So Much To Be Thankful For

I had meant to post on Thanksgiving, but I also knew we were just a couple days away from another follow-up appointment with CT scans.  6 months later, all clear.  J took his last dose of antibiotics that he was taking as a precaution against certain infections until his body had recovered enough from the chemotherapy.  He no longer takes any regular medications.  He surprised us with the last doses by swallowing his pills with a drink of water.  He has come so far from our crazy fights on how to get him to swallow pills.

Happy Birthday!!

J had a marathon of tests a couple weeks ago.  He had his CT scan, which showed no new disease.  Good news!  He had an echocardiogram to make sure the heart didn't get injured too much from the chemotherapy.  The heart is still working well.  He had a host of labs that reportedly are fine.  I couldn't find the kidney stones anymore on the CT scan.  So nice to repeatedly have good news.

A New Life

Mom and J went to meet his new oncologist a week or two ago.  It is very interesting how God works in our lives.  Prior to the diagnosis we were contemplating switching jobs and moving.  I had already interviewed for the position and was given a job offer.  I signed the contract and Mom placed the contract in the mail the morning we found his mass.  I had already determined to start with the new job in mid-August.  Then we find the mass.  That's the kind of discovery that can destroy plans (and it did disrupt several plans).  But here is the beauty of how it worked, we were able to have J treated with his long inpatient treatments in a hospital that was two minutes from our house.  I worked at primarily at one hospital, the same where he was treated.  It wasn't an easy four months, but it ended up being only four months.  We were able to follow through with our fun summer plans, and add some new activities.  I was able to start work in August as planned.  It's hard to imagine coincidence working so beautifully.  We count it as blessings from God.

Six months

It was six months ago today that we discovered the lymphoma.  By 11 pm we had already found the mass on ultrasound, been admitted through the emergency department, obtained an MRI, and were admitted to the Children's Hospital, hoping to have surgery the next morning and discover exactly what we were dealing with.  I remember doubting that it could be anything benign and hoping it would just be lymphoma because the alternatives would have been worse.

The Final Surgery

The medication port came out today.  The removal was pretty straight forward.  J went in with confidence.  He is used to the PACU.  He knows what to expect.  He has learned (and doctors are learning as well) that a bit of distraction helps pass the time and ease anxieties.  We had placed the EMLA cream over the top of his port, just in case they would choose to access it, to begin giving him anesthesia to put him to sleep.  He preferred that plan over the idea of getting a peripheral IV.  However, the anesthesiologist suggested using gas at first and then placing their IV.  J can be pretty confident when he knows the rules of the game, but when you change how things are done, he gets a little anxious.  His cure for anxiety, his Kindle.  A few games.  A good book.  Oh, and Studio C on Mom's phone.  These are adequate distractions that helped him get through the pre-surgery waiting.

PET Scan Results and a New Plan

The biggest story regarding the PET scan was with the squirrel that delayed the scan by one day.  The poor squirrel bit off more than it could choose with the high voltage lines.  I have a picture, but I'll spare you.

Anticipation

Tomorrow is the first of many follow-up scans.  J will get a PET scan early in the morning, and then we will go to clinic to see what the results are and what the plan is from there (hopefully surgery referral to get the medication port removed).  He has been doing pretty well.  His only problems right now are endurance problems, and perhaps cold sensitivity in his teeth (although that's pretty normal, but it's new for him).  He finished the school year and is his old self for the most part.

A Week of Fun

It's so odd to have a week without any doctors' visits (orthodontist, yes, twice, but no medical doctors).  No labs.  Wish we could say no medicines, but that's not quite true.  Just normal end-of-the-school year activities.

A Simple Surgery

Today was the first day we experienced same day surgery.  Highly recommend it over the inpatient, prolonged-stay version of surgery.  Expectations are important in allowing it to be a satisfactory experience.

Brief Update and One of Many Thank-Yous

Tomorrow is finally surgery.  Wahoo!  This surgery is for work on the kidney stones that have been sitting quietly waiting for this moment.  Right now J has a stent in his ureter connecting the kidney to the bladder.  When people have pain from kidney stones, it is usually when the stones leave the safe reservoir of the kidney collecting system and travel the narrow tube to the bladder, the ureter.  A stent opens the passageway so that the ureter can't get blocked.  Tomorrow they will take out the stent, put a small scope in the ureter and try and pull out any stones that are still lurking.  They may leave a smaller stent that has an easy removal system.  This should be pretty straight forward, but J may try to change that.

More Labs, Less Pokes

We returned for labs today.  J was a bit glum for the labs, some sort of clothing issue and little brothers refusing to be personal slaves.  Kind of foggy on the details.  Other than his mood, things couldn't have gone better.  When it was time to meet J at the door of the hospital, I grabbed a number for his labs.  Patient number 82, and they had just called 78.  Shortest waiting time ever!  J slowly warmed up to the phlebotomist, and started telling him the next thing he needed to do.  If he wasn't impressed, at least the phlebotomist realized J has been through this at least 1,000 times and counting.  After the sample was obtained, the bleeding stopped right away.  Good, the platelets were going to be more normalish than Monday. He was still a little glum and didn't want to walk all the way back to the car, but he still managed a good distance.  Counting the whole experience as a victory!

