Day 75 - Round 3 begins

     Despite beginning his 3rd round of chemotherapy I'm pleased to report that today was fairly uneventful.  Evan received another PICC line and had vincristine and methotrexate administered late this morning.  He'll receive a slightly reduced vincristine dosage each session because he's still taking two doses of voriconazole daily and both are metabolized through the liver causing stress to this organ.  The methotrexate dosages will increase each session and his enzymes will be monitored for toxicity in his blood.

During clinic visits he's not far from his iPad.  Thanks Steve Jobs.

     The blood counts for this past week looked good and well within acceptable norms.  There is still some concern that Cristy, the medical staff and I have regarding Evan's lack of appetite and subsequent weight loss.  From last session to now he went from 18.8 kilograms to 18.9.  This is a modest increase and I think all of us, including Evan, need to work towards a regimen that minimizes his nausea and vomiting.  Easier said than done I'm afraid.

Scarfing down some Ramen noodles.

     Evan's oncologist for this week said we could pull his daily bentyl medications.  This is a drug used to prevent stomach cramping and was supposed to help with some of the discomfort he's been feeling while eating.  Unfortunately it was ineffective, but on the plus side he doesn't have to take it anymore.  We're going to increase his periactin dosages to help stimulate his appetite.  Even though the pain will likely still be there it should help us get more calories packed in over time.

Passing time at Toys R' Us.

     Standing has been the medical order since last Friday and it's become less of a chore for Evan.  That's not to say he doesn't fight us on his physical therapy work, only that his legs seem more stable.  For the remainder of this week and onward Cristy and I will try to keep motivating him to walk, even if it's with the assistance of his walker.  Moving under his own power just isn't in the cards for at least the next couple of weeks.
   
     Now that we're in our PT phase of recovery it's only fitting to add another Rocky reference to our soundtrack.  I considered Eye of the Tiger, but that's cliche even for this situation.  I leave you with a song called Going the Distance by Bill Conti.  I hope it provides you with a little extra motivation to go that extra step if you're feeling down.

Day 73 - Rehabbing mind and body

     There have been no significant health updates for Evan since Thursday.  With his bowel movements becoming solid we were able to pull flagyl, in addition to completing his 6-MP medication for this round of chemo.  Tuesday Evan will get a new PICC line installed along with the beginning of his next phase of chemotherapy.  The PICC line brings a new set of challenges for Cristy and I due to the cleaning and maintenance required.  I was in favor of getting a new port installed over the PICC, but the doctors want to hold off on that until the clot in his chest has cleared.

Packing on some calories.

      To friends I've talked with since we've all been home one of the common comments I receive is "I bet Evan is happy to be home."  Based on what I see my response is typically "Not as happy as you think."  Granted I know he'd prefer to be home over the hospital, but mentally he's still adjusting to life as a cancer patient.  The daily drugs he must take on scheduled times frustrates him, which in turn causes him to drive Cristy and I crazy.  All tasks are a challenge right now from taking medication, to eating, to bathroom breaks, to walking, to brushing teeth.  All of our efforts to improve his health are met with strong resistance.

     In the past we've mentioned to him that this will be our life for the next 4 months, possibly longer if maintenance has any surprises that we're not aware of yet.  While we've been home I haven't brought the timing discussion back up.  This is mainly because I want him pushing forward and by knowing that he's in store for several more months of medication and physical therapy probably would discourage him and make the job Cristy and I have in front of us more trying.

Arts and crafts time with the boys.

     As with any five year old he's enjoying some of the day-to-day activities we're forced to let him partake in; namely the movies and video games.  Cristy has been trying to think of creative alternatives to help keep him mentally sharp and push him further along in his physical recovery.  My goals are typically centered around challenging his will to fight and take the steps necessary to heal.  Naturally all of this is done with love and his well being as my primary focus, but I doubt he's going to nominate me for any father of the year awards.

Fighting through some discomfort.

     Goals for the coming week are better control of Evan's vomiting and nausea, weight gain, physical therapy and help alleviate any side effects from this next round of chemotherapy.  On a lighter note I'm looking forward to my favorite time of year, which is college football season.  Games begin Thursday evening and I'm already giddy with excitement.  Go Dawgs!  Go Herd!

Day 70 - Round 3 plans revealed

     Cristy and Evan went to CHoA today to complete his second round of chemotherapy and to learn the specifics for the next phase.  The main concerns we have at the moment is the nausea and vomiting that Evan is experiencing daily, leading to significant weight loss and his lack of mobility.  PT is scheduled for Saturday morning, however in the meantime we've been told we can remove his walking boot and maintain the exercises we've been performing over the last week.

