Day 44 - Courage beads explained and health update

     I'll get right into the health update since I'm sure that is what people care about the most.  This post is being written at about 12:30 on Saturday afternoon and Evan just got wheeled back to his room in the ICU from his latest surgery.  The doctors undressed his arms and ankle to re-clean the infected areas from his surgery on Thursday.  They found pockets of pus still in his arm, but surprisingly his ankle looked good.  I say surprisingly because this was the area that looked the worst prior to cutting him open to flush out the dead cells.  They decided to leave the pump on his ankle for now and added a pump to his left arm to help with drainage.  Upon getting him opened up they saw that his left arm had collected more pus so the cleanup was definitely needed.

Evan's right arm before the surgeries began.

     Cristy met with the ID team this morning and they are going to make a decision soon on whether to drop his strongest antibiotic.  Right now he's on one of the most powerful antibiotics and not showing signs of any bacterial infections.  Changing to something a little weaker will be easier on his body, particularly his organs.  Evan will continue on his two anti-fungals until the sores on his skin and pockets of pus have disappeared.
     Early yesterday evening there was an opening on the Radiology schedule and Evan was sent down for an MRI on his head.  They wanted to check his sinus cavities and brain for any infections that might have gotten missed.  The Oncology medical team has been very impressed with Evan's can-do attitude and told the Radiology team that Evan could do this one hour procedure without sedation.  The Radiology team was very hesitant as it's typically their standard to sedate children in order to capture accurate photos.  If you've had a chance to see Evan here at the hospital the word most often thrown around is compliant.  He's more eager to get it over with than to fuss about pokes, prods, ingesting drugs, etc.  As you can probably imagine he sat perfectly still throughout and the Radiologist called him a Rockstar; the Oncology team was proud (like his mother and me).
     Evan's primary doctor stopped by late yesterday and spoke to Cristy in person, with me on speaker phone, and we discussed his chemo plan moving forward.  With his counts still a little questionable the Dr. suggested we begin with mecaptopurine (6-MP), perform the spinal tap injections (methatrexate) on a slightly revised scheduled and reduce his vincristine dosage so as not to negatively effect his liver function.  We're told the 6-MP takes about 8 - 12 weeks to affect blood cell counts which should give Evan plenty of time to clear out these remaining infections.

Recovering from his latest surgery.

     The fevers still terrify me, however they SEEM to be reducing in frequency.  All the nurses keep assuring me that these are very natural considering the number of surgeries and procedures Evan has had lately.  This makes it difficult to determine how well Evan is rebounding.  The medical team feels better about his recovery and is observing closely over the next few days.  In the meantime we'll keep treating him with Tylenol, Motrin, Toredal and ice packs.

Courage Beads
     The Beads of Courage program was started back in 2003 by Jean Baruch while she was working on her PhD at the University of Arizona.  There are several sites out there that explain it in varying amounts of detail so please feel free to search more about it if my explanation isn't clear.  In short, it's a story of each child's journey with life threatening illnesses as told through beads.  For example, black beads are given for needle pokes, lime green is for fevers, red is for blood product transfusions, yellow is for hospital stays, etc.

Evan's beads as of July 30th, although he's missing several since moving to the ICU.

     Each day, or as Cristy remembers it, she keeps track of the accomplishments or challenges that Evan has faced.  We then speak with the hospital staff who provides us with the beads.  The children typically put the strands on their medical trolleys to show the battles they have fought so far.  Originally we weren't tracking multiple antibiotic treatments, needle pokes, etc. per day or the strand would be a bit longer.  Evan's is much further along than most kids in month 2 of chemo, but I'm hoping to collect fewer beads over the remaining 1,051 days.

CHoA's color guide.

Day 42 - Rapidly changing developments

     There have been many significant changes and findings since my last update.  After I left yesterday afternoon Evan was napping and apparently his oxygen and breathing (Stridor Score) made the doctors in the Oncology units uneasy so him and Cristy were sent packing for the ICU.  While this might seem like a step backwards I'm actually somewhat relieved.  The teams in the ICU are staffed for more hands-on care and are probably better equipped to handle the various ailments that Evan seems to be experiencing.

Sleeping off a fever after surgery.

     Late yesterday afternoon Evan's fecal sample was analyzed and c-diff was confirmed.  The ID team promptly added oral vanc to his antibiotics and we've already seen an improvement in the severity of his stomach pain.  Obviously it won't kill it all overnight, but the pain and discomfort that has plagued his abdomen for the last two months is slowly fading away.
     In addition to that the orthopedic surgeon came by to check out Evan's ankle yesterday.  This has been an off and on problem since our 2nd week here and intermittently has caused mobility problems.  They confirmed that his joint and bone were infected and performed surgery early this morning.  After speaking with the surgeon post-op he has indicated they'll probably go back in Saturday morning and drain any remaining pus before suturing the entry point back up.  In the meantime he has a drainage line and pump attached to his ankle to assist with the healing process.  While he was under anesthesia they decided to remove the other pus filled regions on his limbs.  This will aid him quite a bit and should reduce his recovery time.  We're still awaiting detailed biopsy results from his skin lesions and lung tissue.

