Day 1116 - Nearing the end of summer vacation

     It's been a fast summer so far and it won't be too long before the boys are back in school.  Between Aurora Day Camp, Camp Sunshine, Six Flags and White Waters the kids have been on the go most of the time.  We're very fortunate that Evan's health is in such a state to allow him to take advantage of the amazing opportunities that have presented themselves this summer.  Before the kids head back to school Cristy is also taking the kids to a cabin house in North Carolina for a week, compliments of Believe in Tomorrow.  Due to work commitments I won't be able to join this year, but I'm sure they'll have a great time.

     Last week Evan got to experience his first week away from us at Camp Sunshine in Rutledge, Ga.  Because of family camp we've gotten the opportunity to know many of the families that attend and counselors that volunteer so we knew that Evan was in great hands.  There were photographers that went around camp and captured special moments from the kids during the week.  With other kids being in the photos I'll post what I can here on the blog, but out of respect for those families I'll likely keep many of them offline.  Evan says he had a great time and wants to go back next year.  Cristy and I were thrilled to hear this since we were concerned that he would either get a) homesick or b) miss his gaming console too much. :)  Nolan was also a little lonely without his big brother and towards the end of the week kept asking when Evan would be back.

Greeted by a cheer line upon entering

The UGA football teams visits the campers every year

     Next Tuesday Evan has his monthly chemo appointment (second to last).  Nolan, Cristy and I have all been sick for the last couple of weeks, but Evan has managed to avoid catching it.  I really do wonder if the IVIG that he gets monthly keeps him healthier than us.  Every time I think I'm nearing the tail end of this cold it flares back up.  Cristy is in the same boat as me and we're having a hard time getting back to normal.  Since he's not showing any signs of illness I hope Evan's blood counts are in line with what we're expecting.  It would surprise me quite a bit if we made any changes to his treatment plan this late in the process.  No plan yet for the removal of the port.  Tentatively the doctors are thinking a couple more months of IVIG will be beneficial, so we'll leave the port in for the time being.

     Cristy sent me a link this morning for Shutter Magazine.  I don't want to spoil the surprise that I felt too, so I'll just say click on the link, navigate to the index at the front and read the article starting on page 28.

Shutter Magazine - July Edition

     Cristy and I are still discussing dates and details for a celebration marking the end of Evan's treatment.  I'm trying to remain calm as this is simply another step forward in our journey.  The fear of relapse is real and will always be with us, but it's also important to recognize the milestones along the way.  I probably won't elaborate much more in this blog post, but expect the one on August 5th to be a rambling mess of a lot of emotions from the past three years.

Cristy put Nolan to work while Evan was gone

     For those celebrating the 4th of July tomorrow, have fun and be safe.  We're taking the kids for the Kennesaw fireworks show tonight and then visiting a friends house tomorrow for pool time, grilling out and fireworks in the evening.  Should be a great time and I'm looking forward to the time off with the family.

Evan is bottom left in this photo (rainbow poop emoji hat!)

Day 1101 - Three years ago yesterday...

     Meant to get this blog entry up yesterday, but got tied up with all kinds of things going on.  Health-wise Evan is doing well, with only two more clinic sessions to go.  His counts were all a bit elevated, but Evan has a little cold at the moment and he's gained quite a bit of weight since his last dosage calibration.  For now the doctors agreed to leave his quantities the same.  Other than that, nothing major to report other than the typical bumps and bruises.

Nolan went with Evan and Cristy for this appointment

     A couple of weeks ago Evan and Nolan started day camp at Aurora.  If it wasn't for the commute for Cristy I'm sure she'd love the peace and quiet, but as it stands she typically stays in that area because of the unexpected traffic conditions in Atlanta.  The boys are really enjoying themselves, even more than last year.  There always seems to be some sort of an event or themed celebration planned and there is no shortage of activities to wear the kids out.  Very grateful that many kids with cancer and their siblings get to take part in charities like this.

     This coming weekend we drop Evan off for a week at Camp Sunshine.  He hasn't been old enough in the past, but the counselors have talked to us about it during previous Family Camps and I know he's excited.  It will be interesting to see how he'll respond to his first week away from the family.  Getting homesick is to be expected, but I really hope he enjoys the moment and doesn't think too much about home.  We're supposed to write letters for him to read and I plan on keeping things light. Maybe I'll mention how the house devolves into chaos when he's not around to hold us together.

     As the title suggests, June 17th, 2016 was the beginning of this journey for us.  I hesitate to call it a nightmare because we have absolutely grown stronger from it; however, early on I easily would have classified it as that.  It's a mixture of emotions as I think back through the good and the bad from the last three years.  In the weeks leading up to our diagnosis the signs were so clear, but Cristy and I had no clue of course.  I'll never forget those first 72 hours in the hospital and how much despair I felt.  I'm so thankful for the CHoA staff and their guidance, encouragement and empathy early on.  Family and friends also helped quickly pull us out of that early tailspin.  I know the medical team deals with this on a daily basis, but those first few days have got to be hard on everyone involved, families and staff.

Aunt Ru with the boys

Cristy and Evan both photo-bombed me!

Spending some time at Monster Mini-golf

     The boys have grown as well.  When I ask Evan about certain milestones from the hospital he can rarely recall them.  On one hand I'm glad he doesn't remember much, but on the other I do want him to feel gratitude for the countless people who have helped us along the way.  Nolan was too young to remember much.  He's generally just happy participating in whatever activity we're doing and loves his brother very much, despite the fact that they argue multiple times per day.  Cristy and I realize that the fear of a relapse will always be with us, but this experience has taught us how to take it on the chin and keep looking towards tomorrow.

Father's Day with the kids

Father's Day celebration with my dad

Day 1081 - One more bout with steroids to go

     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.

Day 1046 - Putting a stake in the ground

     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!