To my regular readers of the blog and those interested in Evan's status I apologize for my delayed response. Part of the lack of response was waiting to get more updates from the doctors and part of it is life getting in the way. Let's go back to Sunday morning. I was with Evan Sunday when we met with the medical team. The main hold up on us being discharged was trying to secure our IV based antibiotic for home administration. It was a holiday weekend creating even more confusion on when/if the medication could be sent to our home in time.
Daddy is being mean and forcing him to wake-up.
Cristy and Evan have done a great job with his physical therapy work. It sounds funny, but he seems more willing now to do the exercises post-surgery than he was prior to our admittance. His leg and surgical wound look great to a layman like me. That said, he hasn't complained of any pain or discomfort and we have to continually remind him not to bear weight on his ankle/leg/foot. Cristy is meeting with his physical therapist for some work this morning and then heading to the hospital for another post-op checkup from his surgeon. Assuming the surgeon is happy with Evan's progress he'll determine if weight bearing exercises can resume or the best course of action for healing.
Welcome to my lair.
The Oncology team has been deliberating for four or five days now on what they feel would be the best course of action for his cancer treatment. They've decided to give him a 50% dose of Vincristine to bridge the gap until Delayed Intensification restarts. Until the infection is pretty much cleared they are being extremely cautious with his blood counts. Once his blood counts bottom out it takes about two weeks to recover. During his last blood draw all of his numbers looked solid and the increased WBC count will speed up his recovery time.
Locked and loaded.
With us not having much to do at the hospital because of his ankle Evan resorted to being mischievous. During a previous stay at the hospital one of our favorite nurses gave Evan the bright idea of filling up empty syringes with water and squirting unsuspecting people. Luckily Evan doesn't have a future in magic yet so visitors were able to recognize what he was doing pretty quickly. Most played along and let him soak them. I kept my distance and tried to remain dry as much as possible. Evan's disposition throughout this whole ordeal has been very inspiring. He's held up much better than I think I would have if put in the same position. This week we'll be busy with appointments, but I doubt there will be any significant updates. Should that change I'll try to be more prompt with getting something posted here.
As we suspected the medical team has decided to keep us here at the hospital this weekend. Yesterday we received the best news possible in a couple of areas. Someone from the surgery team came down to take a look at Evan's ankle and to change out his dressing. Evan was a bit apprehensive about the process since the bandages were sticking to his scab, but after putting some saline on the scab the bandages came off with little effort. His ankle showed very little redness and it looks like the antibiotics are doing the trick.
Looking good so far. Antibiotics seem to be doing the trick.
After the surgeon left we were visited by the ID team. They found the proper antibiotic to administer by running sensitivity tests against the cultured bacteria. This is great news because we can administer a drug that is specific to his infection and greatly reduce our chance of c-diff. The only caveat is the ID team feels that IV based antibiotics are best for a while. Once they're confident the infection in his bone is gone we'll switch back to oral antibiotics.
Until the medical team is comfortable that the infection is gone we're holding off on restarting his chemotherapy. CRP scores will continue to be recorded until his inflammation markers are within an acceptable range. What that range is will also need to be tailored because Evan's immune system has shown that it's not "standard". The lowest he's ever registered is a 2.5, but they typically require negative figures.
The past few days we've been focusing on PT work. A therapist stopped by yesterday morning and showed us some new exercises we can work with Evan on to keep his core muscles strong until he's able to bear weight. Another area that we've been keeping a close eye on is Evan's appetite. He's doing much better since the steroids. All the nurses that have seen Evan in the past versus now feel like he looks great.
Working with the therapist. He's not sure what to think at this point.
Yesterday Evan received a card from his teachers and classmates at Hayes. I think it was dropped off earlier this week, but Cristy and I hadn't checked the mailbox. It was a very nice Thanksgiving card and it put a huge smile on Evan's face (and mine). There's lots of holiday changes taking place at the hospital this week as the decor moves from Thanksgiving to Christmas. One of the nearby buildings put a Christmas tree on their roof that Evan is able to see from his bed. When we get back home next week we'll all perform a similar transformation at our home.
