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.

Day 132 - In and Out

     Hi, Cristy here. Blaine has asked me to update the blog tonight, so all the information would be coming from the horse's mouth. Sorry for being silent on the blog so far, but I didn't want to mess up a good thing he had going.

     Today Evan and I went to the clinic for Day 1 of Delayed Intensification. It was an early morning, beginning with a spinal tap. While he was sedated, they placed a feeding tube (NG tube) in through his nose to his stomach. After waking up and the sleepy medicines started to wear off, Evan started complaining of a sore throat and was trying to get used to the feeling of the tube in the back of his throat. Once he could sit up he ended up chugging some juice, and unfortunately threw it back up along with the feeding tube. So, they pulled it out and decided to try again later.

Evan was less than happy about his new feeding tube.

 
     Evan then received two IV chemo meds for today: Vincristine and DOXOrubicin. One of the less common side effects of DOXOrubicin is heart damage. As his ECHO yesterday showed some changes in his heart since his last test in July, the doctor also ordered another medication, Zinecard, to be administered immediately before the DOXOrubicin in an effort to help protect his heart. Evan's treatment plan calls for relatively low doses of the DOXOrubicin, and only three times, so she was confident the drug would not have detrimental effects on him. He is scheduled to have another ECHO done again next Thursday, and the doctor said she is expecting his numbers to be higher.

Enjoying some play time while waiting for his medications to infuse. 

     Once his meds were done, and he had some Ativan to settle his stomach, they tried to reinsert the feeding tube again. Obviously, he was awake this time. They had the tube almost in, but he gagged and threw up again. They tried one more time, and it went in with no problems. One of the nurses said she's been working there for 14 years, and he did the best with that of anyone she's ever seen. He was quiet most of the rest of the day, as he was again trying to get used to the feeling of the tube in his throat. We were able to get a little dinner into him, but then it came back up, of course along with the tube again. The equipment to use the feeding tube was not delivered tonight, so I'm hoping the home health nurse that comes tomorrow with the equipment will be able to put another tube in place and we'll try again.

     Evan also started taking steroids again tonight. Bring on the 'roid rage! I'll gladly take the rages, as long as they come with an increased appetite. I am dreading the next two months, but have to keep reminding myself to just take it one day at a time. C'mon Christmas! Day 1 down, 55 to go.

Day 131 - Time for our next round

     Today Cristy and Evan went to the clinic to have an ECHO done and meet with a doctor from the Infectious Disease team.  This is all ahead of Evan's beginning of Delayed Intensification tomorrow.  After talking with Cristy this afternoon I'm less than thrilled with some of the findings.

Camping with Mommy on Friday night.

     We'll start with the ID meeting.  The doctor wanted to review Evan's Voriconazole levels to make sure they were still therapeutic; they're not.  At this time the medical team isn't sure why he went from ~1.0 to 0.4 during his last check.  At that level there is increased risk of the fungal infections to return.  The short term plan is to continue with our current dosing level and to check him again next week.
     The cyst removals that Evan had done a couple of weeks ago hasn't yielded any culture results.  This is a good sign meaning the cells removed were already killed by antibiotics or his immune system.  The surgeon feels that future surgeries probably aren't necessary assuming we keep his Voriconazole levels and blood counts within effective ranges.
     Evan's ECHO results also found something a bit concerning.  During the test his heart was showing an inefficiency in evacuating circulated blood.  As is typically the case, no known root cause.  If future tests result in low values the doctors will be forced to prescribe medication.  It also showed one of two things: 1) muscles in a region that they didn't expect or 2) an infection in one of his chambers.  Surgery wasn't discussed since he's already on various drugs to address foreign bodies in his blood, however ECHOs will now be scheduled on an increased frequency.

ECHO testing on Evan.

     I do have some good news.  His blood counts were all very strong, particularly his ANC.  Platelets, Hemoglobin, RBCs and WBCs all looked strong.  At least he begins his next round in a better than average position.
     Physical therapy is virtually at a stand still.  Evan's weight has increased from 18.35 to 19.3.  This was good to see, but it's not without Cristy and I breaking out every parenting technique to motivate (force) him to eat.  I know the tube into his stomach isn't ideal, however I'm not opposed to it if it helps him get back to his pre-cancer weight.  Eventually Evan's PT schedule will go from two days a week to one.  I'm hoping for some sort of "physical epiphany" soon.
     Friday October 21st was Cape Day at CHoA and Hayes Elementary.  To celebrate Evan and Nolan both got capes and they wore them in honor of the super heroes fighting cancer every day.  Cristy sent me a photo from Hayes with some of the teachers and administration supporting Evan and another student battling cancer, as well as all the kids at CHoA.  It's great to see people unite together for a common cause.