Getting Stronger

J has been doing great.  Tonight he made a trip with me to the hospital to pick up something left at the  hospital.  It's not a short walk from the parking lot, and I don't take a very slow pace.  He did a good job keeping up.  I don't think he has walked so far and in such good spirits since before this began.  He is getting tired of staying home all day.  He is ready to get back to school.

Inpatient vs. Outpatient

When we began the last cycle of chemotherapy last week we talked with the attending oncologist about when we would go home.  We opted to go home Sunday night after the last dose of chemotherapy finished.   They started treatment about 7:45 pm, which meant ideally he would be done at 7:45 pm.  Great, not too late in the evening. We confirmed that we would take him home Sunday night as we headed into the weekend.

The Light at the End of the Tunnel and a Little Sympathy

No, not that light at the end of the tunnel!!!

Chemotherapy Making Its Gains

Chemotherapy seems to be catching up to J today.  Appetite is going down.  He's still eating, but it takes much longer to decide on something that sounds good.  A throw-up bowl has become his bedside companion.  He has requested more medication for nausea.  They give Zofran as a scheduled medicine, meaning they give a regular dose at certain times of the day.  If he feels nausea on top of that he can have Ativan or Benadryl as needed.  He has taken a liking to Ativan.

Top 10 Things to Pass the Time While In the Hospital

This is a list of the top 10 things to help J pass time in the hospital.  (This list is his, editorial comments are mine.)

Cinco de Mayo

Today's excitement included yet another trip to pediatric sedation to get a very good short nap while long needles are jabbed into the back.  I think this is the 7th time he has had intrathecal chemotherapy (chemotherapy injected through a spinal tap).  He's an old pro.  He listened to Rockelbel's Canon by Piano Guys over and over on my phone while he was waiting to be put to sleep.  If you have never heard this, check it out here.  J was actively involved in the idle conversation in the procedure room as we waited for all the players to arrive.  So nice to see him so happy.  As soon as they put him to sleep, we are dismissed from the room, and we decided to go get lunch and meet him in his hospital room after the very short procedure.  When he arrived he wanted two things.  Food and the pulse oximeter removed from his finger.  He received both.  He had pizza on a piece of naan.  One piece wasn't enough.  He ate two.

May the Fourth Be With You

All good things seem to come to an end, like vacations from treatment.  J has returned to the hospital.  Would have been better if he it was tomorrow, The Return of the Fifth.

The Last Night

It has been a nice break in between treatment.  J was able to attend school on Friday.  This is the first time he has been to school since February 11.  Grandpa took him to school.  They were having a Harry Potter Day.  This would be the first year at Hogwarts given that he is 11.  Crazy, he could be learning spells and flying broomsticks.  Makes going through chemotherapy seem kind of dull and boring.  His class was happy to see him.  Apparently when Grandpa dropped him off, someone in the class yelled 'Jonathan is here" and in a moment the class was surrounding him.  He then told Grandpa he could go.  Mom was worried the whole time that he would be tired or feeling unwell, and I had to hold her back from checking in with the teacher to make sure he was OK.  He lasted the whole day.  One of the teachers thought he had shaved his head just for the event.  He was dressed up as Voldemort.  Maybe someone has pictures that will make it to us, and I can post.

He took his medications without complaint for the last several days.  He had a friend visit today.  He ate bone-in pork chops and enjoyed eating the meat straight from the bone.  He took a walk with the family around our neighborhood tonight and I noticed just how scrawny his arms have become.  He's in bed now, hopefully asleep.  This is last night to sleep without somebody coming in to his room and waking him.  This is his last night to sleep without getting so many IV fluids that he makes a trip to the bathroom every hour.

HIPAA and Losing My Job (Almost)

The Health Insurance Portability and Accountability Act is an interesting piece of legislation that came close to costing me my job today.  OK, maybe a bit dramatic, but maybe not.  Being a physician in the same hospital as all of J's doctors does create potential hazards.  My hospital takes an extreme position in interpreting this and all other laws.  They don't want to even come close to the line.  As such, any visit into J's medical chart can be grounds for discipline including up to termination of employment.  I always need to be on my toes.

PET Results

The PET scan was this morning.  While we were home, J seemed ready to cooperate.  One needle poke and he would be finished, then he would just need to lie on a table for 20 minutes.  Good plan until he had to drink nasty oral contrast material.  He decided he liked lemon flavor much better than raspberry flavor he was given.  He decided he needed to urgently go to the bathroom right before they were ready to inject him.  He decided (remembered, OK never really forgot) that he hates any sort of shot.  He told the family at dinner that he learned that even small needles hurt.  He finally was injected.  An hour later he was ready to be scanned, well kind of.  It took some convincing for him to allow us to position him on the table correctly.  The techs were patient and kind.

Weekend Update

Been a few days.  Here's the summary.  J made his own lunch the other day.  He likes to drink from a straw, and he needed a new one, so he climbed up on the countertop so he could reach the straws on the top shelf of our cupboards.  He spent a good amount of time doing schoolwork with his teacher, who has been his tutor.  He takes his medicine with only a little complaint.  He sleeps through the night without waking to go to the bathroom.  He wears clothes and doesn't complain of any surgical incision.  He beat Mom at Monopoly today while most the rest of us went to church.  The only symptoms he is having are pain when he urinates related to either the ureteral stent or the leftover stones.  Not nearly as bad as what sent him to the hospital earlier this month, but still there.

Stages of Grief

As I have been at this conference, no longer involved so intensely in the daily care of J, like so many who have been reading this, at the mercy of someone else to tell me what is happening, I've been surprised to see what my feelings have been about the lymphoma.  The dominant feeling is disbelief. It's hard to believe all that has happened over the last 10 weeks.  Did he really go through all those surgeries?  Has he really taken more medications than I have in my entire life?  This is true even if we exclude the chemotherapy specific medications.  All the other medications he has needed are far more than I have ever taken.  Is his hair really gone?  Is he really at risk of life-threatening infections right this moment?  Has he really missed school every day since the mass was found and will miss the rest of the school year?  Is this a dream I will eventually wake up from?

Round 3 Finished

Yesterday ended round 3 of chemotherapy and finally a return home.   The chemotherapy ran continuously until Sunday evening.  The choice was to either send him home Sunday night so he could be back in early Monday morning for his spinal tap and the last dose of chemotherapy, or to keep him Sunday night so he could continue to get IV fluids, particularly since he has had the problem with kidney stones, and then he's already at the hospital for the spinal tap.  He stayed in the hospital.  I abandoned the family on Saturday to go to a conference out of the country, so Mom is taking care of things.  My parents are in town to help, so she's not totally abandoned.

Patients and Numbers

When I was an intern, my upper level resident shared a valuable lesson she learned in a tragic way.  She had a patient who was very sick and needed serious medications to keep the blood pressure in an acceptable range.  All night long she would increase the medication, get good results, and then the blood pressure would drop some more.  She repeated the cycle many times throughout the night, feeling quite pleased she had kept the patient alive through the night.  When the attending came in and assessed the patient, he informed my upper level resident that although she had successfully maintained the blood pressure, she had killed the bowel in the process and the patient would die soon.  The medication works by clamping down the blood vessels in the arms, legs, and bowel, leaving more blood to stay in the heart and get to the brain.  Not bad when it's only the arms and legs, but once you stop sending blood to the bowel, it dies, and that's not compatible with life.  My upper level resident felt horrible.  The attending went on to say it was OK, the patient was in a hopeless situation either way, but that there's a valuable lesson to be learned:  Don't get so focused on numbers that you forget to look at the patient.  (I hope that my non-medical friends who read this don't find this story too disturbing, but I remind you that death is very natural, and it happens to everyone.  There are a lot of very important lessons to learn in medicine and in life related to someone's death.  The doctors involved are not uncaring, but when you work in critical care, you know a lot of patients are going to die, and it's a valuable time to teach.)

Self Advocacy and Flexibility

Last night at 1:00 the nurse is bringing in a new medicine for J.  It was a medication from home to adjust urine pH, but they had temporarily stopped because they would be adjusting the urine pH other ways.  The dose was twice what he had been taking at home (I tested urine pH so many times to get us to the right dose) and it was being started in the MIDDLE OF THE NIGHT.  You may think it's not such a big deal to start a medicine in the middle of the night, but then that's the schedule we get stuck with.  1 am and 1 pm.  I did something I do very little of, I refused the medication.  I said it could be started in the morning and that we could re-address the dose in the morning.  (I learned during the admission for kidney stones that bad schedules get perpetuated.  J missed his regular time for the Neupogen shot (the one to help make more white blood cells), and they didn't give it to him until about 11:30 pm.  Next night, rather than giving it at 8 pm like we had been at home, they woke him at 11:30 pm to get the dose).  The issue continued the next morning when the daytime nurse told me that the pill cannot be divided in two (as we had been doing for several days) and that he had to have the entire pill.   Second time in a day that I was refusing medication until we could talk to the ordering doctor to clarify the dose.

If Things Can Go Wrong...

The night was supposed to be great.  A friend had set up glow-in-the-dark Ultimate Frisbee for a bunch of guys.  It was going to be a great way to let off some steam.  Relax outside of the hospital.  Get some much needed exercise...

Serious Business

This continuous infusion of chemotherapy is serious stuff.  More determined than a stork delivering a baby (highly accurate medical information on this blog).  More consistent than the mail service.  No breaks for a shower (although J thinks that a bed bath is key to happiness).  His IV pole is his new constant companion and must be with him wherever he goes.  This is what I found when I came into the room tonight:

This is his IV pump.  What is the meaning of this?

Sprints and Marathons

I have never run a full marathon, but last fall I ran a half-marathon.  Many of our experiences over the last months remind me a bit of running and can be divided into the sprints and the marathons.  This is true from both the runner's point-of-view as well as the spectators'.  Sprints are full of speed and have intense energy levels.  They are fun to watch and only require a short moment of attention.  Marathons (easier to say than half-marathons, although I'm speaking a little beyond experience) are long and steady and require perseverance.  The observer has to pick strategic spots to cheer on the runners, but only catches short segments of the excitement, usually the beginning and the end and a few spots in the middle.