Waiting to get called back to the OR.

     The day started with Evan's final LP (spinal tap) for this round, followed by an infusion of IVIG to help boost his immune system.  We received the blood counts as of this morning and they looked really good.  Platelets, WBC and ANC were all healthy, while his hemoglobin numbers were at a very comfortable level.  I feel confident that once he starts eating a more balanced diet again the hemoglobin counts will return to a normal level.
     The next round of chemotherapy will begin next Tuesday and run over two months.  During this time he'll have five sessions, each consisting of IV based methotrexate and vincristine.  The drips will both be short in duration and we're told it will affect his blood counts, but shouldn't bottom him out.  Cristy and I will keep a close eye on the counts each session and try to monitor and adjust his physical activities and social interactions accordingly.

Evan heading to surgery with a service dog escort.

     Evan's doctor gave us the approval to drop the flagyl and he only has one more night of 6-MP.  These seem to be the two drugs that cause the most problems with his stomach.  The doctor's advice was to focus on walking again and to pump calories into him any way we can.  There's no smoking gun for the nausea and stomach pain.  The staff feels that Evan was sick for so long that his digestive track likely has to sort things back out and the doctor felt confident this would happen given more time.
     In addition to dropping the two nausea provoking drugs we will also be able to start weaning off some of the others, such as the ativan and potentially the zofran.  Personally I'm not convinced the bentyl is doing anything one way or another, but we'll continue administering it for now.
     Evan seemed relatively at ease with his appointment today.  I suppose the fact that he and Cristy left around 6:00 this morning didn't hurt.  The nurses at CHoA made a nice card for him and the family experience team brought him some gifts to help celebrate his birthday.  I know some of the nurses follow the blog and I want to say thank you so much!

Catching a quick nap.

     I also want to say thank you to our next door neighbors and Evan's teacher for stopping by to check on him and wish him well.  The teachers and students in Evan's kindergarten class made him a laminated birthday book with happy birthday wishes and pictures of themselves.  When the day comes that Evan is able to attend school in person he should be able to put some of the names with the faces.  In the meantime we'll continue to heal up and create as many great memories as we can.

Fighting with a smile on his face.

   

Day 69 - Happy Birthday Evan!

     As the title suggests today is Evan's 5th birthday!  He's pretty excited, but he has expressed frustration that we're not doing a party for him this year.  We told him to try not to fret and that it was in the best interest of his long-term health.  I believe a few visitors are stopping by at various times today to help celebrate with him.

Receiving 1 of 2 daily Lovenox shots.

     Since the last update Evan has made minimal progress.  The vomiting and nausea are still a concern, although he has good and bad days.  His weight continues to drop and I can't wait for Friday so that we can complete this round of chemotherapy.  With any luck his appetite will increase shortly thereafter.
     The sores on his skin look good and are healing as expected.  Physical therapy is slow going for now.  Evan is making progress, however it's baby steps (no pun intended).  He's able to stand for short periods of time and walking is a struggle.  The remainder of this week is pretty busy.  Tomorrow is an all-day affair at the clinic.  Friday the Home Bound teacher is coming to the house to work with Evan and Saturday is a formal PT session to work on Evan's mobility.

Gaming in his Professor X chair.

     Wrapping up today's short blog with one more happy birthday wish for my little fighter and I hope he's able to enjoy his special day.  We love you buddy!

Shirt Cristy had made for Evan.  Donatello shaped like a 5.

Day 66 - The Medicine Cabinet

     Caring for Evan without the assistance of the medical staff at CHoA has been an eye opening experience.  Each day Cristy and I are responsible for administering 19 doses of various drugs, not including any anti-anxiety or pain killer medicines, which we provide as needed.  We're still trying to iron out some of our timing so that it allows for meals, physical therapy activities around the house and rest periods.  Vomiting is still a concern, but it's not as frequent as it was a week ago.  Either Evan is adapting to the drugs or we're getting better at managing the side effects.

Most of the drugs that Evan must take daily.

     Evan has been quite a handful.  He's anticipating the shots and other drugs even more so than when he was hospitalized.  He proactively starts complaining of stomach pains and vomiting before the drugs are even given.  Combine that with his muscle deterioration and his fear of walking and we've certainly got our work cut out for us.  Cristy and I understand why he feels the way he does, however it doesn't stop us from trying to push and motivate him to take the steps necessary to get better.

Scheduled meds for today.

