Day 317 - Change of Heart

     In the blog yesterday I mentioned that the ID team wanted to hold Evan until Saturday for additional IV based antibiotics and stay the course with his meds, well, apparently that plan changed in less than 24 hours.  This morning the medical team came through and let us know that ID had updated the plan and were releasing us with Levaquin for the next 5 days.  This is a broad spectrum antibiotic that should treat against various bacteria.

     The drawback to Levaquin is that it can react to Evan's Voriconazole in the form of heart arrhythmia or heart attack.  Prior to leaving the doctors ordered up an EKG exam to test his heart health.  I haven't the faintest idea how to read the results, but they sent us home with a new prescription so I'm under the impression it went well.

Asking the technician about the EKG exam.

     Evan and I got home about an hour ago.  As expected he's bouncing all over the place.  I'm going to try and keep him under wraps for a couple of days.  He's still showing symptoms of a cold (coughing, sneezing, runny nose, etc), but with much less frequency than earlier this week.  His blood counts showed a WBC count of 8 and a CRP of 12.  Both numbers are declining in the right direction.

     We're heading back to the clinic early next week for a follow-up with the oncology team.  They want to run tests to check the health of his liver and spleen and to make sure his Voriconazole level is still therapeutic.  We also need to reschedule his orthopedic appointment to determine if we can start running and jumping.  Glad to be home and I'm hoping for a quiet weekend. 

Playing with Mama.

Day 316 - Improving blood counts

     It's been a fairly uneventful day at the hospital.  We're still under quarantine until Evan stops showing symptoms of a cold, meaning we can't leave our room.  We've tried to make the best of it by packing in some PT, playing some games and reading.  Other than Monday evening Evan really hasn't acted sick throughout this latest visit.  Every doctor I've seen check him out always makes a comment about how he's acting fine.  Anytime Evan is acting sick then you know something is really wrong.

Commandeering Daddy's laptop.

     Yesterday Cristy got a late afternoon visit from the ID doctor on staff.  He feels very strongly that Evan's CRP and WBC counts are attributed to BOTH the confirmed virus and a bacterial infection.  Keep in mind there is no proof of a bacterial infection, but this doctor is drawing from experience.  I can't say I agree so it was welcome news to my ears when they pulled the Vancomycin this morning.  The plan is to keep Evan on Zosyn for at least two more days.  Cristy and I were both hoping for a Friday release, but the nurse this morning told me her notes show a Saturday departure.  Having never been released on a weekend before I'm still skeptical this will happen.

Switching from PT to his 3DS, but at least he's walking around.

     Late this afternoon the NP on the floor this week came by to let me know they would be restarting the chemotherapy regimen tonight at 8:00.  Her reasoning was his counts are improving and he looks great.  Speaking of which, Evan's WBC was a 15 and his CRP score was an 18.  Both improvements from yesterday and it's good to see him trending in the right direction.  His mucus is clear too so I'm feeling better about his body's ability to fight the virus.  She also gave the approval to lock Evan's port and allow him to come off the IV pole.  We've tried to take advantage of this new found freedom.

More playtime photos.

     We had a visit from two physical therapists today.  Evan was doing great for the majority of the session, but I think he started to feel uncomfortable with one of the exercises and from that point forward refused to cooperate.  It wasn't the therapist's fault, but I think she didn't have Evan's trust yet and he was not willing to push himself.  They left the equipment for us to pick back up on our own and Evan was happy to continue playing with me later.  Over the months Evan has gotten very comfortable with his current physical therapist and I believe this is what allows her to push him to limits he might otherwise reject.

Sit-to-Stand exercises.

     Evan and I are going to finish up with a movie night (Rogue One) and I'm going to try my best to get him to bed at a decent time.  If we get his favorite nurse again tonight I'm afraid he'll stay up talking to her or try to ambush her as she comes in the room.  If he sleeps in until noon again I suppose I'll know what happened.

A custom made beanie from Love Your Melon.

   

Day 315 - Potential source found - UPDATED @ 5:30

     Last night around dinner time one of the nurses came by and swabbed Evan's nose and collected a mucus sample.  I had seen the primary ID doctor out in the hall earlier in the evening and he checked Evan out, but didn't have any suggestions for the source of the high WBCs.  Not sure if he was the one that ordered up the swab or if it got overlooked earlier in the day.  Thankfully it came back positive for the rhinovirus.  This may sound scary and menacing, but it's the virus strain most associated with the common cold.

"Red Man" Syndrome from the Vancomycin.

     This doesn't mean they're necessarily going to release us today though.  Although I haven't spoken with the medical team yet our nighttime nurse mentioned that they were still closely tracking his CRP score to help determine how effectively his body is fighting the virus.  She believed they'd be pulling the antibiotics as well once ID has had a chance this morning to review the findings.

Out and about last evening.

     In the meantime we're in isolation to prevent other children in the hospital from getting this cold.  I'm not sick (as of this writing) and Evan isn't distressed, other than another mild fever yesterday afternoon.  With his bone marrow able to produce WBCs I'm optimistic that he can fight this cold himself.
     I'll almost certainly provide another update later today as more information becomes available.

UPDATED @ 5:30

     The medical team came by this morning and provided an update.  Evan's WBC count dropped to a more acceptable level of 16, however his CRP score went back up to 25.  I was a little alarmed by the elevated CRP score.  The oncologist doing rounds this week said that it wasn't anything to be too concerned about because the WBC counts will always lower before the inflammation markers.  I asked what to expect if we kept trending downwards and the NP said a possible Friday release with a follow-up appointment at the clinic next week.  We're going to continue holding off his chemotherapy meds until the virus is under control.
     Last night Evan had a heck of a time staying asleep.  Around 2:00 I helped him go to the bathroom (he's connected to the IV pole for fluids).  When I got him back in the bed he told me it was time to wake up.  I told him he needed his rest and to try to go back to sleep.  I could hear him carrying on a conversation with the nurse every time she came in for her evening checks.  I let him sleep in this morning until almost noon, which is without question a new record for him as far as I know.
     The ID team hasn't been by today and thus hasn't pulled his antibiotics.  I fail to see the advantage of them since we know that the virus is the root of his blood counts.  Hopefully Cristy will get a chance to talk to them today.

Day 314 - We were due for a fever - UPDATED @ 2:50

     Yesterday evening upon getting home from work I discovered that Evan was running a fever of 101.6.  Cristy had already called the hospital for guidance and left the house shortly thereafter to get through rush hour traffic.  They followed the typical script of Zosyn (antibiotic), a blood draw for counts and cultures and Tylenol.  His heart rate and breathing were elevated, but luckily the Tylenol broke the fever.  Prior to it being administered Evan's temp had risen to 103.2.

Finally got to eat something.

     As luck would have it one of Evan's Nurse Practitioners was still at the hospital and she came by to give him a quick check.   When I talked to Cristy on the phone she told me that the NP wanted to keep Evan for observation overnight because his WBC count was up since his last check.  She didn't know the number at that time so I had no reason to be alarmed.  It wasn't until after he got admitted to the cancer ward that I found out his WBC count was a 36!

     If you're unfamiliar with counts a normal WBC range for children is 5 - 10; a 36 was very surprising and something this high is usually indicative of an infection.  That said, I'm no doctor and he did just come off of steroids.  From talking with his primary doctor last time steroids stimulates the bone marrow so it could be a side effect from that.  I'm anxious to see what the medical team has to say about the findings.  His last MRI showed infections subsiding and nothing to be overly concerned with.

     Last night Evan didn't seem too distraught.  When I talked to him around 11 he wanted pizza and to go walking around the hospital.  I think he actually enjoys it there because his bedtime goes out the window, he has his own TV and I know he likes talking with the nurses.  Cristy told me this morning that there were no other fevers last night and that he was basically a puddle of sweat in bed.

Evan the Red Nosed Patient.

     I'll provide another update later once we find out if he's being released today or held for additional testing.

UPDATE @ 2:50 p.m.

     I got to the hospital just a bit before 2:00 to relieve Cristy and stay with Evan tonight.  He was happy to see me, especially since I brought a stash of sweets with me.  I got him out of school with his CHoA teacher and tried to plump him up with some McDonald's.  Awaiting me in the room was the ID team.  They came down to collect a bit more information about Evan and any red flags that might have stood out leading up to last night.

Jam session.

     The good news is his CRP and WBC counts were down from last night.  The bad news is those same markers are still extremely high.  If Evan was a normal patient they'd probably handle this situation much differently, but if there's one thing we've found out about Evan over these last 10 months it's that he's anything but normal.

Trending in a positive direction, but still too risky for release.

     He's not complaining of discomfort.  His skin doesn't show any unusual lesions or sores.  His ears, nose and throat all look normal.  Breathing and respiration in general is fine.  His urine and bowel movements also look as expected.  ID is at a bit of a loss right now.  Collectively the medical team is trying to decide how best to proceed.  For the time being Evan is on the most powerful antibiotic (Vancomycin) to potentially stamp down any infections which might not appear obvious and to prevent any blood related infections.

Doing some arts and crafts to pass the time.

     Until they feel more comfortable with the source or cause I don't think we'll be getting out.  I'll try to provide timely updates as they become available.  

