Day 151 - State of the Family

     I thought for tonight's entry it might be good to offer up a generalized update on where we're at overall.  Similar to a presidential State of the Union, I'll break this up into various topics.

Chemotherapy

     We're on day 20 of this phase of chemotherapy, Delayed Intensification.  As has been the case in the past, the steroids have Evan acting out of sorts.  He's set to conclude them again on Thursday morning.  He's not scheduled for any IV based drugs this week.  The reason being is doctors would like to see how his blood counts look before beginning the more toxic drugs.  The medical team estimates he'll be at his most vulnerable sometime around Thanksgiving.

Blood Counts

     Evan's blood shows average-to-good levels, despite the chemotherapy.  Our primary oncologist told us some of these counts are because of the steroids.  It has a stimulating effect on bone marrow and this has spiked his white blood cell and ANC numbers.  Platelets and RBCs are within normal ranges and Hemoglobin is just under an acceptable level.

Family picture from our Camp Sunshine photo session.

Miscellaneous Health

     There are a number of areas the medical team has been working to improve.  We have an ultrasound scheduled for Thursday to re-evaluate the clot in Evan's chest.  Assuming the blood thinners have dissolved it, we're told we can reduce his Lovenox shots from twice to once a day.  The doctors feel that keeping him at once a day would prevent clots from forming in the future.

     Today is the last scheduled day of Keflex (antibiotic) meaning we can remove another nine pills from his daily intake.  After Thursday, when we get to pull the steroids, that leaves us with Voriconazole as the last important drug.  The others he takes as preventative measures from side effects due to the various treatments (Prilosec, Periactin, Zofran, Lovenox).

A little Nerf gun target practice.

     Evan has been to the ER a few times over the last 30 days.  Each time it was related to a fever and each time blood cultures did not yield any infections.  With his improved white cell counts this leads me to believe it's likely some sort of reaction his body is having to the chemotherapy.  On the plus side his fungal infections seem to be under control and his overall appearance has improved.

Physical Therapy

     Evan's reluctance to walk has caused me to hit my boiling point.  We've been walking more laps around the main level to improve his strength and confidence.  He fights us every step of the way which makes it even harder to make significant progress.  Cristy and I have decided to go back to twice a week physical therapy sessions with Children's Healthcare.  Once he gets warmed up with a few laps his posture and balance seem to improve dramatically, I only wish he would embrace the exercise more than he does.

Walking a few laps before bedtime.

Mental Health

     At this point on Day 151 we're hanging in there.  Our biggest challenge in my opinion is finding time for each other.  By the time we get Evan treated, the boys fed, cleaned up and in bed it's usually 9:30.  This doesn't include cleaning, laundry, exercise or relaxation time.  Speaking for Cristy, I think we'd both agree that as long as Evan comes through this in remission without a relapse it was worth it.  I firmly believe we're going to come through this stronger as a couple and as a family.

     As with any State of the Union you need to inspire people and give them reason to believe that tomorrow will be a better day.  I can tell you Evan is better today than he was in June, July and August.  Each day he improves a little bit physically, scholastically and mentally.  We address each challenge as they arise, but at the moment our main focus is keeping him healthy while his immune system is so compromised.  We'll continue leaning on each other and loved ones to navigate these uncertain waters, looking forward to brighter days.

Super Evan!

     I leave you with a song Cristy has mentioned gives her motivation and strength.  It's called Unstoppable by Sia.  We hope it one day inspires Evan to fight through adversity when he's not feeling his best.  Enjoy!

Day 147 - 3rd verse same as the first

     Earlier today Evan completed another session of chemotherapy.  We got postponed for a day, but the doctors said this wouldn't present any additional risk to his treatment plan.  This morning Evan received two chemo drugs along with a drug to help minimize damage to his heart.  He came home a little sleepy and groggy, but we just figured it was from waking up early.

This morning at the clinic receiving chemotherapy.

