Day 195 - Hopping Along

Cristy:

     Evan and I had a long day out today. We headed to the clinic early this morning, and started the day with a spinal tap. This was followed by a dose of Vincristine and IVIG (immuno globulins). We were told to stop the "bridge" chemo we've been doing, the daily 6MP and weekly Methotrexate, as we will be moving forward next week.

Waking up to a prize post spinal tap.

     In November, Evan was in the "Delayed Intensification" (DI) portion of his chemo plan. He was scheduled to start the most toxic drugs of this phase on the Monday before Thanksgiving. However, this was the day I noticed his ankle was swollen, and the harsh chemo was put on hold until after his latest surgery and after his body had a chance to heal. There was a possibility we might skip the rest of this phase all together, as these drugs will significantly drop his blood counts. After many discussions, the oncologists' gut feelings were to pick back up where we left off and continue as planned.
    Evan is scheduled to go back to the clinic on Tuesday of next week to re-start the second half of DI. This will be an all-day event, as his Cytoxin infusion will take around six hours. He will also start Cytarabine (given by injection for four days, three days off, then four more days), and daily Thioguanine for two weeks. I was told this month of DI is when we will most likely end up in the hospital for fevers and neutropenia (low neutrophil counts). So while we were originally looking for things to get easier after Christmas, our new goal is to make it to Valentine's Day relatively unscathed.

Latest blood counts.

     Evan then had a follow-up visit with the orthopedic surgeon this afternoon. We were hoping to receive a thumbs-up for Evan to put weight on his right ankle. They took an X-ray of his ankle, and the surgeon said his bone has not healed enough yet, and needs to stay off of it for a while longer. We will go back in four more weeks to check it again. This was really disappointing news, as we were hoping to get Evan back on his feet. He's been so active and raring to go, and his incision has healed well, but his bones still need more time.
     Evan has a rough patch coming up, but Blaine and I will do our best to help him through it and get to long-term maintenance. Evan's attitude towards his treatments lately has been great, and he has definitely been back to his old playful self. We just need to keep him hopping along until his ankle and body are both strong again,

Day 193 - Christmas recap

       Christmas 2016 has come and gone.  The boys were showered gifts and affection, the family got to come together for some fellowship and we all enjoyed the warmer than usual weather.  Yesterday my parents, sister, niece, brother-in-law and friends Todd and Gina came over to celebrate Pruitt style.  Evan really hadn't asked for much besides Lego Dimensions so it was fun seeing his expression while opening various gifts.  It was also great that Cristy's brother Rhod was able to join us this year.
     On the healthcare front I won't have many updates until Wednesday evening.  The only news we've received is that Evan will get a spinal tap, IVIG infusion and Vincristine.  Anxious to see what the Oncology team has planned for Evan's future treatment.  The rest of today's blogs will simply contain photos of the last few days.  More updates to come later this week.

Rhod and Evan playing some Battlefront.

The Griffins sent Evan and Nolan some gifts!  Thank you!

Leaving cookies, milk and carrots for Santa and his reindeer.

Checking out their stockings.

Quick photo before the kids woke up.

Nolan enjoyed tearing paper.

The kids "hiding".

Surprise!

Winding down.

Santa and the boys.

Making cookies for the big man's arrival.

The boys showing some brotherly love.

Day 189 - Q and A with Evan

     Christmas is almost upon us and the Pruitt household is buzzing with excitement.  We still have our daily and weekly tasks/appointments, while also trying to fit in shopping, wrapping, cleaning and family time.  I'm happy to announce we've decided to move the annual Christmas celebration to our house this year.  In almost every year past my parents have hosted, but due to the challenges Evan's situation presents we decided that doing it here would make the most sense.

Trying to wake up.

     Evan's next scheduled medical appointments aren't until the 28th, however we did increase his PT sessions from once a week to twice.  With work being slow at this time of the year, and at Evan's request, I took him to his appointments this week.  The therapist is very happy with his progress and assuming the surgeons give him an all clear next week she already has some ideas around restoring his ability to walk.  No news on the chemotherapy or cancer front.  We'll find out more next Wednesday.  Until then we continue to administer drugs for this interim phase.