Card from classmates and faculty at Hayes.
I doubt I'll have any other updates until Monday at the earliest. Until then we'll try to keep our sanity by vegging on TV and finding various activities around here.
Happy Thanksgiving everyone! Nolan and I spent the night at my parent's house last night and I got up here around 11:00 this morning. Mama Pruitt sent me packing with lots of goodies that Evan is beginning to tear into. So as not to have to shuttle Nolan all over the place for the next few days my parents agreed to keep him with them until Sunday.
Getting in some exercise with Mama.
There have been quite a few developments today already. Someone from Orthopedics came in early this morning and pulled the drainage line from Evan's ankle. His CRP score had dropped from a 12 to a 7. Naturally Cristy and I were pleased to hear this. His recovery plan calls for no load bearing exercises for the next 4 - 6 weeks. Cristy and I are going to try and find alternative PT work we can do on his other core muscles in the mean time.
Shortly after my arrival this morning the Oncology team came through and let us know the blood cultures were starting to develop. After the infection is under control they'll re-schedule us for the next half of Delayed Intensification. Evan isn't showing any other negative symptoms other than the bone/leg infection which is encouraging. He had a little wiggle room in his chemo schedule because of his body's response so far, so I don't think anyone is concerned with the timing yet.
First Thanksgiving plate of the day.
Almost immediately after meeting with the Oncology team the ID team stopped in. Their initial visit was to tell us about the cultures and that he's responding well. They came back by a short time later and confirmed the infection is E.coli, which is fairly straight forward to treat. The ID doctor feels keeping Evan on extended antibiotics is the best course of action going forward. They're running sensitivities against the strain to help determine which antibiotic would be the best for treating it. We should know more tomorrow. I was hopeful we might get released tomorrow despite what was forecast earlier, but based on the everyone's non-committal for a date I'd bet it will be Monday still.
Mr. Giggles lighting up the whole floor.
CURE was hosting a Thanksgiving meal today from Copeland's. Cristy and I grabbed a plate and continued our annual tradition of the first to 10,000 calories in one day. I mentioned to one of our nurses how much Evan liked pickles and she went out and got him his own jar. He's since finished about half a jar all by himself. I don't know if there is an adverse effect to ingesting this much vinegar, but I guess we'll find out.
I mustache you a question.
While I wish we were able to spend Thanksgiving together as a family this year I'm confident we're getting treatment that will allow us to resume our tradition next year. I hope everyone has a great day!
It's been a while since I've stayed overnight here at the hospital and I am quickly reminded how hard it is to sleep here. This despite the fact that Evan's nightly medication list is very short compared to how long it was before. He woke up a little sore last night due to the ankle surgery, but it was nothing that morphine and Lortab couldn't fix.
I've gotten a chance to see some familiar faces while here and catch up with some of the nursing staff. It's not ideal to have to be admitted into the hospital, but it's much easier when there are friendly folks that know our situation and how best to provide us excellent care.
Today seems like a blur, but this is only because I've been busy the majority of the day meeting with the various medical teams. The surgical team came by early this morning to check out his draining tube. It was filled with blood, pus and mucus and the Doctor-fellow seemed pleased with how it looked. This was followed shortly by a visit from the ID doctor. Her and I had a long talk about his treatment ahead, if this infection could have been avoided and how we can prevent c-diff from developing this time. Unfortunately the c-diff will remain a challenge until they're able to isolate the specific type of infection.
Spread your wings young man!
As for the former topics above we'll likely be on antibiotics until Evan has completed the difficult phases of chemo. His suppressed immune system is being pointed to as the likely cause of infection and thus unavoidable. Under a microscope ID knows the cells are gram-negative, similar to e-coli. If it turns out to be e-coli the doctor said it will be much easier to treat. They're going to keep us here until next Monday out of caution and knowing his history with infections. If all goes well and they're able to suppress the infection the medical team will likely move forward with the next half of delayed intensification early next week.
