Day 98 - Surgery has been rescheduled

     Sorry for the late response on this.  I know Cristy and I have gotten several questions lately about how Evan was doing post surgery.  After a review of his right arm the surgeon decided to refer Evan to an orthopedic surgeon.  The doctor that was going to perform the work originally thought it was a simple removal of some cyst nodes, but after seeing one was located in his wrist joint felt more comfortable deferring.

Making personal pizzas with his brother.

     At this time Cristy and I are still awaiting word on when this procedure will be rescheduled.  The doctors aren't positive what is causing the growths and won't know for sure until they perform another biopsy.  Unfortunately they found another growth up his forearm under the skin.  Purely based on look and feel the doctors think this is more fungal legions and his body's attempt at walling them off.
     School and PT are on-going and Evan is getting better with both.  Cristy and I have both been pushing Evan to do more, mentally and physically, and I'm very proud of how he's responding.  He sometimes gets upset and talks back, but more often than not he is beginning to trust the process.  As more information becomes available I'll provide more updates, hopefully in a more timely fashion.

Bike work with the physical therapist.

Day 96 - 3 out of 5 sessions complete

     Today Evan completed session 3 of 5 for this round of chemotherapy.  I took Evan to get blood work done Saturday morning and we received a call from one of the CHoA nurses yesterday that his blood counts were low.  So low in fact that there was talk of postponing today's session.  Upon arriving to the hospital this morning the medical team drew more blood and we anxiously awaited the results.  This morning's draw looked really good so it would seem Evan hit a natural lull this weekend due to the previous chemo session.

Latest blood results from 9/20/2016.

     The Oncology team felt comfortable continuing to increase the dosage amounts of both the Methotrexate and Vincristine.  Cristy and I will need to be extremely vigilant in protecting Evan from outside bacteria since it would appear the drugs are weakening his immune system as intended.  I was very pleased with the blood results from this morning.  All relevant counts looked very strong.  These would include WBC, ANC, Hemoglobin and Platelets.  On a negative note Evan's weight dropped to 18.7 kg.  This means we'll need to put more effort into high calorie meals again.

Evan's hair is filling back in.

     Evan's physical therapy is going well.  He's gaining more and more confidence each day and this allows us to expand the types of exercises to stimulate him with.  Bearing weight isn't such a chore and he's even enjoying the physical activity.  Cristy and I wonder if this increased mobility is a direct factor in his recent weight loss.  Evan's blood thinning has been too effective as well.  The doctors have advised decreasing his Lovenox dosage amount.

Core muscle exercises.

     Tomorrow Evan will head back to CHoA for "evaluation" with the surgeon.  I put that in quotes because this viewing will probably also involve surgery on his wrist.  We're optimistic that this will be a fairly quick and straightforward procedure.  I'll try to provide another update tomorrow after he's back home.
     Wanted to note that Sunday was mine and Cristy's 11th anniversary.  Our friends Hannah and Matthew were nice enough to watch the boys Friday evening so we did get a chance to go out and celebrate for a bit.  Hopefully as Evan continues to heal we can find more time to spend with each other.

Selfie time!

Day 92 - Surgery?

     Evan has developed a sore on his lip and a cyst on his wrist.  Cristy called the nurses to determine if this is something to worry about and out of caution they asked us to come in yesterday to take a peek.  Evan has developed nervous habits and has been picking his lips, however our primary doctor thinks the largest sore on his lip is related to the methotrexate levels in his body.
     The cyst showed up almost instantly.  We first noticed it Sunday evening after taking the boys out that afternoon.  To the touch it is hard, although it doesn't seem to be causing Evan any discomfort or pain.  Fortunately it doesn't appear to have grown since our initial discovery.  The doctor looked at it and referred us to surgery to have it removed or drained.  We're awaiting word back on the scheduling of that and what exactly the course of action will be.  The Oncology team has mentioned they may hold off his next dose of chemotherapy until his body has healed from the operation.

The new spot is to the upper-left in this photo.

Middle-right on this photo.

Bottom-center of his wrist in this picture.