     His blood counts continue to look solid, especially considering how much his body has been through.  Next Monday Evan can remove Keflex (antibiotic) from his daily schedule.  We've started steroids back up this evening and these will run until next Thursday.  The expectation is that his appetite will go back into overdrive and his demeanor will be best compared as bi-polar.
     Now on to the subject of his appetite and ultimately his weight.  This morning he was down to 20kg (44 lbs).  Cristy and I took our foot off the gas because we've been able to feed him in the evenings via his feeding tube.  During this time we've focused on healthier foods so in my mind it hasn't been a complete loss.  Overall his body looks much better.  After this next round of steroids Cristy and I will need to make sure we stay on top of his caloric intake.
     Cristy found out more about Evan's chemotherapy schedule following Delayed Intensification.  It appears I was mistaken on when he'll begin Long-term Maintenance.  His next round after DL is called Interim Maintenance II.  At a high level this will include chemotherapy every 10 days, so not drastically different than right now.  I'm unclear what the dosage sizes will look like;  however, as usual it will probably be tailored to Evan's bone marrow characteristics.
     You may have noticed my comment earlier about Evan being groggy and us chalking this up to a long day.  Well, that may or may not have been the case.  However, upon waking up from his nap he was running a fever.  I called Cristy while leaving work and found out she was waiting on a call back from the doctor, but he was already up to a temp of 102.  It was rush hour so I told her to start heading that way and I'd meet her there to either take Evan or Nolan.
     As normal, they took a blood sample, monitored his vitals, administered some antibiotics (Zosyn) and gave him some Tylenol.  Upon getting to the ER the nurses took Evan's temperature and he was already down to 99 - 100.  His heart rate and respiration were a bit high, but Cristy noticed they were high at the clinic this morning too.

This evening in the ER awaiting next steps.

     One more thing I wanted to note in today's blog was regarding Evan's nadir.  Some may remember this is the point of a chemotherapy cycle in which the blood counts are at their lowest.  The doctors calculate his nadir from today's chemo will fall sometime around Thanksgiving.  Evan's counts will likely take a dive again during the second half of Delayed Intensification (in December) after he starts some different medications. The nurses have warned that blood and platelet infusions may be required during this time.
     While this will definitely hamper our availability during the holidays, we hope it will give us something to be thankful for once we're through this trying phase.
   

Day 146 - No updates

     Evan's appointment was set for today, however it got postponed until tomorrow morning.  Not sure if this was a scheduling snafu or if they were overbooked today.  I'll provide another update tomorrow evening with his status.

Day 143 - Fingers crossed for a few quiet weeks

     The past few days have seen some highs and lows.  On the plus side Evan's appetite is still fairly strong in spite of being off steroids since Wednesday.  In addition to that he continues to work hard in PT and seems much healthier physically.
     Now on to the negatives.  Friday night Evan spiked a fever at the house of 101.3.  The on-call doctor asked us to bring him in and prior to receiving Tylenol in the ER he registered a 102.2.  Because he wasn't showing any other symptoms of being sick we felt pretty sure this was likely related to his most recent session of chemo.  The blood cultures haven't returned anything and if I was a betting man it won't culture.  We have to be on the ready at any moment so Cristy decided to invest in a nicer overnight bag on Saturday.  This appears to be the norm for Evan, sadly Cristy and I are quickly becoming more used to the process.

Just another night in the ER.

     I'm going to chalk this up to one of the drugs he's on, but Cristy and I have started to notice the tops of his arms becoming blood red.  It seems to come and go and we don't see a correlation between temperature, food or another other factors.  We'll mention it to the medical team this week to see if they have any thoughts.  

Evan's room looking more and more like a hospital.

     This coming week Evan has chemotherapy scheduled for Wednesday, which includes another week of steroids starting on that day.  Evan's taste buds have evolved to favor Indian food for the moment, so we've got a week's supply of ingredients to make butter chicken everyday.  I'm not normally a picky eater, but I can't see myself eating the same foods for four or five days straight again.  I'm excited to see what his weight will be on Wednesday.  The feeding tube in the evenings allows us to get even more calories into him and his body looks really good.

Although unintentional, this reminds me of the Leia / Jabba the Hutt scene in Star Wars.

     Hopeful for a quiet week as we get into a dangerous portion of this phase.  On Wednesday I'll provide another update with blood counts and such.

   
   

Day 140 - Little suprises

     Evan's latest session of chemotherapy has come and gone.  Yesterday he spent the entire day at the clinic for assorted tests, checkups and treatments.  Upon his return he was a little groggy and tired, but overall looked pretty good all things considered.  Evan's latest blood counts looked extremely strong.  In fact, they were so good that Cristy and I both did a double-take and spoke with Evan's primary doctor about them.  Please see the image below:

Updated blood counts.

     For those unfamiliar we typically focus on WBC, RBCs, HGB, Platelets and ANC.  Evan's extremely high WBC and ANC had us a bit worried as we thought it could be a sign of the cancer returning.  Our doctor assured us this is normal due to the steroids.  In addition to killing cancer cells steroids stimulate the bone marrow and sends a signal to release more cells.  If it wasn't so hard on your organs I'd suggest that steroids were a miracle drug.

Killing time between procedures.

     This was a pleasant surprise for me as I assumed his numbers would have taken a hit from the previous session of chemo.  Our doctor indicated it takes 10 - 14 days for blood cells to start dying off and to expect Evan to be much more vulnerable sometime next week.  He also tried to prepare us for the high possibility of fevers returning during this phase.  To minimize this risk and based on Evan's immuno-history (which is not a real word) he received an IVIG treatment yesterday.

The weight gain makes him look much healthier.

     There are some obvious benefits to higher WBC counts, namely Evan's skin and bumps have really started to look better.  Additionally, his weight continues to rise giving him much needed support.  He eventually grew tired of fried rice and we've moved on to chicken, jasmine rice and cucumbers.  I've literally cooked the same chicken and rice combination for the past few evenings.  When he's not eating that cheeseburgers are his food of choice, which is unusual because prior to getting sick he didn't even like burgers.

2nd cheeseburger of the day.

     Today Evan is meeting with the plastic surgeon and having another ECHO done on his heart.  My fingers are crossed that the "infection" or "muscle" that they saw in his heart during the last scan looks better.  Evan's primary doctor was a bit perplexed why his heart would show anything unusual as the drugs he's been on prior to this finding would have had no effect.

     The steroid treatments ended yesterday, but pick back up next week.  With any luck I'll get my happy-go-lucky boy back this weekend and if he's feeling up to it we can do a movie night.  PT is on-going and not much to update on that front.  His legs feel much stronger to me, but there's obviously still a balance issue going on.  We'll continue working with the therapist with the hopes of having him walking again soon.

UPDATE - Cristy: Evan and I had another long day of appointments and waiting today. Evan's follow-up with the plastic surgeon went well. He looked at the incision on his wrist and was pleased with the way it is healing. He advised to put Vitamin E oil on it a few times a day to help with healing and scarring. Otherwise, he said we can mark him off our list of doctors.

As for Evan's ECHO, everything looked good today. His numbers indicating how well his heart is squeezing were higher today than last week. The doctor said the last test just seemed to be a "hiccup", and some slight variations are common. As for the possibility of endocarditis (an infection of the valves), he saw no signs of infection. The spots seen last week appear to just be from the way Evan's mitral valve is formed.

The doctor did suggest Evan see a cardiologist on a regular basis, just to monitor him, and to keep an eye on him should any changes arise or should he end up in the hospital again for any other infections. We go back in January to establish Evan with a cardiologist and get a full exam. It was another long day, but at least we got some good results!

Day 138 - Chinese food and cheeseburgers

     Halloween has come and gone for 2016.  The family and I had a great time this year trick or treating, spending time with friends and enjoying various festivities.  Despite Evan's mobility challenges we made the most of the evening and collected quite a bit of candy.  I never realized how hilly our neighborhood was until last night.

Fell asleep watching Star Wars earlier this week.

     While we're on the subject of food I thought I would update folks on the biggest development since my last blog entry.  Evan's appetite has taken off due to the steroids.  Last week Cristy and I didn't feel like dirtying the house cooking so we ordered Chinese food.  Evan thoroughly enjoyed the fried rice, so much so that the next morning he asked for more.  And then again at lunch.  And again at dinner.  We're at about five days in a row now of fried rice.  The restaurant in our area surely appreciates our near daily visits for refills.  Evan has requested fast food more than normal as well.  The mood swings are a bit of a drain, but as long as he's eating we can deal with it.

Updated schedule along with Cristy's meticulous time keeping.