The surgeon also made a visit to check Evan out. At that time Evan was in great spirits and eating lunch. If his inflammation (CRP) scores are down tomorrow they are going to remove the draining tube. If not, they'll go back in for further cleaning. Based purely on how Evan looked visually and the fact he hadn't experienced any fevers he felt pretty good about his CRP score being lower. I asked about long term expectations for his leg and if we should be concerned. The doctor said it's likely due to lower white blood cells counts and that it wasn't that unexpected during this phase of chemo. He also mentioned that Evan's leg looked better this time around than originally. Our physical therapy progress is probably lost though as we will have to wait for the ankle joint to recover from the surgery before restarting weight bearing exercises.
Acting silly for the surgeon.
All in all it was better news than what I had prepared myself for. Everyone who has looked at Evan today is surprised with how alert and nonchalant he is about the whole thing. He made mention to me that he wanted to go home, but I told him not to worry and that mommy or daddy would be here with him the entire time. CURE has a Thanksgiving day feast planned for the patients tomorrow and my parents are sending food up with me for Cristy and Evan. I have a feeling we won't lack things to eat this weekend.
Music therapy time. Let's get to jamming.
This brings me to the title of today's blog, which is what I'm thankful for. One of the things I've tried to make clear to Evan is that feeling sorry for ourselves won't make this ordeal easier. Whining is another coping mechanism that I try to steer him from. He's been so strong throughout and I'm certain he's handling this better than I would whether I was 5 or 55. I mention this because it will come up in the bullet points below. I really have too many things to capture them all, but I'll try to highlight the main ones that come to mind.
I'm thankful for....
a strong wife and two strong boys. No matter what challenges crop up they've rolled with the punches and tried to bounce back more resilient and tougher than before. All of them have even managed to keep smiles on their faces when they have every reason to cry.
extremely supportive family and friends. Whether it's time with us or an ear to bend everyone has been so giving of themselves.
a job that gives me the flexibility to provide for my family. Not only financially, but also lenient with my time away from the office. This allows me to be there and take some of the burden off of Cristy and others.
my team of co-workers. They have all picked up my slack at different times never asking or wondering how it could benefit them, only trying to make sure it gives me cycles to devote to my family. I'll be forever grateful.
a strong-headed boy. I've always treated him older than what he is. Cancer is a terrible thing, but if he comes through this it will have been the greatest character builder anyone could think of. He amazes me with his tenacity and inspires me to be better than I ever thought I could. I know it sounds cliche, but the perspective I have for life now is only possible because of this life challenge.
the health of my family. All things considered we're doing all right and we'll continue taking things a day at a time.
I hope everyone has a great Thanksgiving tomorrow! Make sure to hug those you love and let them know how much you care about them.
Our appointment yesterday didn't go quite as planned. We noticed Evan's ankle was looking more red and swollen on Saturday evening. Sunday it looked even puffier. When Cristy got to the clinic on Monday morning she mentioned it to the medical team. They moved forward with his spinal tap, but held off on the other chemo drugs scheduled. There wasn't an opening at Scotish Rite so Evan was sent to Egleston for an MRI of his ankle. As Cristy and Evan were pulling into the driveway last night after a long day the doctor told her he would need to come back in for surgery.
It's about 10:40 a.m. on Tuesday and Evan is still awaiting a time for his ankle clean-up. The Orthopedic surgeon said the MRI showed pockets of fluid and that his bone might be infected again. If that's the case they'll need to drill in again essentially resetting our physical therapy progress. They're also going to install a drain line similar to last time to allow for mucus and other material to clear out of his system. The doctors don't know if his lowered immune system allowed this infection to grow or if the Keflex we were on before was keeping it at bay.
Taking his mind off of the hospital visit.
The medical team is giving mixed information on what happens post surgery. Cristy and I are preparing ourselves for spending Thanksgiving in the hospital. This isn't the worst thing in the world. We had already planned on spending Thanksgiving at the house to protect Evan so we won't have broken any commitments. Additionally having him under watch while his counts bottom out gives Cristy and I a bit more piece of mind. Guess we'll have to wait and see.
