Today's blog will be short and to the point. Wednesday morning Cristy and the boys went to our local CHoA satellite office for Evan's bloodwork. She went early so that the doctors would have plenty of time to review and get back to us with feedback. We anxiously waited on a call back and decided to start pestering the medical team around 3:00. We got a call back around 4:00 from one of the nurses with Evan's counts. They all picked back up to almost acceptable levels and 0 blasts were found.
It was welcome news and I was glad to hear that Evan's marrow is producing healthy cells again. Evan's doctor called back on Thursday to let us know we could resume Evan's chemo plan. In all Evan was off his meds for 6 days. We're going to continue weekly blood draws to keep a close eye on Evan's counts. His ANC was back to a state where Cristy and I are getting more comfortable allowing him out in public.
I'll provide another update next week as more information is available on his latest counts. Thanks to everyone for their prayers and well wishes for Evan's health.
Friday, May 25, 2018
Monday, May 21, 2018
Day 704 - End of school
After much deliberation Cristy and I have decided that today will be Evan's last day at school. With his counts low and with the main academic items out the way there was no point in risking illness or injury. This morning we attended his school's end of semester/year awards ceremony. I'm pleased to announce he won Principal's Honor Roll for this semester, Principal's Honor Roll for the year and The Leader in Me award for the year for exhibiting strong character. Despite all that's been going on in his life he continues to move forward and has had a strong year academically. Obviously academic achievements are very important, but I'm just as proud of the man he is becoming and how well he has handled adversity.
I'd like to recognize his teacher this year, Mrs. Devine. She has been a great partner with us, keeping us informed of Evan's progress, working with us when he needs to miss school and she genuinely cares about her students. Thank you for making our 2017 - 2018 year a success.
Not much to report on the health front. Cristy and I have decided to wait until Wednesday before we go for another blood draw to check counts. Our doctor indicated it can take up to two weeks to notice a difference because the chemo drugs typically stay in the system for that amount of time. Realistically I don't have any expectations either way, but I'm hopeful the counts lead the doctors in a direction that allows for a decision versus more wait and see.
In all the excitement on Thursday I forgot to report on Evan's visit with his orthopedic doctor Wednesday afternoon. After giving Evan a good once over and reviewing his scan he was happy to report that the growth plate in his right leg, once previously thought dead, is growing new bone. Everything appears to be healed/healing as expected. With any luck Evan will continue to grow like any other child his age and we no longer have to consider killing one of the growth plates in his left leg.
As more information becomes available I will continue providing updates. Cristy and I have tried to remain positive and I'm hoping that this is another dip in this on-going roller coaster ride.
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| Nolan getting some dancing in before the ceremony |
I'd like to recognize his teacher this year, Mrs. Devine. She has been a great partner with us, keeping us informed of Evan's progress, working with us when he needs to miss school and she genuinely cares about her students. Thank you for making our 2017 - 2018 year a success.
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| The boys with Mrs. Devine and Mrs. LaCroix |
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| Annual leadership award |
Not much to report on the health front. Cristy and I have decided to wait until Wednesday before we go for another blood draw to check counts. Our doctor indicated it can take up to two weeks to notice a difference because the chemo drugs typically stay in the system for that amount of time. Realistically I don't have any expectations either way, but I'm hopeful the counts lead the doctors in a direction that allows for a decision versus more wait and see.
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| Principal's Honor Roll for the semester |
In all the excitement on Thursday I forgot to report on Evan's visit with his orthopedic doctor Wednesday afternoon. After giving Evan a good once over and reviewing his scan he was happy to report that the growth plate in his right leg, once previously thought dead, is growing new bone. Everything appears to be healed/healing as expected. With any luck Evan will continue to grow like any other child his age and we no longer have to consider killing one of the growth plates in his left leg.
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| Early morning ortho appointment with Ronnie Milsap |
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| Principal's Honor Roll for the year |
As more information becomes available I will continue providing updates. Cristy and I have tried to remain positive and I'm hoping that this is another dip in this on-going roller coaster ride.
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| Killing time at the clinic |
Thursday, May 17, 2018
Day 700 - Searching for answers (UPDATE)
This morning Evan went in for his monthly chemo appointment. Evan and Cristy were mistakenly taken to the wrong room, and after a minute Cristy's mind started to run wild. The mistake was quickly corrected, and they were sent to the Infusion area as normal. They accessed Evan's port, drew his blood and started his medications. Evan's primary doctor eventually came in and they called me to deliver the news; it appears Evan has relapsed. His blood counts were all much lower than normal, indicating the leukemia has returned.
