Owen's Story

Right before Owen was diagnosed, we were at the mall as a family, and Santa was there.  Owen was so scared (as he has been every year that he has been alive) and didn’t want have anything to do with him.  Lately, he has had a change of heart.  He has been saying “When we go back to the mall, I want to tell Santa what I want for Christmas.  I won’t be scared.”  Jeff and I knew that we weren’t going to be able to take him to the mall due to his counts and the risk of him catching something, so we told him that we would right him a letter so that Santa would know what he wanted.  And then…. a special visitor showed up at our house today!!!

And he wasn’t scared!!!  He loved him and wanted him to stay and play  One more reason why Owen’s school is awesome… they contacted me and said that they would be having the brunch with Santa at the school this upcoming week, and since Owen was obviously not going to be able to be there to participate, that they would send Santa to our house if we wished.  How amazing is that?!?  I can’t say how thankful we are enough.

Owen had a good rest of the day.  We did have a small incident that for a minute thought we might be heading to the hospital… Logan was playing and knocked Owen in the nose with his head and gave Owen a nosebleed.  For any typical kid, you wouldn’t think anything of it… but a kid with Leukemia, it can become a huge deal.  If he ever has any bleeding that lasts longer than 10 minutes we are heading to the hospital.  Luckily, it stopped after a few short minutes.

Another good day today.  It is so nice to see him doing some walking around the house.  His heart did some of those fast palpitations a few times today and they seemed to last longer.  I really hope that they are able to fix that on Wednesday.  It really scares him, and as soon as it starts, he always wants to lay down.

He had some fun doing different crafts today.  Some with Mommy and some with Daddy.  Owen really enjoys the weekends and having Jeff home all day.

Until tomorrow…

Owen had a Great day today!  He felt good all day and even was walking some all by himself!!!  He was also so excited because he got to talk to his teachers and school friends via Skype.  It was so sweet, he actually got a little choked up when he first saw them all this morning and they were saying they missed him.  He is such an emotional little guy (must take after his mama).  He loved seeing them all on the screen and couldn’t stop talking about it the rest of the day.  He goes to such an amazing daycare (pre-school).  They are so caring and love him so much.  He kept telling me that he is going to get better so that he can go back to school.

The Physical Therapist also came today.  He was doing so good, she didn’t even have to do much.  Owen was teaching her how to play Bunco, and how to make butterfly soup.  I told her that today was her last day.  He is really doing much better and the things that she has him do are already things that we have him working on.  So, if he does need to get more therapy, I think we are going to take him to Children’s hospital therapists who are more equipped to work with kids.  Our therapist was super nice, but she doesn’t work with kids that often, and I think she had a little bit of a rough time coming up with things to challenge him.  The one that he had in the hospital was much better at creatively getting him to do things without him thinking about it.  There is something to say about being good with working with kids.  You have to have a whole different approach to make it beneficial.

We found out today that his procedure next Wednesday is going to be first thing in the morning.  This is such great news because he has to fast for 8 hours prior, and if they would have made him wait until the middle of the day, I don’t think this little steroid boy could have made it.  He is so fixated on food, that as soon as he is done eating he asks how long he has to wait before he can have more.  He is most likely going to be able to tell time by the end of these.

Well, I went upstairs after I wrote last night and Owen kept complaining that his belly hurt… that went on for a couple of hours and then everything came back up.  He was pretty sick for a while.  We finally got him to take some Zofran, which is to help with the nausea, but he didn’t want the whole dose.  He did fall a sleep for a little while, but then woke up with his belly still hurting.  He did take the rest and was able to sleep till this morning.  I felt so bad for him.  I guess this is kinda how I almost always pictured chemo effecting people.  My husband would probably say I watch too much T.V.  I just hope he doesn’t have these spells that often.

Today was a good day after a slow morning.  He still wasn’t feeling the best this morning.  He was still complaining of his belly hurting, but he said it wasn’t the same feeling as he had last night, so I am wondering if all of the muscles were just sore from vomiting so much.  He got a second wind after a morning nap and had a pretty playful afternoon.  He was actually walking some again today which is so great!!  We keep trying to use Christmas as an incentive to get his legs strong… so he can walk down the stairs to see what Santa brought him!  I think he is working towards that!!

So, this is what gets a smile on his face pretty much everyday (multiple times per day)

Back to the hospital today for some chemo.  This is the last dose of the Vincristine for this round of treatment.  I was really worried he was going to freak out about having his port accessed to give him the medicine, but he did AWESOME!!  I am so proud of him!!  He didn’t cry or anything.  The doctor came back and said that the nurses were all in the hall fighting over who was going to get to have him next week because he was so cute and did such a good job.

The doctors went over his blood work and his counts are up (about double) from last week.  That means that he is starting to have some more good cells in there doing their job.  Next Wednesday is the big day… he gets the Bone Marrow Aspiration and the Lumbar Puncture.  So, they are taking marrow to test it, and giving him chemo through the spinal fluid.  Next Wednesday will end the first portion of the treatment “Induction”.  The next phase is the Consolidation phase.  The doctors went over it a little bit, but didn’t give us any paperwork on it yet.  I think they still want to see the results from next week.  Next Wednesday will be the last of the steroids for this month.  In the Consolidation phase he will be taking another chemo drug by mouth everyday instead of having to take the steroid he is on now.  Next month he will also have 3 Lumbar Punctures… so that means once a week for 3 weeks I have to watch them put my little baby to sleep while they pump chemo medicine into his spinal fluid.  He is such a fighter when they are trying to put him out.  I hope he continues to fight that hard throughout the rest of his journey.

On a lighter note… today was my younger sons first birthday!!! Owen was so excited to tell all the doctors and nurses about the fun cake we made for him yesterday, and the presents!!!  We had a fun time celebrating tonight.  Here is the cake we made:

And the smaller one just for Logan: