Day 257 - Back to School

     After having to deal with more health issues than I can count Evan finally got his opportunity to attend his first day of school.  Using the word excited to describe his emotions would be an understatement.  Around 5:50 this morning Cristy was in the shower and I got up to check on Nolan who was crying because he wanted his blanket back on.  A few minutes later I hear Evan over the monitor asking for someone to come in and get him ready for school.  As I walk in his room he had removed all his clothes and was about to attempt dressing himself; presumably because I was too slow.  I figured we might as well get the day started as I know I would have had no chance getting him back to sleep.

First day of Kindergarten!

     Cristy and I are still sorting out a revised medicine and eating schedule.  Returning to school changes our routine up, but this is one change I have no problem adapting to.  Getting Evan back in school actually adds some version of normalcy into his life.  I hope the few hours per day he's at school he can concentrate on being a kid and forget some of his daily challenges.
     This afternoon Evan had another round of chemotherapy.  When he got home around 3:30'ish I think the early morning and drugs finally caught up with him.  He slept on the couch next to me for a little bit.  As per usual once he woke up he was his typical happy and energetic self.  I don't know how he does it.  The Dr. decided to leave his dosage levels at the same as last session.  The redness and irritation of Evan's skin caused her a moment of pause.  It's likely due to the chemo drugs so I don't know if concern is the right word, but I'm sure she made a note of it.  She also suggested we get some lotion with an SPF rating.

Working on a math problem.

     During the meeting with the doctor Cristy was told that her preference would be to wait until maintenance to pull the PICC line in favor of the port.  I guess as long as we can get this done before the weather heats up I don't have any major concerns with this decision.  The PICC prevents us from exposing him to water and with spring right around the corner I'd love to be able to set the pool up outside for the kids at the very least.
     Closing out with one of my favorite feel good songs by a little known band called Suburban Legends.  The name of the song is called Bright Spring Morning.  It's about jumping in the car, rolling the windows down, turning the radio up and just driving.  I dream of the day when Cristy and I aren't tethered to the house and can just throw the kids in the car, flip a coin and go somewhere for the weekend.

   

Day 254 - A Night at the Circus

     This evening Cristy and I had a night out with the boys at Ringling Bros. and Barnum and Bailey's farewell tour in Gwinnett.  This was all courtesy of Cure, a non-profit organization who helps fund cancer research.  In addition they do other charitable work focused on helping the families with events, meals in the hospital or fund raisers that help bring awareness to the cause.  Another fantastic charity I would recommend donating to if you're looking for ways to help.

Getting ready for the show.

     I'd be remiss not to thank the Gwinnett Infinite Energy Center staff.  They also went above and beyond for all the families to help make them feel welcome and make sure we had everything we needed.

Nolan's first trip the the circus.

     On Friday Evan had PT and a blood draw to determine if his blood counts were healthy enough for his next dosage of chemotherapy on Monday.  Everything looked good and we're all set to continue Interim Maintenance.  Each day you can see Evan's movements looking more and more natural.  I don't think he'll be running 5Ks anytime soon, but he looks better than he's looked in months.

Boys night!

     I'm very excited to report Evan starts school on Monday.  I want to give a huge thank you to Evan's kindergarten teacher Mrs. Young.  She came in on her day off on Thursday to do a mini-orientation with Cristy and Evan so that it's not completely new to him next week.  Evan is over-the-moon ecstatic about getting to meet his classmates.  He even free-styled a song for me and Cristy about being nervous but it being OK.  I'm also told one of  his classmates is taking it upon himself to help Evan get settled in.

A little bit of musical chairs throughout the night.

     When Evan goes for his appointment next week Cristy is going to inquire about timing for his port install.  There has been on-going discussions among the medical team, however Cristy and I have never gotten a solid answer.  One of his NPs has suggested doing the install during his next spinal tap.  We'd be really happy if this becomes a reality.  It would allow a little more normalcy for Evan and give Cristy and I one less thing to worry about when it comes to introducing infections into his bloodstream.

Getting into the souvenirs.

     Not much else to report at this time.  Gonna close out with a slew of pictures that I hope put a smile on your face.  Nothing made me happier than forgetting about our challenges for an evening as a family and seeing smiles on everyone's face.

Day 250 - Courage Beads Update

     It's been exactly one week since my last update.  Needless to say if you don't hear from me it's usually because things are progressing as expected.  I have a few notable updates since the last blog entry.

Dance off.

     Cristy spoke with the medical team last week and they see no reason why Evan can't begin school when the students return from winter break.  One of the NPs at CHoA suggested starting with half days and working our way up to full days at some point.  We have a few questions for the faculty around the timing of Evan's medicines, handling of bathroom breaks during chemotherapy and eating schedule around his meds, but at least for now these concerns seem pretty minor.  Evan is beyond excited to meet his classmates face-to-face and to start getting back into a more normal routine.

Relaxing on the best seat in the house.

     During Evan's chemotherapy appointment last week his NP consulted with Cristy again about removing his feeding tube and she agreed now is a good time.  It's one less thing for us to deal with at night and allows Cristy to get some sleep (assuming Nolan let's us).  Breakfast and lunch are still a struggle; however, he eats pretty well at dinner.  If he's lost weight it doesn't appear to be much.  I brought home some Girl Scouts cookies this evening and Evan really took to the Trefoils so I may need to invest in a couple more boxes.

One tube down, one more to go.

     Last week Evan received the first chemotherapy treatment scheduled for Interim Maintenance.  We have another appointment on Friday for a blood count check and if his numbers look good he'll go back for his next round of chemo on Monday.  His strength and energy levels haven't noticeably dipped so I'm not anticipating any surprises.  His overall appearance is probably as healthy as I can remember over the last 7 months.

     On the mobility front Evan is doing outstanding.  It's only been a week since I was commenting on his occasional reluctance to walk and already he's made great strides.  His physical therapist says he's way ahead where she would have expected and even over the last couple of days he prefers to walk without the assistance of his walker.  The biggest challenge is stairs, although as his legs and core get stronger this should become less and less of a problem.

     I hadn't really taken inventory of Evan's courage beads in quite some time and decided to check them out this evening.  Seeing the different colored beads and the sheer number of them reminded me just how much he's been through on this incredible journey.  His will and resolve remain strong.  I'll likely provide another update Friday evening with his new blood counts and the go/no-go decision for Monday.

Courage Beads as of 2/21/17.

Day 243 - We're all set for Interim Maintenance II

     This morning Evan had an appointment at the local CHoA satellite office for blood work.  Based on how Evan has looked, Cristy and I both felt comfortable he was rebounding as expected since Delayed Intensification, but I didn't foresee his bone marrow responding so well.  Cristy got a call from the clinic this evening and got the results; he has a WBC count of 12.99, platelets registered 250, hemoglobin was at 11.2 and his ANC was 8.4.  His WBC, platelets and ANC were all way above average and his hemoglobin was in an acceptable range.

First haircut in months.  The boys weren't ready for the sunlight.

     With these strong numbers the doctors were comfortable moving forward with Interim Maintenance II on Thursday.  This involves two IV based drugs, Vincristine and Methotrexate.  As I understand it from talking to the NP, the Methotrexate quantity will increase in volume with each subsequent visit.  Ideally it would be every 10 days for the next two months, but the timing is dictated by how Evan's bone marrow and body chemistry responds to the treatments.

Playing Sunday morning before taking the family to see Sing.

     As you can imagine, this will negatively effect his counts; however, how quickly and to what degree remains to be seen.  Since we're taking Keflex and Voriconazole I'm hopeful his improved immune function can eliminate the potential infections found during the last scan.

Scarfing down some cookie calories.