Nolan loves playing doctor.  My hat is part of his uniform.

     As most can imagine the boys LOVE Christmas.  The gifts, food, music and movies are just a few of the reasons.  For anyone who has contributed to their enjoyment this holiday season I just want to say thank you.  Seeing smiles on their faces are the only gifts I need.
     Now on to Evan's question and answer results.  He was a bit apprehensive to the process and unsure of his responses, but I have to keep reminding myself he's only five.  Nevertheless, he handled a few of the tougher questions with grace and it told me that he has the right mindset for the months and years ahead.  For accuracy sake I've tried to leave all the responses in their verbatim form.

Question: Tell me about yourself?
Evan: I don't have anything to say about myself.

Question: How old are you?
Evan: Five.

Question: Do you have a favorite school subject?
Evan: Hmm....making books. (English)

Question: What sort of books?
Evan: I make up my own books and write them down so I can sell them.

Question: What do you like to do for fun?
Evan: Write books and play video games.

Question: What is your favorite food?
Evan: Boiled peanuts.

Question: Do you have a favorite movie or movies?
Evan: Harry Potter, Narnia and Pirates of the Caribbean series.

Question: For someone meeting you for the first time, what would you tell them about yourself?
Evan: I don't know.

Question: What do you think about having cancer?
Evan: I don't have any questions. I don't really think about it.

Question: What do you want to do when you get older?
Evan: Be an author and/or inventor.

Question: What's your favorite memory?
Evan: Going to Dave and Buster's to play video games.

Question: What's the most uncomfortable you've been since being diagnosed?
Evan: When I was in the hospital for two months. (Nothing specific was given)

Question: What has been the most difficult procedure, drug or surgery so far?
Evan: The leg surgeries.

Question: What would you tell other children finding out they have cancer for the first time?
Evan: It will be okay.

Question: What did you think about when you found out you were going to lose your hair?
Evan: That I really didn't want to lose it.

Question: How long do you want to let it grow once you're through with chemotherapy?
Evan: As long as Rapunzel. (Cristy and I agreed to let him grow it long when the time is right)

Question: Where do you want to go once we're through with treatment?
Evan: The beach, the aquarium, White Water, Dave and Busters.

Question: What is your favorite sport to play?
Evan: Soccer.

Question: What is your favorite thing to do when you have free time?
Evan: Write books and play video games.

Word Association.  Tell me the first thing that comes to mind when you hear these words
Momma - I want to hug her.
Daddy - I want to play with daddy.
Nolan - I want to play with him.
Grandma / Grandpa - I really want to go see them.
Holly - I want to go to her house.
Lily - I want to go to her house.
Camdyn - That I want to play with her.
Debra - That I want to play with her.
Quitting - I don't ever want to quit.
Pain - Kind of don't like it.
Cancer - I don't like it.
Surgery - It's going to hurt.

Day 181 - Chemotherapy plan uncertainty

     We're approaching a milestone as we're almost six months into our life changing journey.  Evan is in good spirits overall and has adjusted exceptionally well to his treatment and lifestyle changes.  From a cancer perspective he's still in remission, however there is another two and a half years of chemotherapy still ahead of us.

BB-8 sitting through a PICC flush.

     Cristy and Evan visited the clinic this morning to meet with the ID and Oncology teams.  ID was satisfied that the infection is under control and switched Evan from Rocephin to Keflex for the next six-to-nine months.  Evan's primary Oncologist has not made a decision on what his long-term plan looks like.  The Oncology team was to meet this week and try to nail down what his treatment plan will look like.  I was hoping for more concrete answers, but it looks like much of the same for the time being.
     There was a blood draw this morning and for the first time the results were sent to an Immunologist.  I'm rather curious what data they'll be able to derive.  His blood counts looked very solid, with an ANC around 4.0.  In a healthy person this would be more than enough to fight of infections, both bacterial and viral, but with Evan you just never know.  In the coming year I'm optimistic that we'll receive answers to some of these lingering questions.
     Evan's physical therapy has been going well.  He's working with us and the therapist without much fuss.  In addition to that he's really picking up educational concepts around math and reading at a very good pace.  His mental and physical state are improving daily and this is encouraging to me.  He's always got a smile on his face and tries very hard to get better each day.  I couldn't have said the same things about three months ago.

