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.