Owen's Story

We had a good month!!  After they reduced his medicine, Owen’s body finally had some time to heal.  He really felt good all month.  It was such a relief.  He was in last Wednesday for his monthly treatment, and all of his numbers were good, so they did start to increase his medicine again, but not too much.

He also saw the Cardiologist for his SVT over the past month, and they increased his medicine there too.   He has been having some episodes of SVT, so they wanted to bring the medicine up to see if that helps stop them.

Owen started baseball, and had his first game on this past Saturday. He had so much fun, and played hard.  That’s about all that is new for the month!

I thought last month was hard, but a little over a week after Owen’s last treatment, we had to take him to the Emergency Room with a fever.  He had been tired all week, and not acting himself.  That Friday, I got a call from the school nurse and she said he was in her office and said that he wanted to just sleep all day.  He had a low grade fever of around 100, so I had Nanny go pick him up.  I was working, and thought maybe he needed to just sleep for a while at their house.  I talked to her in the afternoon and she said he had barely ate, then had checked his temperature and it was up to 101.   Well, that is our trigger, go to the hospital.

In the Emergency Department, they accessed his port to draw some blood and started an IV.  They also wanted to get an X-ray because he had been coughing for the past month and they wanted to see if he had pneumonia.  Before we could go to the X-ray room, his heart started beating fast, which in turn caused half of the ER staff to run into his room.  A heartbeat in the 240’s causes them to react quickly.  They wanted to hurry up and give him this drug that slows the heart down and brings him out of his SVT, but they didn’t want to do it through his port (which is actually the best way to give it according to the Cardiologist), so they were going to poke him with another IV on his arm!  I was trying to do anything I could to not have them do that, so I asked Owen if he could throw up (which I knew would bring him out of it).  He thought he could, and it was a success!  His heart rate came down, and we adverted the drugs.  Poor kid was starving afterward, but it was a good thing.

The X-Ray was “inconclusive” as to whether it was pneumonia or not, but they started him on the anti-biotic and told us we would be staying the night.  It ended up being a 3 night stay, because they wanted his blood counts to start rising before they sent us home.  They took him off all of his oral chemo to let his body heal.  We went back the following week to have his counts checked again and they were still not up enough to re-start his meds, which was actually a great thing!  That extra week really helped with all of his healing.

This past week was his spinal tap.  His counts were back up where they should be and he received his spinal tap procedure with IV chemo as well.  They did also start back up his oral medicine, but they cut it back significantly.  They will keep increasing it each time from here, but for now it is good for his body.

So much going on!  His baby sister is turning 1 this Thursday, so we built a set for me to take her one year photos.  I wanted a “model” that would be still to see how the background looked in the pictures, so Owen is my guy.  He wasn’t extremely thrilled, but he sits still.  I swear they do have clothes… these boys just chose not to wear them 😉

I think Owen could really get this title.  He has had a really hard month.  Through the course of this past month he has had, 2 ear infections, cuts on his fingers and toes that are so deep he can barely walk and do things with his hands, mouth sores that are all over his lips, tongue and down his throat and to top it off, he got a nose bleed at school today that took over a half hour to stop.  And through it all, he hardly complains.  He kept going to school, birthday parties and play dates.  I seriously don’t know how he did it.  We thought that maybe his immune system is just so suppressed right now, that his dry skin can’t heal.  We talked to his doctors today, and they think it is Hand, Foot and Mouth Disease.  It isn’t contagious now, but it could have been when he first got it, which was probably over 3 weeks ago.  It is viral, so there is nothing they can do for it, just wait.

The other night, it broke my heart.  This was our conversation… Owen: “Sometimes when I am quiet, I listen for God, but I don’t hear him.”  Me:  “Are you talking to him?”  Owen:  “Yes, I am asking him to help me get better, but it hasn’t happened yet.”  It was hard for me to not cry.  I love this kid.

If I could only keep clothes on my boys….

Owen had his treatment last week, and it was a pretty “easy” visit.  We did however get some wonderful news from his Doctor.  He told us that January 23, 2016 will be Owen’s LAST DAY OF TREATMENT!!  So exciting to finally have an end date to look towards.  This will be the day that he will get to stop taking all of his medicines (well, with the exception of his heart medicine).  He will still need to go back for testing for 5 years after that date, and they start at once a month, then spread out as time goes on.  We told him he only has a year left, but I don’t really think he truly gets what that means.  It is so far away in his eyes, and until he doesn’t have to take the medicines everyday, I don’t think he’ll understand.  He did say, “so that means I will be able to eat snacks after dinner?”.  Right now, he has to wait 2 hours after any food to take his one chemo drug, and he dislikes that very much.

We finally have snow in Pittsburgh, and the kids are loving it!  Everyday they want to play outside.

I can hardly believe that it is the last day of 2014!  It seems like it was just yesterday we were ringing it in (although, I was pregnant last year and don’t think we even stayed up).  So much has happened in just a year!!  Owen and Logan became big brothers in April to Avery, the boys had a breakthrough with going under water swimming this summer, Owen started Kindergarten this fall, Logan potty trained for his 3rd birthday… so many fun milestones!!!

Owen ended his year with treatment this morning.  Jeff took him down for sedation with the spinal tap.  He was very brave and did an excellent job!  His ANC was up again this month, so they increased both of his oral chemo medicines that he takes at home.  It has been up for the past few months, so that is why they changed it.  The medicine he takes is to suppress the white blood cells and when they are high, they think the medicine isn’t doing its job.  I hate seeing him having to take more pills, but I would rather that than have him come out of remission.

He joined basketball this winter and started back in the middle of November.  It is very challenging for him being that the program is designed for Kindergarten through Second grade, but they are all on the court at the same time.  So, the Kindergarteners are expected to do what the Second graders do.  He is doing an excellent job!  It has been quite a struggle.  He really did not like it at the start and could not understand why it was so hard.  We kept making him go, and he is liking it better.  As part of the program, they get to “perform” in between two high school games!  The first was in between the girls JV and Varsity games on the Monday before Christmas.  They will perform again between the boys game in January.  I was so worried that he wasn’t going to participate because this is pretty far outside his comfort zone, but he ROCKED it!!!  AND, he is looking forward to doing it again!  I am so proud of him!!!

Here is the video that I took.  DISCLAIMER:  I have never shot a video before using my camera, so there is a lot of focus issues as well as shakiness.