A little fun in the tub.

     It may be time to cut back on Evan's daily calories.  His weight gain is up to 23.7 kg (52 lbs), which is higher than when he was even diagnosed!  The nightly Ensure feedings can probably be tailored back some.  Ideally I would like to see him continue to eat and get his nutrients that way if at all possible.
     The plan is to stay the course and finish this revised schedule.  It should run until until shortly after Christmas.  At that time the Oncology team is supposed to have made final decision on his remaining treatments.

Family hug time.

Day 174 - Meeting with Make-A-Wish Foundation

     This evening the family and I met with representatives from Make-A-Wish.  They came to the house to interview Evan and walk us through the legalities and process of granting wishes to children with life threatening illnesses.  The ladies brought him some balloons and his own Christmas ornament.  I was very entertained watching Evan navigate through the questions and hearing his responses.  It gave me an idea to do a separate Q and A session with Evan in the future for use on the blog.
 

Make-A-Wish ornament for Evan.

     What was Evan's wish?  Like most kids he wants to visit Disney World.  The MaW folks have their own resort that we would stay in with other children that are in the same situation as us.  They'd help coordinate medical assistance for us and phone Evan's treatment plan to the Oncology team at Disney.  No dates were given, or even promises that the wish would be fulfilled, but it was humbling to even be considered.
     Evan's cancer treatments are on-going.  We're on the daily 6-MP (Mercaptopurine) and Methotrexate on Thursdays.  Our next scheduled appointment is not until Wednesday.  At that time they'll check his counts and advise on us on next steps.  We still have twice a week PT sessions that will be on-going for sometime.  The focus of those is to at least maintain the strength that he had gained prior to this second leg/ankle surgery and increase his core strength.
     With Evan's counts looking a little better until the latest round of chemo has had a chance to kick in we've been taking him out in public a bit more often.  On Sunday we went to breakfast and browsed one of the local stores.  Cristy took the boys to Menchie's later in the day.  I think I mentioned it in a previous blog, but the owners have been through the same challenges that Cristy and I are facing and have been very gracious to the family every time we've visited.  Needless to say it is quickly becoming one of our favorite establishments and our frequency will almost certainly increase.

Getting a little yogurt at Menchie's.

     From a day-to-day perspective I'm enjoying this lull in excitement.  Evan's energy level seems to be good despite being on two types of chemo drugs.  His appetite has decreased quite a bit, but we're not as worried this time due to the feeding tube that we're able to utilize in the evenings.  Overall his weight still seems healthy to me and he's able to eat enough during the day to get the vitamins and nutrients he needs.  Hoping another quiet week/weekend as we work our way closer and closer to Christmas.

Checking out the displays at And That....

Day 170 - Calling an Audible

     For those unfamiliar with the phrase "calling an audible", it's a football term where the quarterback changes plays before snapping the ball once he's had a chance to evaluate the opponents defense.  In Oncology terms our primary physician has called an audible.

Santa display at CHoA.

     In the short time we've been in treatment Evan has experienced more than his fair share of infections and setbacks.  We were scheduled to begin our second half of Delayed Intensification before another bone infection manifested itself.  Cristy had a long talk with Evan's doctor and he shared the fact that he's had many sleepless nights trying to determine the best treatment options for Evan.  What he ultimately decided on is a plan that scraps DI (for now) in exchange for drugs that are easier on Evan's body.
     The new plan closely mirrors that of Consolidation.  He'll take daily Mercaptopurine and weekly Methotrexate for the next 28 days.  His blood counts will be monitored throughout to ensure that this adjusted plan has the desired long-term effect.  Our doctor came to this conclusion based on Evan's responses so far to these drugs and because of other genetic factors discovered during Evan's initial bone marrow aspiration.

Getting into the Christmas spirit at home.

