Day 229 - Delayed Intensification finally strikes

     The last couple of days have been a whirlwind of emotions.  When I got home last night Cristy alerted me to a potentially infected area around Evan's PICC line that was discovered during his weekly dressing change by the at-home nurse.  This is particularly troublesome because it basically allows bacteria direct access into his bloodstream.  We called the CHoA Oncology on-call and he suggested coming in to have it looked at.  Cristy and Evan went to the ER last night to have it examined and while red and irritated, the nurses felt it was in decent enough shape to re-dress.

Releasing the butterflies that we helped through metamorphosis.

     Once Evan and Cristy got home around 11:30 we gave Evan a quick snack and quickly prepped him for bed.  While I was reading to him I noticed he kept scratching and tampering with his bandages.  I asked him to stop and told him that going to sleep might be best.  About 10 minutes later we heard a blood curdling scream and Evan had scratched half of his dressing off exposing his PICC line and wound.  Cristy scrambled to re-cover and again we were prepared to visit the ER.  The on-call doctor told us to keep an eye on it and try to get it properly covered in the morning.
     We checked Evan last night, this morning and throughout the day, but didn't notice any changes to his wound site, so we've just assumed that we had managed to dodge a bullet.  Cristy and Evan left around 11:00 today to head to Evan's MRI appointment.  The intent of this was to check for bone growth and blood flow in his ankle.  This has been hard to see in an x-ray because the radiation blurs out cartilage, veins and ligaments.  We heard back from the surgeon just before dinner and needless to say his news was not what we were expecting.

     The surgeon discovered that Evan's leg has multiple infections.  His ankle is re-infected and now there is a pocket of infection below his kneecap on the proximal tibia.  As of right now the plan is to get admitted into the clinic tomorrow at 8:00 a.m, where the Oncology team will direct him over to the OR for an operation on both spots of his leg.
     All of this came as a surprise so we didn't have a list of questions prepared.  What I can tell you is the surgeon said that blood flow appears to be fine, but stunted by the infections in his leg.  Cristy asked why we hadn't noticed inflammation, redness or swelling typically associated with an infection and he stated that without white blood cells to kill the bacteria you wouldn't see these symptoms.  Thinking the worst this obviously makes me wonder just how big of a problem we're dealing with here.  I'm afraid we won't know for sure until his white blood cells bounce back.

     Not confirmed, however I'd expect that we'll be in the hospital for at a minimum the remainder of this week for observation and to closely track his blood counts.  ID will almost certainly be front and center again as well as we determine how best to treat the various pockets of infection throughout.  I don't know what I had expected to hear today from the doctors, but this took the wind from my sails.  Cristy is visibly upset and we're trying to take it in stride and stay strong for Evan.  My parents have agreed to watch Nolan for us so that we can focus our attention on getting Evan healthy.  Time to face adversity again and see what we're made of.

Day 227 - Getting stronger

     Friday afternoon we received the blood counts from Evan's draw earlier that morning.  It appears his body isn't quite ready for the next round of chemotherapy originally scheduled for tomorrow morning.  His hemoglobin, WBC and platelets had all recovered, but his ANC was too low.  If you recall, ANC is calculated on both WBC and neutrophils to help determine a score for your body's ability to fight infection.  The doctors have asked we check his blood counts again this coming Friday and if they have improved we'll start the next round of chemo the day after the Super Bowl (Go Falcons!).  There were markers in the blood that would suggest his bone marrow is bouncing back so while I was originally discouraged the doctors seem pleased with where he's at.  It would appear we have dodged the need for a blood transfusion.

We ordered a butterfly kit for the boys.