The doctor told us he would meet with his colleagues to determine the best course of action for Evan going forward and let us know something tomorrow. Because of Evan's past infections they're less likely to entertain certain treatment options that might have worked with other patients. I sat in stunned silence on the call listening to the doctor provide his feedback. We should know more tomorrow, but it appears that regardless of what plan we go with Evan will be admitted to the hospital for some period of time.
I couldn't be more surprised than I am right now. I'm scared, hurting, confused and dread having to see Evan go through more pain and suffering. Not sure what the future holds, but I hope there is some sort of treatment option that doesn't completely cripple him again. He had just gotten back to the point where he was moving around normally again.
Cristy is going to try and take him to school in the morning so that he can say good bye to his teacher and friends. The official last day of school is next Wednesday, but I'm going to advise against him going due to his extremely low blood counts. It's going to be a tough weekend ahead unless we can get some answers. I'll update the blog as reliable information is available.
UPDATE as of 5/17/2018 @ 9:25 p.m. EST
Cristy and Evan returned home around 6:00 and after talking briefly about everything from baby sitters to cancelling summer plans we received a call from Evan's doctor at 6:30. His first statement was that he had good news. After running some additional tests on Evan's blood work the pathologist (who stayed late to run the test) discovered that there were no leukemia cells.
What does this mean? Even the doctor wasn't sure what to think of the findings. While it's good news that there hasn't been a relapse as originally indicated, the medical team is still unsure what is going on. Evan's counts showed a high number of lymphoblasts (immature white blood cells) and low hemoglobin, platelet, red and white cells. His theory at the moment is that Evan's bone marrow is simply exhausted due to two years of fighting and drugs.
Next steps are somewhat dynamic pending further data. In the short term he has asked us to hold any more chemo medication. We'll up our blood tests to weekly to keep a closer eye on his counts overall. Should leukemia present itself we'd then go back to working with the medical team on options. The doctor felt it counter-productive to talk next steps and needlessly worry ourselves if a relapse isn't confirmed.
Naturally Cristy and I were ecstatic to hear the news. We've been worried sick and it felt like day 1 all over again. The doctor apologized for the false alarm and assured us he doesn't give relapse information without being certain. He's an older doctor and informed us this was the first time in his career he has seen counts like this without a relapse. For the moment we're in wait-and-see mode. I'm sure I'll be overly cautious and just hope we can finish out the remaining school year without any more surprises. We're not through the woods yet, but for the time being we're relieved that leukemia has not been found.
The doctor told us he would meet with his colleagues to determine the best course of action for Evan going forward and let us know something tomorrow. Because of Evan's past infections they're less likely to entertain certain treatment options that might have worked with other patients. I sat in stunned silence on the call listening to the doctor provide his feedback. We should know more tomorrow, but it appears that regardless of what plan we go with Evan will be admitted to the hospital for some period of time.
I couldn't be more surprised than I am right now. I'm scared, hurting, confused and dread having to see Evan go through more pain and suffering. Not sure what the future holds, but I hope there is some sort of treatment option that doesn't completely cripple him again. He had just gotten back to the point where he was moving around normally again.
Cristy is going to try and take him to school in the morning so that he can say good bye to his teacher and friends. The official last day of school is next Wednesday, but I'm going to advise against him going due to his extremely low blood counts. It's going to be a tough weekend ahead unless we can get some answers. I'll update the blog as reliable information is available.
UPDATE as of 5/17/2018 @ 9:25 p.m. EST
Cristy and Evan returned home around 6:00 and after talking briefly about everything from baby sitters to cancelling summer plans we received a call from Evan's doctor at 6:30. His first statement was that he had good news. After running some additional tests on Evan's blood work the pathologist (who stayed late to run the test) discovered that there were no leukemia cells.
What does this mean? Even the doctor wasn't sure what to think of the findings. While it's good news that there hasn't been a relapse as originally indicated, the medical team is still unsure what is going on. Evan's counts showed a high number of lymphoblasts (immature white blood cells) and low hemoglobin, platelet, red and white cells. His theory at the moment is that Evan's bone marrow is simply exhausted due to two years of fighting and drugs.