Evan has had three limbs and chest operated on this week.

     The Oncology team has decided to hold off chemo for another week.  Evan's body needs more time to recover before negatively affecting his blood counts.  We spoke at great length with his NP this morning and she felt that since he was already in the low risk category due to age and how his marrow has responded that we're probably fine holding off one more week.  Worst case scenario they would alter his next phase to keep him on track without completely nullifying his immune system.
     On to some positive news.  The OR team came by this afternoon and performed the removal of his lung support tube.  This was used initially to help drain fluid from his chest and prevent his lung from collapsing in the event of a leak.  The doctors had him attached yesterday, but without the pump running and came back this afternoon and removed it completely.  They'll do one more chest x-ray tomorrow to make sure everything looks stable before clearing him as healthy.  The surgeon estimates he'll need another two weeks before it's completely sealed.

Getting his chest tube removed - we're free of the pump!

     This last week has been one of the most trying ones yet for Evan, Cristy and I.  As one would expect Evan has been in significant pain for a number of reasons and the only relief is morphine, which puts him in a doped up state.  Watching Evan suffer with seemingly little progress was beginning to take its toll on us.  I'm so fortunate to have Cristy on this journey with me as I would certainly stumble and fall if I was doing this alone.  It's amazing what people are capable of when they have no other choice but to be strong.  Have we turned the corner?  We'll have to wait and see.

     I wanted to wish my dad a happy 69th birthday today!  Ideally we'd love to celebrate properly, but I'm hopeful we'll be able to do so soon as a whole family in the future.  This experience has hit my family so fast that we really haven't had much time to sit down and reflect on the impact.  Make sure to kiss your loved ones, hold them a little tighter and appreciate the little things.  In honor of my dad's birthday I leave you with an old country song that we listened to while I was growing up.  One of my father's legacies on me is I still enjoy classic country to this day.  The song is One Day Left to Live by Sammy Kershaw.

   

Day 41 - The measure of a person

     It's easy to provide updates when everything is going well, but much harder when the news is largely negative.  Since the surgery Evan's health hasn't improved much.  The only positive is that his fevers have decreased in frequency, however Tylenol has no effect on them and can only be broken with Motrin.  This is less than ideal because it impacts his platelet counts and paints a misleading picture when determining his bone marrow health and slows healing.
     The biopsy results have returned for the growth in his lung.  It appears that what the surgeon removed, in addition to a portion of his lung, is mold.  Yes, you heard correctly, mold.  They switched Evan to another anti-fungal medication yesterday morning to begin attacking that.  For those keeping track at home that's now two different types of fungi found in his system and that doesn't even include the bacteria.  The lesions and sores on his body are larger and in greater numbers now as well.  The dermatologist came by late yesterday afternoon and took samples to run biopsies on them.
     I spoke with someone on the surgery team this morning and the plan is to switch to a water seal for Evan's tube helping support his lung.  If that goes well over 24 hours they'll look to remove it altogether.  He's off oxygen now and his breathing was a little sketchy last night, but it picked back up to normal levels after a couple of hours.
     Yesterday we did a CT scan of his abdomen again to see if it might show any other pockets of infection.  The results weren't much different than what we've seen previously.  Enlarged organs and some smaller pockets of fluid, possibly fungus, on his spleen and liver.  The doctors want to continue with our plan of attacking the mold, while also staying on the antibacterial and other antifungal medications.  While we were out we also did an ultrasound of his PICC line to check for clots or other areas of infection.  The thought was to rule it out as a possible source.

Checking out his veins around the PICC line.

     In order to better manage Evan's pain the doctors put him on an IV morphine drip which he can control.  Anytime he feels discomfort in his stomach he can hit the button, but it's timed to prevent him from getting too out of hand.  Also his eating has almost stopped completely so I'd fully expect them to put him on IV nutrition for a while.  This might not be the worst idea as it would give his stomach more time to heal.
     Today we have an x-ray scheduled for his chest to verify his lung is healing as expected, followed by an MRI of his head and chest.  They'd like to check again for signs of infection in his head and sinus cavities.  If you get the feeling they're not sure of the source of infection you're not alone.  They spoke of sending us back to the ICU and while it's less comfortable overall I'm not that opposed to it.  I feel like up there they might be better equipped to handle the various ailments he has.

Closest thing I got to a smile yesterday.

     When you're acting as an advocate for a loved one, whether it's a child, sibling or parent, don't be afraid to speak up on their behalf.  Challenge the medical teams to work together for the betterment of someone you care about.  This might not be popular in the short term, but your loved one's health is more important than some temporarily hurt feelings.  I'm still holding out hope that the teams can gather the information they need and get Evan on the road to recovery instead of sitting in neutral.
   

Day 39 - Time will tell

     Evan's surgery this morning was completed without any complications.  The surgeon spoke with Cristy and I and told us he was going to do everything in his power to limit the incision size in our little boy's chest.  I'm happy to say he was a man of his word and removed the pocket using only two scope sized entry points.
     Because the procedure was scheduled for first thing in the morning Evan was pretty nonchalant about the whole thing and slept most of the way up and in pre-op.  We were fully expecting to be in the ICU upon completion, however because the incisions were smaller than originally thought and the bleeding was minor they felt comfortable putting us back downstairs in the Aflac (in-patient) units.  A heartfelt thank you to Dr. Raschbaum for minimizing the impact on my son for this surgery.  This should speed up our recovery as well and get him back to being a kid again.

