Owen's Story

Today is the first full day back at home since the diagnosis.  He wanted to play with Logan, but we had to keep carrying him to the area as he is still not walking.

He still isn’t smiling like he used too, but I can imagine that that will come with time…

Logan was having fun with everyone home again too.

*Note:  I changed the day to “8” as this is the day that goes along with his treatment plan.  They start counting the first day that they start the chemo.  I had been tracking days since we actually got the diagnosis.

Today is a big day!  He is getting discharged today.  They have to do some not so fun things first.  He had to get more “sleepy medicine” and have another lumbar puncture.  They inject more chemo into the spinal fluid.  There aren’t currently any leukemia cells in there, but this is a place that they can “hide” and you do not want them in there.  He also had to get another dose of the Vincristine which is the same first chemo drug he got.

They had to re-access his port, which they were going to do when he was under, but they forgot.  So, the nurses had to do it which meant that they had to remove the bandage around his port and re-install a new needle into his port.  He really freaked out about them taking the bandage off and that didn’t go over well.  He was very brave.  They stuck the new needle in and that was the easy part compared to getting the bandage off.

Getting ready to go home…

There was a home nurse that had to come to our house tonight to teach me how to give him an antibiotic at home.  He has a bacterial infection and needs this antibiotic for 2 weeks.  It has to be giving through an IV, so they left his port accessed so that we can do it at home.  Who knew I was going to have to learn nursing?  It is kinda scary because this is a set way that things Have to be done in order to be sterile.  You have to do it in the exact order, with all of the alcohol, saline flushes, heparin… I will be happy when this is over.  He needs it 3 times a day too, so one of those times is at midnight.  Trying to remember the order while being half asleep isn’t the easiest either.

Tonight it took about 3 hours to finally get him to take his medicine.  This has to somehow get easier….

Today is the day when they told him that he has Leukemia.  The Child Life Specialist came in to “play” and explain to him why he is sick.  She had this big fake bone that had these red, yellow and white beads in it to represent the white blood cells, red blood cells and platelets.  Then she got out the same colors of Play Doh and they made little balls and made them fight each other.  It is so hard to tell what, if any, he is understanding.

The Physical Therapist came back today and we walked him back down the hall again.  As we were walking she made a comment about his legs needing to build up strength and he said “it’s because the white things are fighting”… so I guess he was listening and getting some of the explanation this morning.

Music Therapy was in today.  There is a girl that comes in with various instruments and plays a guitar and gets the kids to play and sing along.  Owen LOVED this… he has been asking for a guitar for Christmas for a while, so this was something that really helped with his spirits.  Love his expression in this picture.  He looks so serious.

Breakfast this morning was so good and he ate so well.  The steroids are really starting to pick up his appetite.  They warned us that by the end of this first month he is going to be eating us out of house and home.  He seemed to be doing really good until we tried to give him his steroid.  As soon as he tried, he got sick.  They gave him some medicine for the nausea.  We didn’t know if he was sick from the chemo or from the act of having to take the steroid.  He gets himself really worked up because he doesn’t like to take it, and we thought maybe that was it… It wasn’t until later in the day when he got sick out of nowhere that we knew that it must have been the chemo.  Poor little guy… he has no idea what is going on with him and why he is so sick.

The Physical Therapist was back today and her and I held Owen’s hands and we walked the whole way down the hall so that we could look at the Christmas tree.  I was so proud of him.  You could tell that half way down the hall he was really struggling.  He was really pulling our arms down and he sounded almost slightly out of breath.  I just can’t believe how quickly his little body loses all of that energy.  The PT said that with little ones, atrophy in the muscles sets in so much quicker.

Today the Physical Therapist came in to try to get him to start walking.  He took a couple of steps towards me which was a huge accomplishment!  It has been over a week since he has walked, so even that little bit of movement was great!

They also cut back his fluid today since his kidneys are functioning fine.  This is so nice, since now, the only time he needs hooked up to the IV is when he is getting his antibiotic 3 times a day.  At least he feels a little more free.

His blood count is really starting to drop, which is what they expect.  This means that the chemo is doing it’s job.  The bad part of this is that he is very prone to infections and sickness when his counts are so low, so we have to keep him away from contact with others.  He has to wear a mask when he leaves his room.   I have learned so much information in the past week it is overwhelming… it is like taking a whole semester of classes in one week.