     During their discussion our doctor also advised that we start working with an Immunologist.  In the past when Evan's blood counts have recovered his body should have been able to defend itself, but something still seemed amiss.  The doctor thinks that Evan's immune system could benefit from a closer look.  Cristy had a similar conversation with one of the Oncology doctors in the past that echoed a similar sentiment, but she suggested waiting until after chemo had completed due to the fact it could paint a misleading picture.
     Evan met with the physical therapist a couple of days this week and she noticed more mobility in his ankle than prior to surgery.  She felt that the infection might have been limiting his movement.  As I've mentioned in earlier posts Evan seems more willing to walk now, although we're trying to temper his enthusiasm.  We're in wait-and-see mode until the infection has cleared.  Once the ID team gives their approval we can crank our PT up to 11.

When is Santa coming?

     The drugs he's on now will have a slower impact giving his antibiotics time to heal his leg, but will eventually decrease his counts.  We're still a bit unclear on what the next phase entails.  Could DI be re-introduced?  Will we move to Interim Maintenance?  We're not sure, but the doctor has some time to consider his options.
   

Day 167 - Wait and see

     To my regular readers of the blog and those interested in Evan's status I apologize for my delayed response.  Part of the lack of response was waiting to get more updates from the doctors and part of it is life getting in the way.  Let's go back to Sunday morning.  I was with Evan Sunday when we met with the medical team.  The main hold up on us being discharged was trying to secure our IV based antibiotic for home administration.  It was a holiday weekend creating even more confusion on when/if the medication could be sent to our home in time.

Daddy is being mean and forcing him to wake-up.

     Cristy and Evan have done a great job with his physical therapy work.  It sounds funny, but he seems more willing now to do the exercises post-surgery than he was prior to our admittance.  His leg and surgical wound look great to a layman like me.  That said, he hasn't complained of any pain or discomfort and we have to continually remind him not to bear weight on his ankle/leg/foot.  Cristy is meeting with his physical therapist for some work this morning and then heading to the hospital for another post-op checkup from his surgeon.  Assuming the surgeon is happy with Evan's progress he'll determine if weight bearing exercises can resume or the best course of action for healing.

Welcome to my lair.

     The Oncology team has been deliberating for four or five days now on what they feel would be the best course of action for his cancer treatment.  They've decided to give him a 50% dose of Vincristine to bridge the gap until Delayed Intensification restarts.  Until the infection is pretty much cleared they are being extremely cautious with his blood counts.  Once his blood counts bottom out it takes about two weeks to recover.  During his last blood draw all of his numbers looked solid and the increased WBC count will speed up his recovery time.

Locked and loaded.

     With us not having much to do at the hospital because of his ankle Evan resorted to being mischievous.  During a previous stay at the hospital one of our favorite nurses gave Evan the bright idea of filling up empty syringes with water and squirting unsuspecting people.  Luckily Evan doesn't have a future in magic yet so visitors were able to recognize what he was doing pretty quickly.  Most played along and let him soak them. I kept my distance and tried to remain dry as much as possible.  Evan's disposition throughout this whole ordeal has been very inspiring.  He's held up much better than I think I would have if put in the same position.  This week we'll be busy with appointments, but I doubt there will be any significant updates.  Should that change I'll try to be more prompt with getting something posted here.
   

Surprise!

Day 163 - Killing time

     As we suspected the medical team has decided to keep us here at the hospital this weekend.  Yesterday we received the best news possible in a couple of areas.  Someone from the surgery team came down to take a look at Evan's ankle and to change out his dressing.  Evan was a bit apprehensive about the process since the bandages were sticking to his scab, but after putting some saline on the scab the bandages came off with little effort.  His ankle showed very little redness and it looks like the antibiotics are doing the trick.

Looking good so far.  Antibiotics seem to be doing the trick.

     After the surgeon left we were visited by the ID team.  They found the proper antibiotic to administer by running sensitivity tests against the cultured bacteria.  This is great news because we can administer a drug that is specific to his infection and greatly reduce our chance of c-diff.  The only caveat is the ID team feels that IV based antibiotics are best for a while.  Once they're confident the infection in his bone is gone we'll switch back to oral antibiotics.
     Until the medical team is comfortable that the infection is gone we're holding off on restarting his chemotherapy.  CRP scores will continue to be recorded until his inflammation markers are within an acceptable range.  What that range is will also need to be tailored because Evan's immune system has shown that it's not "standard".  The lowest he's ever registered is a 2.5, but they typically require negative figures.
     The past few days we've been focusing on PT work.  A therapist stopped by yesterday morning and showed us some new exercises we can work with Evan on to keep his core muscles strong until he's able to bear weight.  Another area that we've been keeping a close eye on is Evan's appetite.  He's doing much better since the steroids.  All the nurses that have seen Evan in the past versus now feel like he looks great.

Working with the therapist.  He's not sure what to think at this point.

     Yesterday Evan received a card from his teachers and classmates at Hayes.  I think it was dropped off earlier this week, but Cristy and I hadn't checked the mailbox.  It was a very nice Thanksgiving card and it put a huge smile on Evan's face (and mine).  There's lots of holiday changes taking place at the hospital this week as the decor moves from Thanksgiving to Christmas.  One of the nearby buildings put a Christmas tree on their roof that Evan is able to see from his bed.  When we get back home next week we'll all perform a similar transformation at our home.

Card from classmates and faculty at Hayes.

     I doubt I'll have any other updates until Monday at the earliest.  Until then we'll try to keep our sanity by vegging on TV and finding various activities around here.

Working on his first gingerbread house this year.

Day 161 - Happy Thanksgiving!

     Happy Thanksgiving everyone!  Nolan and I spent the night at my parent's house last night and I got up here around 11:00 this morning.  Mama Pruitt sent me packing with lots of goodies that Evan is beginning to tear into.  So as not to have to shuttle Nolan all over the place for the next few days my parents agreed to keep him with them until Sunday.

Getting in some exercise with Mama.

     There have been quite a few developments today already.  Someone from Orthopedics came in early this morning and pulled the drainage line from Evan's ankle.  His CRP score had dropped from a 12 to a 7.  Naturally Cristy and I were pleased to hear this.  His recovery plan calls for no load bearing exercises for the next 4 - 6 weeks.  Cristy and I are going to try and find alternative PT work we can do on his other core muscles in the mean time.
     Shortly after my arrival this morning the Oncology team came through and let us know the blood cultures were starting to develop.  After the infection is under control they'll re-schedule us for the next half of Delayed Intensification.  Evan isn't showing any other negative symptoms other than the bone/leg infection which is encouraging.  He had a little wiggle room in his chemo schedule because of his body's response so far, so I don't think anyone is concerned with the timing yet.

First Thanksgiving plate of the day.

     Almost immediately after meeting with the Oncology team the ID team stopped in.  Their initial visit was to tell us about the cultures and that he's responding well.  They came back by a short time later and confirmed the infection is E.coli, which is fairly straight forward to treat.  The ID doctor feels keeping Evan on extended antibiotics is the best course of action going forward.  They're running sensitivities against the strain to help determine which antibiotic would be the best for treating it.  We should know more tomorrow.  I was hopeful we might get released tomorrow despite what was forecast earlier, but based on the everyone's non-committal for a date I'd bet it will be Monday still.

Mr. Giggles lighting up the whole floor.

     CURE was hosting a Thanksgiving meal today from Copeland's.  Cristy and I grabbed a plate and continued our annual tradition of the first to 10,000 calories in one day.  I mentioned to one of our nurses how much Evan liked pickles and she went out and got him his own jar.  He's since finished about half a jar all by himself.  I don't know if there is an adverse effect to ingesting this much vinegar, but I guess we'll find out.

I mustache you a question.

     While I wish we were able to spend Thanksgiving together as a family this year I'm confident we're getting treatment that will allow us to resume our tradition next year.  I hope everyone has a great day!

   

Making the best out of a difficult situation.

   

Day 160 - What I'm thankful for

     It's been a while since I've stayed overnight here at the hospital and I am quickly reminded how hard it is to sleep here.  This despite the fact that Evan's nightly medication list is very short compared to how long it was before.  He woke up a little sore last night due to the ankle surgery, but it was nothing that morphine and Lortab couldn't fix.

     I've gotten a chance to see some familiar faces while here and catch up with some of the nursing staff.  It's not ideal to have to be admitted into the hospital, but it's much easier when there are friendly folks that know our situation and how best to provide us excellent care.

     Today seems like a blur, but this is only because I've been busy the majority of the day meeting with the various medical teams.  The surgical team came by early this morning to check out his draining tube.  It was filled with blood, pus and mucus and the Doctor-fellow seemed pleased with how it looked.  This was followed shortly by a visit from the ID doctor.  Her and I had a long talk about his treatment ahead, if this infection could have been avoided and how we can prevent c-diff from developing this time.  Unfortunately the c-diff will remain a challenge until they're able to isolate the specific type of infection.

Spread your wings young man!

     As for the former topics above we'll likely be on antibiotics until Evan has completed the difficult phases of chemo.  His suppressed immune system is being pointed to as the likely cause of infection and thus unavoidable.  Under a microscope ID knows the cells are gram-negative, similar to e-coli.  If it turns out to be e-coli the doctor said it will be much easier to treat.  They're going to keep us here until next Monday out of caution and knowing his history with infections.  If all goes well and they're able to suppress the infection the medical team will likely move forward with the next half of delayed intensification early next week.

     The surgeon also made a visit to check Evan out.  At that time Evan was in great spirits and eating lunch.  If his inflammation (CRP) scores are down tomorrow they are going to remove the draining tube.  If not, they'll go back in for further cleaning.  Based purely on how Evan looked visually and the fact he hadn't experienced any fevers he felt pretty good about his CRP score being lower.  I asked about long term expectations for his leg and if we should be concerned.  The doctor said it's likely due to lower white blood cells counts and that it wasn't that unexpected during this phase of chemo.  He also mentioned that Evan's leg looked better this time around than originally.  Our physical therapy progress is probably lost though as we will have to wait for the ankle joint to recover from the surgery before restarting weight bearing exercises.

Acting silly for the surgeon.

     All in all it was better news than what I had prepared myself for.  Everyone who has looked at Evan today is surprised with how alert and nonchalant he is about the whole thing.  He made mention to me that he wanted to go home, but I told him not to worry and that mommy or daddy would be here with him the entire time.  CURE has a Thanksgiving day feast planned for the patients tomorrow and my parents are sending food up with me for Cristy and Evan.  I have a feeling we won't lack things to eat this weekend.

Music therapy time.  Let's get to jamming.

     This brings me to the title of today's blog, which is what I'm thankful for.  One of the things I've tried to make clear to Evan is that feeling sorry for ourselves won't make this ordeal easier.  Whining is another coping mechanism that I try to steer him from.  He's been so strong throughout and I'm certain he's handling this better than I would whether I was 5 or 55.  I mention this because it will come up in the bullet points below.  I really have too many things to capture them all, but I'll try to highlight the main ones that come to mind. 

I'm thankful for....

• a strong wife and two strong boys.  No matter what challenges crop up they've rolled with the punches and tried to bounce back more resilient and tougher than before.  All of them have even managed to keep smiles on their faces when they have every reason to cry.
• extremely supportive family and friends.  Whether it's time with us or an ear to bend everyone has been so giving of themselves.
• a job that gives me the flexibility to provide for my family.  Not only financially, but also lenient with my time away from the office.  This allows me to be there and take some of the burden off of Cristy and others.
• my team of co-workers.  They have all picked up my slack at different times never asking or wondering how it could benefit them, only trying to make sure it gives me cycles to devote to my family.  I'll be forever grateful.
• a strong-headed boy.  I've always treated him older than what he is.  Cancer is a terrible thing, but if he comes through this it will have been the greatest character builder anyone could think of.  He amazes me with his tenacity and inspires me to be better than I ever thought I could.  I know it sounds cliche, but the perspective I have for life now is only possible because of this life challenge.
• the health of my family.  All things considered we're doing all right and we'll continue taking things a day at a time.

     I hope everyone has a great Thanksgiving tomorrow!  Make sure to hug those you love and let them know how much you care about them.