     The final spinal tap for this phase of chemotherapy is scheduled for Thursday.  While at the hospital Evan's primary doctor is going to sit down with Cristy, while I'm on speaker phone, and share with us the specifics of the next round of chemotherapy.  As I understand it Evan will get a 10 - 14 day break in between to allow for some healing.  As someone who is concerned with future infections I'm hoping for a moderate plan, but I also know that eradicating the cancer is our primary goal.

Getting some fresh air.

     All that being said, we're still ecstatic to be home.  These are all manageable situations and we've certainly seen Evan in worse shape before.  Within the next 7 days we'll be able to start peeling back some of his medications; namely the 6-MP and flagyl.  Depending on how his body responds we can also potentially pull the Ativan (anti-anxiety) and Zofran (anti-nausea).  Now that we're back home I'd expect the blog entries to decrease in frequency.  If you don't see many updates then treat that as good news or status-quo at the very least.  Nolan is as thrilled to have his big brother home as we are.

Family time!

   

Day 64 - The eagle has landed

     The whole family is finally back home!  This is the first time we've all been at the house since June 29th and it is a great relief.  Evan's trepidation to take his medicine has reached its pinnacle and I'm optimistic that he'll be more comfortable given some time to get back into a routine at home.  The medical team decided to postpone removing his PICC on Thursday during his other procedures, however they performed this task today prior to our departure.  Evan will get another port implanted in the near future upon eliminating some of the remaining pockets of pus he has internally.

Evan having his PICC line removed.

     I had an opportunity to speak one-on-one with one of the Nurse Practitioners that I admire and respect quite a bit today.  Cristy and I both tried to express our gratitude for helping get our son healed up enough to go home.  There's still a long road ahead in both his cancer treatment and overall health, but it's safe to say he's improved everyday for the last two weeks.  She shared with us how concerned the medical team was for Evan during this most recent stay and that they were collectively thrilled to see him turn the corner and get to the point we're at now.  I want to say thank you again to the entire team for helping bring my son back home where he can continue his journey.

Our home away from home.

     Evan is still a bit ornery and I'm chalking it up to the medications, fear and being too young to know how to verbalize his true feelings.  There's no doubt he's frustrated and wants this ordeal to be over and done.  The onus falls on Cristy and I to help paint a realistic picture for him so he can understand we're going to be heavy on the drugs at least until December.

Leaving the hospital in his new wheel chair.

     Until Evan's ankle is healed and his leg strength is back he'll be bound to his walking boot, wheel chair and walker, depending on the situation.  Cristy and I will be responsible for the PT work for now and although not confirmed my guess is we'll continue with the CHoA team when we go back on Thursday for his clinical work and next spinal tap.  The blood counts that were shared with us today were very encouraging and show that his body is still responding well from a cancer point of view.  In a future blog I'll share his daily drug schedule along with what role the drugs play in his recovery.

We're finally home!

     What does the weekend hold in store for us?  For Nolan and I we'll be heading down to my parent's house tomorrow to help celebrate my niece's birthday!  Happy 3rd birthday Lily!  Cristy will hold down the fort for the morning and afternoon and when I return I'm hoping we can build some momentum on improving Evan's mental state and overall comfort level.  I'd like to see us nurture his appetite to a more acceptable level and continue our physical therapy.  It goes without saying but keeping him healthy is also an utmost priority.  The family and I could use some stress free days so fingers crossed we can get back to some normalcy.

Relaxing after sitting in rush hour on the way home.

Day 62 - Outstanding items

     Today has been almost a carbon copy of yesterday, with the exception being that we have more information.  Evan's LP (Lumbar Puncture, aka spinal tap) is scheduled for 10:00 a.m. tomorrow.  The medical team considered several options and decided to pull the PICC line completely, but not implant another one or a port at this time.  Everyone feels this will give his body enough time to clear out any remaining infections that haven't shown up on blood tests until his next IV based chemotherapy is scheduled in two weeks.  While under the OR team will also remove the sutures from his leg and perform an ultrasound on his previous port site in his chest to see if the clot has cleared.

It's easy to take standing for granted until it's a burden to do it.

     Speaking of chemotherapy, here is a brief synopsis of how we look for the next 40 days.  Evan will continue taking oral 6-MP (Mercaptopurine) until next Wednesday.  He's scheduled for one more LP next week and that will conclude Phase II.  After a brief 7 - 10 day break he will begin his next phase, although this one is subject to change.  Evan's primary oncologist feels that given his blood counts and the risk profile shown from his bone marrow results that paring back his next phase won't pose a significant problem.  For most patients Phase III involves increasing the dosage amounts until the blood becomes toxic.  Toxic?  What do you mean by that?  In short the dosage sizes would increase each week until his body was unable to recover the healthy blood cells.  Think of it as a medical approach to testing the bone marrow's limits for cell creation.  I don't know what his revised plan would entail, but we'll find out more soon.

