off pretty well, and was very concerned about getting a prick in his back.  It came down to me and a nurse holding him still, curled up in a ball on his side, while the PNP performed the spinal tap.  They say they're pretty good at "target practice" with a moving target, but I'd rather not test their skill.  

They took the spinal fluid sample, which drips out clear, and then injected the chemo drug into his spine.  After,  he just rested watching a movie.  After a little while we were moved tot he day hospital for his transfusion.  This was going to take quite a while (4 hours for the transfusion), so it's best over in day hospital where they have more room and more TV's.  

We understood that after the transfusion we'd be going home, and so that's what we had told Nate.  Unfortunately, that wasn't the case.  After the transfusion, they wanted to hydrate him for 3 hours with a bicarbonate solution, to help flush out his kidneys.  The concern is that during the first 5 days of chemo, they'll be killing so many leukemia cells that preventing an acid buildup in his kidneys is very important.

Nate was also complaining about his stomach hurting.  This was new since his LP, and the nurses were concerned that somehow it might be related to that.  I suspect he might have pulled a muscle in his abdomen when he struggled to move during the LP.  I had held his shoulders, head and legs to keep him in the ball shape, and I can tell you he's pretty strong.  Good thing he had the sedative, or he'd have been real trouble.  We ended up giving him a dose of Tylenol with codeine.

We were sent home with a gaggle of medications for Nate.  Dexamethasone, allopurinol, bicarbonate solution, septra, zofran, and probably a couple of other things I can't think of off-hand.  This ought to be fun.

Nate wasn't happy about having to stay, and he kept asking to go home.  This was another long day.  We'd been at the hospital all day.  When we left, he fell asleep in the car on the way home again.  Nate was loopy up in the car for a while, though.  I told him he was "loaded", and he said "bang bang bang... loaded like a bullet".  Christa and I couldn't help but crack up.  He then freaked out because he said our van was driving down the road on its side.  Then he fell asleep.  Again, we had a long quiet drive home.

When we got home, Nana & Papa, Grandma Madie & Grandpa Bob, and Auntie Vicki and Alex were there.  And, of course, Andrew was there. Vicki had driven down from Davis to see her little buddy.  She brought balloons for Nate, and he played with her for a while.  He was absolutely silly, probably from the codeine.  And, a little mean.

January 22, 2004 - Thursday

Nana and Papa came over to watch AJ in the morning.  We had to get up to the hospital at a reasonably early time.  We drove the truck, which was kind of a mistake.  The parking garage at the children's hospital really doesn't accomodate big vehicles very well.

We went to clinic D, which is the oncology and hematology clinic.  We checked in, and they took Nate to get vitals (temperature, blood pressure, height, weight).  Then they put some lidocaine solution on the backs of both hands, and on his lower back, where the bone marrow sample would be taken from.  Then they sent us into room 2, where we waited a bit.  Some nurses came in, and it seemed they wanted to get started  placing an IV.  We hadn't even seen the doctor yet.  The nurses had orders to take a bone marrow sample from Nate, so that's why they wanted to prepare him.  When they figured out that we hadn't even talked to the doctor yet, they slowed down, and found the doctor.  

Dr. Marina came in and met us.  She's very competent, and tries to keep a bit of levity in the conversation.  Pretty much the first thing she said was that after looking over Nate's bloodwork from the prior day, she's going with a working assumption that he has leukemia.  This was quite a blow for Christa and I.  Nobody so far had said they thought he might have cancer.  We feared that, and had done some reading on it the night before, but here it was right out in front of us now.  As Christa says, it's a good thing she told us with Nate in the room, because it sort of inspires you to stand strong.

The doctor explained that they would use a procedure called bone marrow aspiration to take a sample of his marrow, so that it could be analyzed.  They would put an IV in him, sedate him to make him sleepy, give a local anesthetic in the tissue of his lower back, upper bottom, where the needle would go through to the back of the pelvic bone.  Apparently that's one of the easiest places to take a sample.

She explained that within a couple hours after the sample, she would be able to diagnose if it was leukemia.  There are different types of leukemia, so if it was, then more time would be needed to identify specifically which type it is.

Following the discussion, the nurses came to install the first IV of Nate's life.  It was not a pleasant experience.  I had to hold him in my lap, and help hold his arms.  One nurse helped hold his hand, while the other nurse tried the vein in the back of his hand.  That poke was unsucessful.  They then tried the vein on the back of the same hand, closer to the thumb.  That was a successful stick.  Nate was able to finally calm down after they had taped up the IV.  

We went to the procedure room, just down the hall.  It's a small room, with two beds in it.  They have a TV with a VCR in there, and a cabinet with a bunch of kids videos.  This is a great thing.  We put on a video.  The PNP (Pediatric Nurse Practitioner) that is caring for Nate came and administered a sedative into Nate's IV.  Then we waited.  The idea was for him to get sleepy.  After a bit, he did become sleepy.  However, he never fell asleep.  Anytime anyone moved around him, he kept asking if he was gonna get a prick now.  When the time came, we rolled him over on the table.  Nate kept trying to turn and look behind him, asking "Am I gonna get a prick now?"  The nurses had all assured him, multiple times, that they would tell him when they were going to do something.  They would never surprise him.  So, after they peeled the tegaderm patch off his backside that had the lidocaine cream to numb the skin, and cleaned the site, they told him they were going to start.  I held his shoulders and head down, and a nurse held his feet.  They injected a local anesthetic to help numb the tissue.  Then, they used the large needle (looks like a stainless steel tube) and inserted that into the back of the pelvic bone.  The doctor had explained that they can numb the tissue, but they can't numb the bone.  It didn't look pleasant, and from his crying I'm sure it didn't feel good.  They took a bunch of vials of marrow, which pretty much just looks like blood.  When they were done they pulled out the big needle, and put a bandage on the site.  

Nate rested afterwards, half sleeping, half watching his movie.  The rest of the day is sort of a blur in my memory now.  We met sometime in the afternoon with Dr. Marina, where she informed us that Nate has ALL, or acute lymphoblastic leukemia.  She told us that it would be a couple of more hours before they determined whether it was of the B-cell variety or the T-cell type.  We were definately hoping for the b-cell type, as it's easier to treat.  Apparently the T-cell type likes to move to the spinal fluid, or something like that.  And, it would require radiation treatments to the cranium, or something.  It sure didn't sound good.

Later, we were moved to the day hospital, which is next door to the clinic.  Nate was on hydration, and they wanted to transfuse him.  It was getting late by this point.  The nurse started the transfusion.  About 15 minutes into his transfusion, his temperature had raised by 1 degree C, so they stopped the transfusion.  Two main reasons could be either infection, or a transfusion reaction.  To rule out infection, they needed to do a blood culture from a clean site... that meant another needle stick for Nate.  Poor guy, it had been such a long day, and I had to hold him for yet another "prick", as he calls them.  No infection was determined, so it was ruled a transfusion reaction.  The solution... pre-medicate him next time with Tylenol.  So the transfusion was called off, and we would need to do one the next day.

The doctor found us at some point to give us the good news that the leukemia was of the B-cell variety.  We were dealt a bad hand, but at least there's a good card or two in there.  She explained that sometime during the next several weeks, Nate would be classified as high risk, normal risk or low risk, according to a number of criteria.  This would help determine what his treatment will be over the subsequent months.

We were wiped by the end of this day.  The stress of everything was just overwhelming.  The drive home was so long.  What can you say to each other as your 4 year old boy is sleeping in his car-seat, and you've just learned today that he has cancer?  As I lay Nate into his bed, he rubbed his backside and asked me why he was sore back there.  Apparently the sedative really does make him forget.  For that I'm very thankful.  Late this evening, after everyone was gone and Nate and Andrew were sleeping, we sent an email message out to some friends and family.  If you didn't get the email, please forgive us.  It was the end of the single longest day of our lives.  Here is that message.

January 21, 2004 - Wednesday

We took Nate to his pediatrician's office for a CBC blood workup.  His pediatrician ordered a CBC to see what was going on with his blood cell counts, and a lead test to check for environmental factors possibly causing his anemia.  This required drawing a couple vials of blood from his arm, and I had to physically restrain him so they could do the blood draw.

After the blood was drawn, we left the office.  Christa went home with the kids, and I headed in to the office.  Christa called me a little before noon, and said that the pediatrician called.  Nate's labs showed his hemoglobin had dropped further, and his iron was on the high end of normal.   His anemia was obviously not caused by an iron deficiency.  Our pediatrician had called the hemotology doctors at Lucille Packard Children's Hospital and consulted with them.  They scheduled an appointment for us for Thursday, the next morning.  And, it was likely that they would do a bone marrow aspiration.  This involved taking a sample of bone marrow for analysis.  Because of this, we had to follow pre-operative instructions with Nate.  No food after midnight, only clear liquids.

When Christa told this to me, I was stunned.  I walked into an empty office at work and talked with her.  She was very upset, and I was getting there.  My mind was racing, as to what could be the deal.  Our doctor had not mentioned the possibility of leukemia, but to us it was obvious that his anemia was out of the normal.  I was very concerned.  After talking to Christa, I left the building.  I went for a walk, very upset.  I stopped and sat on a curb, and called my parents.  I told them I needed their help.  I explained that we needed to take Nate to the Children's Hospital at Stanford the following morning, and that we would need someone to watch the baby.  My dad said absolutely, they would.  He also tried to reassure me, calm me down a little.  

Just a little later I walked back to the office.  My boss, Gene, called me on my cell, wondering if everything was ok.  When Christa had called, I was in a meeting.  I stepped out to take her call, and I never returned.  I told him that no, I wasn't really ok.  That I had to take care of some family stuff.  A few minutes later, I walked into the office, and Gene saw me.  He said "what are you still doing here?"  I replied that I needed to grab my laptop, and bag.  As I walked through the office, one of my co-workers was trying to ask me a question.  Gene ran interference, so I could just grab my stuff and head home.

That afternoon and evening was a long wait.  Christa and I alternated lookup up information on the web regarding anemia.  There seem to be lots of different diseases that can cause it, one of them being leukemia.  We were really hoping that Nate's anemia was caused by nothing too serious.