While he's under for his surgery they're also going to change out his PICC line. Both lumens have become occluded again preventing us from administering medicine through them or drawing blood. Because of the infections the medical team isn't comfortable going with a longer term solution, such as a port. I'm hopeful that we caught this early enough to prevent an extended stay and that his body rebounds quickly. Cristy and I are both a little shaken by this, but we knew this was a strong possibility during his nadir. His situation is pretty dynamic right now so I doubt I'll have another update until this evening at the earliest.
UPDATE
The surgery team came to Evan's room around 12:30 to prep him and took him back for surgery around 1:30. While under the doctor focused his clean-up efforts on the bone, ankle joint and surrounding tissue. I was hoping for better news. The report he gave Cristy was that the bone was infected as well as the joint. The doctor applied antibiotics to the affected areas and put the drain line in to help with healing.
Recovering from surgery.
Tonight the doctors are going to administer Zosyn as a catch-all antibiotic until the cultures come back. They're working hard to put together a plan of action by the end of the week, which means we could be here through the weekend. When I see the doctors tomorrow I'm going to try and get an idea of the severity of this infection and what risks there are short and long term.
PICC line dressing change. The nurses were able to clear the occlusion.
Besides the infection Evan seems in good spirits. I'm frustrated and concerned for a number of reasons. One of my concerns is this could potentially jeopardize the progress we've made in his physical therapy and set us back to square one. The Ortho team didn't get us much in terms of marching orders so for now I'm going to keep Evan off his feet with his ankle elevated. He's on Morphine to manage his pain and he's happy as a clam playing Minecraft on the Xbox. I should be able to get more answers tomorrow and get a few more pieces of his healthcare puzzle.
Playing with Daddy.
Nolan re-familiarizing himself with the CHoA exhibits.
Another weekend is almost in the books, but this one included another trip to the ER due to fever. Friday night around 8:00 Evan was wrapping up some PT work with Cristy and he mentioned he wasn't feeling well. I asked if he was sick and he said no, but something just didn't feel right. Initially I thought it was post-steroid effects on his body, but decided to check him out. He felt warm to the touch. Out of caution I decided to take his temp and confirmed that he was running a fever of 101. We spoke with the on-call doctor and she asked us to bring him in, but said she could be convinced to wait out the fever a bit longer. I told her it was fine and we'd bring him in.
Heart rate and breathing were elevated.
By the time Cristy and Evan arrived to the ER his fever had already dropped to 99. As per protocol they checked out his vitals, drew blood and prepared an IV drip of Zosyn. Because his counts dropped quite a bit since Thursday they wanted to be very thorough with his diagnosis. Interestingly his HR was high despite the lowering temp and his blood pressure was fairly low. The doctors decided to keep him for the night for observation. All of the counts in his blood that we monitor were low, particularly the Hemoglobin. I mention it because the general thought was that his heart rate was up in order to adequately supply oxygen to his body since his Hemoglobin was down.
During the night his blood pressure returned to an acceptable level, but his HR was still in the 140s. The cultures didn't show any signs of infection so the medical team gave Evan one more quick once over and sent Cristy and Evan on their way at 10:00 on Saturday. Cristy put me on the speaker phone with the NP that day and I got a chance to ask some questions. The NP felt we'd be better off at home, especially since we're scheduled to be back in Monday morning anyway. The doctors have suggested the very strong possibility of a blood transfusion. They want to bump his numbers up ahead of the chemo and procedures scheduled for tomorrow.
Eating breakfast prior to discharge.
After being released from the hospital Cristy took Evan to a CURE event at the new Menchie's in our area. It was their opening weekend and they had an event from 11 - 1 where people could come and get some free yogurt. As Cristy found out the daughter of the owner was a cancer survivor herself. They saw Evan and took the time to talk to him and Cristy for a bit. It was a good treat for him considering he had to spend another night in the hospital.
Enjoying some Menchie's.
