Owen's Story

We had a really fun day today.  Owen had a lot more energy than he has had since last week.  Probably the chemo from last week wearing off… just in time to get some more tomorrow

Tomorrow is Logan’s (or Tutti as named by Owen) 1st birthday, so Owen and I spent the best part of today making him a cake and wrapping presents.  Owen is so sweet… he wanted to get Logan a stuffed animal so that he could have forever like Owen has his “Lamby”.  So we got him a puppy, and Owen decorated the box.

He did some walking with me today and climbed up the stairs on his knees.  All the movement is good to help build those muscles back.

Back to the hospital tomorrow for some chemo.  This will be the first time they will need to access the port since previously he had been accessed from in the hospital.  It shouldn’t be too bad, but they have to put the needle in and I don’t know how he is going to handle that.

Haircut day!  Like I said yesterday, I wanted to get it cut short so that maybe as it goes, it won’t be as noticeable.  I think it turned out good.  His face looks so much chubbier now…

The physical therapist was here today, but he didn’t want to do too much.  She could tell that he was really tired, so she didn’t push him too hard.  He was so excited because he finished the one sheet of stickers that he has for his medicine chart this morning, and then in the mail, my cousin sent him more stickers!  What perfect timing!!  He couldn’t wait to take his medicine tonight to put the new stickers on his chart.

Here is another one with his haircut… not looking too thrilled to have his picture

Another lethargic day here for Owen.  This round of chemo really seems to be kicking his butt.  He took a nap this morning before lunch and after he was done eating he wanted to go back upstairs and lay down again.

He didn’t want to walk again today… not sure what it is.  Whether he is just tired and doesn’t have much energy, or his legs hurt.  He was in good spirits though, and we drove around some neighborhoods tonight looking at Christmas lights and he loved it.

I am having a friend come in tomorrow to cut his hair really short.  I can already tell that it is starting to thin out and feel different, and I think by going short now, maybe it won’t be as traumatic when it all goes.  (the child life people at the hospital say that it is usually more traumatic for the parents then the children… but we’ll see).  I keep telling him we are going to get it cut like Daddy’s.  Check back tomorrow for the final look!!

It was a lazy kind of day here at our house.  I think Owen was feeling the effects from the chemo from Wednesday.  He wanted to do a lot of “relaxin'”.

We thought it would be fun to take him to see the Festival of Lights in Wheeling, WV at Oglebay.  We tried to go to Hartwood Acres last year, but the line of traffic was too long, we turned around.  They aren’t doing it this year, so we thought we would pack the car and take a little road trip.  We got to 1/2 a mile from the exit and sat there for over a 1/2 hour, moving only about 200 yards.  Owen decided he was ready to go home and we could “look at the beautiful lights by our house”.  That is what we should have done all along.  Hind sight is always best.  Maybe one year we will actually get to see some fancy lights.

Thursday December 6 – Owen was feeling pretty good this morning.  He actually had some energy and wanted to show Daddy that he could walk by himself!  He took a couple steps, then knelt down.  He is still building up those leg muscles.  He got a game called Elefun and wanted to try it out.  It is this elephant that blows these “butterflies” out of its long trunk.  He was actually standing a little trying to catch the butterflies.  He loves it!!  (And Logan loves watching him play)

Thursday was the first day he didn’t get a bead of courage for anything since he was diagnosed.  I think of it as kind of a good thing… no pokes, no chemo, no antibiotics…

Friday December 7 – Today was a pretty good day too.  He didn’t want to walk as much today because he said his knees were bothering him.  It might be the Vincristine or that he was so active yesterday.  Either way, he was still so excited that the physical therapist was coming to play today.

His Doctor called today to tell me the MRD (Minimal Residual Disease) results and what they found when they did the X-Ray on Wednesday.  Owen has been having heart palpitations throughout the day and it doesn’t seem to occur at any particular time or when he is doing anything specific.  We talked to the doctors on Wednesday about this and they said that it is possible that the tube that goes from his port towards his heart might be a little long, and sometimes it could kind of “tickle” the heart causing it to palpitate.  So the X-Ray showed that it is a little long…  for them to shorten it requires another surgery.  For now, we are to monitor it and see if he keeps having them, and if so, when they do the next bone marrow biopsy on Day 29, they will shorten it then.  I feel bad that he will have to go into surgery again, but it really scares him when “his belly is beating really fast” and I can’t imagine him having to go through that for the next 3 years.  She said that the results for the MRD were good.  What they are looking for is to see if his body is responding to the chemo.  The saw a decrease in the cancer cells, but there are still some there.  This is exactly what they were expecting.  Like I said before, the big telling day is at 29, and they will see if there are any then.  That is when they want none.  They said it is extremely rare for them all to be gone by day 8, so he is progressing as expected.

He had a fun time this morning doing a craft for Christmas:

Look at this pudgy little face… steroids.  They say it will go back down after this whole month of steroids.

Today I received a card from a very sweet friend.  She included a few quotes that she thought might help along the way… I will end today with this:

Worrying does not empty tomorrow of its troubles, it empties today of its strength. ~Mary Engelbreit