Day 51 - The forgotten son

     Last night and today has been pretty uneventful and we're certainly not complaining about that.  Evan has had a few mild fevers, spaced out roughly every 10 hours or so.  For the most part we (the medical team, Cristy and I) feel his body is handling them, however the toradol isn't hurting either for reducing the inflammation.

Grandma and Evan opening a gift from Levi and his family.

     We've met with several teams today and even though the treatment plan isn't changing drastically I'll provide the most recent updates.  The ID team has pulled the meropenem antibiotic from his daily intake.  This was his last IV antibiotic and he's walking the rope without a net now, so to speak.  He hasn't had a bacterial culture come back as positive since the 13th of July and the medical team feels his immune system is ready to take on any bacterial infections now.  This will also allow his stomach to start growing good bacteria to fend off the c-diff.  The ID team has stated he will likely stay on one or both anti-fungals throughout the next few chemo phases and possibly even through maintenance.

     The Orthopedic team is very pleased with how his arms, leg and ankle are healing.  We have started removing the wraps and gauzes and will continue to shed more of them over the course of the upcoming week.  His ankle will still require PT work and we're on Evan's schedule now for how soon or long it will take for him to heal up and start walking again.

Despite how it looks, he's not delivering a baby.

     Our Oncology team this weekend consists of Evan's primary physician and he was happy to see Evan looking bright and alert this morning.  He feels very satisfied with where we're at and is going to schedule Evan's spinal taps for the next few consecutive weeks.  Each session will involve treating his spinal fluid with methotrexate and possibly drawing spinal fluid back for continued monitoring and analysis of his WBC.

     Finally the GI team is pleased with the look, feel and sound of his stomach.  They've given us the go ahead to ease Evan into eating solid foods, should he desire to do so.  No changes imminent on either the drugs or treatment plan concerning his stomach.

Playing with his doctor kit from Deavlin and the Brooms family.

     I wanted to take a moment to dote on my youngest son, Nolan, for his easy-going nature and ability to add some levity to tough situations.  He's completely oblivious to what's going on, but knows he wants to spend time with his big brother.  I'm positive the two of them will be fighting like cats and dogs again before you know it.  We're extremely fortunate with the timing of his maturation.  About two weeks before Evan was diagnosed he was without question a clingy momma's boy.  Now he doesn't have a care in the world if Cristy or I leave for a few hours, a day or even for a weekend.  He always has a smile on his face and brightens any room he's in.  While we're splitting our time between the hospital and the house he's definitely not forgotten in our eyes and we love him so much.

Cheesing with Daddy before heading to the hospital.

     This also leads me to point out some individuals who have been life savers for us over the last two months.  Heartfelt thanks go out to Hannah, Gina, Boni, Corrie, Kelly, Katie, my parents and sister and even Todd!  I am so so sorry if I forgot anyone in that list.  Knowing that we're leaving him in good hands allows us to concentrate on getting Evan better and I'll always be grateful for your time, sacrifice and care you've given our family.

     I'm unlikely to provide any more updates until Monday because the weekend team doesn't monitor Evan quite as closely as the M-F 7am-7pm folks do.  We'll keep moving forward and check with the doctors to see where we're at on Monday.  Thanks to everyone for their prayers and well wishes!

Eating junk food on the couch following an afternoon outside.

Day 50 - Dusting ourselves off for the next round

     What a difference 48 hours makes.  Since the last major update things have started to improve slightly.  Evan is beginning to smile again and seems more alert.  The doctors and nurses are comfortable with his status and the direction we're heading.

Doing some reading to stay mentally sharp.

