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.