Relaxing before the surgery.

     The rest of the morning and early afternoon was spent with Evan sleeping while the anesthesia wore off.  He's got a tube hooked up to his chest that's used to draw out excess fluids such as blood, plasma and mucus.  I think it forms some sort of seal to stabilize the lung as well until the suture has time to heal.  Unfortunately Evan still got a fever late this afternoon, however doctors say it could be for any number of reason because of the surgery.  We'll continue trying to be patient to see if the fevers persist and what the biopsy shows for the tissue extracted.

Sleeping off the anesthesia.  Vitals were stable.

     Our oncology team also notified us today that they're going to push out Evan's next phase of chemo until next week.  They want to give his body more time to heal up, even though his blood counts so far have looked very good.  The consensus is weakening his immune system at this time wouldn't be wise.
     Naturally Cristy and I are very happy our boy came back in much better shape than we were planning.  Items left on our list to resolve are:

• Stomach pain
• Biopsy results of the skin rash and sores
• Elimination of the fevers
• Healing of chest and lung, including the removal of the tube
• Speak with the elementary administration about Evan's health and attendance concerns

     We still have an exciting few weeks ahead and we're very hopeful that we'll get to go home next week.  Although we haven't spoken with the staff yet I think this weekend is out of the question.  Back to managing pain and fevers for the next few days while the doctors gather more data.  Patience is a virtue I am quickly developing out of necessity.

Welcome back son!

   

Day 38 - Staying the course ahead of surgery

     Since my last blog entry on Friday afternoon Evan's health has taken another downturn.  His fevers have returned and we're forced to give him Tylenol every four hours.  The symptoms normally start with an increased heart rate and chills, followed by a prompt spike in his temperature.  Doctors tend to think the root cause is the fungi in his lung or the clot in his chest.  He's off his blood thinners for now ahead of the surgery on Monday.

His cheeks typically turn rosy red when he's fighting the fevers.

     In order to help get Evan back to feeling well again they've made some changes to his medications and gave him an IV of immunoglobulin.  The following link, Intravenous Immunoglobulin, explains it much better than I ever could, but the Cliffnotes version is these are synthetic proteins, antibodies, etc. that aid his immune system to fight infections until his body starts reproducing it naturally again.  The steroids that our bodies produce likely stopped while he was on the steroid chemotherapy.
     The fungi infections in his body has also caused his rash and sores to return all over his body.  Despite the fact that he's been on various medications to contain it and his body has an immune system now he's still developing new symptoms.  Below you'll see bumps and spots because of the unknown infection.

Return of the bumps!

     Today the plan is to manage the fevers, get some exercise in and prepare him for his surgery tomorrow.  The doctors prescribed lasix in order to flush his system of fluids.  They noticed he's swollen throughout his body now and want to get him as fit as possible before working on his left lung.  The doctor on staff this morning said fever or not we'll move forward with the surgery tomorrow.

Getting our daily laps in.

     Want to say thanks to all of our family and friends for their continued support.  Looking Evan in the eyes and telling him everything is going to be OK gets hard sometimes when more and more ailments rear their head.  It's nice to have friends that help take our minds away from the craziness that we've been experiencing lately and give us an ear to talk to.  I know we'll get through this and Evan will be stronger for it.

Some of Evan's support team.

     I also want to brag on my super-talented wife for a moment.  She's been working on some logo designs for Evan and we'd like to try and help raise more awareness for cancer research.  Having something to show solidarity among our family and friends is important to us too.  The logo below is her base image and the other designs are centered around Evan's courage beads.  For those not familiar with that I'll cover it in another blog entry as this one has already gotten wordier than I had planned.  Great job baby!

Expect to see this soon on shirts and koozies.

   

Day 36 - Remission is confirmed

     Cristy and I just spoke with the doctors about his MRD results.  There were no traces of leukemia cells found in his bone marrow at this time and they announced he is now in remission.  While this is exciting news we still have a long way to go.  The treatment plan for the next 28 days is for three spinal taps at various times to inject chemo drugs, one vincristine treatment and twice a day mercatopurine taken orally.
     The doctors are preparing him now for his stomach scope and LP extraction.  Evan's WBC counts in general have started to normalize, but they want to check his spinal fluid as well to make sure it too has decreased.  Early next week the doctors will operate on his left lung to remove the fungi lesion.  This was originally scheduled for today, but they decided to push it out until next week when the main team is back on the clock.
     His fevers are also beginning to subside as he only had one early last night and has been several hours since his last one.  I'll provide more updates later this evening after his procedures, but wanted to report a win for a change.

UPDATE
     Evan returned from his stomach scope and spinal tap without any issues.  He promptly scarfed down down two slices of pizza and half a taco upon returning.  These late morning/early afternoon procedures are for the birds.

Finally giving the boy some food.