     Evan's ankle has not healed as quickly as expected, but we're continuing our on-going PT work here at the house and off-site.  He has an MRI of his ankle scheduled for Tuesday to get a closer look at the bone, cartilage and blood vessels in that region.  Our fingers are crossed it isn't something more serious.  I briefly mentioned it in the last blog, but the doctor would like to rule out AVN (Avascular Necrosis).  In short, it's a disorder that causes bone death due to lack of blood flow.  It's not normally found in the ankle; however, we still need to confirm there isn't a bigger issue.  Our surgeon isn't an expert in Oncology so he couldn't ease our concerns, but we're hoping the lack of bone development is related to the stringent chemotherapy his body has been dealing with lately.  We plan on talking to the Oncology team this week to see if they can provide any insight on this.

Working on Valentine's Day bracelets and stickers.

     Interestingly, Evan's appetite has shriveled up almost completely again.  This is despite the fact that he hasn't had chemotherapy in almost two weeks.  Cristy and I are doing the best we can to tailor the meals to include higher concentrations of calories and in the meantime gaining weight ourselves.  Hopefully his eating habits will normalize over the coming months.  We're not scheduled for any of the more challenging chemo inductions from here on out.  Panda Express is our new go to spot at the moment.

Keeping mind and body strong.

      Mentally Evan is holding up very well.  He's doing great with his school work and we're blazing through a book series called The Magic Tree House each night.  I do most of the reading, but will occasionally ask him to read a few lines and he normally is able to pick it up without a problem.  His math skills have improved too, and Evan likes to work with his little brother on addition and subtraction using a toy cash register the kids got for Christmas.  Sadly it's one of the few times each day they're not fighting.  Keeping a child with cancer healthy is hard enough without the rough housing, but boys will be boys.  Cristy and I have been slacking with the photos lately, but I promise we'll step our game back up.  Should have another update Tuesday evening following  his MRI appointment.

Day 223 - We've had better days

     Evan and Cristy just completed another long day of appointments.  While it only consisted of meeting with two physicians the first appointment was at 7:40 off of North Druid Hills.  I wish I had better news to report.
     The first appointment was with the Immunologist that has recently taken Evan as his patient.  The Dr. reviewed his medical history and the results from the blood samples taken last month and spoke with Cristy about his findings.  Unfortunately he didn't feel there was anything in the blood to necessarily indicate a larger issue.  You might say, "Isn't that good news?".  Normally I would say yes.  However, Evan has had situations where his immune system was not responding to infections that were not related to chemotherapy suppression.  The Dr. agreed to consult with his peers and perform another blood draw for additional testing in the near future.
     He would also like to perform some genetic testing in an effort to find any possible immunological deficiencies. Typically, a problem with the immune system would be seen when the child is young, possibly in infancy, then continue throughout. The fact that Evan was a normal, healthy little boy before his cancer diagnosis does not coincide with this. There are cases of immunological issues associated with leukemia, but not typically with the kind he has. The genetic testing is a lengthy process, but may provide some possible answers.  
     Following this visit Evan and Cristy went to the mall to kill some time before heading to see the Orthopedic surgeon.  Another x-ray was performed and it showed a small amount of possible bone growth.  We were quite discouraged, although not surprised.  After all, he did just recently finish the toughest round of chemo.  With chemotherapy, it kills the bad and the good cells and the Dr. said it potentially could have affected his recovery.  He has since promptly scheduled us for a follow-up MRI next Tuesday.  This will give him a better idea of the growth and blood supply to the ankle, or if we're dealing with another problem here (AVN, Avascular Necrosis has been mentioned).
     These two set-backs could impact Evan's ability to attend school at all this year.  We're scheduled for the beginning of the next round of chemo on Monday and plan on consulting with the doctors about this.  Evan has undergone this round before and it didn't completely eliminate his immune system, but what we're finding is his immune system is anything but normal.  The suppressed immune system along with the need for his walker/wheel chair would be a difficult burden to place on the faculty at Hayes.
     Cristy and I are hopeful the days ahead will contain better news.  I should have more updates this weekend as Evan is scheduled for another blood draw on Friday.  If his counts are too low they'll suspend his chemo on Monday until his body is able to withstand the next chemical beating.

