Band Concerts and Other Normal Things

Tonight was J's 6th grade band concert.  He plays the alto saxophone.  It was a typical middle school band concert.  They managed to play together.  There were only a few times when the band was supposed to be silent, but one person took an impromptu solo.  There was a fun song played by all three grades about the revenge of the dust bunnies, with a live vacuum cleaner at the end.  They performed in their gym and had the performing band in the center, and the two sitting bands were in the back of the room seated in chairs.  J fidgeted like a 6th grader.  He whispered to classmates while other bands were performing.  He couldn't stop talking about how much fun the evening was.

Quick Update

J had a long day at the hospital getting CT scans, labs, and follow-up visit.  The long and short of it is that the lymphoma remains in remission.

Remembering

Anniversaries seem to assume a celebration of sorts.  But people who have lost or have been hurt also know there are sad or somber anniversaries.  It has been a year (Feb 11) since we found J's lymphoma.  Talking with J tonight he said, "It doesn't seem like it could have been a year since that all happened, it doesn't seem like it has been that long."  I reminded him he was in a bit of a daze during a few months of treatment.  He chuckled a bit and said, "Yeah".  I asked him earlier what he thinks about regarding his experience over the last year.  He said he kind of prefers not to think about it at all.

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.