     For his health update I'll start with the easy to explain issue.  The high blood pressure he was experiencing a couple of days ago seems to be withdrawals his body was having from the morphine, combined with the fevers.  The medical team upped his morphine drip for now and will start to wean him down next week if the fevers and inflammation have reduced.  They may introduce methadone if his body has a negative effect to this plan.
     It's been a while, but for the first time in over 30 days Evan spiked a fever today and his body was able to fight it off naturally.  By the time the nurse came back in with Tylenol his temperature had went back to normal.  In an effort to continue to aid his recovering immune system the doctors are putting him on scheduled Toradol, which is an anti-inflammatory, and are administering more IVIG (immunoglobulins).  His blood continues to show strong platelet, ANC and WBC counts.  His CRP scores are showing less inflammation, however his hemoglobin is pretty static, likely due to the daily blood draws.

Drawing done by one of the staff members earlier today.

     Evan's bowel movements are also starting to look better, which is pretty interesting since he's only getting sustenance through his IV.  Because of the c-diff he hasn't had any desire to eat.  The GI doctors checked him out this morning and were also pleased with how he looked and the appearance of his fecal matter.  If he continues to improve over the weekend the ID team has talked about pulling back an anti-fungal next week and switching his antibiotic to something a little easier on his body.
     Cristy and I are continuing to work with the PT team to help Evan get his ankle back to normal.  After our pep talk a couple of days ago he's shown a fire that I've been looking for for a while.  Now that we've peeled back many of the narcotics and his pain is under control his personality is starting to shine through and this makes me incredibly happy.
     Earlier this morning an artist came through and did a caricature for us.  Evan couldn't remember having one done before and he was very pleased with how it turned out.  I've said it many times, but the staff at this hospital has been outstanding in treating the mental and emotional, as well as the physical.  Tonight Evan and I will spend our evening watching the opening ceremony of the Olympics.  He's very excited to see this for the first time and looking forward to watching some of the events.

Having his picture drawn.

   

Day 49 - A photographic journey

     I threw this together last night and rest assured you'll see it get added to over time.  Thanks to Sarah for sending me the link for this song.  It's Fight Song/Amazing Grace done to pianos and bagpipes by The Piano Guys.  Enjoy.

 For those unable to view this video format please use the following link:  YouTube - The Adventures of Evan

     If there is anything significant to update I'll add content to this blog entry later.  Evan completed his CT scan this morning, but without results I don't have much more to add.  Once we speak with the medical team later today I may have more information to post.

Day 48 - Kick in the pants

     Well, it appears we're regressing again.  Evan's fevers have picked back up in frequency and potency.  We had a long conversation with the medical team this morning to express our concerns and explain how Evan has been sliding over the last 36 - 48 hours.  Naturally they couldn't answer our questions with as much confidence as we'd like, but we did revise his treatment plan to help treat the C-diff.  For now we're adding flagyl to go along with his vancomycin.  Tomorrow morning Evan will also get a spinal tap to check his spinal fluid and a CT scan of his head down to his pelvis.  They want to make sure no more infections or clots have formed.

Working off a fever.  Ibuprofen and Acetaminophen are both needed. 

     Evan received a smaller dose of vincristine through his IV yesterday, to go along with his daily mercaptopurine chemotherapy.  Despite the countless ailments Evan has experienced he has continued on his revised leukemia regiment, so if you're looking for a silver lining you've got that.

     Another pretty significant problem that has cropped up is high blood pressure.  The doctors aren't sure of the source of that.  Clot?  Reaction to one of the many, many drugs he's on?  Pain that he's not telling us about?  I'm really hoping the scans tomorrow yield some sort of answers for us.

     The fungal infections seem to be subsiding throughout his body.  In the photos below you'll see the spots that were either drained or lanced off related to the fungal lesions.  Many of them look much better than before the surgeries last week.  We haven't noticed any new spots forming, but he will stay on both anti-fungal medications for the foreseeable future.

Right arm.  Various areas that were drained and lanced.

     His ankle is still a work in progress.  The area is much less swollen from infection, but because they had to drill into his bone to address the infection there he'll be in quite a bit of pain for the next couple of weeks.  Evan's physical therapist worked with him yesterday and will be here every other day to continue working him back into shape.  In the meantime he'll wear a boot that will support and adjust his ankle into position for proper healing.