Next steps are somewhat dynamic pending further data. In the short term he has asked us to hold any more chemo medication. We'll up our blood tests to weekly to keep a closer eye on his counts overall. Should leukemia present itself we'd then go back to working with the medical team on options. The doctor felt it counter-productive to talk next steps and needlessly worry ourselves if a relapse isn't confirmed.
Naturally Cristy and I were ecstatic to hear the news. We've been worried sick and it felt like day 1 all over again. The doctor apologized for the false alarm and assured us he doesn't give relapse information without being certain. He's an older doctor and informed us this was the first time in his career he has seen counts like this without a relapse. For the moment we're in wait-and-see mode. I'm sure I'll be overly cautious and just hope we can finish out the remaining school year without any more surprises. We're not through the woods yet, but for the time being we're relieved that leukemia has not been found.
Monday, May 14, 2018
Day 697 - Getting stronger physically
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| A day out with the Pruitt ladies |
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| Mother's Day lunch with the whole family |
It's been busier than normal for us over the last few weekends. Over the last three weeks we've participated in a couple of fundraiser walks and wrapped up our cardio-ways this past weekend at the Inflatable Run at Georgia State Stadium (formerly Turner Field). Before we get into those details let's cover Evan's medical updates.
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| Opening day for Avengers Infinity War |
This coming week Evan has his monthly chemo appointment at the clinic and he's also meeting with his orthopedic surgeon another day this week. Cristy and I are unsure if they're just going to give him a once over or try to take x-rays to check for bone growth. Other than a little flat footed walking he's doing well. It's night and day different, even from six months ago. As usual I'm anxious to get Evan's count and see if any additional bone growth has occurred. Since changing Evan's dosages of 6MP to dinner time he hasn't vomited nearly as often.
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| At a Camp Aurora event at Lucky's in Roswell |
On April 29th the family and some friends took part in Cure's Lauren's Run. Because this race is a bit more "official" from a runner's standpoint Cristy and I opted for the 2K. Navigating a double-stroller is difficult enough in a casual 5K and I didn't want the stress of running it into someone actually competing. After the race the kids were able to enjoy themselves at some of the activities and booths setup. The following weekend we participated in the Make-A-Wish 5K at Stone Mountain with a couple of friends. It too was a lot of fun, but seemed to thin out pretty shortly after the race concluded. Nevertheless, we played and took advantage of the entertainment opportunities.
Which brings us to this past weekend. We took the boys to the Inflatable Run at Georgia State Stadium. This was basically a 1 mile course at the former grounds of Atlanta Fulton County Stadium, that you run three times to equal a 5K. It was a hot day so I knew getting the kids excited to complete the whole thing would be tough. Despite my reservations we left the stroller at home. I'm extremely proud to report that Evan completed his first 5K all by himself (and Nolan did great too).
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| Getting ready for the water sponge fight |
On our first lap we couldn't have been more than a quarter of the way in and Evan wanted to stop. I had to resort to my dad voice to keep him moving early on. As we continued to walk I listened to him and offered up my insight into getting through the race. I told him I was amazed that someone so mentally strong could want to give up so quickly, preventing him from getting physically strong. He offered up an excuse of being in the hospital bedridden for two months and the fact that he had four surgeries performed on his leg. It really was a compelling argument had it come from anyone other than one of two people I am trying to mold into a young man. I told him that that was the reason he had to work harder than others and that he shouldn't rely on the sympathy of others.
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| Make-A-Wish activities area post-race |
I wish I could say that those words alone motivated him to push through the aches and tired muscles, but that wasn't the case (I ended up bribing him with video game time later). What I can tell you is his whole mindset began to change as we continued to talk about how far he's come. In reality it is probably the only time I've ever heard him verbally acknowledge some of his challenges. I was so proud of him at the end and I made sure to recognize his accomplishment. We grabbed a bite to eat with Nolan, while Cristy and another friend continued walking. He never acted tired the rest of the day and I'm glad that he pushed himself to complete a race that he ultimately really enjoyed because of all the slides and obstacles. I hope that he remembers that day and the next time he's faced with adversity he does what we've always done throughout our journey; take it one step at a time.
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| Road sign at MaW 5K |
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| Placard at MaW 5K tent |
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