Day 312 - 23rd Annual Lauren's Run and CURE picnic

       Mother Nature didn't cooperate with us this morning during our 2K and Tot Trot runs with the kids.  The temperature was great, but the precipitation made running less than ideal and the picnic afterwards a bit of a challenge.  Nevertheless we all put a smile on our faces and made the best of the situation.  Much like cancer itself you won't always get the conditions you'd like, but you give it your best shot.

Family shot before the race.

Strong Like Evan!

     Evan's steroid treatment has had him acting a bit out of sorts the last couple of days.  Cristy and I could tell he wasn't quite himself.  As the day has wore on he's starting to smile a bit more.  Looking forward to hearing his laughter more frequently as the week progresses.  

Taking part in the Tot Trot.  Nolan was a blur.

     Yesterday we tried to pack in several fun activities and they eventually took their toll on him.  I can't remember the last time he's willingly told me he was tired.  Didn't even want to read a story last night.  We were a bit concerned, but after checking his temp a few times throughout the night I guess he really was tired.  

The Graves/Wendel clans were able to run the 5K.  Carl got a medal for his age group.

     The rest of this blog will be full of photos from today.  Nolan was his typical affectionate self as you'll see.  There were two girls dressed as Belle and Anna (from Disney) and I'm positive he made their day.  Thanks to friends who were able to make it out and support this very worthy cause.  In our lifetime I'm confident they'll find a cure for Leukemia based on some of the research and drugs in trial now.  T-Cell therapy looks very promising and it will be a monumental day indeed when we no longer have to poison people in order to heal them of this terrible disease.

EvanziNauman showed their support

Evan stayed with Aunt Gina during the first half of the race.

Nolan was out-going as usual.

Wish this was a video.  He was dancing and eating.

He literally ran over to every hero he saw today.

#LadyKiller

Side-kick in training.

Pushing this stroller was tougher than it looked.

Looking forward to next year!

Day 311 - MRI Results

     Earlier this week Evan visited with his primary Infectious Disease doctor for a check-up and to discuss the results from his MRI conducted a week ago.  We were pleased to hear none of his troublesome areas have worsened.  Here is a brief rundown of the findings:

• Possible infection in 7th right rib.
• Right hip shows a spot of potential infection, but could be related to bone marrow aspiration.  Evan's left hip, which had been an area of concern before, appears to have healed.  The ID doctor was going to consult with the Oncology team about his right hip.
• Feet showed bi-lateral speckled patterns, possibly related to increased physical activity.  These could be minor hairline fractures brought on by a weakening of the bones when he was on best rest.
• Fungal lesions in liver and spleen.

     The doctor felt continuing our current treatment plan would be best.  This includes his thrice a day Keflex (antibiotic) and twice a day Voriconazole (anti-fungal).  Today Evan will conclude his steroid medication.  If he had poison ivy on his arm the steroids have taken care of it.  His arm looks almost back to normal.  In addition to ridding us of the poison ivy Evan's appetite has seen the typical uptick.  We're trying to take advantage of it by packing him full of calories.

     This morning Cristy and I took the boys to the Big Shanty Festival in downtown Kennesaw.  So much to see, hear and smell and I think Evan might have gotten worn down a bit.  By 11:00 he was ready to get out of there.  Following that we visited a local business to check pricing on a custom built playground for our backyard.  Evan and Nolan liked everything they saw so Cristy and I have some measuring to do and decisions to make.  Hopefully we can get something built in the next month or so once we make our selection.

Getting ready for the parade to start.

     The rest of the day we've tried to pack in with as much fun as possible.  I watched Star Wars: Rogue One with Evan, we had a water balloon fight and Evan created a calendar to countdown the days until he goes to Disney World.  Tomorrow we have our Cure race, although the weather forecast doesn't look good.  Maybe we'll luck out and the rain will hold off long enough for us to finish the 2K.  We had to switch from the 5K to the 2K because strollers weren't allowed in a CHILDREN'S CHARITY RACE!  (Sorry, it's a bit of a sore spot for me)

     This coming week Evan has an appointment to meet with his orthopedic surgeon.  Our physical therapist has asked that we get approval from the Dr. to allow Evan to begin running and jumping.  I noticed today although Evan moves slowly his limp is becoming less and less noticeable.  He and I were walking through a gravel lot at one point and he had issues, but my opinion is this is likely related to him not lifting his feet high enough while walking. 

     Closing out today with a song I found playing around on Spotify.  It's called Born to Win by Five For Fighting.  It reminded me of what a fighter Evan has been and how he'll hopefully be stronger for it.

Day 307 - The start of Maintenance

     Yesterday morning Cristy and Evan went to the clinic to begin the final (and longest) phase of chemotherapy known as Maintenance.  This treatment schedule is set to run for the next 2+ years.  In short it involves daily and weekly pills, spinal taps every three months and monthly IV drips of Vincristine and IVIG.