I'm anxious to see his counts tomorrow since I'm pretty confident they'll be down even more. The next couple of weeks include daily chemo shots, oral chemo medications and a few IV based infusions. We've already tried to prepare Evan that he's going to feel pretty bad following some of these sessions. He's been tough throughout and I'm hopeful that he'll power through this like he has with the previous phases.
It's been a quiet week at the house which is something this family needed. On Thursday morning Evan had his last steroid treatment. There may be more in other phases of chemotherapy, but for the next 30 days we're done. He's been able to put weight back on and put himself in a healthier spot overall. In the pictures he'll appear fat, but much of this is water weight and bloating due to the steroids. He should return to a more normal size next week.
Relaxing in the basement with Daddy.
Yesterday Evan had blood drawn to check his counts and some of it was sent to verify that his Voriconazole levels are still therapeutic. We won't get those results until next week at the earliest. His blood counts have remained fairly stable despite the chemo. As his cells continue to die off his nadir will hit next week. The bumps on his skin are mainly scars from the surgeries and even while feeling his arm we're unable to find any lumps. It would appear the Voriconazole has suppressed this very tricky outbreak (finally).
In addition to the blood draw Evan also had an ultrasound done on his chest to check the status of his blood clot. Unfortunately it's still there despite the blood thinners we've been on since July. The nurse Cristy spoke with couldn't comment much further on it because it's not her field of expertise, but a thrombologist is being consulted. I was hopeful we might see a reduction in its size or eliminated completely so that we could pare back the twice a day Lovenox shots. After talking to Cristy about it my first question was how does someone fall into a career studying clots? But I digress....
In order to put Evan in the best possible spot to remain healthy for the holidays we had to reluctantly decline spending Thanksgiving with the family. Cristy and I wanted some form of normalcy so we've decided to cook a scaled down dinner here at the house on that Thursday. It won't be the same, but keeping Evan out of the hospital is our main objective.
To give Evan a break from sitting around the house Cristy found a matinee of Trolls and took him earlier this week. I was glad to see him get out while he can and do something he really enjoys. We bumped PT back up to twice a week. I'm toning back my regimen with Evan. I was pushing him hard this weekend and earlier this week, but will give the plan more time to take effect.
The next movie we're likely to try and go to.
On Monday Evan has another appointment which will include a spinal tap. Based on what Aetna will cover all at once, versus spread out over time, will determine if he has another appointment on Wednesday or not. I'll explain in a later blog. Until then I hope everyone takes care, enjoys time with family over the next week and takes a moment to reflect on what they're thankful for.
I thought for tonight's entry it might be good to offer up a generalized update on where we're at overall. Similar to a presidential State of the Union, I'll break this up into various topics.
Chemotherapy
We're on day 20 of this phase of chemotherapy, Delayed Intensification. As has been the case in the past, the steroids have Evan acting out of sorts. He's set to conclude them again on Thursday morning. He's not scheduled for any IV based drugs this week. The reason being is doctors would like to see how his blood counts look before beginning the more toxic drugs. The medical team estimates he'll be at his most vulnerable sometime around Thanksgiving.
Blood Counts
Evan's blood shows average-to-good levels, despite the chemotherapy. Our primary oncologist told us some of these counts are because of the steroids. It has a stimulating effect on bone marrow and this has spiked his white blood cell and ANC numbers. Platelets and RBCs are within normal ranges and Hemoglobin is just under an acceptable level.
Family picture from our Camp Sunshine photo session.
Miscellaneous Health
There are a number of areas the medical team has been working to improve. We have an ultrasound scheduled for Thursday to re-evaluate the clot in Evan's chest. Assuming the blood thinners have dissolved it, we're told we can reduce his Lovenox shots from twice to once a day. The doctors feel that keeping him at once a day would prevent clots from forming in the future.
Today is the last scheduled day of Keflex (antibiotic) meaning we can remove another nine pills from his daily intake. After Thursday, when we get to pull the steroids, that leaves us with Voriconazole as the last important drug. The others he takes as preventative measures from side effects due to the various treatments (Prilosec, Periactin, Zofran, Lovenox).