     Cristy and I have noticed on and off effort from Evan on his walking.  Some times he's all-in and raring to go, and other times he fights us with every step.  When I've noticed severe limping I've asked him how he's feeling, but not once has he reported discomfort or pain.  I'm looking forward to Friday because he'll see his main physical therapist with whom he's built a great rapport.  She hasn't seen him using both feet in over two months.  I have no doubt she'll be as excited as we were, and even more so, I hope she pushes him to his limits to get stronger.
     Today Evan's teacher came by the house to drop off Valentine's Day gifts from his classmates and teachers.  The thoughtfulness of the faculty and classmates always puts a smile on my face as I know it does Evan too.  I'm optimistic we come up with a plan with Evan's medical team on what the future holds for him attending school.  We didn't get to experience a typical "first day" like many parents, so I'm sure I'll be a blubbering mess when it does happen.

A personalized wooden book for Evan's writing signed by all his classmates.

     Closing out with a very Happy Valentine's Day to everyone out there, especially my loving wife Cristy.  Through thick and thin she puts up with me, continues fighting for our family no matter what situations present themselves and always puts others first.  I still don't know how she functions on so little sleep and continues to keep this house running.

The surprise cake Cristy got me for V-Day this year.

Day 237 - We're back (again)!

     Yesterday we finally got all four members of the family under one roof again.  Evan's tests ran long, but luckily Cristy and Evan made it home after a little bit of time in rainy rush hour traffic.  I don't think Nolan could have been more excited to see his brother and mommy.  Naturally I was thrilled too having my family together again.
     Tuesday morning Evan had a dye injected into his body that would help identify infections, fractures and other non-standard bone ailments.  The scan that was done wasn't an x-ray or an MRI, but rather is known as nuclear imaging and is a component of nuclear medicine.  During a scan the dye would highlight areas of concern.  The link provided should explain it in much better detail.  Needless to say this scan took quite a while to get scheduled and completed.
     The test showed two other potential infections, the first in one of Evan's vertebrae and the second one in his left hip.  I didn't talk to the doctors personally, but Cristy noted that both were considered small in size.  Our ID doctor feels that an improved immune system combined with his Keflex treatments should handle the infections.  There is nothing official on the books, however we're told they will likely bring us back in in four to six weeks for a status check.
     Upon his return last night I noticed two things.  Evan seems to be moving pain free, although his muscles and balance still need work.  The second thing I saw was that his sleeping schedule is all out of whack.  In the hospital he was able to stay up until 10:30 or 11:00 due to the nature of his medications, bath time, shift change, etc.  At home last night I tried to get him to bed at 8:30 and it was futile.  If you told me he had springs sewn into his pajamas I'd have believed you.  Let's hope that tonight we have better success.
     The doctors have given us the OK to restart giving baths to Evan this Friday.  The incision in his leg looks good, but this allows for a bit more time to heal and scar/scab over.  It doesn't look red or swollen so I feel confident that it's coming along.  This week we'll take it easy and lay low around the house.  Not sure when his next lab appointment is.  With any luck we're through the worst of Delayed Intensification and can start focusing on the other challenges ahead.

The reasons why I strive to be a better man each day.

Day 235 - One more test

     Ideally I'd be writing this blog with the family all under one roof, but the doctors decided to run one more test before releasing Evan.  The ID doctor wanted to have a body x-ray performed in order to check for any other infections.  Unfortunately for us this couldn't be coordinated fast enough to allow for our release today.  My parents dropped Nolan off at the house with me this morning and I was ready to do the switch with Cristy, but she felt spending one more night in the hospital wasn't a big deal.

     Our ID doctor believes that keeping Evan's antibiotic treatment as-is is the best approach.  In her mind there wasn't enough data to justify a change.  If we had switched to Rocephin it potentially could have introduced other complications due to the broad spectrum of bacteria it combats against.  I had no concerns with this approach since it looks to me as if the infections likely cropped back up when Evan's blood counts were down.

PT on the playground.