Day 2 of school.  The dress code at Hayes is stricter than here.

     All of this sounded good to us, but what made it better was the prospect of giving us a release date of either later this week or early next week.  After he comes out of anesthesia tomorrow his vitals will be monitored and if everyone feels his BP, temperature, heart rate, etc. meet acceptable levels then they'll begin the discharge process.  Cristy and I have kept the house clean, with the help of some friends, but we'll almost certainly want to give it a deep scrub before feeling comfortable that it will be acceptable for Evan.
     What outstanding items remain?  Here is a rundown of what's left to be resolved:

• Continuation of physical therapy work on Evan's right ankle.
• Resolution of his on-going stomach pains, including the elimination of "loose" stools.
• Support his appetite and increase his caloric intake.
• Monitor his nausea issues and administer medication as needed.
• White-glove treatment of the house.

     None of these are life threatening so I don't feel too overwhelmed.  I will say that if we had to return home with the PICC line there were steps to prevent infections and clotting that could have been daunting and tedious.  I'd hate to have missed a step and put us back into a precarious position.

Day 61 - Is TMZ hiring?

     We're continuing our wait-and-see approach with Evan and his treatment plan until Thursday.  He's been without fevers since Sunday night and overall is making positive strides in his recovery.  The day started off a little bumpy with me being overly hard on him to try and eat breakfast, which he promptly threw up.  Once we got past that first hurdle and gave Evan some Ativan (anti-anxiety medicine) it was a very productive day.

The start of our laugh session.

     My parents came by to drop Nolan off for us after spending the weekend with them.  When they arrived Evan was happy and playful and that only continued as the Music Therapist came in and gave him his own harmonica.  We sang and played a few songs and got everyone involved.  Our commotion drew the attention of our favorite Child Life Specialist (Katie) and she came in to join in the fun.  This was followed by playtime with one of our favorite nurses (Jackie) and eventually the medical team.  During this most recent stint they had never gotten a chance to see Evan acting himself.  The boys lit up the room with their smiles and had the staff laughing, allowing us to forget for a brief moment that we were in the hospital.  These are the memories I cherish more than any others.  We were told later this afternoon that our visit really brightened their day.

Disturbing our neighbors with loud music.

Giggle time with Jackie and the boys.

     Cristy met with the Hayes Elementary staff this morning to devise a plan for keeping Evan up to speed with his kindergarten curriculum.  Until he's able to attend school in person we'll have a teacher work with Evan at home for a few hours per week.  In the meantime Evan began working with the CHoA teacher this afternoon.  She was very pleased with his reading, logic and comprehension skills at such a young age.  Cristy and I were very proud and it made me thankful that Evan gets his scholastic aptitude from his mother.

Working on his reading with his CHoA teacher.

     Upon returning to his room relaxation would have to wait as he was promptly thrown into PT with a hospital therapist.  Make no mistake it was hard work, but from what I understand he fought through every exercise despite the pain and discomfort he was feeling.  The swelling is almost non-existent in his ankle and he rarely mentions any soreness.  Once the wound site is fully healed and he has worked through the range of motion issues he will then be ready to start building his muscles back to the state they were before this prolonged bed rest.

One of many steps towards upright mobility.

     Thursday Evan is being sedated for the administering of his spinal chemotherapy.  The question that the medical team is discussing internally is whether to take out the PICC and put another one in or if he's healthy enough to move forward with another port install.  Should the team go that route I'd be shocked if the fevers don't return for a brief period.  His blood counts and inflammation scores look outstanding at the moment.  This would lead me to believe that his immune system could more effectively clear any potential infections before they can cause serious problems.  We'll know more tomorrow.
     Wrapping up with a few more pictures.  If my IT job fizzles out at least I know I have a potential career in taking candid photos of people with low quality cameras.

Shape and number recognition exercise.

More work with the physical therapist.

Enjoying his school work this afternoon.