Keep fighting!

     In closing today, the family and I went to Camp Sunshine on Sunday for a Fall Festival.  The families got to dress up and play carnival style games.  Food and drinks were provided and the weather couldn't have been better.  We had a great time and really enjoyed seeing the smiles on all the kids' faces in attendance.

Eating custom decorated cookies.

Can you guess who those handsome boys are?

Day 124 - Intensification start date confirmed

     This morning Evan went to the clinic to have his blood counts checked ahead of his most difficult phase yet, Delayed Intensification.  All counts looked average to good and the oncology team felt comfortable moving forward on Wednesday October 26th.  Throughout this course there will be daily oral medications, spinal taps, intravenous drugs and injections at various times and frequencies.  Cristy and I know there will be tougher days ahead, but we'll tackle it one day at a time and keep pushing each other forward together.

A little fun at the clinic.

     The medical team doesn't have a root cause of the fever from Sunday morning yet.  Nothing has cultured from the blood drawn and Evan hasn't shown any other indications of a root cause.  No coughing, no sneezing and only an occasional runny nose.  The side effects of most of his medications pretty much cover the gambit of symptoms, so it could be that, bacterial, fungal or viral.  It would only be a guess at this point.

Snuggling on the couch.

     The oncology doctor that Cristy and Evan met with today was concerned with the amount of weight Evan has lost overall.  His vomiting has increased since we added Keflex to his daily cocktail.  So whereas it was a chore to gain weight before, now it is seemingly impossible.  The doctor suggested that we have a tube run down his nose to his stomach for IV feeding when he comes in for chemotherapy next week.  This would stay in indefinitely.  The logic being his body will need the extra calories for the battle ahead and it takes some of the burden and stress off of Cristy and I with our efforts of forcing calories into him.

Still has his happy spirit despite the many challenges faced.

     Physical therapy is on-going with no significant updates to report.  We'll stay the course with the exercise regimen that has been approved and hope he turns the corner soon.  Not much else to add at this time.  I'll likely put something up next week ahead of his appointment and a couple of days afterwards.

Day 122 - Can't get enough of Children's Healthcare

     Because I haven't written in the blog since last Monday there have been quite a few developments.  I'll begin with the most devastating and impacting.  On Tuesday evening Cristy's mom lost her lengthy battle with cancer.  Although she had been sick for a while it was still a shock to the system and one that we had to absorb and figure out how best to help the family.  Cristy flew up to provide help for her brother Thursday night and had to come back earlier than expected this afternoon.  More on that later.  While the world she leaves behind is a little more boring, we take solace in that fact she's no longer in pain and can rest in peace.

Eating junk and playing video games.  Does it get any better?

     With Cristy out of town and me ill prepared to handle two kids, one with special needs, and work remote on Friday, I asked my parents if they could take Nolan off my hands for a few days.  They were happy to oblige and he's back at home as of this morning; no doubt heavier from the multiple bowls of ice cream he consumed.  Thanks again to my family for assisting us at a difficult time.

     Friday morning Evan and I went to physical therapy and I felt like he was doing really well during the entire session.  To keep the momentum going Cristy and I bought him the Wii Fit balance board and game.  It's a fun way to work on balance and burn calories and is used by the CHoA therapists.  The therapist felt that Evan has lost a significant amount of muscle mass in his right thigh and gave us some exercises to try to strengthen it.  Until his next session that will be my primary focus as it feels like he's almost ready to turn the corner.

     Evan's appetite has been waning as of late, so in an effort to improve it I took him grocery shopping Saturday morning and let him pick out his meals for the weekend.  We also picked up some Ex-lax to get things moving if you know what I mean.  The day started off slow with Evan showing a reluctance to eat and exercise, but that all changed when my friend Mike and his family stopped by.  Evan immediately switched into his party mode (I wonder where he gets that from) and showed a much stronger desire to exercise, walk and eat.  Unfortunately the day wasn't a complete success like I was hoping.

