Owen's Story

Good news… today Owen’s one Doctor called to tell us that they had the pathology results that they do in house.  There were no cancer cells in his spinal fluid or in the brain, so that is great news.  There weren’t any there when he was diagnosed, but he has had cancer cells throughout his body all month, so it wasn’t to say that they couldn’t have gone to the spinal fluid or brain.  So, that was super news.  Now we are still patiently waiting for the MRD (Minimal Residual Disease) results that are still to come.  They need to be under 1% to be good news.

We had a fun day doing crafts today and even went to the basement for a while so I could work on some things.  He was riding his tricycle that was down there which I thought was Awesome for strengthening his legs.  While we were down there, I managed to snap a quick shot of my little guy.

Nice relaxing rainy day here.  Owen took it pretty easy today which he needed.  I got a little time to finish the first of his chemo hats.

I love this boy.  I finished it and he said “Mommy, it looks beautiful!”.  What a sweetie.  He actually wanted me to go get the camera so I could take a picture.  I still don’t think he really knows that he is losing hair or that he will be bald, but he loves me making hats for him.

Today is the day we have been waiting for all month!  We arrived at the hospital bright and early and had a welcome surprise.  Dana, the Child Life Specialist from the 9th floor came down to the surgical floor to be with Owen before he went in for his procedures.  He was very happy to see her and she was able to keep him occupied while he was waiting to be taken back.  I went in to the OR with him and held him while they gave him the sleepy medicine.  I have never seen anyone fight it so hard!  He had his head on my shoulder and I was having a hard time not breathing in the gas… that would not have been good to have me on the floor too.  He finally went out and I headed to the waiting room to meet Jeff.

I walked in and he was talking to another couple, which ended up being the parents of one of Owen’s friends from school.  They were there because there daughter was having a procedure.  They were saying that their daughter has been asking about him and wanted to see him.  Who would have thought they would be in surgery at the same time?

The procedure lasted about an hour and the IR’s came to talk to us about the surgery.  They said that it went really well, and that they only had to do one incision.  Before, they were saying that they might have to cut open at his port and at the line, but they were able to cut a small incision at the tube.  This was a relief since the port incision is much larger than the tube one.  They pulled it out, cut it and put it back in and said that he shouldn’t have the palpitations anymore.  As for the Bone Marrow Aspiration, we won’t have those results for another week or or two.

We went back to recovery when the anesthetic was wearing off, but he didn’t want to wake up.  We were in the first recovery for about a half hour then they moved us to the secondary recovery.  That is where they needed him to drink approximately 4 ounces of fluid and sit up before they would release us.  He was pretty sleepy and didn’t wake up till after noon, and then he didn’t want anything to drink.  He is such a trooper though, we told him the steps he needed to follow so that we could go home and so he really pushed to drink his slushy.

The rest of the day has just been a lot of resting and eating  He wasn’t allowed to eat before surgery for 8 hours, and didn’t eat anything in the hospital while we there. Here his is relaxing with his Daddy.

Thanks for all of the thoughts and prayers for today.

Such a quiet day today, and after yesterday, it was much needed.  No palpitations at all today, YAY!  Owen and I were going to make sugar cookies yesterday, but obviously that didn’t happen, so he was so excited for Logan to nap so we could start!

We had nonperiels, sprinkles, and flour everywhere, but it was so worth it to see him having fun.  We are lucky that we had any cookies left since he kept wanting to eat them

I stopped at Owen’s school this afternoon to pick up some crafts they had for him and I got to speak with some of his teachers.  It was so nice to hear how much they and the kids are always thinking and praying for him.  I can not say enough how lucky Owen is to have these wonderful people in his life.  They sent me away with a car full of gifts, given by the staff and parents of his classmates.  I am overwhelmed by the generosity of everyone.  Please know how much we appreciate everything.

Tomorrow’s the big day!!!  Bright and early we need to be at the hospital for Owen’s Bone Marrow Aspiration, Lumbar Puncture and port catheter move.  Like I said before, once they get the results back from the bone marrow aspiration we will really know how he is responding to the chemo.  We won’t have the results for another week or two, but this is how they know what the next steps of the treatment are going to be.  Please say some extra prayers tonight!!

What started off as a relatively normal morning, became quite scary, very quick.  After breakfast Owen started complaining about his heart beating fast.  All of the other times this has happened, it usually ends after a short time.  This morning, it kept doing it and didn’t seem to stop.  I called the nurse at the Oncology unit and told her the issue and how he is scheduled to get this fixed this Wednesday, but it seems worse this morning, so she suggested we head to the ER.

In the ER, the guy came over to check us in and do the initial screening that is in the waiting room.  The room was packed, so I thought we were going to be there a while… He checked his heart beat and was like “that is really humming along, we need to get you into a room”.  A few minutes later, we were in a room.  That nurse listened with her stethoscope, then immediately put the pulse ox monitor on his finger.  Next thing, she ran out of the room, back a second later and was like grab your stuff… we are heading to Trauma.  OK, I am freaking out.  She told me his heart rate was 240!!  (but “don’t worry, he is going to be ok”.   We get into the Trauma room and there is a team of about 10 people there waiting… all lights on, type of scary.  The doctor explained that he had Supraventricular tachycardia (SVT) which is when the heart is beating very fast (between 200-300 bpm).  There were a couple of ways to get him to come out of it, put a bag of ice over his face for 20 seconds or give him a medicine.  They then began to give him the IV in his hand which made him scream and yell, which was actually good, because that brought him out of it on his own.  They continued to monitor him, did an EKG, ECHO and x-ray.  They were deciding if they needed to move his procedure sooner or if it was ok to leave it on Wednesday.

After talking with the Cardiologists, they felt it is fine to wait until Wednesday as long as we were comfortable with that decision.  They explained what we need to look for and what we should do if this happens again before Wednesday.  We just had to wait for the OK from our Oncologist to make sure he was ok with it too.  Meanwhile, they would not let Owen eat anything because they did know if they were going to admit him or do anything today.  This did not sit well with a little boy on steroids that is used to eating basically every 1/2 hour.  Poor thing had to wait till about 3 pm before they let him eat.  The ended up releasing us, gave us a stethoscope and sent us home.

What a crazy day.  I can not wait till they move that line from his port and he stops having these heart palpitations.  They are too scary.