Birthday party animal.

     For some reason Evan was a bit nervous yesterday about his appointment.  I'm chalking some of it up to him being hungry and tired from a busy weekend.  We noticed a fairly large patch of blisters on his arm on our way to my parent's house yesterday.  Initially I thought it might have been brought on by prolonged exposure to the sun combined with the chemo drugs he's on.  As Cristy and I thought longer we concluded it could also be poison ivy since Nolan got it as well.  What do the doctors think?  Their guess is poison ivy as well.  As luck would have it Evan started a week's worth of steroids as part of Maintenance so if it is indeed poison ivy this should knock it out.  If not we'll be making a trip to the dermatologist I would imagine.

Recovering from another LP.

     As I'm typing up this blog I don't have Evan's blood counts in front of me, but in short they looked strong.  A 5.x ANC and 400+ platelets.  The other numbers were good too if I remember correctly.  Cristy asked our primary Oncologist yesterday what we should deem successful during Maintenance.  He said that the main goal is to keep Evan around a 1.0 ANC.  I guess this shows that the bone marrow is stable without being over-productive.  Wednesday Evan has an appointment with the ID doctor and I'm expecting to get the results from his MRI at that time.

Evan's first time playing with Aunt Holly's inflatable slides.

     Now on to the fun stuff.  This weekend Evan got to attend one of his classmate's birthday party.  When he got home the whole family broke out water guns and had a battle royale in the backyard.  In hindsight it was a bit cool for this, but I don't think the kids minded.  On Sunday we went to my parent's house to celebrate Easter.  As usual my mom cooked way more than necessary, my sister went all out on the Easter Egg Hunt and dad suffered through the heat in a Bunny costume for the kids.  It was a great day with family and friends and luckily the weather cooperated.

Easter Egg Hunt with the kids.

     Today Evan has cap and gown pictures at school and this weekend we're running in the Cure Lauren's Run 5K on Sunday.  Rain is in the forecast, but I'm hopeful the meteorologists are off by a day.  Friday and Saturday are supposed to be warm so we may try our hand with the water guns again.  Evan is getting around fairly well, but still has a pronounced limp.  His therapist seems encouraged with his progress so I just need to remember to remain patient while his strength returns.

Evan and Lily got injured meeting with the EB.

Day 300 - Spring Break 2017

     It's been about 11 days since my last update.  Let's get right into the medical details.  For the past 11 days Evan has been incident free.  He completed Interim Maintenance and other than some pinkish-red skin nothing is blatantly wrong.  He has blood work scheduled for Thursday, sedation and a full body MRI planned for Friday and the beginning of long-term maintenance chemo scheduled for Monday.  The MRI is intended to find any lingering infections that might not show up on an x-ray.  

Without a PICC we can do showers again.

       Maintenance is set to include IVIG, Pentamidine (antibiotic), Vincristine and a spinal tap.  Following that Evan will receive daily oral Mercaptapurine and weekly oral Methotrexate.  Both drugs are supposed to induce some level of suppression to the bone marrow without completely eliminating his immune system.

More brotherly love.

     Papa Bear went to Las Vegas last week/weekend and missed out on some of the trips that Cristy was able to take the boys to while out of school on spring break.  It's great that Evan is in a spot now that allows him to leave the house more frequently.  In many of the pictures you'll see in the blog today the kids were able to go to the Georgia Aquarium, Tellus Museum, my parent's house, bowling and attempted to go to a strawberry patch (unfortunately they were closed).

Nolan's 2nd trip.

Sitting still long enough for a picture.

     This weekend we're looking forward to Easter and getting to spend time with family and friends.  My parents are having us down for lunch and an Easter egg hunt that my sister has spared no expense trying to make special.  One of us is going to have to dress up head-to-toe as the Easter Bunny in fairly warm temperatures.

The dog on Evan's shoulder is his pet from school for the week.

     Also of note this week we received a letter from Make-A-Wish with more details about our trip to Orlando.  The letter was addressed to Evan and we were able to fill him in on it.  Needless to say he is very excited, as are myself and Cristy.  During a March 10th chemo treatment Evan and Cristy took part in a photo session with a group known as Flashes of Hope.  They take pictures of children fighting cancer and many of these photos can be found lining the halls of the cancer ward at CHoA.  We were lucky enough to receive the digital proofs today and are expecting physical copies in the next week or so.  

Reading his Make-A-Wish letter.

     I'll provide another update sometime Friday, assuming we get the results from his full body MRI.  If we can make it through this without any major infections it will be a huge step in the right direction.

One of our Flashes of Hope photos.