     On Saturday night / Sunday morning Evan developed a temperature of 102.  He was sleeping in the bed with me and rolled over placing his head on me.  I knew instantly that he was running a fever, but got the thermometer to confirm.  After a call to the CHoA on-call they asked me to come in as a precaution.  We pulled in around 2:30 and they were already awaiting our arrival.  If there is a silver lining to this unexpected visit it would be that his vitals, aside from temp, were all normal.  His heart rate was slightly elevated, but with a fever this is expected.  The medical team drew some blood and administered a dose of the antibiotic Zosyn.  Because he didn't appear in distress we were discharged around 5:00, but we're awaiting any results from the blood cultures.  Cristy was concerned with this and changed her flight in order to get back home.  As I write this at 4:00 on Sunday the Pruitt clan of Kennesaw is back at full strength.

Awaiting word from the doctor on next steps.

     Today has been very challenging.  Evan has been more nauseous than normal and has vomited any food that I've attempted to feed him.  Until more data suggests otherwise I'm going to attribute it to the Zosyn.  He's still resting and we'll see how he feels afterwards.  The Ex-lax also seems to have done the trick so it could be a hangover from that.  This is purely opinion on my part, but it seems anytime he goes to the hospital that he becomes very resistant to our exercises and treatments.  It almost seems like a mental block on his part where he reverts back to the sick patient.  Cristy and I hope that overtime these trips become more routine and he's able to quickly adapt to home life and the routines that we have developed.

Mr. Chatty talking with the nurses.

     So what is next?  Evan has a blood check appointment on Tuesday, followed by what I assume would be the official scheduling of his next round of chemo.  With flu season upon us I'm a bit concerned so if I go into hermit mode don't be surprised.  For my friends I may request a clean bill of health from a doctor before you can see us.  I'm kidding of course...or am I?

Day 116 - Approaching challenges

     This morning Evan went to the clinic for his last session of chemotherapy for this round.  The medical team made some last minute adjustments to his dosages because of the difficulty walking that he's still experiencing.  The Vincristine causes foot drop and this is impacting his recovery.  In addition to that we learned the schedule for the next round, Delayed Intensification.

These early morning appointments are for the birds

     In short, chemotherapy is designed to wipe out the cancer cells and eliminate all cells in his bone marrow with the intent of it re-learning and creating healthy cells again.  During the first phase, Induction, the goal is to kill enough cancer cells in hopes of putting the patient into remission.  The next two subsequent phases are to "reset" the bone marrow and don't actually kill newly formed cancer cells.  If I had to describe our new phase, Delayed Intensification, it would be a collapsing of the first three phases into 60 days.
     Evan will go back on steroids again, but not for the same duration that he had to before.  He'll follow that with seven other drugs administered at different dosages and frequencies than he's had before.  This phase is meant to eradicate any remaining dormant cells, wherever they may hide.  There will be two spinal taps to ensure there aren't any cancer cells hiding in his spinal fluid.  Once DI begins Evan's body will be extremely compromised so Cristy and I will need to be very diligent with his care.  The actual start date hasn't been confirmed, as it will be dictated by his blood counts, but 10 - 14 days is a realistic expectation.

Working on calories in the form of frozen yogurt

      The blood counts from today looked promising and it shows that his body is creating cells like it should.  We're also fortunate that the PICC occlusion worked itself out over the weekend.  This gives us two working ports for the near future.
     Over the next 60 days I'll share specifics about Evan's plan, but in the meantime I need to do reading on the new drugs being introduced.  There will be different side effects for us to contend with and we'll need to try and help alleviate symptoms as they occur.  I have a feeling we're in for some unique challenges, but we're prepared to confront them together.

Day 115 - Say Cheese!

     It's been a fairly quiet weekend for Evan on the healthcare front.  He did get a slight fever of 100.5 last night, but it subsided within 30 minutes.  Fevers can be caused by so many sources that I can't even begin to speculate what might have caused it.  Lucky for us it dissipated before having to take him to the ER.