     Evan's mobility is coming along very nicely.  He is extremely eager to walk and I can't remember that being the case historically.  It's obvious to me that he's feeling much better in his leg than he has in the past.  I always ask him how he feels expecting some soreness in his muscles or surgical site, but he always tells me he feels good.  The physical therapist took him to the playground today and Cristy said that he handled stairs and ladders with only minimal assistance.  I jokingly told Evan the other night that he and I can play some soccer in the back yard in a couple of weeks.  I never imagined that it might actually be possible!
     Cristy spoke with the nurse practitioner this morning and we have an update on his chemotherapy.  They're tentatively looking at next week to start up Interim Maintenance.  This provides his body with a bit more time to get the leg infection under control or eliminated.  The NP also mentioned that we could possibly re-install his port during the next LP.  This would be fantastic as it would allow us to get rid of the PICC.
     Keeping things topical I want to say congratulations to the Atlanta Falcons on a great season.  I personally didn't have Super Bowl expectations and the team should feel proud.  I know many of the players devote a lot of time to CHoA and lifting the spirits of the children.  At the end of the day it's only a game and we gave New England a scare.  The team is poised for another deep run next season and hopefully once the sting wears off they can reflect on this season and hold their heads up high.  Rise Up!

Rise Up!

     Also of note is my sister's birthday tomorrow.  I don't want to embarrass her and say her age, but let's just say we're both getting long in the tooth.  Happy birthday Sis, thanks for all you do for us!

Day 233 - We're Up!

     The family has had a pretty busy day.  The morning started with a visit to Radiology for an x-ray of Evan's chest.  The purpose of this was to verify that his PICC line hadn't shifted out of place and was still effective for delivering medications and blood draws.  The medical team confirmed that it looked good.  We also met with the team this morning about the results from the ultrasound of Evan's arm last night.  The technician did not report any clots which was music to our ears.  All of this testing came about because of the discoloration and swelling around the PICC site.  The general thinking is that it could be a rash or allergic reaction to the CHG cover dressing.  We'll continue to keep a close eye on it.

He was very happy to have the drainage line gone.

     Around lunchtime someone from Ortho came down to pull the drainage line from Evan's leg.  The process was really quick and almost entirely painless.  Shortly after the Dr. left there was a fair amount of blood on Evan's dressing.  We were told this was normal and after applying some pressure the bleeding stopped.  As a precaution the nurse checked Evan's BP, but it was perfectly fine.  The nurses came in after lunch and re-dressed his leg.  The swelling looked minimal with some slight bruising.

Only some bruising and small scabs left.

Slightly closer view of his surgical site.

     With Evan's drainage line gone he felt very eager to start walking.  This worked out well since PT was scheduled to work with him today.  Gina and Cristy escorted the therapist and Evan to the gym to get started on his rehab.  I couldn't have been more proud.  This evening he also wanted to go walk around the cancer ward, naturally Cristy and I were happy to oblige.  For once I was the voice of reason asking him to slow down and give his muscles time to catch up.  He's been off of his right leg so long I want to make sure we're taking baby steps.

Gina and Evan scooting around the hospital.

     ID informed us today that we still don't have any cultures.  Not a shocking revelation by any means.  I asked where does that leave us?  They want to have a conversation with Evan's primary orthopedic doctor to try and map out an infection prevention strategy that is effective against bone ailments.  No one can commit to a discharge date, but I still feel strongly that they'll release us Monday afternoon.  The only thing that might prevent that is if they have trouble acquiring IV based antibiotics for home use.

He's looking forward to playing some soccer at home again.

     When Oncology comes by tomorrow I'm going to see what their comfort level is with moving forward with Interim Maintenance this coming week.  Evan continues to be in good spirits and is back to squirting the nurses (or anyone that enters our room) with water filled syringes.  So far everyone has willingly played along.  Let me close out this blog before he shoots me and the laptop with water.

Getting in some last minute laps before bedtime.

Day 232 - Late night scans

     We were hoping for a quiet weekend, but whether or not that happens is still up in the air.  This morning someone from Orthopedic came in to check Evan's drain and seemed pleased with how it looked, the swelling level, etc.  Following this visit the Dr. put in an order for PT work.

Working on some Legos this morning.

