Owen's Story

December 4, 2015 was Owen’s last spinal tap!  Such an exciting day.  No more chemo injected into his spinal fluid.  He told all of the doctors that he was going to fight the sleepy medicine and wasn’t going to sleep.  Well, we all know how that turned out.  Upon waking, he said “Did I win?”.  He is only out for about 15 minutes, and the hardest part is once he wakes up he has to lay down flat for a half hour.  He is always still out of it for about an hour after, so trying to explain to him that he has to stay down is so difficult.  He says some of the sweetest things, like “Mommy, I love you.”, but there are other things that come out his mouth that you wonder what they do see when they are sedated.  He asked me to put the umbrella up this time, and as usual, everyone has multiple eyes and two heads.  I will not miss these sedation treatment days… no matter how often you see them, it is never easy watching them put your child to sleep.  That thought of what if something happens is always in your mind.  Hopefully he will only need sedated one more time, to take his port out.

He has been feeling pretty good since Friday.  Just the normal sleepiness that is associated with the Chemo.  We had a fun weekend of cutting down our Christmas tree, a birthday party and decorating gingerbread houses.  Everyone here is ready for Christmas!  Owen’s next treatment was scheduled to fall on New Year’s Day, but due to the holiday, they moved it till January 8.  This will be his last dose of chemo administered at the hospital.  He will then continue with his at home chemo until January 23.  I can’t believe that we are getting so close to the end!!!

Exactly 3 years ago today is when they told us Owen has Leukemia.  I can still remember it as vividly as yesterday.  I said to Owen on Monday that today would be 3 years, and he looked at me and said “Are you going to cry, Mommy?  Were you happy or sad when they told you I had Leukemia?  I am almost done and I am fine.”  My 6-year old, consoling me.  He doesn’t remember a time of not taking medicine, of not having a port, of not going to the hospital all the time.  It is so crazy that half of his life has been just this.

His most recent treatment was a little over a week ago.  They increased his medicine.  His ANC was over 6,000, which is the highest we have ever seen it.  The Physician’s Assistant said that it could be a number of reasons.  Maybe his body is fighting off a sickness, or his weight has increased so the medicine isn’t as effective or quite possibly it is his body just saying “I’m done”.  He said that it isn’t uncommon when getting close to the end of treatment for kids bodies to more or less reject the medicine.  So, we are back up to pretty much where we were at the beginning of this year with dosage.  That was before he got pneumonia and was hospitalized.  We are just praying that his body continues to be strong for the next few months.

Our family would like to wish everyone a Happy Thanksgiving!  I know we have so many things to be thankful for, and can not wait to celebrate with our family.

School is in full swing and Owen is still liking it on most days.  It is definitely a big transition going from half day Kindergarten.  Pretty much everyday of the first 2 weeks of school he came home and wanted to take a nap.  His teacher says they just need to build stamina, and he keeps telling me they are doing a good job at it, but it will take some time.  Soccer has started as well, and he likes it.  He is more the social coordinator than the athlete, but he is having fun and that is all that matters.  He likes to be on the field, talking, cheering, but not so much in to stealing the ball and going for the goal.

Owen had another spinal tap last Friday.  Everything looked normal, and he did good.  This week has been rough on him.  He fell asleep in class on Monday, and fell asleep at the nurses office on Tuesday.  His body just needed a break and then he was feeling better.  It still amazes me how he does it all.  Chemo on Friday and up early for a soccer game on Saturday.  He just keeps pushing through.  We went to the Cardiologist this morning and all was good on his EKG.  The doctor said he doesn’t need to see him again until late Spring, and hopefully by then his port will be out.  His doctor is thinking that after his port is out, he wants to try bringing him down on his heart medicine to see how he does.  It would be so wonderful if we could wean him off of it!  Time will tell…

I so wish I could get all three kids to cooperate at once for a picture, but that seems impossible.  Here are the two boys.

Brotherly love

Where has the time gone?  Summer flew by, and school started yesterday!  It almost seems impossible.  We had a great summer.  The boys had fun swimming, playing outside with the neighbors and visiting cousins.  Owen has been feeling great and was so excited to start first grade!  He is also starting soccer next week!  We’ll see how this goes.  He has tried it twice in the past and said “I just don’t like soccer.”  But, this summer, when his brother played he said he loved it and wanted to play in the fall.  Boy scouts also starts in September, so he is going to be a busy boy!

His past two treatments went well.  They were the quick ones, but he still has the after effects for the next week.  Tiredness and headaches are the biggest culprits. September we have another spinal tap.  It is kinda nice that they switched our treatment days to Fridays, because now he has the weekend to recover before going back to school.  I am nervous to see how he does though because it is a long day at school, and he is used to taking naps everyday for the week after his treatment.  He is pretty familiar with the school nurses, so I am sure he will spend some time with them 😉

Here is a picture from the beach.  I was planning on trying to get one of our whole family, but then forgot my tripod

Where has the time gone?  I apologize for the lack of updates, but that means that he is doing good!  A lot has happened since his last post.  Owen has done so much!!  First off, he turned 6!!!  I can’t believe it!   He finished Kindergarten, and really enjoyed it.  He loves learning and has been working over the summer so that he doesn’t forget it for next year.  He has also been playing baseball.  He did much better this year and had a lot more fun.  He did a week long camp where they gave them extra tips on how to get better.  They even got to have Neil Walker, 2nd baseman from the Pirates, come and talk to them one morning.  He talked about his baseball experience and let the kids ask him questions too.  You would have thought that was the highlight of camp, but I think for Owen it was getting a loose tooth!  The one day he came home and said, “Mom, I was biting on this metal ring at camp today because I thought it would maybe make my tooth get loose, but it didn’t.”  The next day, I picked him up he said “Guess what!?!, I got hit in the face when I was trying to catch a fly ball, and now my tooth is loose!”.  I think maybe he didn’t catch it on purpose 😉  This week we realized one more is loose, so I think the tooth fairy will be visiting us any day now.

His last treatment was a spinal tap, which is never fun.  He did pretty good.  He was tired for the week following, but didn’t get sick.  The Fellow who was the one who told us of his diagnosis the very first night, and has cared for him since the beginning, informed us that she is moving to Memphis to work at St.Jude.  So sad to see her leave.  She was always so good about answering emails, and was really like “family”.   Owen’s Oncologist will continue to see him, but they switched our days because of his availability.

Owen enjoys Cub Scouts and they were supposed to have a rain gutter regatta, but due to all of the rain we have been getting, it has been postponed until September.  That doesn’t seem to make sense, but anyway… Here is a picture of Owen sanding down one piece of his boat.  Mind the hair, he won’t get it cut because it is “cool” to have long hair…