One of these days I'll teach these kids how to eat ice cream

     Tomorrow morning Evan has a chemo session scheduled, along with a blood draw to determine if his anti-fungals are therapeutic and more troubleshooting of his PICC line.  Cristy and I are hopeful that the Oncology team will share the next phase of chemo.  I read through Evan's release papers from last week and the medical team still has him listed as in remission.  Although no formal tests have been performed, they're likely able to determine this based on his blood counts overall.
     I suspect Evan will feel a little bit out of sorts this week and I wouldn't be surprised to see the red skin patches come back.  PT is on-going this week and we're working hard to get Evan's muscle strength and balance back.

TV time in the basement

     Today Camp Sunshine hosted a photo session for families battling cancer at their facility in Decatur.  This was all free of charge which I am immensely grateful for.  It's been tough for Cristy and I to find time for family photos with all the appointments, commitments and medications we have going on.  I think I've mentioned it before, but if you want to donate to a worthy cause then Camp Sunshine ranks pretty high on my list.  We got a chance to view a few of the photos and I'm pleased to announce that all four of us had our eyes open in the pictures.  The Camp Sunshine coordinator mentioned that they'd have the USB drive sent to us by November 1st with the digital images.

Playing board games at the Camp Sunshine House

     The family and I have been thinking about Cristy's mom over the last few days.  Her health is declining as she's also been battling cancer, along with other various ailments.  We're praying for peace and comfort for her and family during this difficult time.
   
     Later tomorrow afternoon I'll update the blog with the latest.

Day 113 - New drugs and PICC issues

     The family returned to full force last night around 9:00, as we all returned to being under one roof.  After giving Evan his latest doses of medicine we topped him off with a late snack and got him to bed.  This morning we discovered that one of his PICC lines occluded (clogged) preventing us from administering drugs on one of the ports.  Cristy placed a call with the nursing team this morning for guidance and was asked to come to the clinic for assistance.

Waiting in the bathroom to scare nurse Jackie.

     Evan received a CT scan yesterday afternoon and the doctors needed time to review and put together a plan of action.  His organs did show larger growths on his spleen and liver, however the doctors feel confident these are the same kind of pus growths that are cropping up on his skin.  The revised schedule now includes an IV drip of Ambisome (anti-fungal) once a day, along with three times a day Cephalexin (antibiotic).  We also have been asked to increase his daily dosages of Voriconazole as the team discovered his dosages were not enough to sufficiently suppress his fungal levels.

Passing the time with some arts and crafts.

     A nurse is scheduled to come to the house later to show us how to administer the IV drip of Ambisome.  On the plus side a test will be conducted Monday to verify Evan's Voriconazole levels.  If bumping him from 9 mL daily to 11 mL puts him at a therapeutic level then we'll pull the Ambisome.  Fingers crossed that this change eliminates the fungi in Evan's body.
     Monday Evan will receive his last session of chemotherapy for this round.  As has been the case for the last few visits the dosage amounts will be increased for both drugs.  I'd expect Evan to experience the same symptoms he has lately.  On Monday we should also be able to find out more about his next round of chemotherapy.  The doctors have told us in the past that once we get into Maintenance things should normalize a bit.  For Evan's sake I hope they're right.

Play time!

     Looking forward to a quiet weekend.  With any luck Evan will get his calories in, work on his balance and spend some quality time with the family.

Day 111 - Avoided surgery....for now

     As the title indicates no further surgeries are imminent.  Evan and I headed down for a MRI of his ankle this morning around 6:00 a.m.  The tentative plan had been to operate this afternoon if the MRI supported the CT scan findings, which showed pockets of fluid at the site of entry for one of his previous surgeries.  The orthopedic team didn't find anything there, however they found a growth on his right heel.  At this time they feel this growth is small enough to avoid surgery and are satisfied with how his foot and ankle look.  Another CT scan is being scheduled for tomorrow to check for growths on his organs and stomach.

NPO has been lifted, time to eat!

     You may be asking yourself "Why are there so many growths?".  Or, "Didn't you guys go in originally because of cysts cropping up on his arms?".  Both very valid questions.  From talking to the ID and Oncology teams over the past few days they believe all of these growths point to a different problem.  The feeling right now is that Evan's immune system isn't ready for prime time yet and the Voriconazole doses we administer twice daily aren't cutting it.  Although test results haven't come back yet, his anti-fungal levels are being re-checked.  No cultures have formed as of yet so this is a very good sign that we're not dealing with bacteria.

Black Panther is on the case.