     The bad news?  We're continuing our current course of treatment until the biopsies come back on Monday, although even then things might not change.  The good news?  At least now we know what's causing his stomach problems.  He has several sores in his stomach causing constant discomfort.  The compromised immune system combined with steroids is likely the cause, however the medical staff wouldn't say for sure if that was the root cause.  Even though his pain is likely to remain for the short term I'm pleased that we at least know where his pain is originating.

This is 1 of 2 photos showing the sores.

     I also spoke with the surgeon a bit ago about Evan's lesion removal from his lung on Monday.  The plan is to start the surgery at 7:30 a.m.  He'll be under for 1 - 3 hours depending on how difficult it is to remove.  Upon waking up he'll need to stay in the ICU for 48 - 72 hours to ensure his lung is sealed and doesn't collapse due to a leak.  They'll enter in just under his left breast and try to keep the incision as small as possible.  He will also have a tube running from his chest afterwards to help remove excess air and help expedite healing.

     The doctors were weighing other options, but with the next round of chemo set to begin they didn't feel comfortable compromising his immune system again with a pocket of puss sitting in his blood stream.  While this is the more painful approach in the short term it will allow for the fastest recovery and keep us on schedule.  I hope it's true about chicks digging scars because by the end of this ordeal he's going to be a chick magnet.

     Tonight's inspirational music comes from my workout playlist as well.  This is from one of my all-time favorite bands, and vastly underrated in my opinion, Zebrahead.  The main chorus goes like this and seems pretty fitting considering the family's emotions lately.

We all fall down but we get back up

We all break down but we build it up

And we won't break but we might bend

We all fall down but we get back up

We all want more never get enough

We will not break but we might bend

See you at the bitter end

Day 35 - The hits keep coming

     I thought long and hard about whether to post anything tonight.  My initial thoughts were to drink a beer or two tonight to relax and hope that I could get a few hours of sleep.  What changed my mind was thinking of any parents of children with leukemia one day reading this blog.  I want them to know that there are going to be days when you don't get answers, where your child's health seems to stall and you have to be prepared for it.

He was a little uneasy on his feet, but warmed up.

     Another day has passed with substantially more questions than answers.  Cristy and I were anxious to meet with the medical team today and had several questions ready.  The general responses we got were "We don't know" and "We're guessing this is because of...".   Allow me to detail the current list of ailments.

• Evan's white blood cell count is elevated in his spinal fluid.  The doctors are unsure why.  They wish to extract more spinal fluid to re-check the cell counts.
• Evan has an infection in his upper left lung.  The doctors aren't sure why the antibiotics or anti-fungals to date have not eliminated this.  They want to perform surgery on him tomorrow to remove the lesion.  
• We still have not seen the results from the bone marrow extraction.  The MRD (minimum residual disease) figure helps determine next steps in chemotherapy.
• The doctors do not know why Evan's stomach continues to hurt.  A scope is scheduled for either tomorrow or early next week.
• The doctors do not know why Evan's fevers have returned.  If would be easy to attribute it to the puss ball in his lung, but they couldn't say with any certainty.

     For those keeping score at home the only thing I do know for sure is that his blood counts have improved and that his blood pressure has remained stable since leaving the ICU ward.  That's it.  All his other symptoms have either worsened or new ailments have arisen since we've been here.  Please don't read into this as a lack of trust in his medical team.  Cristy and I want answers now and sometimes it's not that easy.  I really do wish we could provide him more comfort and better manage his pain.  In that regard we've all failed.

Catching a smile while Cristy and I were joking around.

     Today we got some genuine smiles and laughs from him.  Being off the steroids is starting to show now.  If only we could figure out how to minimize his pain I know we'd see the happy, giddy kid that we all love.

Trying to keep his weight up.

     Evan's hair was getting even patchier than before his latest trim.  I felt we had no choice but to cut it down lower.  Keep in mind this isn't my best haircut, but I'm not looking for a job at the salon.  Some of the gaps were as a result of his hair thinning already.  Fingers crossed that tomorrow yields more answers and that my son comes out of the operations or procedures with minimal pain.

Working with the occupational therapist.

UPDATE - I ordered some leukemia bracelets of varying sizes.  If you're familiar with ribbon colors pink is breast cancer, gold is childhood cancer and in this case orange is leukemia.  They say "No One FIGHTS Alone!".  If you think you might want one let me know.  I can order more if need be.

Evan will NOT fight this alone!

Day 35 - Anatomy of a Cure

     A friend of mine found this article and photocopied it for me.  Luckily I was also able to find it online.  It deals with the doctor who ultimately created the treatment protocol to deal with ALL and briefly touches on some of the challenges for the patient.  What I found interesting is it was developed in the late 60s, but it's more or less the same plan used today.  If you have a couple of minutes to kill I highly recommend it.