     Late last week Evan's PICC line was becoming sluggish.  Cristy called the hospital to raise the concern and they asked us to come in yesterday to flush it.  The main fear is allowing bacteria to fester in his line and then go directly into his heart and blood stream.  I'm happy to report the nurses got it cleared and for now it's fully functional again.  While there they weighed Evan and he gained two whole kilograms, up to 20.9 kg (46 lbs)!  He's still down overall, but his increased appetite, combined with the food we feed him via stomach tube each night, will surely put him in a more healthy state ahead of these tough chemo sessions.

The boys were beyond excited to get out the door.

     Monday afternoon we also received the results from some blood work that was drawn last week.  His anti-fungal levels have returned to a therapeutic level.  We saw a dip in the numbers a couple of weeks ago and there was talk of increasing his dosage again.  The medical team has to be very careful dosing this particular drug, Voriconazole, as it can cause hallucinations, color blindness and temporary blindness.  His skin has started to look better over the past week and his cysts are decreasing in size.

8:00 medications being administered while out trick or treating.

     Evan has another session of chemo tomorrow, followed by another heart ECHO on Thursday.  He's also scheduled to meet with the plastic surgeon on Thursday to check all the surgical sites for his most recent operations.  I won't know his blood counts until tomorrow at the earliest, but I'm expecting a noticeable drop because of his last chemotherapy session.  As more sessions take their toll Cristy and I will need to be vigilant with his health and cleanliness.

Evan was a little wobbly, but rarely complained.

     With another Halloween in the books we continue to look towards the future.  We're pleased with the progress so far, but we still have a ways to go.  Counting the days of this treatment phase and hoping for the best.
   

Happy Halloween!

Day 133 - Stand up and fight

     Let me start by thanking Cristy for pinch hitting for me yesterday.  To be honest I haven't been able to take part in many of the doctor's appointments lately and as a result am not as educated on this phase of chemotherapy as I should be.  I felt that basically relaying everything she was telling me would essentially make me a ghost writer and figured it was time for her to come off the bench and put her heart on the page.
     As I've done on a few occasions previously this blog entry will contain more emotion than facts.  I think Cristy covered some of the facts yesterday, but if you missed it let's briefly recap.  Evan has had difficulties holding down his feeding tube.  This afternoon after physical therapy he went back to the clinic to have it re-inserted.  Until Wednesday, the date of his next appointment, Evan will be taking 7.5 steroid pills daily.  If my regular readers recall, steroids absolutely "melt leukemia cells" (the doctor's words, not mine) and are a crucial part of his treatment plan.  His fluctuating weight makes this feeding tube an essential tool for Cristy and I in order to get much needed calories into Evan's body; however, a fortunate side effect of steroids is an increased appetite.

Playing hide-and-seek before bed.

     The tube gives him some pause and triggers his gag reflex, but over time we're hoping he'll adjust.  Now for the emotional part of the blog that I promised.  Overall Evan is reluctant to test his limits, whether it be eating, walking or talking.  Could Cristy and I have changed this behavior had we supported him differently?  Or is this the case of a five year old struggling to cope with the daily bombardment of drugs, therapy and eating that we force on him?  These are just a couple of the questions that I have to ask myself when deciding how to handle each situation.
     This daily struggle has taken it's toll on Cristy and I.  She deals with his daily needs more than I do so naturally she feels more of the brunt.  This burden hasn't missed me completely.  I push and plead daily to inspire Evan to do the things necessary to improve his health; and when that doesn't work I yell and scream.  Not my preferred approach mind you, but if it keeps him within acceptable limits for weight and mobility then I can sleep well at night.  Some of the best parenting advice I've ever received is be your kid's father, not their best friend.
     I feel Evan's mobility hasn't quite progressed as quickly as I would want.  How much of that is mental vs physical is a debate and Cristy and I discuss daily.  There's no question that his core and leg muscles are stronger.  When Evan walks unassisted I don't know if it's a balance or confidence issue that causes him to wobble uneasily.  During PT this afternoon Cristy noticed how energetic he was, so much so that the therapist was surprised.  Not confirmed, but I'm wondering if the steroids have given him the burst in energy he needs.
     Tonight I felt that some motivational music was in order since I haven't added to our cancer playlist in a while.  In light of Evan's walking challenges I thought a good song would be Stand by Rascal Flatts.  The song itself gives a pretty decent glimpse into the psyche of the entire family right now.  We have good and bad days, but we'll come through these battles scarred and bruised, but stronger.