     Around 10:00 a therapist came in to work with Evan.  As usual he lacked confidence in bearing weight on his right leg.  The therapist asked us to try providing supported areas for him to place his foot so that he can get used to the sensation of a flat foot.  From a soreness standpoint Evan isn't complaining about pain.  Ortho will continue to monitor the discharge this weekend and once they're comfortable will pull the drain to allow his leg to completely heal back up.
     When the medical team came through this morning I was anxious to get his blood counts.  His hemoglobin, platelets and WBCs were all healthy and his ANC has steadily climbed to 1.94.  Based on his increasing numbers I spoke with Oncology about when we might begin Interim Maintenance.  They said it's still pending the culture results from Thursday.  This will also drive the decision on what antibiotic to prescribe and if it needs to be IV or oral.

Spending a little time with the musical therapist.

     Infectious Disease dropped by this afternoon to let us know nothing has cultured yet.  Upon giving Evan a once over they noticed his right arm was swollen around his PICC line.  They have decided to perform an ultrasound on his arm and a chest X-ray.  The purpose of both is to check for clots and the placement of his PICC line.  I don't know if we'll hear anything concrete this evening, but would expect some results in the morning once the medical team has had time to review.
     There is no planned discharge date as of yet.  With his infection still up in the air and now the possibility of a clot or additional infection around his PICC line they'll want to clear those items up.  Cristy is spending the evening at the hospital and if additional information comes available I'll try to update the blog.

Build-a-bear in The Zone.

Day 231 - Culture Club

     This morning around 7:20 Evan was taken upstairs to the operating area to have his right leg operated on (again).  The surgeon came down at about 9:30 to let us know that the surgery was a success.  She was able to collect some tissue and pus for the biopsies and relieve the pressure in his bone.  Historically we haven't had much luck with the cultures showing bacterial strains, but because there was pus and original tissue I like our chances.  Evan has spent the rest of the morning sleeping off the anesthesia.
     The ID team came down around 11:00 to let us know their immediate findings.  Under a microscope the doctor saw gram negative rods, consistent with e-coli, however there were other organisms that she wanted to take a closer look at.  While our surgeon is not an infectious disease doctor, she feels very strongly that we're dealing with two different strains here and has stressed her thoughts to the ID doctor.  We're expecting another visit from ID very soon, hopefully with more concrete findings.

A little groggy after surgery.

     It's been a slow day as Evan recovers from his operation.  While under he received a spinal tap to draw fluid samples and another dose of chemotherapy.  By consolidating the efforts this morning it keeps us somewhat on schedule with his cancer treatments.  This afternoon he got an infusion of Rocephin and IVIG.  His temperature has been steadily climbing today, but since it wasn't a spike there isn't a concern right now.  Anesthesia, antibiotics, IVIG or improved WBCs could all have contributed at this point.
     The orthopedic surgeon did bring us some good news today.  She conferred with her colleague, who has also been involved in Evan's care, and they agreed that they feel his ankle has improved enough to begin walking on it again.  As soon as Evan feels up to it we can start incorporating walking into his PT plans.  She cautioned us that the bones in his right leg were "soft" due to being off of them so long.  Cristy and I will work out a plan with his physical therapist to address this short and long term.

The newest drainage line in his leg.

     Some uneventful days would be ideal to allow his body time to heal and get us back on track with Interim Maintenance.  Tomorrow I'll talk to the oncology team to talk about timing for the next steps.  The rounds of chemo from here on out should be much less toxic to Evan's body and keep his blood counts in a much safer range.

Day 230 - "You almost made it...."

     The title of today's blog were the first words our primary doctor said to Cristy and me upon seeing us this morning.  It was a good way to break the ice after a tense past couple of days.  Let's back up a bit.  This morning Cristy was waiting to hear back from the clinic on when surgery might be ready to receive Evan.  Shortly after 8:00 they called and told us to bring him in.  Nolan and I left a few minutes later in order to finish our breakfasts and for me to pack a couple last minute items.  After sitting in Atlanta traffic for well over an hour Nolan and I finally arrived for the hand-off to my parents.  It was like a drug deal in a dark parking garage, except instead of heroin it was my two-year old son.  Nolan was more than thrilled to spend some time with Grandma and Grandpa as he kept letting me know as we got closer and closer to the hospital.

