Last week Evan went for his monthly visit to the clinic. He received his spinal tap, IV antibiotics, chemo and of course his quarterly steroids. No one was safe from his mood swings this time. Hopefully he wasn't too difficult to deal with, especially considering last week was his final day of 2nd grade. His counts looked really good and Cristy even ran into a couple of Evan's NPs that we were close with early on. They both commented on how good Evan looked and were happy to see him doing so well.
As mentioned above, Evan has successfully completed the 2nd grade! I want to say thank you to his teachers, Mrs. West and Mrs. Lacroix. He has grown so much this year mentally and physically and we're so pleased with his development. He received the Principal's Honor Roll for the year and his grades continue to look good. Naturally he's been looking forward to the summer and tries to bargain with me nightly to stay up late. Hope to set the tent up in the backyard one night this weekend to take advantage of the dry weather.
Cristy's Aunt Ruth will be joining us next week and I know the kids are excited about that. In addition to that Camp Aurora will begin in a couple of weeks. This allows both kids to get the chance to experience camp and reconnect with friends they met last year. Cristy and I are also looking forward to the summer, but with this early heat wave I'm sure we'll be tired of it by late-July.
Happy Mother's Day!
Recently a family that is a member of our Cancer Parents group on Facebook reported that their child had relapsed after a year and seven months in remission. This was a sobering reminder that even if we are able to ring the bell in August, that the fear of a relapse will always be in the back of our minds. Wishing that child a speedy recovery and strength for the family.
Wrapping up with photos of the family from the past month. It's been a busy month due to t-ball, Cub Scouts, travel and school ceremonies.
We're in the home stretch to the end of Evan and Nolan's school years. No major illnesses or ailments to report. At the moment he's progressing as expected health-wise. Evan had his monthly chemo appointment on April 18th. His counts looked very good (ANC of 1.68) and we're staying the course as far as dosages and such.
While there Cristy also received some good news. His last day of chemo is confirmed for August 30th. Following that treatment we'll have the option of ringing the bell that day or choosing another day to celebrate. If you're not familiar with this, it's when a cancer patient concludes treatment and gets to ring a bell to signify the end of this part of their journey. It's a day I've dreamed of for a very long time and I hope that we get to make it a reality. Evan will continue to keep his port for two months following treatment and will receive IVIG to help prop his counts up until the chemo is completely out of his system and his bone marrow has recovered.
Cristy and I are still undecided on what we plan to do following treatment. We'd like to have a party locally to celebrate, but we've also discussed possibly taking the kids on a cruise for a few days. The challenge there is school will be back in session and the kids may need to miss a few days to make this happen. Either way, stay tuned to the blog for the latest on that.
Yesterday the family and I got a chance to enjoy a beautiful Easter day down at my parent's house with friends. As usual we had a great time and everyone left stuffed as ticks. Some pictures from the day can be found below. Earlier in April we also got to attend the bi-annual Family Camp at Camp Sunshine. We truly value our time with the kids and with other families. It is so therapeutic and inspiring to see so many strong individuals.
On March 13th Evan participated in a Fun Run to raise money for his school. Much to our surprise he raised the most money. Thank you to everyone who helped him surpass his goal!
If you had asked me where I saw Evan after 1,000 days of treatment at the onset of our journey I probably would have struggled for an answer. When I first heard how long it would last I thought the nurse had misspoke. Three years?!!! But, here we are ~1,000 days later still continuing to fight. I think some people fail to realize the long-term impact chemotherapy has on the patients. Hearing and vision loss, damage to vital organs, secondary cancers and impacted motor skills are just a few of the side effects of these toxic drugs. We have been very fortunate to have only suffered a couple of broken bones thus far.
Family picture from Thumbs Up trip @ Great Wolf Lodge
Menchie's with Uncle Rhod
In the same vein I do have some good news to report. Evan was discharged from physical therapy a couple of weeks ago. At this time his flexibility, strength and coordination are all within acceptable standards for a child his age. This is yet another milestone to check off our list. I'm very proud of the way Evan fought through his physical challenges despite all that was going on. His therapist noted that Evan was the only child that she cared for who was able to come in and work with her on chemo days. He simply shrugs off the drugs and does what he needs to do to get better.
Pokemon battle
Marvel Universe Live at State Farm Arena
On February 22nd Evan went in for his monthly IV chemo appointment and quarterly spinal tap. His blood counts were perfect and he handled the long day at the clinic like a champ. Still no official end day for treatment, but we're planning for sometime in August. Additionally, since there is still concerns about Evan's immune system post-treatment we don't know how long he will keep the port or how long he'll stay on IVIG. The doctors all seem to indicate it could be a while, but obviously it's not sustainable to stay on indefinitely. The medical teams plans to convene soon to talk about what his treatments look like post-chemotherapy.
Music therapy during his latest trip to the clinic
Got any plans on April 13th? If not join us for the Aurora Walks charity event (details below). Aurora Day Camp is a charity that allows children with cancer and their siblings to enjoy the camp experience free of charge during the summer. What makes it somewhat unique is it's staffed by someone from the CHoA medical team at all times and they have plans in place for transporting these children with special needs in the event of an emergency Here is a link to our team if you would like to donate or just want to hang out with us for the day.