Round 3

Today we started the third round of chemotherapy.  I think today it happened the way it was supposed to.  Here's a rough outline of the first day of this round of chemo.

A Moment to Rest

The last several days have been a great blessing.  J has been feeling pretty well.  He still gets some pains related to the kidney stones or the stent, and he still isn't what he was before this all began, but in the last two months he has not been better than these last few days.  He takes medicine without a fight.  He reads books (including finishing two books in three days from a series his class from school gave to him).  He plays games with his siblings.  He laughs.  He eats.  He eats more.  He went to his sisters' violin and cello recital.  He is even planning on attending part of church tomorrow.  It's sad that we go back in for the next round of chemotherapy on Monday and beat him down again.  But this moment is a cherished treasure for us, and a reminder that eventually life can become more normal.  It will never be the same as it was because every experience will change us for better or for worse.  And who says that we want to be the same as we were before?

The Stent

Surgery was quite successful, and the best surgery that we have had so far (no incisions to heal).  They put a scope in the bladder so they could have a look around and looked in the ureter on the side of pain.  They found quite a few little stones.  Not a surprise because that's what we expected.

Happy Birthday to Mom!

Today was Mom's birthday.  J wanted to be part of the excitement.  He joined us for an omelet breakfast, although he could only eat a small part of it.  He gave a surprise gift with his labs showing that his white blood cells were back to normal range and that his platelets were improving.  Hemoglobin (a measure of red blood cells) on the other hand is still going down, almost low enough to receive a blood transfusion.  He joined the family for a trip to a cave in the region.  I don't know what happened from that point, but he seemed intent on no longer joining the family in birthday activities.

Happy Easter

J's energy is improving.  His mouth is getting a little better and he has uttered some words.  His color is improving.  Looks like we are coming out of the pit.  Nice to have a season of peace.  Nice to have a moment for some reflection.

Epistaxis

It has been so nice to be free from the hospital for over a week now.  Last night Mom and I were enjoying a little quiet time watching a movie for date night.  J came down around 10:30 with a whimper and tissue plastered to his nose.  He had a nosebleed, or epistaxis (your guess is as good as mine as to the correct pronunciation).

One Miserable Little Boy

I must say that being home in the weeks between chemotherapy is better than being in the hospital, but poor J may disagree.  This is a quick rundown of his woes.

What Parents Never Like To Hear

Last night we heard one of those phrases that totally ruins a night:  "I just threw up in my bed."  It's bad enough when they wake you to tell you they threw up at all, but to mention that it was in bed... I just feel like lying there and hoping it's a bad dream or that if I feign sleep the child will go away and clean the mess without me, or maybe Mom will take pity on me and take one for the team (OK, we always take care of these as a team).  This was one of those where the smell was totally overpowering.  Uggh.  Enough detail.

Half Way There

Friday we officially finished the second round of chemotherapy.  J went back into clinic to have another dose given through a spinal tap.  We like to think we are learning.   J was not allowed to eat anything this time (last time he ate breakfast, whoops).  He let us know that he was quite hungry all morning.  While he was asleep for the treatment they took out the remaining staples in his belly incision.

Arrow of Light

Thursday night we made it to the Blue and Gold Banquet with one of the local Cub Scout Packs.  Our church usually charters a Boy Scout Troop and a Cub Scout Pack, but when we returned from fellowship, there was not an active Cub Scout Pack with our church, so we found this one that a few of the boys from our church were already attending.  It was a great experience.  Good boys in the pack and great leaders for the boys.

So Nice To Be Home

We did it.  We made it home.  Tomorrow we return to clinic to get a dose of chemotherapy with a spinal tap, and taper down the steroids and we are officially half way finished with chemotherapy.  It seems odd that we could actually be half way finished, but that's where we are.  I will mention, there is a chance that things have not responded as well as hoped, and that we would need to add two more cycles of chemotherapy, which would mean we are only 1/3 of the way through.  Rather not have to go there, but it's a possibility.

The injections to encourage his bone marrow to start producing white blood cells begins tomorrow.  It  is such an uncertain time when he is so susceptible to infection.  It is so unpredictable.  And after having such a bad infection last time, it's hard to have any amount of confidence that things will be just fine.  We would love for them to be just fine and have no excitement.  We will see.  Here's hoping and praying.

A Bit From The Man of the Hour

A little question and answer with J.  Remember, he's 11.  This interview took place with me sitting on the couch and him sitting in the chair.  I was doing this to pass the time while he was trying to decide to take the pills.  They are crushed up into powder and placed into gel capsules, so that he can't taste them, but he still doesn't take them very easily.  Imagine a little bit of whining in the voice, and you've probably got it right.