   

Day 60 - FAQ

     It's been a slow day at the hospital, but I wanted to provide a health update for those following along closely at home.  Evan is doing fine and continues healing up.  The doctors are starting the reduction in morphine (again), all of his antibiotics are removed (again) and the CT scan was pushed back until later this week.  His next spinal tap will be Thursday and while under they're likely going to replace his PICC due to a clot or kinked line.  He has not had a fever since last evening, however I'm fully expecting we'll see more over the coming day or two.  The source of the fevers is still unknown.  Evan is stable and the doctors simply want to monitor the next 48 hours and see where we're at before doing any more discovery or making any changes to his drug treatments.

Acting nutty before bed.

     With today being a quiet day I thought it might be a good chance to add some human emotion to the blog and give people a different point of view on things.  Up until now I've been rather tight lipped about my feelings.  I'm sure Cristy is fairly similar to me in many regards, however I don't want to speak for her or put words in her mouth.  These responses will all be mine.  If you're only here to get an update on Evan's health status then I bid you a fond adieu....

FAQ (Frequently Asked Questions)

     The content below is the questions and comments we get asked most often - and my general thoughts on said comments.  One more disclaimer here; some of the responses below you've likely seen in other blog entries or heard from me in person, so I apologize for any repeat material.

One of the koozies I had made based on Cristy's golden ribbon design.

1.  How did you find out that Evan had leukemia?

Evan had been experiencing fevers back in May - June and after our third trip to the pediatrician the doctor noticed him grimace hopping off of the exam table.  Joint pains are a common symptom of many things, leukemia being one of them.  Upon seeing this the doctor ran blood work and this set us off on this life changing journey.

2.  Did you catch it early enough?

The interesting thing about leukemia is as long as it hasn't spread to the lymph nodes or spinal fluid there's not much more damage it can do.  Purely focusing on the blood the worst it can do is bottom out your white blood cells, platelets and hemoglobin.  I've said this to many folks in the past, but leukemia has never killed anyone, it's the infections and complications from lacking these important cells that causes death.

3.  Are the odds pretty good Evan can beat it?

I really considered not putting this question in here for superstitious reasons, however that would be disingenuous since it is a question we hear often.  There are many factors that come into play with leukemia, particularly in children; age, whether the leukemia cells have moved into the spinal fluid, what type of leukemia it is and markers and proteins in the blood.  The first phase of chemotherapy is called Induction and it's purely meant to put the affected into remission.  Afterwards a bone marrow test is done to check for the proteins, enzymes and other building blocks that form leukemia cells.  You may recall me mentioning it in a previous blog.  This test yields a Minimum Residual Disease (MRD) score and a risk profile that details the likelihood for long-term remission.  From there the rest of the patient's chemotherapy plan is based on whether the person is high or low risk.  I won't give the percentages for Evan, I'll only say he's considered medium-to-low risk at this time.

4.  What happens if the cancer returns?

In the event that there is a relapse Evan would undergo another round of much harder chemotherapy.  Larger doses, more concentrated, different drugs.  Long story short it is much harsher on the patient.  If that too failed to rid the body of leukemia he would need a bone marrow transplant.  The donor most likely to match Evan's bone marrow would be his brother Nolan.

5.  How are you and Cristy holding up?

We have good days and bad.  What seems to help me is focusing on the phase of chemotherapy that we're in at that time.  Working with the medical team on the game plan for that particular day allows me to concentrate on the task at hand.  I've found that if I start thinking about the future, the what ifs, it really is counterproductive.  I've resolved myself to the fact that for the next three years I likely won't sleep well, but as long as my son continues to battle and make progress each day it helps my disposition tremendously.

6.  "I don't know how you do it, I couldn't do it."

Yes you could.  Everyone could.  I've had this conversation with a few close friends, most recently this weekend with my buddy Chris.  To him and anyone else I say you absolutely would rise to the occasion.  I explain it like this.  You receive the news and naturally you're devastated.  You cry and rationalize it the best you can.  You can grieve all you want for as long as you want, but guess what?  Your loved one still has cancer and needs your support.  I'm confident that given the same circumstances once each person accepted this fact they'd put a plan together and all their decisions would be in the best interest of their loved one.  Personally I want to be strong for my son so he'll keep fighting during his most difficult times.  This experience has taught me that when put in strenuous situations people will rise to the challenge.

7.  How long is Evan's treatment plan scheduled?

Evan will undergo chemotherapy for the next three years.  For the first six months the drugs are varied, quantities vary, timing/frequency varies.  After that he'll enter into the phase called Maintenance for two and a half years.  This involves once a month treatment to keep his bone marrow healthy and to prevent the cancer from coming back.  One fact that I found interesting is a girl's plan is only two years in duration.  Females have a slightly lower relapse rate.