Anatomy of a Cure - By Hampton Sides

Day 34 - Hotel California

     Nolan and I spent the day at the house so I could work and came in around 3:00 to relieve Cristy and let him see his big brother a bit.  I had seriously considered coming up sooner based on the bad news that Cristy reported to me this morning.  Evan's fever has returned with a vengeance and had to be broke twice, once with only Tylenol and the other time with Tylenol and Motrin.
     This is very discouraging as it now sets our departure timer back.  We had been told that Friday we could leave assuming there were no more setbacks.  Even more frustrating is that the doctors still don't know the source of his fevers or stomach pains.  I seriously need to consider getting an apartment nearby so I won't have to deal with the commute back and forth.
     To help provide the medical team with more data Evan had his antibiotic and anti-fungal changed (again), along with a CT scan this afternoon.  He was nervous, however did fine once we got him on the table and started the process.

Getting Evan out of the bed moving a bit.  Nolan tagging along for the ride.

     One of the Oncology Doctor Fellows spoke with me this evening about the CT scan results and stated Evan has some sort of fungal puss ball in his lung.  She gave it a much more scientific name besides puss ball, but for the life of me I don't recall what it was.  When I relayed this information to Cristy she said we already knew about this two weeks ago.  His new anti-fungal should treat it, but they're going to discuss  the potential for ANOTHER surgery tomorrow.  Have I mentioned lately how much I wish it was me on the OR table?
     So another night on fever and pain management watch.  The doctors also found elevated levels of white blood cells in his spinal fluid.  Is this good or bad?  We don't know and the doctors didn't want to elaborate more without first getting more information.  The silver lining is that the CT scan of his head didn't show anything to be alarmed with.  It was scanned out of an abundance of caution since they wanted to rule out any sort of bacterial infections there.
     Signing off tonight from my 2nd home, but I'll leave everyone with a picture of my baby Nolan who still manages to get a smile on our faces despite the circumstances.

Cheesing for the camera.

   

Day 33 - PICC installed, awaiting bone marrow results

     Don't have much to add tonight.  The procedures to extract bone marrow, spinal fluid and install the PICC line were successful.  Evan was taken to the surgery units around 12:50 and was returned back to the room around 2:00.  Since he was restricted from eating since midnight the first thing he asked about upon waking up was food.

Evan was a little nervous prior to his procedures this morning.

     Now the waiting game begins.  Results on the bone marrow extraction aren't expected until Thursday at the earliest.  In the meantime the doctors are going to continue taking a close look at Evan's stomach.  With the steroids ending this morning we're optimistic that it is the root cause of his pain and that he'll begin to make a slow recovery.  I for one would love to get him off of nubain and ativan which would only leave us with blood thinners, antacids, laxatives, anti-fungal and antibiotic medications prior to chemo.

     Chemotherapy starts back up next week.  The results Thursday will determine which drugs, how often and what days we'll need to bring him back for clinical sessions.  Wrapping up tonight's entry with some pictures from the day.

Getting some exercise in to pass the time before sedation.

Scarfing down some food post-install.

Thank you to whoever made this.  One of the mothers of a cancer patient gifted this to us.

Blood counts from Saturday and today.

Day 32 - It takes a village to raise an idiot

    The updates for Evan tonight are pretty minor.  He's currently resting after his latest dose of nubain and I'm hoping for an uneventful night.  The switch to a new antibiotic, rocephin, seems to have resolved the fever issues.  If we can just figure out the stomach problems we'll be in much better shape.

Enjoying some sun and fresh air for a change.

    Evan's temper has reached its peak due to the steroids.  Cristy and I may throw a party tomorrow if only because his a.m. dose is the last one scheduled for a while.  I've never met anyone legitimately diagnosed as bi-polar, but I have to assume it's something like this.  At a moment's notice he tears into us for the most minor things.  On the plus side discontinuing the steroids certainly won't hurt his stomach.

Upset about being asked to brush his teeth.

     We're still on schedule for our procedures tomorrow at 1:00.  There was talk by the doctors of holding up on the PICC placement because of a false bacterial detection earlier this week, however it appears the doctors have explained the situation to the nurse practitioner and surgeons and we're a go (for now).
     Evan and I had a long talk tonight about what's happening this week as well as the journey ahead.  He got upset, which is completely understandable.  I held off getting into some of the finer details about leukemia, but assured him his body was responding well despite the fact that his stomach pains have persisted.  His biggest fear for tomorrow is the needle, which shouldn't be a big concern since he'll be asleep by that point.
     The doctors will share the blood counts with us tomorrow evening and we hope to have the bone marrow results by Thursday.  Those two reports will dictate the next phase of chemotherapy for us.

Playing some games in The Zone.

     I've spoken many times about the staff at Children's Healthcare of Atlanta, however if you've never visited this place you might not understand the true scope of our support system here.  Allow me to break down our daily medical team along with the ancillary techs and support services.

