Day 289 - Music to our ears

     Yesterday evening Evan and the Hayes Kindergarten classes put on a musical show of popular nursery rhymes.  It was very entertaining and great seeing how excited all the kids were during the performance.  It's memories like this that make parenting so special.  During the show I was beaming with pride for all sorts of reasons and based on conversations Cristy had with the doctors yesterday I'm hopeful that I'll get to attend many more concerts in the future.

Evan and Nolan post concert.

     Thursday morning Cristy took Evan to school as is our normal routine.  She picked him up a little early so that he could get his final dose of chemotherapy for Interim Maintenance.  This being his last session before the Maintenance phase, I had all sorts of questions, but at the root was really just one thought:  Have all these treatments, tests and trials been worth it?  Obviously no doctor can answer that with a yes or no; however, Evan's primary oncologist gave Cristy a response that helped put my mind at ease.  I'm sure he's well versed in its delivery over his many years in this field of medicine.  To paraphrase, he said that after the Induction phase the leukemia cells were below the detectable range, and that if we keep up with the rest of his treatment there is less than a 10% chance of relapse.  Following his appointment Cristy and Evan braved Atlanta rush hour to get him back to the school in time for his concert.

Evan got Honor Roll for the past 9 weeks!

     I'll get some updated photos of Evan's body in the next week or so, but his arm, chest and surgical wounds all look much better.  One of the photos below shows the new port setup that Evan will use from here on out during his chemotherapy sessions.  I talked to Evan about it yesterday and today.  While he was apprehensive about the needle entry into the port, he was relieved that with the numbing cream it didn't hurt.  For future appointments I hope he feels much less anxiety.

Port entry on his right side.

     All of his blood counts were back to a "normal" range.  I used the quotes because during the previous blood draw his WBC counts were considered a bit high.  Infection?  Reaction to chemo or some other drug?  Tough to say for sure, but I'm feeling better that his overall counts are returning to more normal ranges.  His ANC was a 3.2, WBC around 5.7K, Hemoglobin was 10.3 and his Platelets were 303.

Movie night.  This evening we watched Moana.

     On April 23rd the family and I are going to take part in the Cure 23rd Annual Lauren's Run 5K.  Cure is one of the charities near and dear to our hearts.  While simply running in the 5K would be enough, they hold a picnic afterwards for families and participants.  I was told by one of the Cure folks that many of the kids (and some parents) dress up as super heroes for the run.  I guess I'll need to break out my old Batman costume to show my support and satisfy my inner child.  Evan isn't quite ready to run a 5K, but Cristy signed him up for the Tot Trot.  I'll let Evan walk as much as he chooses and then likely toss him in the stroller for the remainder.  For anyone interested in joining us I've provided the link below.

23rd Annual Lauren's Run 5K

  Cristy and I didn't setup a team for this, although we'll likely do one next year.  We had shirts made (see below).  If anyone would like a shirt let me or Cristy know and we can order you one.

#PruittCanDoIt

     Thanks as always for reading and following along with Evan's adventure.  I have some ideas for future blogs to help capture the highs and lows of the last 10 months.  Despite many of the setbacks we've had I'm happy to see Evan doing as well as he is.  Mobility is still a challenge, but I'm confident that can be addressed with more exercise.  Maintenance should see his blood counts balance out enabling him to better fight infections as they present themselves.
   

Day 283 - Celebrating Easter a little early

     We are two days removed from Evan's surgery and right now the only noticeable side effect is a rash on his stomach and arm.  They could be from two different things, but without a biopsy no one could say for sure.  Evan hasn't reported any discomfort or pain.  He continues to run around the house like any amped up five year old would.  We called the on-call doctor this morning about the rash and he indicated we should just keep a close eye on it and call back if it worsened.

Rash on stomach.  Likely from the Betadine.

Rash and irritation on right arm.  2 of 3 incisions from port install.

Right torso.

     This morning we played around the house for a while and then cleaned up and headed to the Camp Sunshine Easter Party.  They had snacks, music, games for the kids, face painting, a magician, but most importantly an Easter egg hunt.  The weather turned out really nice and allowed us to make the most out of it.  In the pictures you'll see we were all over the place.  It's always great seeing all the kids, not just mine, having such a great time.  The volunteers and staff go out of their way to make sure the kids have a memorable experience.

     Originally slated for chemo on Friday, it appears there may be a conflict.  We'll find out early next week if they want to see Evan earlier or later in order to complete Interim Maintenance.  I'm anxious to see how his body responds in the coming weeks.  There's no doubt the Methotrexate is causing him some issues.  His appetite has shriveled up again and he's beginning to lose weight.  I'm optimistic that once he's done with the harsher chemo his body can sufficiently defend itself.

     Closing out with some photos from today.  The boys had a great time and I have no doubt they'll sleep well tonight.

Chilling with EB.

Chalk art.  Notice me and Nolan in the background.

Nothing says fun like pollen and bubbles.

Finishing our egg and basket.

Evan was chosen as a volunteer for the magician.

A couple of moms helping me get Evan around (Cristy was chasing Nolan).

