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  • Hello, and thanks for joining me on my journey.

    This is Owen. He is a 3 1/2 year old boy who is loving, energetic and loves to have fun. He was diagnosed with Leukemia on November 18, 2012. This is his story.

Owen’s Leukemia – Days 143-145

We had a great weekend.  Friday we went to the hospital for Owen’s appointment.  They wanted to draw some blood to check his counts.  We also talked to his Doctor about the Erwinia and what it means that he isn’t getting any more doses of it.  He made us feel more at ease about them stopping it.  It was the last round of this medicine and he did get 1/3 of it.  He said if this would have happened during Induction, they probably would continue to give it to him.  Like he reminded us, all of these medicines are working together to do the same thing.  Kill the cancer cells, and he is going to be getting much more chemo through out the next few years, that this shouldn’t matter.

He felt really good all weekend.  Still has his appetite, which we thought would be dying down a little now that he is off the steroids.  This morning he had another episode of the SVT.  We had him do a headstand and it went back to normal.  I really want to talk to his heart doctor because this really isn’t making any sense.  They increased his dosage, so he really shouldn’t be having these episodes.  Maybe this medicine doesn’t work for him?  We go back in May, so I guess we’ll talk to him then.

Here is a shot of the boys in Owen’s new car!  I took it earlier this week, but with all of the hair cutting I never got around to putting it up.  He loves it and asks every morning if he can ride it. (they were on the way to a baseball game, hence the bat in the front seat):)

KimApril 15, 2013 - 12:01 am

I absolutely love this picture! They are such cute brothers!

Aunt CathyApril 15, 2013 - 6:21 am

So, so adorable. I love this picture. Owen taking his little brother to a baseball game. And check out the wheels.

Owen’s Leukemia – Day 142

ALL GONE.

I can’t believe how quick it goes once it starts.  Monday was the first day we noticed some of it coming out, and Tuesday we did a cut, but today he had a lot of bald spots… it was time for it all to go.  I think he looks AWESOME!

He had a great day!  Nana and Pap Pap came for a visit and he spent pretty much all day outside playing!

DoreenApril 11, 2013 - 8:58 pm

He looks very happy with his new look!

KimApril 12, 2013 - 7:54 am

That was fast! I agree, he looks great! He’s rocking the no hair look way better than his uncle Rusty :)

Rusty EvansApril 13, 2013 - 7:04 pm

He is my nephew Kimi!! Looks great, we all miss him

Kendra CodolApril 13, 2013 - 9:42 pm

He is just precious! Xoxo

Margaret AnnApril 16, 2013 - 12:19 pm

how cute. Looks like Uncle Rod for sure now!!!!!!!!!!!!!!

Owen’s Leukemia – Day 141

Back to the hospital today for another round of the Erwinia.  His appointment was at 1, but they wanted us there before noon so they could draw his bloodwork.  They send it to the lab stat, but that means the lab has 60-90 minutes to get the results back.  The longer we wait for the results, the longer we wait for him to get his medicine.  His counts were fine so they were good to give the chemo.

It goes in over an hour, then they monitor him for an additional hour after that.  He seemed to be doing fine until 45 minutes in… he got sick again.  This time I was pretty sure it was the drug and not what he ate, like I thought on Monday.  He got sick at the same point in the infusion, and his Doctor came in and stopped the medicine.  He said vomiting is one of the reactions if you are allergic and being that this is the 3rd time that he has got sick with the asparaginase it is most likely that he is allergic to it.  The Doctor doesn’t want to give him any more of it.  He was scheduled to get 4 more doses, but they are going to cancel them.

We are concerned because we know this is an important drug, but his Doctor assured me that he is going to be getting a lot more medicine and he already has received a few doses of this drug, so it shouldn’t put him at a greater risk of relapse.

Other than being sick, he had a pretty good day.  We dropped Logan off at daycare this morning and Owen got to go in and say “hi” to his friends.  On the way home from the hospital we were going to pick Logan up and Owen was pretty insistent about wanting to go in and play with his friends some more.

We still have to go back to the hospital on Friday for some bloodwork and for them to check him out, so they left him accessed.  He will get the tubies out for the weekend and we will not have to go back to the hospital again until next Wednesday.