Daily
Two nurses working 12 hour shifts - These wonderful ladies (no males so far at least) work the front line with answering questions, administering the drugs, taking vitals on two hour increments, providing reports for the doctors and helping keep us sane during trying times.  I'm biased for a few of them as they've went above and beyond for us on many occasions.
Two nurse technicians working 12 hour shifts - These folks are responsible for making sure the nurses have all the resources they need to keep the patients cared for.  Think things like gloves, medications, computers, etc.
Oncologist - This is the MVP of our medical team.  Everyone takes their direction from this individual.  I haven't quite learned their cadence yet, but I think they work M - F/8-5.  That may not be accurate, but they definitely seem to switch out weekly.
Oncologist Doctor Fellow - Doctor in training specializing in oncology/hematology.
Nurse Practitioner - The NP would be your #5 hitter if this was baseball.  Carries quite a bit a clout and typically works closest with me and Cristy while we're developing Evan's day-to-day needs.
Pharmacist - Pretty self explanatory if you've ever been to a Rite-Aid or CVS.  The drug gal.
Gastrointestinal doctor - I don't think he'd be part of a normal support team here, but since Evan has been having such a hard time with his stomach we've gotten to meet several doctors from this team.  Because of the limitations for patients with compromised systems the GI docs have to get creative sometimes or use intuition when deciding on a diagnosis or course of action.
Infectious Disease - Responsible for selecting Evan's medication based on lab results.
Lab technicians - Sadly we see them daily, sometimes multiple times a day.  They handle blood draws, IV installs and transportation of the samples.

Receiving a new IV for chemo.

Add-on services
Family experience - Someone who's sole purpose is to make sure Cristy and I are happy with the care Evan is receiving and the accommodations.
Child life - Someone who's job is to ease any anxiety that Evan may feel about a procedure or drug.  They also typically keep us plugged in on any events going on in the hospital that day or week.
Musical therapist - Someone that provides music as a means of entertainment to help pass the time.
Occupational therapist - They're responsible for keeping Evan's logic and cognitive skills sharp while we're here.
Chaplain - Meets with the family and I for spiritual guidance.
Physical therapist - Responsible for keeping Evan's motor skills sharp due to prolonged bed rest.
Dental Hygienist - Similar to the GI doctor, because Evan's immune system will regularly be compromised a normal dentist is out of the question.  This dentist specializes in treating cancer patients.
Hospital Teacher - This person acts as our liaison between the hospital and the school system.  They'll also obtain Evan's school work and conduct class when he's here for clinical visits or longer stays.
Case Manager - Responsible for helping us navigate through insurance needs and counciling.
Patient and Family Educator - Responsible for educating Cristy and I on the drugs, treatments and how to administer the various types.

This list is far from complete and I'm sure I've accidentally forgotten some other wonderful individuals, but this group is trusted to provide support and help guide Evan back to health.  We're very fortunate to have a world renowned hospital in our backyard.

Day 30 - Then and now

     The family and I have had some emotional days lately.  Some of this is related to working with our healthcare team on how to resolve Evan's on-going stomach issues and some of this is from our day-to-day reports of how his body is responding to the chemo treatments.  As of now Evan continues to have severe stomach pains.  Not wanting to increase his chances of constipation we've switched his narcotic to Nubain.  It doesn't have a constipating side effect, however it seems to only dull his pain for about an hour.  The rest is on Cristy and I to help manage the time and take his mind off of the discomfort.

Evan decided "my couch" looked more comfortable than his bed.

     Evan's rash is starting to fade away due to his body being more able to fight on its own (more on that later).  Also his hair is coming out much more frequently.  Not wanting to shock him we've decided to go with a haircut approach that calls for taking small amounts off at a time.  In addition to the general discomfort he feels, his temper is very volatile due to a month's worth of steroids.  Luckily for us he only has a few more days of that and then we have to wait for it to naturally metabolize from his system.

Beginning the hair shortening process.  He's not thrilled.

     When we first started this journey Cristy and I were extremely uneducated about leukemia and blood counts and side effects and cancer in general.  Like most families in our situation we've read any literature provided by the hospital so we can try to become more knowledgeable about the physiology behind the drugs and our child.  Below is a rundown of definitions and Evan's blood counts on day 1 all the way to now on day 25 of Induction.  Some of them have been higher, but he had a chemo session a couple of days ago and they've taken a very slight hit.

The definitions have been provided from Childhood Leukemia - A Guide for Families, Friends and Caregivers by Nancy Keene.  The types I've selected are generally the ones the doctors focus on when discussing his health status with us.  There are many other counts captured during his daily blood draws, however they don't indicate an increase or decrease in the leukemia cells.

White Blood Cells (WBC)

These are the cells the body produces to fight infection and parasites.

Value for healthy children - 5,000 - 10,000

6/17/2016 - 6,320 (this number was artificially inflated by the cancer)

7/16/2016 - 4,130

Hemoglobin (Hgb)

Hemoglobin carries oxygen to the body and are transported via red blood cells.  During induction and consolidation children may have low Hgb levels because both cancer and chemotherapy decrease the bone marrow's ability to produce new red cells.

Value for healthy children - 11.5 - 13.5

6/17/2016 - 6.8

7/16/2016 - 10.6

Red Blood Cells (RBC)

Red blood cells are produced by the bone marrow continuously in healthy children and adults.  These cells contain hemoglobin, which carries oxygen and carbon dioxide throughout the body.

Value for healthy children - 3.9 - 5.3/mil

6/17/2016 - 2.60

7/16/2016 - 3.91

Platelet count

Platelets are needed to repair the body and stop bleeding through the formation of clots.  Because platelets are produced by the bone marrow, platelet counts decrease when a child is on chemotherapy.