The Colorful World of Chemotherapy

Before you click to open the entire post, I have posted pictures that aren't truly disgusting, but everyone may not enjoy.  Not the so disgusting that you may want to pass out type of disgusting.  That being said, people who pick medical careers often find bodily fluids more interesting than the general population.  We casually talk about bodily functions at times that others find socially unacceptable, such as over dinner.  So I'll write about the day, and then you can decide if you want to open the rest of the post and see the pictures (I'll warn you, the build-up is more exciting than the picture).

J had his first dose of chemotherapy for this cycle yesterday afternoon.  His drug was methotrexate.  Since I was sick the last time he was having chemotherapy, this is all new for me.  Methotrexate has a nice greenish hue.  You can see through it. You may be tempted to call it "witch's brew" or "toxic waste", but I would be offended if you thought it was radioactive.  The methotrexate ran for about four hours Sunday afternoon.  During the treatment J played games with a friend.  They played "Liar's Dice", "Battleship" and "Head's Up".  What is it that enables him to carry on fairly normally, even while getting dosed with such awful medicines?  Zofran.  Miracle drug there.  The oncologists have repeatedly said that if he's sick and miserable, they are not doing their job, because we can treat the awful side effects, and it's working.

This morning he couldn't eat until he had his spinal tap for another dose of chemotherapy through his back.  We thought it would be nothing to eat until the treatment was done at 9 am.  Then we found out it would be at 1 pm.  And he would remain without food until then.  Poor guy.  The spinal tap happened without trouble, they even removed some staples from his incision, and then he was back for more chemotherapy.  This was doxorubicin.  It's red.  Almost looks like blood, but you can see through it and it's a little brighter of a color.  J did great with that as well.

Detour Over

I am happy to report that we are back in the hospital!  That may sound bad, but we are now back on course with the treatment.  I'll take it.  Enough detours.  No more scenic routes.  No more being the exciting medical case.  Let's just get in, get it done, and get out.

Life at Home

We made it home Thursday afternoon.  It's nice to be home.  J has actually put real clothes on.  No hospital gowns.  No pajamas.  He still has staples at his surgical incision, and the pants band crosses the staples.  We made that a little less irritating with a big abdomen pad, like a gauze on steroids.  

Going Home

We made it through the night without any fevers.  Stomach has calmed down quite a bit as well.  The plan remains to go home today.  We will be giving him antibiotics through his port while he is at home.  The antibiotic they had planned to send him home on would be given four times a day and runs in over four hours.  The doctor who is covering the service just for a day decided that's kind of a difficult regimen and switched him back to one of the antibiotics he was on during this admission.  It is given three times a day at noon, 8 pm, and 4 am (ugggh), but only takes about 15-30 minutes to run in, and overall will be much nicer.  So excited to not be loading him with so much through his IV.  We will have home health services come and instruct Mom how to be a nurse.  She's excited and I'm certain she is going to want to go back to school and become a nurse after all this is over:)

We appreciate all the prayers, babysitting, meals, visits while in the hospital.  It is so nice to know that so many have been willing to bear this burden with us.

Do I Even Dare?

Good news, but do I really dare post it?

Advance Diet As Tolerated

Allowing people to restart a diet after surgery is an interesting process.  Typically what happens after a surgery involving the bowels is the patient starts with clear liquids.  Clear liquids are to be distinguished from "full liquids".  To be clear, the liquid should be transparent (and without red food coloring).  You should be able to see through it.  Milk, orange juice, veggie smoothies, and motor oil are not clear liquids (although I guess vegetable oil would meet criteria, yuck).  Jello gelatin and popsicles are part of a clear liquid diet.  Once somebody tolerates clear liquids, they would move to full liquids (minus the motor oil).  I learned this morning from the nurse that cotton candy is considered a liquid, weird (gelatin and windows are also liquids, but in very viscous suspensions).  Milkshakes and pudding are also part of a full liquid diet.

Monday, Monday.

Can't trust that day.

Turning a Corner?

Yesterday J was out of bed in a chair for several hours.  He also walked around the end of the bed.  He would probably try to walk further if he didn't have an IV pole, IV lines, and two drains to drag behind him.  He hates having things tug at his body.  We also backed way off his narcotics.  He was getting a continuous rate of morphine for pain, plus he could click a button to give additional morphine.  The continuous rate was shut off and he is only occasionally pressing his button since that time. 

This morning he had to hurry out of bed, hobble to the bathroom (with assistance from one hovering parent) and have his first bowel movement.  Cause for celebration!!  He had one of his two drains pulled (he really didn't like that, I thought it would slide out without only odd sensation, but it hurt a little).  The other drain really hasn't drained much, and will likely get pulled out tomorrow.  He is on a clear diet without the restriction on the amount he can take.  If he can start getting some calories by mouth, we can get rid of the TPN, and the need for some peripheral IVs.  They are no longer checking his blood counts daily.  Moving a long.  Moving along.  OK, he did throw up this morning after drinking a small amount of water, so he's not going to totally bounce back to normal. With any luck, we''ll be home before it's time to start chemotherapy again.