     I'm hopeful that they'll release us tomorrow.  If we're talking purely about dosage concerns they should have enough samples to do this while we await results from the house.  Evan's next chemo session is scheduled for next Monday and I wouldn't be surprised to see them add a couple more tests.  At that time all of his dosages will be at their highest yet as they continue to test his bone marrow's ability to bounce back and create healthy cells.  The next chemo phase hasn't been shared with us yet, however we should get a 10 - 14 day break for his body to recover.  Cristy and I are anxiously/cautiously awaiting delayed intensification, which should be coming soon.

Halloween fun in The Zone.

     Since we've basically been in wait and see mode Evan and Cristy got a chance to head down to The Zone to do some fun stuff today.  As this pictures on this blog entry show he's been enjoying himself much more during this stay at CHoA.  I haven't posted a song in a while and thought this one would be fitting considering all this talk about feet.  It's called Club Foot by Kasabian.

Day 110 - Awaiting blood results

     Day 2 at the hospital is in full swing, but we're still awaiting answers.  No cultures have grown from the blood or mucus drawn yesterday and additional blood was drawn this morning from Evan's PICC line.  As a preventative measure Ambisome (anti-fungal) and Cefazolin are being administered until more information is known.  The redness under his eyes and various sores over his body don't seem quite as pronounced today, so hopefully either the medications are helping or his body has filtered out the Methotrexate and Vincristine.

Getting in some reading.

     The orthopedic team has taken a look at the ankle Evan had surgery on and has ordered up an MRI for tomorrow morning.  Based on their findings Evan may need another surgery to remove pockets of fluid or infection which showed up on the ultrasound.  The medical team is also discussing whether to image his entire body to verify that no pockets of infection have formed or increased in size.
     Thus far his vitals have remained stable which is a good sign that we're not looking at a bacterial strain.  Until the cultures show something definitive though we're stuck here waiting.  The next chemo session was scheduled for this week, but the Oncology team that came through this morning felt this was a mistake and are going to push him out until next week.

Ninja time.

     Our Nurse Practitioner has told me that the plan is to get us out of here as soon as possible.  Obviously the MRI will hold the key as to how quickly.  He seems in good spirits, is moving around with the assistance of his walker and isn't showing any signs of a critical issue.

A little jam session on the harmonica.

     Earlier today Evan and Cristy got to go meet some players from the Atlanta Falcons.  My wife not being a huge football fan I wasn't able to ascertain who all they got autographs from.  The only player I know for sure from the pictures was Jake Matthews.  Sadly most people signatures are so difficult to read that it's almost impossible for me to use them as a clue.  In any case, Evan got a kick out of it and mentioned to the players that his daddy likes watching them.  They took time to do arts and crafts with the kids are were very hands on.  My sincere thanks to those who sacrificed their time to spend with all the children today.
     Around lunch time Nolan and I finally made it here.  We all got the chance to go meet retired Navy submariners and talk about the boats, see pictures and learn more about life at sea.  As with the Falcons, I'm very appreciative when anyone takes time out of their schedule to spend with others in more difficult situations.  All the volunteers were very kind and gave the boys hats as souvenirs.  As I write this blog Evan is taking a nap in bed still wearing his hat.  All in all its been a good day, but I'm ready to get back home assuming Evan's body cooperates.  More updates tomorrow.

Playing with the mouse trap.

   

Day 109 - Gathering information - UPDATED as of 10/3 @ 18:27

     Well, it's been a while since we've had a set back, but it was bound to happen.  Evan went to the hospital this morning for consultation and potential surgery.  It turns out the plastic surgeon was ready to perform surgery and finally took Evan back around 11:45.  The surgery was only focused on the cyst in his wrist.  Upon cutting it open the doctor discovered a large amount of pus, which surprised me because of how hard it felt to the touch.  All the tissue collected has been sent off to the lab for testing and cultures.
     We've also noticed red patches forming around his eyes and on his right hand.  Cristy mentioned this to the medical team and they seemed unsure or unwilling to wager a guess at this time as to the root cause.  It seems to have gotten worse since his chemo session on Friday, but that could just be coincidence.  Evan is being admitted today for observation post surgery with no expected time of departure defined yet.  After more than an hour in post-op Evan finally secured a room in the Aflac units.  While we'd prefer to be home I'm sure Evan and Cristy will look forward to catching up with some of the nurses.