Value for healthy children - 160k - 380k

6/17/2016 - <1,000

7/16/2016 - 155k

Absolute neutrophil count (ANC)

The ANC is a measure of the body's ability to withstand infection.  Generally an ANC above 1,000 means the child's infection-fighting ability is near normal.

Formula - Segmented neutrophils + band neutrophils x WBC

Value for healthy children - 1,000+

6/17/2016 - None detected by instrument

7/16/2016 - 2,700

     If you're still awake after reading these definitions and counts then I'll fill you in on the rest.  Evan is scheduled for surgery Tuesday at 1:00 to withdraw bone marrow and spinal fluid for testing and to install the PICC line in his arm.  This will allow the medical team to administer chemo in the near future until his clot clears and we're able to put the port back in.  As long as there are no other unexpected surprises we're scheduled to leave late next week.  I think I speak for the entire family when I say that will be a very welcome change for all of us.  

Spending some time with the music teacher.

     The results of the bone marrow extraction will either show leukemia or not.  If not, he's considered in remission; if so, it will change his chemotherapy plan.  Although not confirmed until the bone marrow can be analyzed the general plan is to wait 7 - 10 days for his blood counts to rebound and then begin Consolidation.  This means new drugs, a changing frequency and dosage amount for the next 28 days.  Based on my reading the next round of drugs will reduce his blood counts and significantly curb his appetite.

     The end of phase 1 is in sight and good or bad it's been a hell of a journey.  I've found out a lot about myself, more about my wife and way more about the type of fighter my oldest son is.  The doctors tell us it gets easier on Evan because his body will begin to adjust, but I know we're far from out of the woods and this likely won't be our last trip to the ER.  We'll continue trying to take it one day at a time and provide support to each other to keep moving forward.

Day 28 - Side effects

     Our journey continues as we're now on day 24 of Induction, the first phase of our chemotherapy plan.  Evan's body is starting to show wear from the steroids and various drugs that have been administered.  In the pictures below you'll see puffy and red cheeks.  Much of this is due to the steroids.  Cristy noticed patches of hair on his pillow today so we know that it will soon be time to cut his hair.  My goal is to prevent any emotional trauma from watching it fall out over time.

Receiving a new IV prior to chemo.

     Evan had some significant bowel movements yesterday with Cristy and continues them today, albeit to a lesser degree.  Going forward Evan will receive laxatives during all chemo sessions, particularly those that involve Vincristine.  His stomach pains still haven't went away, but there has been nothing in the x-rays to suggest inflammation or other GI issues.
     The clot in his chest will need to be reevaluated in 6 weeks.  During his daily blood work the doctors have indicated that they have a particular value they look for to determine the blood's viscosity (my word, not theirs) and that he needs his a bit thinner.  They're upping the dosage amount in order to thin his blood out more.  Because of his age and the general strength of his heart they feel the effects should be minimal.

Resting on the couch while his room gets cleaned.

     Thus far Evan's blood counts seem to be increasing in the areas we'd want.  Not sure what values the doctors would consider a success, but some of the numbers I've heard are the highest we've seen since being diagnosed.  Interestingly his blood cultures for July 12th aren't showing bacteria, despite the fact that he still has multiple fevers a day.  Labs from last night haven't returned any news, good or bad, but assuming they continue with negatives for the infections we're being told that we could leave by late next week.  A lot of ifs still in play, but at least we have some sort of positive news.
     I wanted to close this evening's blog by saying Thank You to so many people.  Cristy and I are blessed and more fortunate than we deserve to have such a strong support system from family and friends.  It should go without saying, but we couldn't do this without all of you.  You're all a part of this journey with us and every prayer, gesture, lending of ears or assistance with family needs you provide doesn't go unnoticed.

Thanks to Christina for the Hulk cupcakes.

     Since I haven't provided any music lately I felt it was long over due.  I'm going to leave you with one of my guilty pleasures.  Fight Song by Rachel Platten is on my workout playlist, but seems fitting tonight.  Thanks again to EVERYONE!

Day 26 - Keep moving forward

     Similar to the last blog entry the past 48 hours hasn't seen the number of milestone achievements that I'd like.  In fact, it's probably safe to say we've regressed.  Evan's x-rays and ultrasound showed that structurally his legs are stable.  It also showed that despite the bowel movements he had with me a couple of nights ago he's still substantially backed up.  The stomach pains persist and his fevers have returned with much more frequency.

Passing the time.

     The CT scan also showed a clot in his chest, which the doctors believe is the source of our continued infection problems.  Evan has added twice a day stomach injections of blood thinner to his growing cocktail of drugs.  To ease his kidneys a bit more they've adjusted his anti-fungal medicine to something a little less aggressive as well.

Hopped up on morphine before his ultrasound.

     Despite some concerns Cristy and I have about the treatment and course we're on we were given assurances that although we don't see progress daily this is the best approach and that they're treating him with the highest of urgency.  I think I mentioned this in the previous blog entry, but because the narcotics have a constipation side effect we've been forced to go without.  Evan is in quite a bit of pain as his stomach continues cramping trying to move the fecal matter forward.  From talking to him this evening going #2 also hurts him, which I know contributes to his apprehension.