Day 217 - Not out of the woods

     Evan completed his latest and most difficult round of chemotherapy on Monday.  He's been faced with nausea and a loss of appetite, but we haven't noticed any other adverse effects.  His physical therapist has mentioned to us on a couple of occasions how resilient he is despite the changes his body is going through.

Playing with Evan's new web shooter.  Nolan and I were the victims.

     On Wednesday Cristy and Evan visited the CHoA satellite office near our house to have his blood counts checked.  The results were a bit alarming, but shouldn't have surprised me.  Evan's white blood cells, ANC and platelets were the lowest they've been since we began chemo.  As has been the case we'll keep him fairly isolated this week and likely next week as well.  Unlike previous nadirs we're hopeful that the Keflex and Voriconazole can keep any potential infections in check until his white cells recover.

Preparing the world for the next Picasso and Rembrandt.

     Evan has appointments scheduled with the Immunology and Orthopedic teams next Wednesday.  I'm anxious to hear their findings on both his ankle and in-depth details on his blood markers.  It's difficult to gauge where we're at with the progress on either because bone density can become a problem with some chemotherapy drugs and obviously with his counts being compromised I wouldn't expect to get a true reading on the health of his bone marrow.

Movie night.

     The medical team is working to finalize a date for the re-installation of his port.  This would certainly help Cristy and I as it would give us one less thing to maintain each day and it significantly minimizes his risk of infections.  The dates being thrown around right now are the end of this month or late in February.  His blood counts will dictate much of this and both dates coincide with his spinal taps for the next round of chemo (Interim Maintenance).

Time for some fresh air this morning.

     Hoping for a quiet weekend for Evan.  With the weather forecast calling for rain it will be ideal for movies and video games, which is right where we need to keep him in the short term.

Day 209 - Ice Ice Baby

     Another chemo treatment can be entered into the books.  Earlier today Evan visited the clinic and received the first of his next four Cytarabine injections in this round of chemotherapy.  We have a few more shots this week and oral pills, but these will end on Monday of next week.  From that point the medical team would like to wait until the end of the month before beginning Interim Maintenance, if his blood counts are high enough.  In the meantime Evan's counts will be checked weekly and monitored for any unusual drops or gains.

Getting a visit from Idina the service dog.

     Last week Evan gave Cristy and me a little scare because of an unexpected spot on his surgically repaired ankle.  Our Orthopedic surgeon had told us to keep a close eye on his foot following our last visit.  As fate would have it a red spot showed up on his ankle two days later.  The next day Cristy took Evan in for a once over from the doctors.  After a review and pictures they told us it could have been related to his body attacking bacteria in that region, but to continue watching it closely.  It's been about a week and I'm glad to say it looks exactly the same as when we first noticed it.

Little spots can be scary for neutropenic patients. 

     Yesterday Evan met with his primary ID doctor and with cardiology.  The main purpose of the ID visit was to draw a blood sample in order to confirm his Voriconazole levels were still at therapeutic levels.  This test takes a few days to return so we likely won't get an update on that until the end of this week.  Evan's cardiologist performed an EKG, but didn't see anything to cause alarm or any need to perform an ECHO at this time.  The reason for occasional cardiology exams is because of the strain these drugs can put on someone's heart.
     Our oncology doctor was able to share with us a bit more about Evan's future cancer schedule.  Interim Maintenance is slated to begin at the end of this month and each treatment will be spaced out by 10 days (depending on blood counts).  There are two spinal taps planned, along with various IV drugs and oral meds.  Tentatively the medical team would like to perform another surgical procedure to add a port back in to Evan's chest.  It was previously taken out due to the infections that Evan was fighting, but with these seemingly under control they're comfortable re-installing it.  This will eliminate the need for Cristy and me to clean the PICC twice daily and minimize the risk of infection.  Following Interim Maintenance Evan will move to Maintenance, which involves one visit monthly for IV based Vincristine and daily oral meds.
     Evan's appetite has stalled again, although his risk of significant weight loss is greatly reduced because of his feeding tube.  My hopes are that once we move into the Maintenance phase and off of these stronger drugs that his desire to eat will return.