A little Nerf gun target practice.
Evan has been to the ER a few times over the last 30 days. Each time it was related to a fever and each time blood cultures did not yield any infections. With his improved white cell counts this leads me to believe it's likely some sort of reaction his body is having to the chemotherapy. On the plus side his fungal infections seem to be under control and his overall appearance has improved.
Physical Therapy
Evan's reluctance to walk has caused me to hit my boiling point. We've been walking more laps around the main level to improve his strength and confidence. He fights us every step of the way which makes it even harder to make significant progress. Cristy and I have decided to go back to twice a week physical therapy sessions with Children's Healthcare. Once he gets warmed up with a few laps his posture and balance seem to improve dramatically, I only wish he would embrace the exercise more than he does.
Walking a few laps before bedtime.
Mental Health
At this point on Day 151 we're hanging in there. Our biggest challenge in my opinion is finding time for each other. By the time we get Evan treated, the boys fed, cleaned up and in bed it's usually 9:30. This doesn't include cleaning, laundry, exercise or relaxation time. Speaking for Cristy, I think we'd both agree that as long as Evan comes through this in remission without a relapse it was worth it. I firmly believe we're going to come through this stronger as a couple and as a family.
As with any State of the Union you need to inspire people and give them reason to believe that tomorrow will be a better day. I can tell you Evan is better today than he was in June, July and August. Each day he improves a little bit physically, scholastically and mentally. We address each challenge as they arise, but at the moment our main focus is keeping him healthy while his immune system is so compromised. We'll continue leaning on each other and loved ones to navigate these uncertain waters, looking forward to brighter days.
Super Evan!
I leave you with a song Cristy has mentioned gives her motivation and strength. It's called Unstoppable by Sia. We hope it one day inspires Evan to fight through adversity when he's not feeling his best. Enjoy!
Earlier today Evan completed another session of chemotherapy. We got postponed for a day, but the doctors said this wouldn't present any additional risk to his treatment plan. This morning Evan received two chemo drugs along with a drug to help minimize damage to his heart. He came home a little sleepy and groggy, but we just figured it was from waking up early.
This morning at the clinic receiving chemotherapy.
His blood counts continue to look solid, especially considering how much his body has been through. Next Monday Evan can remove Keflex (antibiotic) from his daily schedule. We've started steroids back up this evening and these will run until next Thursday. The expectation is that his appetite will go back into overdrive and his demeanor will be best compared as bi-polar.
Now on to the subject of his appetite and ultimately his weight. This morning he was down to 20kg (44 lbs). Cristy and I took our foot off the gas because we've been able to feed him in the evenings via his feeding tube. During this time we've focused on healthier foods so in my mind it hasn't been a complete loss. Overall his body looks much better. After this next round of steroids Cristy and I will need to make sure we stay on top of his caloric intake.
Cristy found out more about Evan's chemotherapy schedule following Delayed Intensification. It appears I was mistaken on when he'll begin Long-term Maintenance. His next round after DL is called Interim Maintenance II. At a high level this will include chemotherapy every 10 days, so not drastically different than right now. I'm unclear what the dosage sizes will look like; however, as usual it will probably be tailored to Evan's bone marrow characteristics.
You may have noticed my comment earlier about Evan being groggy and us chalking this up to a long day. Well, that may or may not have been the case. However, upon waking up from his nap he was running a fever. I called Cristy while leaving work and found out she was waiting on a call back from the doctor, but he was already up to a temp of 102. It was rush hour so I told her to start heading that way and I'd meet her there to either take Evan or Nolan.
As normal, they took a blood sample, monitored his vitals, administered some antibiotics (Zosyn) and gave him some Tylenol. Upon getting to the ER the nurses took Evan's temperature and he was already down to 99 - 100. His heart rate and respiration were a bit high, but Cristy noticed they were high at the clinic this morning too.
This evening in the ER awaiting next steps.