Left leg.  Two major spots healing with packing and stitches.

     Today on the way to the hospital I had to give myself a pep talk to keep my head up, keep moving forward and trust in the plan.  I typically can talk to people about Evan without much emotion unless the subject of the future comes up.  I don't like thinking past today.  It's important that we all stay committed to doing whatever is necessary to nurse Evan back to health.  While all of us sleeping under one roof would be preferred, his health easily trumps my need for comfort.
     My son is holding back emotionally and wants to quit.  During some PT work with Cristy this morning I finally dropped the bomb on him.  We've been sheltering him from the truth, that his situation is very much life and death and he needs to start working towards getting healthy.  He was upset and crying and I stressed to him we're not going to feel sorry for ourselves.  Cristy and I assured him that if he fought for us we'd fight like hell for him.  As a four year old, soon to be five, I don't know if the message was clear to him.  Today I feel strong and inspired and will continue motivating my family, collaborating with the medical team and moving us forward one day at a time.

Evan working on some range of motion exercises.

     Closing out today's blog with a song which has given me quite a bit of motivation lately.  I apologize to anyone offended by the lyrics, but this is my f*** cancer song.  The song is Mission by Lupe Fiasco.  It deals with people battling cancer and how they kept fighting on despite the outcome.

Day 46 - Out of the icebox

     After five days we're out of the ICU and back in our cozy Aflac unit.  Evan's vitals have continued to remain steady and his blood counts and indicators are trending much better as well.  He still has fevers roughly every 10 - 12 hours, but they seem more manageable since his infection removal surgeries last week.  His platelets, WBC and ANC are either increasing or leveling off.  There is another marker for body inflammation called CRP (c-reactive protein) and his number, while still high, is slowly coming down.  The various surgeries he's had lately are likely the largest contributor to this figure.
     Cristy and I are very appreciative and thankful to the staff in the ICU.  They helped Evan through this rough patch and I know their care and dedication was a big factor in that.  I don't know if all the ICU rooms are as cold as ours was, but the thermostat was literally set to 40.  I'm not saying his room was 40 degrees, but if you told me that you had a thermometer and it said 50 I'd believe you.  The nursing staff up there was fantastic and really made every effort to take Evan's mind off of any discomfort.
     Now we're on to one of the hardest parts of his recovery - waiting.  The ID team is satisfied with his status for now and are still awaiting sinus and blood cultures before determining whether to drop two of his antibiotics in favor of one that will be easier on his body.  The anti-fungals will continue, although with some lower dosages due to how they can interact with his chemo meds.  Chemotherapy for phase 2 began on Saturday night and will continue over the next 26 days.  The medical team is following Evan's status very closely and will adjust the treatment plan as needed to ensure his health.

He's not happy about having his blood drawn.

     As for his other ailments, Evan continues to have stomach problems.  At this point I'm not positive if it's purely the c-diff or if he has other issues, but the GI doctors want to wait until he's negative for the infection before changing any of his treatment.  Evan got the drainage lines removed from his ankle and forearm earlier today and the surgical team was pleased with how things looked.  The plan is to put his foot in a boot later today so that his ankle can heal properly.  I don't think I mentioned it in any previous blog entries, but they also had to drill into the bone in his leg due to an infection.  By doing this blood, and ultimately antibiotics, could reach the infected area.  His lung strength is also improving following the surgery last week.  He's still got a small cough, but the doctors are pleased with where he's at.
     Cristy's prototype shirt arrived in the mail yesterday and other than the actual shirt quality we're pleased with the design.  You should see Cristy and I sporting some of these soon and likely some variation on other items.

My beautiful shirt model sporting her latest creation.

     This roller coaster ride has been taxing and unexpected, but Cristy and I are feeling a little more comfortable with where he's at in his recovery.  There's still much to be done and I suspect we'll be here for a while longer.

We got Evan giggling after getting his new boot.

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.