Eating a little snow before bed.

     Last weekend the boys got to experience about 20 minutes of snow, as the rest of the 5 or 6 hours of precipitation was mainly ice.  Nevertheless they enjoyed it and the fact that they got to stay up a little later.  We've had unseasonably warm temps for the most part this winter, which I guess is good and bad.  I'm sure the boys would like to see Mother Nature give them one more attempt at snowy weather.

Watch out Nolan!

Day 201 - 2nd half of Delayed Intensification has started

     Today Evan and Cristy had a long day at the clinic.  The actual chemo administering probably totaled about an hour, but there are fluids that must be given before and after the Cytoxin which made this an all day affair.  We'll start the Thioguinine and ARAC tonight at the house.  Evan seemed to be in good spirits throughout and was a typical ball of energy when he got home.  The ARAC has a cumulative effect and we've been warned that Evan may start feeling poorly later in the week.

Coloring a book to pass the time.

     The Oncology team was able to answer a few questions for us regarding this phase.  Unfortunately it looks like Evan's hair will most likely fall back out due to these meds.  He didn't seem too concerned about it though since he sees that it will grow back in time.  We also discovered that his nadir will fall sometime in mid-January (10 - 14 days from now).  Even though he has the remnants of a cold, the staff seemed very comfortable with where he is health-wise and had no worries with moving forward with DI2.
     Following this phase, which lasts 14 days, his counts will be checked at the 21 and 28 day marks.  Assuming his counts are within expected ranges we'll begin Interim Maintenance on January 31st.  The doctor on staff today also reminded us that if Evan's hemoglobin counts get too low he'll need a blood transfusion.  This wouldn't surprise me too much since his hemoglobin numbers have always been traditionally lower than his other counts.

Working with some props at the clinic.

     On a positive note it looks like we'll be able to stop the Lovenox shots on January 12th.  Although his clot hasn't completely cleared out, apparently it's normal to conclude these sort of treatments after 6 months.  During his last MRI the clot had reduced in size, but was still there.  If/when Evan gets his port re-installed we may need to consider blood thinners again, but for the time being the medical team feels comfortable that the clot is not a risk to Evan's health.
     I don't plan on writing any more updates for the next week unless Evan has some adverse effects worth mentioning.  Evan next meets with ID on Jan. 10th, with another chemo session set for Wednesday.  He'll continue PT on Fridays, possibly increasing it back to two days a week.  With any luck the blog will remain silent until next week.

Playing Battleship with Mama during his infusion.

Day 199 - Happy New Year and FAQ #2

     Happy New Year everyone!  2016 has been a rough year and I'm happy to see it go.  2017 will no doubt have its share of surprises too, but we'll deal with each situation as it arises.  Last night the family and I celebrated the New Year at the house with pizza, punch, fireworks and games.  The kids had a blast with the sparklers and watching the fireworks show in the back yard.  Luckily the rain held off long enough for us to get them all shot off.  We put Nolan down at 7:30 and Evan to bed at 9:30, but got them both up for midnight kisses.  We let Evan partake in the midnight countdown and a toast with sparkling cider.

Showing off his Power Rangers ring.

     The second half of Delayed Intensification begins Tuesday with a six hour chemo session at the clinic, along with four days of shots here at the house.  There are daily oral meds that he'll begin as well.  There is still the outstanding question if our insurance will cover the shots to be taken home or if we'll need to go back to the hospital every few days to pick up new syringes.  Our primary doctor has warned us of the very real possibility of Evan being hospitalized for stretches during this treatment.  Evan's hair has really started to grow back, but I'm interested to see if these medications will also cause hair loss or not.  I'm hoping there isn't much excitement for us over the next 30 days.

The Pruitt boys getting ready for fireworks.