8.  "How can we help?"

Let me start by saying this whole experience has been eye opening for a number of reasons.  My faith in man has been restored.  There are so many volunteers, hospital staff, councilors, clergy, family and friends who have reached out to us and helped us.  This has been inspirational to me and makes me strive to be a better person and one day pay it forward.  At this time Cristy and I are evaluating the cost impact to our banking accounts with our hospital social worker.  Donations are a slippery slope because of the tax and financial aid ramifications.  We truly appreciate everyone's thoughts and prayers and that is all we ask for.  Evan is blessed to have so many people, near and far, pulling for him to make a full recovery.

9.  What limitations will there be on Evan during chemotherapy?

During the first six months I suspect we'll handle him with kid's gloves.  I certainly won't be pushing for him to make a quick return to school.  Any activity that could leave him vulnerable to physical injury will likely be out of the question.  Once we're in Maintenance the doctors assure us his blood counts will recover to an acceptable level, his hair will grow back and he'll be able to resume a fairly normal lifestyle again.

10.  Are the past two months typical for most leukemia patients?

No.  Evan has pretty much hit on the majority of the side effects from most drugs.  In addition to that he's had a difficult time clearing the infections he developed during his nadir.  We've spent the last month+ clearing these infections and the side effects from the medicines he's been on for pain management and chemotherapy.

Day 59 - We're getting the band back together

     Evan's health is like a band way past their glory days, but looking to cash in on one more tour.  The members reluctantly agree to this arrangement because they want one more payday.  I envision the cells in his body having a conversation like this: "Hey, I heard the doctors say Evan is going to get released soon.  Quick let's get the band back together and give this kid some more fevers, it will be a riot!".  As you can probably tell from this diatribe Evan's fevers have returned.

Cristy and Evan doing some PT work.

     Last night shortly after my last blog entry his body started experiencing fevers about every four hours.  Tylenol eventually broke it each time, but as soon as the next dose could be given his temperature would begin to rise again.  This seems to coincide with two other changes.  His morphine being reduced could cause fevers, as well as our old pal c-diff.  Based on the watery and mucus filled bowel movements my money is on the latter.
     We received some of the blood results back and there is something causing increased inflammation in Evan's body.  Testing of the stool samples surprisingly came back as negative for c-diff.  The medical team is going to collect another sample and analyze it for other strains of c-diff or bacteria.  In the meantime oral vancomycin is back on the menu a few times a day.  Think of it as the groupie that is driving a wedge in between the band members.  The one thing that can prevent our departure this week has reared its ugly head again.
     If you look beyond the big set back it would be easy to miss some good things happening right now.  Evan is definitely back to his old disposition.  Naturally he's terrified of the needle pokes, but other than that is playful and talkative.  His legs and arms are healing very well.  We noticed him bearing minor weight on the ankle that was operated on without pain.  Stomach pains are still there, however if c-diff is confirmed it could be a factor.  His appetite hasn't returned, although when Cristy and I insist he seems to be eating without as much pain as he had earlier this week.

Checking the health status of his surgical wounds.

     Tomorrow there is a CT scan scheduled to review his lungs and stomach and I'm sure the doctors will give him a closer look.  There was also talk from the ID team today about switching his IV based drugs to oral so that Evan can begin getting used to them for when we eventually get released.  The revised chemo plan is still in effect and we'll find out later this week how future spinal tap sedation will be given.  Let's hope this band decides not to play an encore.

Enjoying some computer time and eating breakfast.

Day 58 - Getting the sillies back

     The last 48 hours we've seen progress in some areas and regression in others.  Evan's WBC for his spinal fluid showed a significant reduction in cells, meaning whatever foreign agent was in his spinal cavity is almost eliminated.  The doctors believe his immune system fought it off successfully.  In addition to that Evan's foot was deemed healthy and healing as expected.  While the doctors had him opened up they decided to flush his ankle out with saline, apply some topical ointment and sealed everything back up.  The plan is to remove his ace wrap sometime today, but will leave the steri-strips to keep the entry site closed.

Playing with Silly Putty and Playdoh.