     On to the positives.  Evan has been holding his food down much better and doesn't seem as traumatized by the twice a day Lovenox injections.  His weight has ticked up to 19.3 kg.  We're continuing our physical therapy sessions twice a week and Cristy and I work with him multiple times a day on other range of motions exercises.
     School seems to be going well and he's listening to the teacher when she comes to visit.  I was afraid that being at home would give him the impression that he could act out more than he would if he was in a more formal setting.  While watching him do homework he seems very comfortable with it.  We've found a book series that is entertaining and basic enough for him to read.  In the evenings he's really doing a great job with reading along with me and is starting to understand sentence structure.  He also has taken a liking to Tolkien, which if you're ever tried to read aloud is very difficult.  To say I struggle with it would be an understatement.

A little silliness with the family.

     I'll try to add another update this weekend once a surgery date is determined and what procedures will be taking place.

Day 87 - Building confidence

     Ever since returning home Cristy and I have been slowly trying to build Evan's confidence back up in eating, walking and how he views himself with basically no hair.  The title of this blog could lead you to believe that the confidence problem is Evan's alone,  however Cristy and I are also working on our confidence.  What activities could harm Evan?  How hard should we push him in his rehab?  How safe is it to take him out in public?  These are just some of the questions and concerns we struggle with daily.

Big brother passing on some knowledge to his little brother.

     Friday Evan went to clinic for his latest doses of chemotherapy drugs.  He gained a bit more weight, now up to 19.2 kg, which was very encouraging to all of us nursing him back to health.  His blood counts looked strong, albeit a little lower than previous weeks.  Platelets, WBC, ANC and hemoglobin were all down, but none were dangerously low.  This is no doubt due to the drugs performing their job function.  Cristy asked the doctors what to expect with continued chemo treatment for this round and was again given assurances that his blood counts would be monitored and the intent is not to zero him out during this phase.
     Our physical therapy work is progressing nicely.  Evan is starting to get more comfortable and he's even taking initiative on his own to put in work.  He's generally not fighting us on walking and that makes it a bit easier on all of us.  I figure this week we'll start trying to phase out his walker as much as possible and see if there is any unassisted exercise that we can put in.

Evan's wish list, which we'll work on next year.

     Life at home is busy.  Between administering drugs, doing school work, physical therapy, naps and entertainment our work is cut out for us.  That doesn't even take into account finding ways to stimulate Nolan and continue his maturation.  The family and I are heading out today to shake off some of this cabin fever.  Let's hope that my confidence in his immune system is not misguided and that he's able to fight off any bacteria that we should encounter.

Sharing a laugh.

Day 81 - Thank goodness for Netflix

     It's been almost a week since our last entry.  Evan is doing well overall.  As usual of late our time is spent focused on getting him upright and walking without assistance, gaining weight and keeping him mentally stimulated.  He still experiences nausea and some vomiting due to the Bactrim on the weekends, but for the most part he's doing better about holding his food down.

Nolan loves rubbing Evan's head.

     Evan has been battling a small cough for about a week now.  It's most notable in the morning and seems to fade throughout the day.  There's usually mucus associated with it which tells us his immune system is handling it.  I'll be a bit more concerned in another week once his blood counts start to take a dip from his last session of chemotherapy.  We'll definitely keep a close eye on it.

Late night fun with slingshot rockets.

     Our PT work is slowly having a positive effect.  My goal is for him to be able to walk again by the end of the month.  This morning we worked on walking without any assistance and he's still very shaky.  I was very proud of him for trying to put in the work without complaint.  Over the next week I'll try to provide less and less counter-balance in an effort to strengthen his legs, improve his balance and just as importantly gain confidence in himself.

Decorating cookies with Hannah.

     For the coming week we have a PICC line dressing change on Tuesday, school and blood work on Wednesday and another session of chemo on Friday.  Cristy's family is set to come down this week and the boys are looking forward to their visit.  Wrapping up with a couple more photos from the past week.

Excited about his Happy Meal toy.

Slowly getting more comfortable on his feet.