Ileus

J has had increasing nausea over the last 12 hours.  He has thrown up three times (but I'll spare you the details).  He has used his pain pump much less over the last 12 hours than he had before, so we're probably finally doing well with pain control.  But the nausea.  Just won't stop.  He lies in bed with his had leaning way over to the side and the little throw up bin cuddled under his chin.  It's pretty sad to watch.  His belly is bulging out this morning.  This is what ileus looks like.

Brief Update

The labs were repeated and remained low.  He received one unit of blood and we'll see how it looks tomorrow.  His oncologist feels he has been through so much already that he is not surprised to see some variations in the labs.

We met a new player in the healthcare team today: the physical therapist.  J utterly refused.  His first response was, I'm not moving unless my parents are here.  I was there in 5 minutes (I'm bouncing between work and sitting with him).  Poor kid, he had a headache and he felt like he might throw-up. Physical therapy is one of those things that you don't want to wait until somebody feels up to it, because every day of therapy lost sets you back farther in your physical condition.  They wanted him to get out of bed and sit in the chair.  He refused.  They asked him to sit at the edge of the bed.  He refused.  They asked if he could roll to his side.  He refused.  (All the refusal came with re-stating how much pain he was in).  The physical therapist finally said that she would find his nurse to see if there was anything he could take for nausea.  While she was gone, he threw up.  Ironically, the best position for him while he was throwing up was on his side.  That's how we left him.  Sometimes I wonder if I'm a bully.

And It Doesn't Last

Yep, here we are the next morning with a new puzzle to figure out.

Surgery Again

We were lucky and had the first case of the day.  Returned to pre-op at 6:15 in the morning.  Third time hanging out in pre-op in four weeks.  Too many times in my opinion.  He had a bit of headache, and it is so noisy with 30-40 patients, all with beeping monitors and a team of about 5-6 people each.  He disappeared into his own world watching The Sandlot ("You're killing me Smalls") until they were ready to wheel him away.  They took him back about the time that I normally start work, and Mom had an appointment she needed to keep, so I went to work and waited, wondering if we would score on the very small chance that the entire incision could be closed, or if we would only be part way done, and plan on another surgery in a few more days.

Four Weeks

Yep, four weeks.  That's how long it has been.  Four weeks ago at this time I was trying to sleep on an uncomfortable couch (not realizing it folds out into an equally uncomfortable bed) wondering what this mass would be.  Wondering what the biopsy would show.  Wondering when they would get him for surgery.

The Surgery

The surgeon likes to give hourly updates when he is operating, so about 3:00 I was starting to get a bit excited for the phone call report.  It didn't come.  Hard to decide if that's a good thing or a bad thing.  About 3:15 the door opened.  In walked the surgeon (sometimes surgeons leave to tell really bad news, sometimes surgery is just short).  He was already finished.

The Decision

I was hoping to report on the quiet day.  I was hoping to explain that J's blood counts have all improved and that he is no longer neutropenic.  I had hoped to explain that they lifted the silly restriction requiring everyone to wear a gown, mask (with eye protection), and gloves because J tested positive for rhinovirus, or the common cold.  I was hoping to explain what TPN was and how it looks like they pump milk straight into the veins.  While all those things are true, the surgeons came.  Surgery is recommended.  It's happening today.

The Rest of the Story

 Last night when we were draining the abscess, there was an additional significant finding on the CT images, that was not present on the initial CT images.  It really detracts from the happy feeling from finding the abscess and draining it.  There was contrast material present within the abscess.  We give the patient contrast material through their blood, which in turn goes through their kidneys and ultimately into their bladder.  We also make patients drink contrast material, which stays in their bowels.  The question is where did the contrast come from.  The likely explanation is that there is a small hole somewhere in his bowels that is opening into the abscess.  

The Abscess

Well, we didn't accomplish any of our goals yesterday.  Rather, there was enough concern over his increasing pain and redness near his incisio, that we performed a CT scan.  J was a trooper drinking the nasty drink we force people to take when we need to know what part is bowel and what part isn't.  The scan is pretty quick, so it wasn't as difficult as the MRIs he has had to endure.

Labs, Fevers, and Pains

When caretakers sit and sit in the hospital with their sick loved one, they may begin to be fixated on certain things (actually happens to doctors with really sick patients as well).  This isn't always a good thing, because it's better to stay focused on the overall health, but hard to fight human nature.  J has three attention grabbers that we are always looking at, and hopefully not missing other important details.

Weekends

Wednesday when we brought J in, and Thursday as we were first getting information, we thought that perhaps we would be going home today, Saturday.  Not going to happen.  He had fevers again last night.  We still don't have the final identification of the bacteria we are treating, so he remains on the big gun antibiotics.  He still has no white blood cells.  His mouth is still sore.  We still have to spend a good 30 minutes to convince him to take his medications (in his defense, it's rough when the "cure" exacerbates the pain in his mouth from all his sores, it's not just childish whining).  His platelets continue to drop.  He has more pain in his belly.

On the good news side of things:  His red blood cells are increasing.