     We had two mild fevers about 8 hours after his surgery was complete.  This could have been brought on by the anesthesia or from the medical team entering his ankle.  Evan's last fever was at 7:30 a.m. on Friday morning.  The sores and sutures on his arms are starting to diminish and heal.  If he continues without the fevers the medical team is stating they're going to release us next week.  This was music to our ears and we're anxious and optimistic that Evan will continue to progress.
     Now on to the not-so-good news.  The stomach problems have returned in a big way.  Evan's morphine drip was turned off yesterday afternoon and unfortunately we're seeing now it was masking pain in his stomach and ankle.  The GI team doesn't seem too concerned and want to stay the course by continuing to foster his appetite, administering anti-nausea and anti-cramping medicine and giving him twice a day prevacid.  As a stop gap for the weekend they have turned the drip back on, but at a much lower level.  Evan's vomiting is still a concern as well.  Until the c-diff and this phase of chemo are done it's difficult to say if either are the catalyst for that.

The boys spending a few moments together.

     It's not confirmed, but Cristy and I believe that the only thing that will keep us here past next week would be more fevers.  I don't know if I'd say Evan is traumatized by his experiences of late, but he's definitely scared when a doctor enters the room.  Obviously the teams see that and want to get us out of here if at all possible.  The techniques that the psychologist shared with us earlier this week don't seem to be working in allaying his fears.
     Evan's personality has returned in a big way, assuming there isn't a doctor in the room or he isn't experiencing belly pains.  He's acting silly and playful again.  The smile that we love to see is returning.  He's becoming more alert and communicative with Cristy and I.  During our reading and writing time he's able to pick up where he left off cognitively before leukemia took hold of our family.  Getting back home will do wonders for his confidence again so I'm very hopeful that we're able to avoid any more surprises.

Silly face time.

Day 56 - Weaning off the morphine

     Evan's procedures this morning went well.  The doctors extracted spinal fluid for analysis of the WBC counts, administered chemo and did some clean-up/maintenance on his ankle.  We're still awaiting results on the WBC count, but the doctors were pleased with how his ankle was healing and only had to drain some fluid from it.  There was a fair amount of swelling in his foot yesterday which prompted this add-on inquiry, although I think Cristy and I were to blame for this because we kept him upright for a good part of the day yesterday.

Pre-op for latest spinal tap and ankle examination.

     We're continuing to see a reduction in fevers, although I make that statement with a bit of caution.  With the surgeons opening him up today while under anesthesia it would be completely normal for him to have a low-grade fever.  Factually speaking his last fever was at 4:30 a.m. on the 10th.  The high temps he's exhibiting now usually level off around 100 degrees fahrenheit, which is again another step in the right direction.
     The medical team continues to lower his morphine drip and plan on pulling it altogether either tomorrow or Monday.  Because he had his ankle examined this morning they decided to leave it in place for now.  His blood pressure figures are more in line with a child his age and that's very reassuring for us.

Another day in The Zone at CHoA.  Cristy selecting a gift basket.

     With all of this progress Cristy and I are encouraged by how he's looking and responding.  His appetite is still non-existent.  The doctors have added a couple new drugs to suppress nausea and stimulate his appetite.  They're giving these drugs a couple of days to work before deciding whether to put him back on TPN or not.  Some of the resistance to eating is most likely due to the vomiting that accompanies most of his meals.  The c-diff and one of his chemo drugs cause vomiting so it's unclear right now which one, if not both, is the culprit.
     Cristy, Evan, Nolan and I met with a family psychologist today.  Evan is becoming quite gun shy from being in the hospital so long and the medical team felt that a meeting with the psychologist was in order.  We discussed how he's doing, how we got here and learned a couple of techniques to try to help with his anxiety during needle pokes, administering drugs or ahead of procedures.  My poor son has been through so much that I can't blame him for getting nervous.
     I wanted to wish my baby boy Nolan a happy 2nd birthday!  I took him shopping this morning, picked up his Paw Patrol cake and met up with Cristy and Evan at the hospital to celebrate.  Cristy is taking him to Catch Air later to burn off some of the cake calories.  I've said it before, but we're so lucky that he is carefree about everything.  His disposition helps make a horrible situation a little easier to manage.  Nolan's laugh almost always puts a smile on my face, even during tough times.

Nolan and I getting ready to celebrate his big day.

Nolan having fun at Catch Air.

     Wrapping up today's blog with another song that has motivated me throughout this journey.  The song is Lean on Me by Bill Withers.  I dedicate this song to so many people that have helped us over the last 2+ months.  Even if I haven't bent your ear that doesn't mean this song isn't for you.  The outpouring of support has provided us with strength during the tough times, so I close out today with a huge Thank You!

Day 54 - Pharmacy 101

     Today's update should be very short since there's very little to report on.  The ID team is pleased with his c-diff progress and has decided to pull his daily oral vancomycin doses.  This means we're completely off of any antibacterial drugs, only the anti-fungals remain.  It also means the medical staff doesn't have to wear gowns and follow stricter cleanliness guidelines while attending to Evan.  His skin continues to look better each day and the nursing team is doctoring his surgical wounds to help shorten his recovery time.