Waiting on consultation from the surgeon.

     The Infectious Disease team is taking a closer look today and will likely change his anti-fungal medication or increase his daily dosages.  Keep in mind this was without having seen Evan yet, but based on the symptoms mentioned to them through the hospital's internal notes they think that adding Micafungin or Ambisome could be in order.
     Prior to being discharged back in August the CT scans showed pockets internally of what doctors thought could be more fungus.  The belief then was that the Voriconazole, combined with Evan's improved immune system, would knock out the pockets showing on his various organs.  Since nothing cultured in the lab at that time no one could say for sure.  It's entirely possible that this is round 2 with the fungi.

Watching some TV in pre-op.

     I'll likely post another update later this evening as more information comes in.  I know a few people have been texting me this morning and I wanted to get something out there.  Thanks for the prayers and well wishes.  I'm hoping this is just another bump in the road.

UPDATE
     Cristy has met with the ID team and they're putting together a course of action that will keep Evan in the hospital for the next few days, possibly longer.  Orders are being put in for a series of scans tomorrow.  It's yet to be determined now what area(s) they want to focus on.  In addition to that the doctors are going to add Ambisome to his fungal medications.
     Until the blood cultures come back the plan is to contain what's in place.  Upon review the lead ID doctor was concerned with the growths and wants to confirm it's yeast and not something more dangerous to his health.  The CT scans will also show whether the internal lesions are still there, if they've grown or if more have developed.  I don't even want to speculate on what the worst case scenario looks like, but in an ideal situation they'd see fewer and smaller pockets that could be eliminated with increased dosages.
     On the plus side many of the nurses that cared for Evan in the past have been by to visit and the music therapist brought him and Nolan each a harmonica.  Needless to say I'll have another update tomorrow afternoon, unless something urgent comes up between now and then.  From talking to Cristy it sounds like they're going to sit tight to see what the blood and cyst cultures show.  Nolan and I will be heading down tomorrow to offer our support and tag out Cristy.

Day 108 - No News is Good News

     We'll start off today's blog on a positive note.  Congratulations to George and Christina on their marriage and amazing wedding yesterday.  Cristy and I were honored to be part of it and wish you two nothing but the best for years to come.  My parents came up and watched the boys and niece, which allowed Cristy and my sister to get out of the house for a couple of hours.  Thank you to my wife as well for handling all the household duties solo the past few days so I could focus on being a helpful groomsman for the wedding party.

Working on some lung strengthening exercises.

     Evan completed session 4 of 5 for this round of chemo on Friday.  This trip also included another spinal tap and a flu shot.  His blood work shows strong numbers in all the counts that we care most about (ANC, WBC, RBC, Hemoglobin, Platelets).  This is a good sign that his bone marrow is responding well to the treatment plan thus far.  As I sit here on Sunday morning there don't appear to be any adverse effects yet from the procedures this past Friday.

Evan with Jackie the duck.

     The lesions on Evan's skin are still cropping up.  We've been back and forth with his medical team on the best course of action.  After being referred to a pediatric plastic surgeon we were told the soonest they could see Evan for consultation would be October 24th.  Naturally we weren't thrilled with the timing of this and Cristy brought those concerns up with our primary Oncologist.  He's expedited an appointment to be conducted tomorrow morning.  We're not sure if this is only for viewing or if there will be any procedures taking place.  Since we're meeting the surgeon in the day surgery unit I suppose there's always a chance of removing the growths tomorrow.  Either way I think a biopsy is long overdue.

Waking up post-sedation.

     Evan's work towards walking unassisted is on-going.  We seem to have stalled in our progress.  His attitude is great and he's very willing to go all-in on his physical therapy exercises, but there seems to be a problem with his balance.  I have to keep telling myself to be patient and keep working hard. It took us two months of best rest and surgery to get us into this position and it will take time to heal, strengthen and re-learn how to walk.

The boys being silly in the morning.  Nolan loves his big brother.

     In closing I want to return to our earlier topic, which is the wedding and celebration that followed.  Thank you to all of you who expressed concern, sent well wishes and offered assistance to Evan and family.  When times get tough here at the house it's good to be able to refer back on the words of encouragement from others to help push us through difficult challenges.

The groom and I during the photo session.