WendyApril 10, 2013 - 8:47 pm

You sure are brave, Owen! Sending big hugs and lots of prayers :)

Owen’s Leukemia – Day 140

Well, the day has finally come.  We shaved Owen’s head… well, not completely, but super short.  We noticed yesterday that his hair was starting to fall out, but today, he was pulling it out by the handfuls.  He asked to get it cut.  We thought we would go short, but not completely bald just yet.  Here is the before:

And the after:

He is happy with it.  I told him he looks super cool!  He had a fun day today.  We played outside pretty much all day!  It was another beautiful day in Pittsburgh.  Tomorrow we head back to the hospital for more chemo.  Hope it goes better than Monday.

RoseApril 9, 2013 - 9:11 pm

He looks adorable-such a handsome boy! Hope all goes well tomorrow!

KimApril 10, 2013 - 8:30 am

I love his little portrait pose in the second picture :)

It was so fun to skype with him last night. What a funny kid!

Aunt CathyApril 10, 2013 - 9:04 am

Owen is really styling with his new hair cut and choice of shirts. Looks so cute!

DianeApril 10, 2013 - 1:34 pm

He looks great with his new haircut!

DeirdreApril 10, 2013 - 3:07 pm

Looking good, Owen!! Super cute haircut!

Amy AApril 11, 2013 - 4:38 pm

Superman, indeed! Makes his eyes sparkle even more:)

Owen’s Leukemia – Day 139

Happy Monday!  Today starts the really rough part of Owen’s treatment.  The next three weeks are going to be hell.  This week we go today, Wednesday and Friday for Erwinia (the drug that he is getting because he was allergic to the PEG), next week we go Monday, Wednesday (which is a whole list of BAD), Thursday home nursing comes to give him chemo at home, Friday back to the hospital and the nurse comes again on Saturday for more chemo.  That third week we go back in on Wednesday and it is the same as the week before with the home nurse coming Thursday, Friday and Saturday.  I have no idea how his body is going to handle this.  The good thing to look forward to is I think he gets a little bit of a break after these three weeks before he goes back into Interim Maintenance.

Today he got the Erwinia.  Jeff and I have been back and forth since last week trying to decide if we should put him on the trial study or not.  I mentioned before a little bit about the study.  It is to give the Erwinia via IV verses the muscular injection that is the standard of care.  Owen was pretty insistent that he didn’t want the shot in the leg, but as they were doing the EKG today and he was screaming his head off, I was wondering if we made the right decision.  We went on the study, but that means more blood work and they have to do 2 EKG’s.  Did I mention that he HATES having all of those stickers and leads put all over his chest?!?  I feel so bad for the nurses.  Getting his port accessed was quite a struggle too.  I think everyone on the whole 9th floor probably heard him then too.  We decided to leave his “tubies” in since we go back on Wednesday and didn’t want him to get poked again.  He dislikes the bandage to hold the tubies on, and then he won’t move that arm, but I think it is better then going through the screaming match again on Wednesday and Friday.

He didn’t have any allergic reaction to the Erwinia, so that was good.  There is still a chance that he reacts one of the next 5 times, and if he does, they stop that medicine and there aren’t any other alternatives.  He did get sick a couple of times today, but they weren’t sure if that was because he ate a ton of spaghetti for lunch or if it was from the medicine.  I am going to make sure he doesn’t eat that much on Wednesday, and hopefully it doesn’t happen again.

We got home and he had a super special surprise in the driveway.  A very good friend gave Owen his own little power wheels Dodge Viper car!  He LOVES it!  It is blue (his favorite color) and just his size.  He was a little timid at first driving it, but after about 15 minutes he was doing laps around the house.  This was the first time I think I saw him smile all day.  I will have to get some pictures soon to share.

Dinner time came and he started not feeling well again.  He was ready to lay down.  He was asleep by about 7 pm.  I hope he feels better tomorrow…

PattyApril 8, 2013 - 9:39 pm

Hang in there Owen you are a tough little guy. You are going to beat this!! You are always in my prayers!

KenApril 11, 2013 - 8:47 pm

OMG! I’ve wanted a dodge viper forever. Owen you are so lucky! Maybe I can ride it before I have my pizza. :)