You may recall in the blog on January 30th that Evan was able to take part in a photo session organized by Rally, but put on by So Many Angels. We received a canvas style portrait from the session and couldn't be happier with how it turned out. Once all families have had a chance to pick-up their pictures the digital images will be made available for download. It was a really neat experience and it's a great picture to hang in my mancave. Thank you to all who donated their time and resources to make this happen.
Good news! Evan received the results from a recent x-ray to discover he has a broken bone in his right foot. Naturally you may be thinking, "Geez Blaine, how is that good news?". Well, the answer is this is the cause of Evan's MRI showing increased blood flow, which was initially thought to be another bone infection.
Movie day compliments of Aurora Day Camp
When Cristy gave me the news I wondered whether this meant a cast, decreased physical activity or any changes to his PT plan. As of this posting, the answer to all is a no. Our primary oncologist, in consultation with Evan's ortho Dr., agreed to simply bring Evan back in four weeks for another x-ray. As usual there is no slowing Evan down. He hasn't voiced any complaints about pain and regularly loves taking part in strenuous activities. I guess kids just have a different threshold for pain than 40 year old men finding a new ache or pain daily. Out of an abundance of caution I'll probably pull back on some of the more physically demanding activities that he likes to take part in.
Bingo and BBQ with Camp Sunshine
Next week Evan goes for his monthly clinic appointment; however, this one will include his quarterly spinal tap, methotrexate, vincristine and steroids. Cristy may also hear from the doctors on a date to remove Evan's port once he's done with treatment. There was some discussion of leaving it in post-chemo since the doctors want to keep him on IVIG for some period of time. Hopefully we'll have a decision on all of that soon.
Magic time with Mr. Tone
We've been very fortunate over the last few weeks to be able to participate in some outings with various charities. One of them was new to us and we got the chance to learn quite a bit more about them. They're an up and coming charity that provides spiritual support and trips for families fighting cancer called Thumbs Up Mission. The founders started this charity after seeing the strength of their son who battled brain cancer. This charity hosted us, along with 105 other families, at Great Wolf Lodge two weekends ago. I want to say thank you to Thumbs Up Mission and Great Wolf Lodge for the opportunity, and to our host family for helping all of us have such a fun and memorable weekend. To learn more please check out the links below:
This past weekend Cristy, the boys and I got to take part in more fellowship with local families via a day at the movies with Aurora Day Camp and Bingo/BBQ with Camp Sunshine. Interesting note about the movie theater we attended; it was recently renovated (beautifully I might add) and is owned by another pediatric cancer family. They hosted us for a viewing of Lego Movie 2, complete with refreshments and popcorn for the kids free of charge. This is the sort of business I'll happily get behind in the future. Link below for more info:
The kids have Winter Break from school next week so I'm hoping to get a day or two off of work to spend some time with them. Day 1000 in our journey is coming soon so please keep an eye out for that blog. I'm going to try and do something special for that entry. Adding a song to this blog because it's really motivational to me and has been stuck in my head lately. It's called Get Up by Shinedown.
As usual it's been a while since the last blog post. Over the last couple of weeks I've been holding off providing an update until Cristy and I were able to capture as much reliable data as possible. Let's rewind to about two weeks ago. Evan had an MRI scheduled with his orthopedic doctor to review bone growth and the overall health of his right leg. Evan has been bouncing off the walls for months so we had no reason to think that anything was wrong.
Hiking Kennesaw Mountain
Last week we received a call from his ortho doctor that the MRI showed a possible infection in his lower leg (again). If this had been our first such experience with orthopedics we probably would have taken this diagnosis at face value and started talking about options; however, we've been dealing with enough varying issues with Evan that we feel like he knows his body well and so do we. His blood counts all seemed to indicate that he was more than capable of fighting any infections. Along with that he has not expressed any signs of discomfort, which he has always done prior to any medical discoveries in the past.
When we received the call it happened to be a day that I was working from home and luckily was able to take part on the call. We asked the doctor if it could be anything else. He said it could be a case of inflammation, but wanted to consult with Evan's primary oncologist before ordering any test. Coincidentally Evan had his monthly IV appointment two days later and they were able to order up an inflammation test prior to leaving the clinic. The doctors and nurses didn't seem too concerned overall and the test showed low inflammation. Not sure where this leaves us. Evan continues to carry on without a care in the world, Cristy and I are still uncertain what other tests or treatments we'll need to consider for the future. With all of his increased activity I'm hoping it's simply a case of inflammation or improved blood flow in that region. If more information becomes available I'll certainly share it here.
Photo session with Rally. Can't wait to see the finished product
Besides this scare that has popped up, things have been relatively quiet around the house. The kids have been trying to stay active despite all the rain we've received lately. Both are doing well in school and with warmer weather I'm hoping to get them involved in sports or extracurricular activities. Nolan will be playing t-ball in a few weeks and he's really excited to make some new friends and get out on the field. Cub Scouts and potential instrument lessons are Evan's focus for now. Cristy and I are talking about some athletic alternatives that he can do while on chemo, such as swimming, but can't seem to find a good fit yet.
Closing out with a song straight from Evan's playlist that seems fitting considering the situation we find ourselves in. This journey has been long, frustrating, stressful, inspiring, motivating and any other adjective you can think of to describe a life changing challenge. With the conclusion of chemo scheduled for August it's important that we keep our eye on each day and not look too far ahead. Additionally we need to continue to tackle each challenge that presents itself with the same vigor we have in the past. Having said that, the song is called Whatever it Takes by Imagine Dragons.