One more thing I wanted to note in today's blog was regarding Evan's nadir. Some may remember this is the point of a chemotherapy cycle in which the blood counts are at their lowest. The doctors calculate his nadir from today's chemo will fall sometime around Thanksgiving. Evan's counts will likely take a dive again during the second half of Delayed Intensification (in December) after he starts some different medications. The nurses have warned that blood and platelet infusions may be required during this time.
While this will definitely hamper our availability during the holidays, we hope it will give us something to be thankful for once we're through this trying phase.
Evan's appointment was set for today, however it got postponed until tomorrow morning. Not sure if this was a scheduling snafu or if they were overbooked today. I'll provide another update tomorrow evening with his status.
The past few days have seen some highs and lows. On the plus side Evan's appetite is still fairly strong in spite of being off steroids since Wednesday. In addition to that he continues to work hard in PT and seems much healthier physically.
Now on to the negatives. Friday night Evan spiked a fever at the house of 101.3. The on-call doctor asked us to bring him in and prior to receiving Tylenol in the ER he registered a 102.2. Because he wasn't showing any other symptoms of being sick we felt pretty sure this was likely related to his most recent session of chemo. The blood cultures haven't returned anything and if I was a betting man it won't culture. We have to be on the ready at any moment so Cristy decided to invest in a nicer overnight bag on Saturday. This appears to be the norm for Evan, sadly Cristy and I are quickly becoming more used to the process.
Just another night in the ER.
I'm going to chalk this up to one of the drugs he's on, but Cristy and I have started to notice the tops of his arms becoming blood red. It seems to come and go and we don't see a correlation between temperature, food or another other factors. We'll mention it to the medical team this week to see if they have any thoughts.
Evan's room looking more and more like a hospital.
This coming week Evan has chemotherapy scheduled for Wednesday, which includes another week of steroids starting on that day. Evan's taste buds have evolved to favor Indian food for the moment, so we've got a week's supply of ingredients to make butter chicken everyday. I'm not normally a picky eater, but I can't see myself eating the same foods for four or five days straight again. I'm excited to see what his weight will be on Wednesday. The feeding tube in the evenings allows us to get even more calories into him and his body looks really good.
Although unintentional, this reminds me of the Leia / Jabba the Hutt scene in Star Wars.
Hopeful for a quiet week as we get into a dangerous portion of this phase. On Wednesday I'll provide another update with blood counts and such.
Evan's latest session of chemotherapy has come and gone. Yesterday he spent the entire day at the clinic for assorted tests, checkups and treatments. Upon his return he was a little groggy and tired, but overall looked pretty good all things considered. Evan's latest blood counts looked extremely strong. In fact, they were so good that Cristy and I both did a double-take and spoke with Evan's primary doctor about them. Please see the image below:
Updated blood counts.
For those unfamiliar we typically focus on WBC, RBCs, HGB, Platelets and ANC. Evan's extremely high WBC and ANC had us a bit worried as we thought it could be a sign of the cancer returning. Our doctor assured us this is normal due to the steroids. In addition to killing cancer cells steroids stimulate the bone marrow and sends a signal to release more cells. If it wasn't so hard on your organs I'd suggest that steroids were a miracle drug.
Killing time between procedures.
This was a pleasant surprise for me as I assumed his numbers would have taken a hit from the previous session of chemo. Our doctor indicated it takes 10 - 14 days for blood cells to start dying off and to expect Evan to be much more vulnerable sometime next week. He also tried to prepare us for the high possibility of fevers returning during this phase. To minimize this risk and based on Evan's immuno-history (which is not a real word) he received an IVIG treatment yesterday.
The weight gain makes him look much healthier.
There are some obvious benefits to higher WBC counts, namely Evan's skin and bumps have really started to look better. Additionally, his weight continues to rise giving him much needed support. He eventually grew tired of fried rice and we've moved on to chicken, jasmine rice and cucumbers. I've literally cooked the same chicken and rice combination for the past few evenings. When he's not eating that cheeseburgers are his food of choice, which is unusual because prior to getting sick he didn't even like burgers.
2nd cheeseburger of the day.