Infections

During medical school we did a lot of case based learning.  For infectious disease the typical student would immediately jump to the idea of drawing blood cultures to identify the bacteria and find out which antibiotic is effective, and please have that result in 15 minutes, thank you very much.  In the imaginary world of case based learning, we would be forced to wait for those results usually about two days before we would get the results, and then the case would practically be over.  The two day wait for results is pretty realistic.  It has almost been 48 hours since we came into the hospital and we are still waiting for the final information on this bug we are treating.

The day has been pretty unremarkable.  J has some mouth sores, but doesn't like the mouthwash.  He hasn't eaten much, but he did manage to have a protein drink.  He's pretty tired.  Not only is he more anemic than the day before, but they woke him up every two hours last night to take blood pressure measurements.  So hard to get rest in the hospital.   He still has no white blood cells.  Just waiting for his blood counts to turn the corner and start rising again.

This Day: A Much Better Ending

As we come to the end of the day, J is feeling much better, looking much better, and smelling...well...kind of better.  His blood pressure is back to a happy place without having to give larger amounts of IV fluids over a short period (called a bolus).  He has eaten food, but only food from home (we received a call from nutrition services wondering why he hadn't ordered any breakfast or lunch).  Picky kid.  He was able to FaceTime with some of his friends from school.  He took a sponge bath/shower.  He would smell better if the hospital used soap that had any fragrance, but it's pretty bland.   He is playing games on his Kindle and took a quiz to see how he would be sorted at Hogwarts:  Ravenclaw.

We still need to wait for more detailed information on what type of bacteria he is infected with.  If he holds this course, we could potentially be out this weekend.  For now, I'm expecting a pretty nice night.    Enough excitement for this week!

Things Look Much Better in the Morning?

In general it's true that things look a bit better in the morning.  For us, I'm not quite certain.  When he woke up things were looking good.  His heart rate was down.  His breathing was improved.  His fevers were better.  Then we started to get results.

Fevers?!?!

When I came home from work and as we were starting to eat dinner, J kept calling for Mom to come.  After a couple trips upstairs, Mom sent me up to look at him because his heart was racing.  He described an odd sensation where everything seemed to be moving faster than it really was.  He was more sensitive to sound.  He didn't like how he was feeling.  I used our thermometer and consistently measured 102.  Mom came back and measured 101.  His hands were cold and blood flow in the fingers was slow (nice little test is to push the blood out of the skin at the end of the finger by squeezing it between your fingers and see how fast the color comes back, try it on yourself).  We called the oncologist and were instructed to come into the hospital.  I took a moment to place Emla cream on the port site (score one for thinking ahead).  Mom and I both snuck extra mouthfuls of food (delicious big cookie for dessert tonight).

They took his temperature at the hospital.  100.2!  That was all!  Needed a little validation, and he's barely warm when we get there (yes it's embarrassing for me to be the panicky parent that always adds two or three degrees to my child's temperature).  His heart has been racing, but his blood pressure has held up fine.  He had blood cultures drawn and he had his nose cultured for flu.  He was started on IV fluids and antibiotics.  And now we are waiting.  And hoping.  And praying.

His heart rate continues to be super fast.  His breathing is pretty rapid.  He suddenly threw up.  He had the chills.  Rechecked his temperature:  99.6.  He had a headache.  Looks like a long night ahead of us.  Better that we are in the hospital than at home, I think.

Neutropenia

Chemotherapy is pretty effective.  One of the ways that it works is that it targets cells that are dividing, and disrupts various steps in cell division.  The problem is, it doesn't discriminate between normally dividing cells and abnormally dividing (cancer) cells.  One part of the body constantly producing new cells is the bone marrow.  When bone marrow sees chemotherapy, the body's ability to replace the constantly dying blood cells is stopped and over a matter of days to weeks, the body has to rely on a limited supply of blood cells.  This results in anemia (too few blood cells), neutropenia (too few white blood cells, particularly neutrophils), and thrombocytopenia (too few platelets).  I promise, I'm not making up words that end with -enia.

NPO After Midnight + Two Hour Delays = Whoops

NPO stands for "nil per os", or nothing by mouth.  This is the common order placed or instruction given prior to surgery, procedures, imaging studies, public speaking, etc.  The easiest instruction is to say NPO after midnight (rather than "don't eat this many hours before your procedure", which requires math), but even that is usually misleading.  You may be able to take clear liquids (liquids that you can see through, like water or Jell-o gelatin, not milk or pea soup), but that depends on what is actually happening.  J is scheduled for his spinal tap early this afternoon and was supposed to be NPO after midnight.

It snowed yesterday.  Not a lot, but it snowed enough to make the roads a little messy.   It was supposed to snow well into the night.  Our school district covers a large geographic area with a lot of hilly roads, so usually the forecast of snow results in either school cancellation (when there is no actual snowfall) or a two-hour delay (when small amounts of snow fall).  (We never really get a lot of snow, but I'm sure that if we did, we would still send the kids to school).  Last night we received the phone call for a two-hour delay.  Hooray!  Love two-hour delays!