Day 281 - Evan 2.0

     Evan is back home from this morning's surgery with minor soreness, but otherwise doing fine.  Last night during bedtime I asked Evan if he was nervous at all and he said no, in fact he was looking forward to get it over with so he could play in the water again.  It's amazing how mentally strong he has been throughout this whole ordeal.

Pre-OP.

     Cristy and Evan got to the hospital around 7:00 to get prepped and began waiting on the surgery team to call them back.  Around 9:00 he was wheeled back and Cristy got the all-clear call around 10:00.  While under the doctors pulled his PICC line, installed the port and performed another LP (Lumbar puncture / spinal tap) of Methotrexate.  After sitting in the recovery room for a short time he was reunited with Cristy in the Day Surgery area.  Once the anesthesia wore off he began to experience soreness and had trouble breathing because of the placement of the port.  All expected considering where this one was placed.

Post-Op.

     Unlike his last port which was installed around his left collarbone the surgeon put this one on his right side, close to his rib cage, on his torso but under the arm.  I think the pressure on his lung from this placement took him some getting used to.  Doctors wanted to make sure he could hold down fluid before discharging him so he had to drink some apple juice and down a popsicle.  Cristy said he eventually threw it up once she got close to the neighborhood, but he's been holding everything else down since he's been home.

Heading home.

     I had a surprise of cookies and a new video game he's been wanting upon walking in and this seems to have made him forget about the pain/discomfort.  In fact, he wanted to rough house with his brother just a little bit ago, but Cristy and I told him to use some caution for the time being.  Sponge baths are on the the agenda for the next couple of days.  We've been given the OK to start back school tomorrow, but out of caution we'll probably keep him home to allow his surgical sites a bit more time to heal.
     What does the future hold?  Well, we have another chemo treatment next week.  Obviously Cristy and I will be keeping a close eye on his skin color, surgical wounds, mobility and eventually blood counts once they're drawn again.  During his next appointment I'll most likely attend so I can ask questions and get a better idea of what a day in the life of the Pruitts will look like for the next 3 months, 6 months, 12 months, etc.  I'm really happy that the PICC line is gone.  This greatly reduces his chance of bacterial infection and leaves Cristy and I with only two mandatory drugs to administer each day.
     When the weather warms up we'll do a large scale water gun battle in the back yard.  Evan has been looking forward to getting his whole body wet again and I can think of no better way to celebrate the occasion!  Hoping for a quiet weekend full of rest and healing.

     Closing out with a song Evan really likes singing from the movie Trolls.  Even though he rarely tells us when he's in pain or nervous I do find him singing this song prior to days at the hospital so I think it's fair to say he has some idea of what's going on.  Enjoy.

Day 280 - Surgery scheduled for tomorrow morning

     This is more of a place holder blog entry and won't have a tremendous amount of medical content.  Evan received his next dose of chemo earlier this morning.  Everything went as expected and Evan is back home recovering.  Our oncology doctor shared the remainder of the plan and he only has one more session of chemo in this round and it's tentatively scheduled for next Thursday or Friday.  Evan's blood counts looked good during the blood draw on Monday.  ANC was in the 7.x range which is perfectly healthy.

Picture from today's chemo session.

     The plan is for Evan to have an outpatient surgery, however he sometimes reacts to the anesthesia with a fever so I'm mentally preparing myself for a scenario in which he's kept overnight for observation.  Once the port is in Evan will get his PICC line removed and covered.  We're going to check with the surgeons tomorrow to see if they have any concerns with Evan returning to school next week.

     I'll close today's blog with some photos taken over the last week.  Cristy took the boys to Touch-A-Truck in downtown Kennesaw on Saturday and for Easter Bunny photos yesterday.  Will provide another update tomorrow evening.

Happy Leprechauns!

Book 'em Dano.

More from Touch-A-Truck.

Day 273 - Inching closer to Maintenance

     It's been a fairly busy week since our last update.  Evan completed chemotherapy on Friday, along with receiving a dose of IVIG.  Cristy had a chance to talk to the doctors and I'm happy to report Evan will be getting his new port installed on March 23rd.  During this time they'll pull the PICC line and seal him up, as well as a spinal tap.  The blood test from Friday morning yielded an even higher ANC than Wednesday.  We're not sure, but hopeful it's not related to infections in his body.

Eating pudding like his little brother.

     The oncologist on duty Friday noticed Evan's red skin and had a theory as to the cause.  He believed the Bactrim may have been conflicting with the Methotrexate.  To that end we were asked to discontinue it for the time being.  It's probably too early to say if that was the culprit or not.  We've seen rashes/irritation around his PICC site and on his legs.  Need to wait and see if they improve or not.  In the meantime we were given a steroid cream to help alleviate the symptoms.

Spending time with the full Pruitt family for a belated b-day for Holly.

     Evan is bouncing back from a cold that got worse over the weekend.  I'm really pleased that his body seemed to handle it without issue.  No fevers.  No vomiting.  More or less had the same energy and motor as usual.  Any time he gets a cut or sick I always try to brace myself for the worst.  Since he's not hitting his typical nadir it looks like his body has a chance to fight back.  Speaking of which, Evan has an appointment on April 14th to perform an MRI on his back, hip and legs to check for any infections.  We're trying to be realistic that it's possible he still has infections, but hoping to avoid surgery.

