Owen's Story

His jaw was still hurting really bad this morning and it was making it hard to eat his breakfast.  He had to wait till the cereal got soggy for him to be able to eat it.

This morning was when he got his first dose of the Pegaspargase (chemo).  This is the one that is rougher on their bodies.  He only gets it once this month… They have to monitor him frequently while they give this one to make sure he does not have a reaction to it.  He was not a fan of the nurse taking his temperature and blood pressure every 5 minutes.

He really took it easy today.  Tonight was “girl and boy night”!  I stayed since he was really missing me and wanted me there.

He was feeling pretty good this morning.  Still having a super hard time getting him to take his medicine.  There is so many, and he has always hated to take stuff.  It doesn’t help that none of them taste good.  The worst is the steroid, which is in a pill form.  They said they have it in a liquid form too, but it is even worse tasting.  It has been trial and tribulation trying to get this in to him.  What worked one night, would not work the next day.

Uncle Rod, Aunt Mari and his cousins Sara and Jack came to visit today.  He was so excited to have his cousins there and take them to the playroom.  Once again in the kitchen…

The thing is, with the steroids comes huge mood swings… so if you thought the terrible twos / threes were bad, you have never seen a kiddo on steroids.  I feel so bad for him because he can’t control it.  He was getting a little over stimulated and we had everyone leave so that he could take a break.

Tonight he was complaining about his jaw hurting.  That is one of the side effects of his chemo medicine.  He was enjoying the freeze pops, as that is about the only thing that made it feel better.

Happy Thanksgiving!  Owen slept in a little bit today which was good for him.  Nanny and Poppy came to visit this morning to see him and to take Daddy back home for a little while.  Jeff hasn’t left the hospital since Owen was admitted.  He has been right by his side and such a great support for him.  Kimi and Ken came after breakfast and he had fun taking them to the playroom to show them the kitchen.  He loves the kitchen.

He seemed to feel better today than he has since last Friday.  He was complaining about his port, but they said that is common for the first few days.  Nana and Pap Pap came in the afternoon and he had a great time playing on the mat with Pap Pap.

After Daddy came back, we wanted to give him a bath.  He normally LOVES baths, but he was really worried about his port.  We also had to put this “sticker” over his port bandage so that nothing gets wet and he was really scared that it was going to hurt when we took it off.  It took us over an hour and a half to finally get his bath and believe me, the whole floor knew he wasn’t happy about the bath.  We marked off that he should get another special bead for an act of courage.  It was hard to get the bath, but he finally did it.

The morning was so hectic.  There were tons of Doctor’s and Nurses in the room all morning.  They started a blood transfusion at 9 so that he would have some good blood in him for his Bone Marrow Biopsy that was scheduled for later in the day.  They also did a chest x-ray to make sure that everything was ok to do the procedure.

After the blood transfusion was done, they gave him some “sleepy medicine”.  They did the biopsy and also did a lumbar puncture to insert some chemo into the spinal fluid.

Today he got his “Beads of Courage”.  He gets one bead for each new procedure, poke, transfusion, chemo, challenges and accomplishments.  Every bead tells a story of hope, strength and courage.  He is such a brave little boy and we have so much faith that he will beat this.

I went home that night and Jeff stayed with him.  They were having “Boy’s Night”!  Nanny and Poppy came to visit which was a nice treat.  Tonight is when he had to start taking medicine orally.  They started with the “pink stuff”.  He HATES taking medicine, but he did it and everyone was so proud.

The nurses needed to do a blood culture, and since he was running a fever they couldn’t take it from the IV that had already been placed, so they had to poke his other hand.  It took 4 nurses and Daddy to hold him down.  He was so strong!  His fever kept building, and the nurses were getting worried.  They gave him some Tylenol.  His fever didn’t break until about 2 am.

Friday November 16 –

I am Owen’s Mom.  I will be telling the story of his battle against Leukemia.  It was a Friday night.  I went out with some girls from a MOMs Club that I am in to paint for a moms night out.  I came home and it was after 10 pm and Owen was still up.  He was in our bedroom and was complaining about his legs hurting.  We didn’t think too much of it, thinking that it might be growing pains, or that he just wanted to sleep with us.  He was up a lot through the night still complaining about the pain and didn’t sleep much.

Saturday, it was more of the same complaint.  He didn’t want to do much and we gave him Tylenol and it wasn’t getting any better.  He wouldn’t really walk too much, hardly even to go to the bathroom.  This was him for the majority of the day.

He felt hot on and off, but was only running a low grade fever.  I called the nurse hotline in the evening around 9 pm or so… she said to maybe try some Motrin since that is better for joint and muscle pain.  My husband, Jeff, ran to the store, got some Motrin and that seemed to temporarily help.  He slept better Saturday night.

Sunday morning, he woke up and said “I think I am better.”  Then, as soon as he went to stand out of bed, he couldn’t… He wanted carried everywhere.  He was running a fever on and off (and in hind sight it was most likely just being masked with the Motrin).  This continued throughout the day.  That evening, I told Jeff that I think we should take him to his Pediatrician’s Express Clinic.  I took him while Jeff stayed home with our younger son.  I feel fortunate that we had Owen’s normal Pediatrician Dr. Rowland.  He did the exam, and couldn’t find anything other than the fever of 101.  He said that he wanted us to go down to the Emergency Room at Children’s Hospital so that they could run some blood work.  He said it “is probably nothing”, but it was worrisome that he wouldn’t walk, and being 3 1/2, that is not normal for that amount of time.

I took Owen back to the house, we picked up Jeff and headed to the ED.  We got checked in and they drew some blood.  Then they came back and wanted to get some more blood…. didn’t think too much of that until the Doctor came back and had another Doctor with him.  He then told Jeff and I to sit down.  When hearing that, my stomach started to turn thinking this can not be good.  He started going to in to the explanation of what the blood tests showed with 3 types of abnormal cells.  And then he brought up Leukemia, and my heart dropped.  How could this be?  Just Friday morning he was playing and running and laughing and being the energetic little boy that he always is, and then this?

The other Doctor was there since she is a Fellow in the Oncology Division.  She went into further explanations and said that she reviewed the cells herself and was positive that it was Leukemia.  They said that Owen would be admitted that night and the whole process would begin tomorrow.