Sadly, this one messed up our schedule.  I woke up to clear our driveway.  The kids had a late breakfast.  Mom was feeding the baby.  Somehow in the mix of all this excitement, J ate breakfast.  We're quite happy he is eating, but sad that he ate at the wrong time.  I called the Pediatric Sedation team and they said, "Whoops".  They also said he can never eat 8 hours before the procedure, but can have clear liquids up to two hours before).  Fortunately they gave us an adjusted time of late in the afternoon, so he'll still get this last dose of chemotherapy and be officially finished with his first round of treatment.  And that is something to really be excited about.

And We're Home!

We had a pleasant surprise today.  J finished his last IV dose of chemotherapy this morning.  By the treatment protocol he is on he needs another dose of chemotherapy through a lumbar puncture tomorrow, but they do those under sedation and getting sedation on a weekend for a non-emergent case is not going to happen.  He's scheduled for Monday.  Rather than make us wait two days in the hospital for this treatment, they sent us home today.

The Lord's Hand Making Our Burdens Light

There have been a lot of little things that have happened over the last month that have made this a little more bearable.  Some may see these are mere coincidence, but I see these as tender mercies of the Lord and evidence that He is a part of our lives.  There is a story in the Book of Mormon of a people who were being denied their religious rights, and threatened with their lives if they were caught praying vocally.  This is part of their story (Mosiah 24:14-15):

And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage; and this will I do that ye may stand as witnesses for me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions.And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.

 Here are a few of the things that happened that have helped prevent a bad event from being worse, in no particular order:

Chemotherapy

J returned to the hospital Tuesday to begin his first round of chemotherapy.  Mom has been worried about how he will handle this and thought we would both need to be present with him.  Without trying to start a fight, I thought, "Why would we want to do that"?  It turned out that neither of us got what we wanted, because I came down with the flu.  One other child tested positive for influenza, two others were sick, and we all managed to keep the makers of Tamiflu in business all by ourselves.  Mom is the only one allowed to see J in the hospital.

Follow-up MRI

We repeated the MRI.  J complained about having to be in that noisy machine.  "I hate MRI's!!!".  Remember the steroids?  Oh, and adding the need to access his port right before this. He was not happy about this.

MediPorts

One of the nice things they do is place a medication port inside the body.  It has a little reservoir that can be punctured by a needle, just underneath the skin in the upper chest.  This is what the reservoir looks like with a needle in it.  Obviously not under the skin:).

2nd Time Home

We were allowed to take J home for the weekend.  This decision is where medicine takes on some of the personal biases of the doctors.  We have three pediatric oncologists.  Last week they rotated the inpatient coverage on a daily basis, which doesn't impact the main treatment plan, but can lead to a little inconsistency on the minor details.

Steroids

The lumbar puncture was the first part of treatment.  Later that day he received all of his chemotherapy.  Two doses of something that took 15 minutes each to deliver (really anticlimactic if you ask me).  The remainder of the week was steroids in the form of prednisone.  Here is a list of prednisone's side effects (conveniently available on the internet):

Lumbar Punctures

Tuesday, the seventh day after discovering the mass, we returned to the hospital to be admitted and initiate treatment.  The first part of the treatment was an intrathecal injection.  Intrathecal refers to being in the CSF space surrounding the brain and spinal cord (similar to epidural, but a little deeper).  Lymphoma can make it's way into this space, but the chemotherapy given intravenously can't cross well into this space.  Over the course of treatment, J will get poked in the back about 9 times to inject medication.  

The Results And First Time Home

The surgery was Friday the 13th.  Before surgery, J and his little brother had met on the bottom floor of the hospital since there are visitation restrictions on young children due to RSV.  They both repeatedly ran under this tall ladder.  Over and over.  OK, I'm not superstitious, but I thought it was a bit funny.

The Biopsy: Dad's Perspective

I hate waiting.  J inherited the fidgets from me, I am certain.  When I'm being a doctor, I love efficiency.  Wednesday night, after chatting on the phone with the pediatric oncologist (not her usual way of dealing with new patients, but as of this point everything we knew was from my domain of medicine, I had more to tell her than she had to tell me), we had a nice plan in place.  J would not eat after midnight.  The surgeons would meet us the next morning. They would let us know they have a slot for surgery that afternoon, and we would have preliminary results by Thursday evening.  We would then go home that night, because it was a simple surgical procedure that could be done as same-day surgery.  That was the plan.

The Discovery: From Dad's Perspective

For a couple months J was having pain low in his belly.  Previously we had him seen by his doctor and determined the pain was from constipation.  He somewhat faithfully followed a prescribed course of Miralax and his symptoms improved.  Recently the pain started again and he confessed he no longer followed his Miralax regimen religiously.  We chided him and threatened him and told him he needed to improve his compliance if he ever wanted to feel better, because that's what good parents do:).  Wednesday Feb, 11 in the afternoon, he had a new pain low in the left side of his back.  I was at work an hour away and Mom called to let me know he was in great pain, and couldn't even bend over.  Weird.  Maybe a kidney stone? We decided to get him to the pediatric clinic. I headed to pick up the girls from their string lessons and met up Mom and J at the clinic.  The drive home I had a recurring thought about these strange symptoms, "What if this is cancer" and would quickly dismiss it as silly, paranoid parental worrying.