Masthead header
Owen's Story bio picture
  • 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 129-131

Happy Easter!  What a beautiful holiday weekend.  Jeff had the day off on Friday so we spent it running around doing errands.

Saturday, Jeff ran in a race at North Park in the morning. He is training for the Pittsburgh half marathon at the beginning of May, so he thought he would do a little warm up practice race of 8 miles to get him in the racing mood.  He did great!  It was a beautiful morning for a run.  His parents, me and the boys went to watch and cheer him on.  After the race we headed to Nanny and Poppy’s for the Easter Egg Hunt!  Owen and Logan had so much fun playing with all of their cousins. Here is shortly after the end of the hunt.

Owen was doing good until around dinner time.  I noticed his cheeks were really red, but didn’t think too much of it.  After dinner, he was complaining that his heart was beating fast.  I checked and he had gone into SVT.  I tried having him blow throw a straw, cough, but nothing was working.  It wasn’t until I held him upside down in a head stand that it went back to normal.  Not sure why it came about, but it was good we got his heart back into the normal rhythm.

This morning he woke up and his belly was a bit upset.  He has been sick on and off all day today.  The medicine didn’t seem to help.  When he wasn’t being sick he seemed fine.  He had a great time when Nana and Pap Pap came to visit.  He also got a nice long nap this afternoon, which was much needed.  Hopefully his belly calms down soon…

We hope everyone had a wonderful Easter!!

Owen’s Leukemia – Day 128

He was feeling good again today!  He had a lot of energy and was really in the mood to play some baseball.  I would throw this little foam ball to him and he would hit it with his golf club.  Surprisingly, he was doing really well!  He had some really great hand / eye coordination.  Maybe someday he will play ball.  It is interesting that he has loved baseball since before he even turned two.  We had taken him to see his Poppy throw out the opening pitch for a Pirates game, and I think that is where it all began.

Check this out… he even has the collector’s card pose:)  Pirates shorts, baseball socks, Cubs hat, and of course, Spiderman shirt.

Aunt CathyMarch 29, 2013 - 6:35 am

I absolutely love the “rookie” pose. Glad Owen had a good day. I hope everyone has a non-eventful weekend and Happy Easter!

Owen’s Leukemia – Day 127

Back to the hospital.  I feel like we are always there… the lady reassured me that there are definitely others in the same boat.  It is so sad that there are so many families that have to endure this journey.  I also feel so fortunate that we have such a wonderful, supportive group of family and friends that are there to help us out through this rough time.  I only pray that those other families are as fortunate.

Anyways, Owen was a little rockstar today.  He was very brave and did great.  He was super nervous on the way there, and he asked me several times “Mommy, is it going to be a bad day?”.  We talked to his Doctor, and we are going to do the IV form of the Erwinia Asparaginase.  He will start on the 8th of April and we will have to go in to the hospital 3 days a week for two weeks to get the IV.  It will fall right in the middle of when he was supposed to get a little break during this phase, so no break for him:(  We have to keep trucking through this and keep thinking about the end will eventually get here.

 

AlisonMarch 28, 2013 - 12:56 pm

I am so sorry he won’t get a break, but I am happy he will get the IV & not the shot!
We will miss you guys this weekend.

evanshouMarch 28, 2013 - 1:04 pm

Hi Alison! We will miss you all too! I can’t remember the last time we weren’t in Pinehurst for Easter. Best wishes to you and your family!

Owen’s Leukemia – Day 126

Today was much better.  We did a lot of relaxing, playing and art time.  Owen felt good all day.  The effects of the drug from yesterday were all gone.

Thanks for the well wishes, thoughts and prayers.  Hopefully tomorrows clinic visit is way less eventful.  He gets Vincristine and Doxorubicin tomorrow which he had last Wednesday.  Every week is different, so I hope his body handles it well.

Here is a shot taken during the egg coloring that we did after dinner.

As a side note… I do wash his shirts… there are a  few that are his absolute favorites, and he always insists on wearing them.  I feel like every picture I post of him he has the same clothes on:)

Owen’s Leukemia – Day 125

We had a clinic visit today.  He was scheduled to get PEG- L-asparaginase this morning.  They do it by IV and it takes one hour to infuse.  They monitor his vitals every 15 minutes for 2 hours, and for the first 15 minutes, the nurse needs to stay in the room.  This is because it is really dangerous if they have an allergic reaction to the medicine and typically, if you are going to react, it happens within the first 15 minutes.  It took us approximately 7 minutes for him to react.  They hooked him up and started the pump and not long in he said “Mommy, my heart is beating really fast”, and seconds later he turned almost neon red and started coughing (because his airway was constricting), then he vomited.  We went from having one nurse in our room to about 6 in less than a few minutes.  They gave him benadryl,  prednisone, pepcid, zofran, and saline, all to counteract the effects… what an incredibly scary situation.

So, he only got about 4cc in him out of the 50 that he was supposed to receive, so it didn’t “count”.  We talked to the head of the Oncology Department since our Doctor was caring for inpatients on the other side of the floor.  He was explaining the chemo medicine and what are options are going to be.  They obviously can’t give the PEG again due to the reaction, but the asparaginase part of it he most likely will be able to tolerate.  The thing is, the PEG part has a longer 1/2 life (which means it stays in your system longer) of 2 weeks, where the asparaginase he would need to get more doses.  This used to be the protocol before the PEG was transitioned in, so it is still efficient at killing the cancer cells.  The bad part is that he would need to get it 3 times a week for 2 weeks and they do it by giving him a shot in his thigh.  Apparently, in Europe the do it via IV and have been doing it for years, but it isn’t standard practice here in the States yet.  There is a current study that is going on, and Children’s Hospital of Pittsburgh is participating in it, so that might be an option for Owen.  I think that sounds so much better than having to get it in his leg.

After Owen’s nice 1 1/2 hour nap at the hospital, we got to go home… well, actually to Nanny’s.  Thankfully, Nanny was with us today since Jeff had to work.  I don’t know what I would have done without her there.  On the way home, Owen said “I want to go to Poppy’s Daycare to play”!  Poppy has been a HUGE help in watching Logan all the days we go to the hospital.  I think Owen thinks he is missing out when Logan is there and he isn’t.

Tomorrow we get a break, but back to the hospital Wednesday for more chemo!

Aunt CathyMarch 26, 2013 - 9:48 am

What a scary ordeal for all of you. Please know my thoughts and prayers are always with all of you.

DianeMarch 26, 2013 - 1:37 pm

My heart stopped reading this post. So scary for you all. Hoping there are better days ahead.

NikiMarch 26, 2013 - 7:29 pm

Wow, my heart is racing now! You are so strong!! Thinking of you!