Today Evan is meeting with the plastic surgeon and having another ECHO done on his heart. My fingers are crossed that the "infection" or "muscle" that they saw in his heart during the last scan looks better. Evan's primary doctor was a bit perplexed why his heart would show anything unusual as the drugs he's been on prior to this finding would have had no effect.
The steroid treatments ended yesterday, but pick back up next week. With any luck I'll get my happy-go-lucky boy back this weekend and if he's feeling up to it we can do a movie night. PT is on-going and not much to update on that front. His legs feel much stronger to me, but there's obviously still a balance issue going on. We'll continue working with the therapist with the hopes of having him walking again soon.
UPDATE - Cristy: Evan and I had another long day of appointments and waiting today. Evan's follow-up with the plastic surgeon went well. He looked at the incision on his wrist and was pleased with the way it is healing. He advised to put Vitamin E oil on it a few times a day to help with healing and scarring. Otherwise, he said we can mark him off our list of doctors.
As for Evan's ECHO, everything looked good today. His numbers indicating how well his heart is squeezing were higher today than last week. The doctor said the last test just seemed to be a "hiccup", and some slight variations are common. As for the possibility of endocarditis (an infection of the valves), he saw no signs of infection. The spots seen last week appear to just be from the way Evan's mitral valve is formed.
The doctor did suggest Evan see a cardiologist on a regular basis, just to monitor him, and to keep an eye on him should any changes arise or should he end up in the hospital again for any other infections. We go back in January to establish Evan with a cardiologist and get a full exam. It was another long day, but at least we got some good results!
Halloween has come and gone for 2016. The family and I had a great time this year trick or treating, spending time with friends and enjoying various festivities. Despite Evan's mobility challenges we made the most of the evening and collected quite a bit of candy. I never realized how hilly our neighborhood was until last night.
Fell asleep watching Star Wars earlier this week.
While we're on the subject of food I thought I would update folks on the biggest development since my last blog entry. Evan's appetite has taken off due to the steroids. Last week Cristy and I didn't feel like dirtying the house cooking so we ordered Chinese food. Evan thoroughly enjoyed the fried rice, so much so that the next morning he asked for more. And then again at lunch. And again at dinner. We're at about five days in a row now of fried rice. The restaurant in our area surely appreciates our near daily visits for refills. Evan has requested fast food more than normal as well. The mood swings are a bit of a drain, but as long as he's eating we can deal with it.
Updated schedule along with Cristy's meticulous time keeping.
Late last week Evan's PICC line was becoming sluggish. Cristy called the hospital to raise the concern and they asked us to come in yesterday to flush it. The main fear is allowing bacteria to fester in his line and then go directly into his heart and blood stream. I'm happy to report the nurses got it cleared and for now it's fully functional again. While there they weighed Evan and he gained two whole kilograms, up to 20.9 kg (46 lbs)! He's still down overall, but his increased appetite, combined with the food we feed him via stomach tube each night, will surely put him in a more healthy state ahead of these tough chemo sessions.
The boys were beyond excited to get out the door.
Monday afternoon we also received the results from some blood work that was drawn last week. His anti-fungal levels have returned to a therapeutic level. We saw a dip in the numbers a couple of weeks ago and there was talk of increasing his dosage again. The medical team has to be very careful dosing this particular drug, Voriconazole, as it can cause hallucinations, color blindness and temporary blindness. His skin has started to look better over the past week and his cysts are decreasing in size.
8:00 medications being administered while out trick or treating.
Evan has another session of chemo tomorrow, followed by another heart ECHO on Thursday. He's also scheduled to meet with the plastic surgeon on Thursday to check all the surgical sites for his most recent operations. I won't know his blood counts until tomorrow at the earliest, but I'm expecting a noticeable drop because of his last chemotherapy session. As more sessions take their toll Cristy and I will need to be vigilant with his health and cleanliness.
Evan was a little wobbly, but rarely complained.
With another Halloween in the books we continue to look towards the future. We're pleased with the progress so far, but we still have a ways to go. Counting the days of this treatment phase and hoping for the best.