Reading and writing to keep up to speed with his kindergarten classmates.

     As we've lowered the morphine drip volume Evan is starting to complain of stomach pains again while eating.  We mentioned it to GI and they're going to monitor over the next 48 hours as we start to eat more solid food.  Evan's TPN (food via IV) is also being removed in hopes that his appetite will return.  He's slowly consuming more solid food, but it's a bit of a chore for Cristy and I because he doesn't have much of a desire to eat.  His stomach size looks almost back to normal as the c-diff slowly fades away.

Chewing straws now to prevent him from biting his lips.

     The Oncology team has received approval from the surgeons to move forward with Evan's spinal tap procedure on Thursday.  The agreement was to perform this work while he was completely sedated under the supervision of an anesthesiologist.  Evan is due for these injections for three consecutive weeks.  A CT scan will be performed next week to see if his lungs are healthy enough to do these under a twilight type sedation.  We were given his blood counts this morning and his hemoglobin was low, so Evan received a blood transfusion this afternoon. The WBC and platelets were high which caused us to pause.  They assured us this wasn't anything alarming and that his blood will continue to see highs and lows while battling infections, receiving chemo and having daily blood work done.

Music therapy time using the maracas.

     Evan has kept Cristy and I on our toes as we try to learn about the various drugs going into his body, along with any side effects and how his body responds.  My wife being the meticulous creature she is has been keeping track, although we're pretty sure that some drugs are missing from this list.  It's amazing that a four year old can handle so much.

• vfend (voriconazole)
• micafungan
• lovenox
• prevacid
• morphine
• phos-nak
• TPN
• zosyn
• amakacin
• ambisome
• rocephin
• meropenem
• vancomycin (IV and oral)
• mercaptopurine
• vincristine
• methotrexate
• cytarabine
• dexamethasone
• toradol
• ibuprofen
• acetaminophen
• benadryl
• mag-citrate
• ex-lax
• flagyl
• zofran
• ativan

     I close out today's entry with a line from the movie Rocky Balboa that I find apt and inspiring.  I'd love to attribute this quote to the proper person, but since it came from a movie I don't know if the original source was Sylvester Stallone or another writer, but I digress.

"It ain't about how hard you hit; it's about how hard you can get hit, and keep moving forward.  It's how much you can take, and keep moving forward.  That's how winning is done."

     

Day 53 - Deja vu

     Evan continues to make progress in his overall health.  The lesions on his skin are fading away.  His stools are starting to firm up which is a good sign in determining if his c-diff is clearing up.  The stomach problems that have plagued him also seem to be less frequent and not nearly as painful.  We're still seeing fevers, but they're not peaking as high as they were a week ago and the sheer number has decreased.  All in all I'm very comfortable with the direction we're heading....

Receiving some dedicated cleaning of his opened lesions.

     ....does this all sound familiar?  Evan was at this point a few weeks ago before the fungal infections reared their ugly heads and took us off the rails.  To say I'm still a bit uneasy would be an understatement.  This isn't to say that I would change anything regarding his health plan, but his immune system is still re-learning how to fight bacteria and fungi.  Combine that with the chemo plan that we're still following and his improving health is far from a sure thing.  The doctors have also started the reduction in his morphine drip.  We haven't seen spikes in his blood pressure yet, but we'll have to watch it closely.
     There was talk by the medical team of performing the first of three spinal taps this week, however Cristy and I found out today the Anesthesia/Surgical team has some concerns with this and isn't willing to move forward.  The CT scan that we did last week still shows congestion in his lungs, not to mention the still healing surgical site in his lung, and they won't approve sedating him until that clears up.  We'll have more updates on this later in the week.

Getting out of the room for an afternoon.

     Add the Teenage Mutant Ninja Turtles to Evan's list of cartoons/toys that he enjoys.  Cristy spent the last couple of evenings crocheting him a Donatello mask.  He was definitely pleased and it brought a tear to my eye seeing him get so excited.  I'm so thrilled to see that despite all he's been through he's still able to smile and be a kid.  As my family and close friends are aware I've always parented him like a much older child, but this experience has caused me to take a step back and try to allow him to be a kid.  I know being in the hospital keeps us close to his healthcare professionals, but being home will breathe life back into his psyche.  I'm torn on which one I'd prefer more at this point.

Evildoers beware.