Receiving a stomach and chest ultrasound.

     His spirits are extremely dampened and truthfully I was a bit uneasy about the bacteria and fevers returning.  I've gotten very little sleep lately and am trying to find ways to clear my mind and continue finding creative ways to support him and keep him moving forward.  My frustration lies in so many things, most of them are outside of his control.  The whole situation is disheartening and I can't help but wonder how often this sort of thing happens to leukemia patients.

His favorite past time activity.

     I may come back online later tonight with an update or two if we get some substantial movements.  Fingers crossed this poor boy can get some relief and get back on the road to recovery.  Lately it's felt a lot like one step forward and two steps back.

Day 24 - Eureka!

     The last 48 hours have been up and down for the family and me.  I'm more of a bad news first type of guy so we'll start with that.  Blood cultures from the previous night are showing e-coli bacteria in Evan's blood again.  This resets our departure timer along with other procedures he needs to have done (PICC or port install).  The doctors are lining up several tests for tomorrow to help identify the source.

Checking out Evan's stomach and rash this morning.

     Also, the pain in Evan's foot has returned.  This has the doctors a bit concerned that the bacteria may be causing the pain there.  An x-ray has been ordered for tomorrow along with a possible ultrasound of his upper cavity for any clots.  The ID doctors don't seem convinced that his bowels were the cause of the infection relapse and instead think there is a pocket or two hiding out in his lung or a clot.

     Most of the morning Evan was depressed and in pain due to his stomach.  The general consensus by the doctors and myself was to only give him something for the pain if absolutely necessary.  A side effect of the morphine and lortab is constipation, in addition to his chemo medications.  He's been quite the trooper in pain management and only asks for it when absolutely needed.

     On to the positives.  My young man finally had a significant bowel movement this afternoon.  Naturally afterwards he started to feel like his old self.  The stomach pains have greatly reduced and I'd expect if we can get a bit more out tonight he'll feel even better.  The bloating of his stomach has reduced to a level where we can see his belly button again.

Feeling better after visiting the bathroom.

     This evening the doctors ordered up a visit from the opthamologist.  People with blood infections are susceptible to eye issues because the bacteria will hide there at times.  The doctor gave him a good look and reported his eyes were healthy.  Evan's never had his eyes dilated before, but didn't seem to mind.  We'll be spending the rest of the night in the dark.

Evan's first eye exam.

     Next steps?  We need to figure out this bacteria issue.  The stomach and ankle/leg pains are still on-going, but could be related to the infection as well.  Vitals are stable.  Fevers are under control and the rash seems to be subsiding.  Blood counts are on the rise as well.  Within the next couple days I hope we have more answers and some idea on how to administer the chemo drugs once we're through Induction.

Day 22 - The Golden Goose

     I decided to hold off on updates yesterday because we really didn't have much of a change in his health status.  Evan was in a fair amount of pain yesterday due to his stomach issues.  We had another CT scan performed late yesterday afternoon and the results showed the poor kid is backed up.  To that end the doctors have tried 3 different laxatives to loosen him up.  One of the side effects of the main chemo drug he's on right now is constipation.
     The pain in his legs and stomach he's been feeling over the past week has caused him to prefer laying in bed.  Today Cristy and I decided that despite his hesitance we were going to try and get him some exercise.  We did a couple laps around the in-patient units, walked to The Zone for a movie and had him do some activities with the physical therapist in the room.  He's very shaky on his feet, but that's likely due to being bedridden for too long.

Working on his motor skills with PT.

     The hospital was showing The Secret Life of Pets earlier and we got a chance to head down to attend.  Unfortunately due to the crowd it was difficult to find a decent seat and the background noise made it hard for him to hear.  After about 30 minutes Evan decided he wanted to come back to the room.  I did manage to snap one photo before we departed.

Catching a movie, next to the popcorn maker.

     Now on to more positive news.  Vitals have been stable for about 5 days now.  He's off the oxygen and monitors, which makes for a better sleeping environment in his room.  I don't think I mentioned the rash he developed in the blog before, but that seems to be clearing up.  Visually the doctors thought it was brought on by the anti-fungal medication fighting the yeast in his blood, but they never did a biopsy so that's not confirmed.

     Evan's blood is showing the type of counts that they would expect from someone that is responding well to the chemotherapy.  What does that mean?  It means the steroids are killing the cancerous cells, the chemo is suppressing the cell division and that his bone marrow is naturally creating healthy white blood cells (neutrophils), hemoglobin and platelets.  Our nurse (Jackie, who's been phenomenal) said were it not for the infection he was brought in for last week they would have released us on those numbers alone.  Speaking of bacteria, lab for the past 24 hours is showing no yeast or bacterial infections.  Fingers crossed that we continue on this path so that we can start the 10 day timer for the whole family to go home.

He's not so sure about pooping being the answer.

     Earlier today he had a minor bowel movement which got the medical staff very excited, but things seemed to have stalled again.  I'm on poop watch tonight so fingers crossed we hit the mother load and finally get that golden egg.