Day 159 - Back to Go. Do not collect $200 - UPDATED as of 11/22 @ 19:53

     Our appointment yesterday didn't go quite as planned.  We noticed Evan's ankle was looking more red and swollen on Saturday evening.  Sunday it looked even puffier.  When Cristy got to the clinic on Monday morning she mentioned it to the medical team.  They moved forward with his spinal tap, but held off on the other chemo drugs scheduled.  There wasn't an opening at Scotish Rite so Evan was sent to Egleston for an MRI of his ankle.  As Cristy and Evan were pulling into the driveway last night after a long day the doctor told her he would need to come back in for surgery.
     It's about 10:40 a.m. on Tuesday and Evan is still awaiting a time for his ankle clean-up.  The Orthopedic surgeon said the MRI showed pockets of fluid and that his bone might be infected again.  If that's the case they'll need to drill in again essentially resetting our physical therapy progress.  They're also going to install a drain line similar to last time to allow for mucus and other material to clear out of his system.  The doctors don't know if his lowered immune system allowed this infection to grow or if the Keflex we were on before was keeping it at bay.

Taking his mind off of the hospital visit.

     The medical team is giving mixed information on what happens post surgery.  Cristy and I are preparing ourselves for spending Thanksgiving in the hospital.  This isn't the worst thing in the world.  We had already planned on spending Thanksgiving at the house to protect Evan so we won't have broken any commitments.  Additionally having him under watch while his counts bottom out gives Cristy and I a bit more piece of mind.  Guess we'll have to wait and see.
     While he's under for his surgery they're also going to change out his PICC line.  Both lumens have become occluded again preventing us from administering medicine through them or drawing blood.  Because of the infections the medical team isn't comfortable going with a longer term solution, such as a port.  I'm hopeful that we caught this early enough to prevent an extended stay and that his body rebounds quickly.  Cristy and I are both a little shaken by this, but we knew this was a strong possibility during his nadir.  His situation is pretty dynamic right now so I doubt I'll have another update until this evening at the earliest.

UPDATE
     The surgery team came to Evan's room around 12:30 to prep him and took him back for surgery around 1:30.  While under the doctor focused his clean-up efforts on the bone, ankle joint and surrounding tissue.  I was hoping for better news.  The report he gave Cristy was that the bone was infected as well as the joint.  The doctor applied antibiotics to the affected areas and put the drain line in to help with healing.

Recovering from surgery.

     Tonight the doctors are going to administer Zosyn as a catch-all antibiotic until the cultures come back.  They're working hard to put together a plan of action by the end of the week, which means we could be here through the weekend.  When I see the doctors tomorrow I'm going to try and get an idea of the severity of this infection and what risks there are short and long term.

PICC line dressing change.  The nurses were able to clear the occlusion.

     Besides the infection Evan seems in good spirits.  I'm frustrated and concerned for a number of reasons.  One of my concerns is this could potentially jeopardize the progress we've made in his physical therapy and set us back to square one.  The Ortho team didn't get us much in terms of marching orders so for now I'm going to keep Evan off his feet with his ankle elevated.  He's on Morphine to manage his pain and he's happy as a clam playing Minecraft on the Xbox.  I should be able to get more answers tomorrow and get a few more pieces of his healthcare puzzle.

Playing with Daddy.

Nolan re-familiarizing himself with the CHoA exhibits.

Day 157 - Weekend routine

     Another weekend is almost in the books, but this one included another trip to the ER due to fever.  Friday night around 8:00 Evan was wrapping up some PT work with Cristy and he mentioned he wasn't feeling well.  I asked if he was sick and he said no, but something just didn't feel right.  Initially I thought it was post-steroid effects on his body, but decided to check him out.  He felt warm to the touch.  Out of caution I decided to take his temp and confirmed that he was running a fever of 101.  We spoke with the on-call doctor and she asked us to bring him in, but said she could be convinced to wait out the fever a bit longer.  I told her it was fine and we'd bring him in.

Heart rate and breathing were elevated.