Candid shot of everyone eating.

     Today Evan met with the orthopedic surgeon to confirm how he's healing up since his last leg surgery.  He was very pleased with Evan's appearance, and commented this was the best he's ever seen Evan. We need to wait until his MRI, then we'll be back to follow-up with the orthopedic surgeon again.

     Evan's movements seem OK; however, they should improve as his muscles strengthen.  He has not reported any discomfort to us and his therapist seems very encouraged by how he's getting around.  Being in school and starting to play with kids again has definitely given him motivation to stay upright.

The boys with cousin Lily.

Jason, Katie and Camdyn came by to visit.  The boys were excited.

   

Day 267 - Slowly finding ourselves again

     We've been making small strides lately, but things are ever so slowly getting back to normal for Evan and to a lesser degree the entire family.  There has been the reduction in medicines, improved eating (although still not ideal), returning to school and finally an immune system healthy enough to begin going back out into public.  Over the last week we've had the chance to go out to dinner as a family for the first time in months.  Cristy took Nolan and him to Chuck E. Cheese today and I have plans to take the boys to the movies this weekend.  This might not seem like much to most, but to us it's a breath of fresh air.  It gives us something to look forward to and sometimes that's all we need to keep pushing forward.

Enjoying a dinner on the town.

     This morning Cristy got a call back from the hospital with Evan's blood counts from his Wednesday check-up.  She was on the go and wasn't able to write all the numbers down, but the one figure she remembered was he has a 9.5 ANC.  This is a very healthy value, especially considering he's been through a few rounds of chemo as part of Interim Maintenance.  During Evan's session tomorrow Cristy is going to inquire if this number is elevated due to a hyper-active bone marrow or if it's possibly related to on-going infections.

Playing at Chuck E Cheese with Cristy and his brother.

     Evan's appointment yesterday with the ID doctor didn't yield much useful information.  We were asked to slightly modify the timing of his Keflex medications.  Nothing ground breaking mind you, but she feels we might get better coverage.  Evan's skin is still more red than I'd care for and we've noticed various sores.  This is another topic Cristy plans to discuss with the medical team tomorrow.  We're meeting with the orthopedic surgeon next Wednesday and there is an MRI that still needs to be scheduled to re-check his leg, hip and back for infections.

Working with a standing bicycle during PT.

     Tomorrow Evan will receive what I presume to be an increased dosage of Methotrexate, IVIG and Vincristine.  We'll monitor him closely over the next few days.  Historically he hasn't had many issues with chemotherapy, but he has been napping a bit more lately.  I'll try to get another update posted sometime next week.

Capping the day off with Chuck E.

Evan decided to sneak in one night to crash with daddy.

Day 264 - Gooood....Gooood....

     Another week is in the books since the last blog update and I'm thrilled to report not much has changed.  Evan loved his first week of school and he appears to be on equal footing with his classmates scholastically.  Having been out of a classroom environment for several months I wasn't sure what to expect.  As his teacher gets more time with him we can speak with her to find out what areas we should focus on (math, reading, etc.).

Eating is still a challenge, but we try to make it fun.

     Last Monday Evan received another dose of Methotrexate and since he's started back up on this drug we've noticed skin discoloration and sores on his mouth.  Not that unexpected.  Methotrexate works by slowing cell growth.  Great for cancer as you can imagine, but your mouth and skin also regenerate cells as a repair function and this is significantly impacted.  In the meantime Cristy and I will need to be vigilant with SPF lotion and knock-off ChapStick.  We can't use the real thing because the oils in ChapStick can trap bacteria leading to a whole other set of problems.

     Evan has an appointment with the ID team scheduled for Wednesday and chemotherapy on Friday.  He'll need a blood draw at some point, however Cristy is going to see about consolidating this effort into his appointment on Wednesday.  At this point it looks like the port will be installed at the end of Interim Maintenance.  

Playing a little Marble Run one morning.

     Cristy has been working with Make-A-Wish on dates for Evan's trip to Orlando.  They tossed out several options, but I think we're leaning towards early summer.  This will allow Evan to complete Interim Maintenance, finish school and heal up from his port surgery.  He's looking forward to being able to play in the water outside again.

     Evan continues to make strides in his mobility.  He almost never complains of fatigue or pain so really it's just a matter of being patient and allowing the muscles to grow stronger.  Yesterday our friend Adrienne, who was a neighbor of ours in Atlanta, came up to visit.  Evan was trying hard to play with her and this motivated him greatly.  It was great catching up and we're thankful she made the trip up to visit.  I'm certain school provides the same sort of stimulation.

Sharing a toy...which is a rare sight.

     I'll likely post another blog entry this week to share his blood counts prior to the next round of chemo.  It's likely his numbers will have dipped again, but to what degree I couldn't say.  I leave you with a picture of Cristy imitating Emperor Palpatine to brighten your day.

Cristy and the boys had an Emperor-off.  I have all their videos!