     Both kids and Cristy are sick right now.  I'm getting over some sort of a sinus congestion or a cold myself, but it looks like I'm at the tail end.  Because Evan already gets two different types of antibiotics if it's bacterial in nature his cold is likely being eliminated by medicine.  His blood counts are still strong right now too which doesn't hurt.  With any luck we'll all clear this funk before Evan's counts drop.  Now let's move on to FAQ #2.  If you missed the first FAQ here is the link.

Happy New Year!

How is Evan?
As of January 1st, 2017 Evan is doing well, all things considered.  The bone in his ankle hasn't quite healed yet, which is preventing him from walking.  That said, he does tremendously during PT sessions and hasn't complained about pain or discomfort since the 2nd surgery.  His appetite has shriveled up again, but we have the feeding tube to help keep his weight at an acceptable threshold.  His infections appear to have dissipated and he's not showing any symptoms of new infections.

Why isn't Evan walking yet?
This is a much trickier question to answer.  The bone infection that Evan had originally was fairly far along.  It most likely came about during Induction when his blood counts took their first hit.  After his first surgery things appeared to be progressing, however Evan's Keflex (antibiotic) prescription ended and the doctors believe this allowed the remnants of the infection to flare back up.  Infectious Disease learns more about Evan daily and needless to say we'll be on Keflex for the foreseeable future.  We just need to try and remain patient and allow his bone more time to heal.

Warming up with sparklers.

How are you holding up financially?
Cristy and I are doing fine at the moment.  My primary insurance covers the majority of our expenses and Medicaid covers the remainder.  With 2017 being a new year my max out of pocket costs will reset, but we've prepared for it.  We're extremely fortunate that finances is one thing we haven't had to fret over much when you consider everything going on.

Why does Evan get so many infections?
This is another question that the doctors are still trying to answer.  It's true that cancer patients are more susceptible to infections due to low blood counts, but in Evan's case he seems to have problems even when his counts are well above acceptable ranges.  The Oncology team has sent blood samples over to the Immunology team and we're awaiting consultation from them on markers that stand out.  There is a belief by some on the medical team that Evan's immune system is not operating as efficiently as it should.

Candid photo during the fireworks show.

How much longer is Evan's cancer treatment?
Until we hear otherwise I'm going on the assumption that it's still another 30 months.  The bridge chemo that was necessary to allow Evan more time to heal may have impacted our end date slightly.  The Oncology teams in both Scottish Rite and Egleston all know Evan's situation and they meet about him regularly to discuss treatment options.  Needless to say Evan's schedule has been tailored and his needs have caused the doctors to refer to global case studies and clinical trials to gather more information.

Oohs and aahs were heard from the peanut gallery.

What does a typical day look like?
I get asked this occasionally, although maybe not verbatim.  Our day starts with 8:00 a.m. medications, these always include Voriconazole, Keflex, Periactin, Zantac, Zofran and Lovenox shot.  On weekends we also have Bactrim to administer.  Obviously his chemotherapy drugs vary so it could also include us giving these pills or shots at this time.  We also use this time to flush and clean his PICC lines.  After an hour Evan is allowed to eat so we'll prepare breakfast and usually have to make it with as many calories as possible.  Again, depending on what sort of chemo drugs he's on we may or may not have to provide those.  He receives two doses of Periactin and a dose of Keflex in the middle of the day. We eat dinner from 6:00 - 7:00, giving him an hour before getting his next round of drugs/cleanings at 8:00 p.m.  At night Cristy starts his feeding bag, providing Pediasure, starting between 9:00 and 11:00 depending on the medications he's taking at that time. Our goal is to get 1500 calories in him, so the number of cans at night may vary.

Peek-a-boo!

Is Evan going to school?
The Cobb County school system arranges for a teacher to come to our house once a week to teach Evan and keep him up to speed on the curriculum his classmates are following.  Our plan had been to let Evan start attending school after the new year; however, his chemo schedule being pushed back and his lack of mobility have hampered this plan.  We'll need to see how the next few weeks go, consult with his physicians and make a decision in the near future.