     By the time Cristy and Evan arrived to the ER his fever had already dropped to 99.  As per protocol they checked out his vitals, drew blood and prepared an IV drip of Zosyn.  Because his counts dropped quite a bit since Thursday they wanted to be very thorough with his diagnosis.  Interestingly his HR was high despite the lowering temp and his blood pressure was fairly low.  The doctors decided to keep him for the night for observation.  All of the counts in his blood that we monitor were low, particularly the Hemoglobin.  I mention it because the general thought was that his heart rate was up in order to adequately supply oxygen to his body since his Hemoglobin was down.
     During the night his blood pressure returned to an acceptable level, but his HR was still in the 140s.  The cultures didn't show any signs of infection so the medical team gave Evan one more quick once over and sent Cristy and Evan on their way at 10:00 on Saturday.  Cristy put me on the speaker phone with the NP that day and I got a chance to ask some questions.  The NP felt we'd be better off at home, especially since we're scheduled to be back in Monday morning anyway.  The doctors have suggested the very strong possibility of a blood transfusion.  They want to bump his numbers up ahead of the chemo and procedures scheduled for tomorrow.

Eating breakfast prior to discharge.

     After being released from the hospital Cristy took Evan to a CURE event at the new Menchie's in our area.  It was their opening weekend and they had an event from 11 - 1 where people could come and get some free yogurt.  As Cristy found out the daughter of the owner was a cancer survivor herself.  They saw Evan and took the time to talk to him and Cristy for a bit.  It was a good treat for him considering he had to spend another night in the hospital.

Enjoying some Menchie's.

     I'm anxious to see his counts tomorrow since I'm pretty confident they'll be down even more.  The next couple of weeks include daily chemo shots, oral chemo medications and a few IV based infusions.  We've already tried to prepare Evan that he's going to feel pretty bad following some of these sessions.  He's been tough throughout and I'm hopeful that he'll power through this like he has with the previous phases.

Day 155 - The Indestructible Clot

     It's been a quiet week at the house which is something this family needed.  On Thursday morning Evan had his last steroid treatment.  There may be more in other phases of chemotherapy, but for the next 30 days we're done.  He's been able to put weight back on and put himself in a healthier spot overall.  In the pictures he'll appear fat, but much of this is water weight and bloating due to the steroids.  He should return to a more normal size next week.

Relaxing in the basement with Daddy.

     Yesterday Evan had blood drawn to check his counts and some of it was sent to verify that his Voriconazole levels are still therapeutic.  We won't get those results until next week at the earliest.  His blood counts have remained fairly stable despite the chemo.  As his cells continue to die off his nadir will hit next week.  The bumps on his skin are mainly scars from the surgeries and even while feeling his arm we're unable to find any lumps.  It would appear the Voriconazole has suppressed this very tricky outbreak (finally).
     In addition to the blood draw Evan also had an ultrasound done on his chest to check the status of his blood clot.  Unfortunately it's still there despite the blood thinners we've been on since July.  The nurse Cristy spoke with couldn't comment much further on it because it's not her field of expertise, but a thrombologist is being consulted.  I was hopeful we might see a reduction in its size or eliminated completely so that we could pare back the twice a day Lovenox shots.  After talking to Cristy about it my first question was how does someone fall into a career studying clots?  But I digress....
     In order to put Evan in the best possible spot to remain healthy for the holidays we had to reluctantly decline spending Thanksgiving with the family.  Cristy and I wanted some form of normalcy so we've decided to cook a scaled down dinner here at the house on that Thursday.  It won't be the same, but keeping Evan out of the hospital is our main objective.
     To give Evan a break from sitting around the house Cristy found a matinee of Trolls and took him earlier this week.  I was glad to see him get out while he can and do something he really enjoys.  We bumped PT back up to twice a week.  I'm toning back my regimen with Evan.  I was pushing him hard this weekend and earlier this week, but will give the plan more time to take effect.

The next movie we're likely to try and go to.

     On Monday Evan has another appointment which will include a spinal tap.  Based on what Aetna will cover all at once, versus spread out over time, will determine if he has another appointment on Wednesday or not.  I'll explain in a later blog.  Until then I hope everyone takes care, enjoys time with family over the next week and takes a moment to reflect on what they're thankful for.