Awaiting results on his morning bloodwork.

     When I got inside Cristy and Evan were still in the waiting room, but were called back after about 10 minutes.  The nurse took Evan's vitals, drew blood and escorted us to an exam room for more waiting.  Fast forward another 20 minutes or so and we were able to meet with Evan's primary Oncologist.  The Dr. walked us through the MRI, what he saw and provided us his expert opinion on how we got here.  He didn't seem overly worried about the infections, which put our minds at ease.  The general thinking is that Evan's immune system essentially hitting rock bottom was the likely root cause of this most recent flare-up.  Evan's blood counts from earlier that morning were made available to us and it was encouraging to see everything had improved since Friday.  At the conclusion of our meeting we still had some outstanding questions, but these would have to wait for the Orthopedic and ID teams.

Getting my son ready for his first riding lawnmower.

     At this point in the day we were still anticipating surgery and tried to find things to do in clinic to pass the time.  We played arcade games and spent time with another couple that we met back in October who happened to be in clinic that day.  Two things caused us comfort issues, the first is that there were no rooms available in the cancer ward for us to go to and the second is Evan was NPO (nothing by mouth) until his surgery.  Around noon Evan started getting hangry and all we could do was wait.  As fate would have it they found a free room around 1:30; now we had to get this boy some food.

Kisses from the service dog in clinic today.

     We've never had a bad Aflac nurse, but we were happy to have one assigned that was very familiar with Evan.  She couldn't believe how good he looked with weight, hair and that million dollar smile.  She stressed to the surgical team the need to get someone down so we could get this little demon under control.

Getting a few smiles prior to eating.

     When the surgical team arrived it became obvious we were being pushed until tomorrow.  Cristy and I had a variety of questions around blood flow, the severity of the infection, what the surgery would entail tomorrow and how this would affect his mobility.  The plan is to leave the ankle alone.  The MRI shows inflammation and possibly a slight infection, but not enough to warrant further poking and prodding.  Evan's proximal tibia will be drilled tomorrow to relieve pressure and allow antibiotics to reach the infected site.  A drain line will be used again to help with recovery and evaluated over the next day or two.  Unfortunately we received news that the growth plate in Evan's ankle may not grow again.  This could impact him by about an inch and a half long-term in his right leg if the doctor is correct, but she said they'd know more over the years and could address it then.  Naturally we had more questions, but this blog is already long enough and I can cover it in more detail another day.  Evan is first on the surgery list so by the time I get to the hospital tomorrow he should be in the room sleeping off the anesthesia.

Taking advantage of the toys at CHoA.

     The ID team visited with us later this afternoon.  They felt the Keflex should have kept the infection in check, even with lowered WBCs.  The fact that it didn't leads the ID team to believe we may need to switch to IV based antibiotics and possibly even another drug.  They'll know more later this week once the biopsy samples come back from the surgery tomorrow.
     Evan is in good spirits.  He's more worried about a band-aid getting pulled than someone putting him to sleep for a surgery.  While he's under tomorrow the Oncology team wants to do another spinal tap.  The medical team is still discussing his port installation, but in the meantime it looks like we're stuck with the PICC for a while longer.  They also want to perform an IVIG infusion, if his numbers deem is necessary, and check his Voriconazole levels.  Quite a few things planned for tomorrow, with subsequent steps pending the results from other various tests.
     Cristy and I are holding up better today.  When we hear about these chronic infections in his leg we instantly think the worst.  Despite not always liking the news I hear it's still comforting to at least have answers to questions.  My best guess is we'll still be admitted through the weekend, especially if they want to switch us to IV based antibiotics.  Those can't be acquired at your local drug store and have to be sent directly to the house within a climate controlled packaging.  It always takes time to procure this so Monday seems most realistic to me, however I'd be thrilled if I was wrong.  Hopefully there will be no more surprises this week and we can get Evan home to continue our battle.  Thanks to everyone who has reached out with kind words or offered support!

The best serious picture I could get.