Owen's Story

Some days are good and some not so much… yesterday and today were really good!  He was feeling good and wanting to play.  We spent a lot of yesterday playing “cooking” and worked on walking with the wagon.  His legs seemed a lot stronger and I wasn’t needing to help him stand so much.  It was so nice to have him interested in playing and wanting to walk.

Yesterday I also found out that the mother of one of Owen’s good friends in his class at daycare has ALL too.  She was diagnosed in May of this year and they are treating her with the same type of protocol that they do children.  It is amazing how every time I talk to someone, I found out someone else who has this or has gone through this before.  It is so nice to have support from so many different places.

Owen has also been doing awesome at taking his medicine which is soooo nice for the whole family.  He uses goldfish as his “chaser”, but he is doing so good that even in the middle of the day today he said “I’m ready to take my medicine!”  Not sure if it is because he is hungry since I am trying to limit the amount of food so it doesn’t make him sick, and he knows he gets goldfish when he takes his medicine… whatever it is, I would much rather have him ask for it, than feel like I am forcing it on him.

Today was his first clinic visit for chemo.  We got to meet his new doctors.  I am not sure if I had mentioned before, but the doctor that we had is leaving at the end of January, so she wants to go ahead and transition us over to the other team for us to get used to them.  They seemed really great.  The fellow is actually the one who was there in the ED to explain his diagnosis the night we found out, and the other is the Oncologist.  He is the same doctor the son of my neighbor across the street had, and they really liked him.  Can you believe that? Two kids on the same street with Leukemia… he was in high school when he was diagnosed, and is now healthy and enjoying life at PSU.  I love hearing success stories. Sorry to digress… Owen had the push of the chemo and then the hard part.  He had to get his bandage off that was holding his access tubes in for us to give him his antibiotic the past week.  He hates getting that bandage off.  He was very brave and did a great job.

That’s all for tonight.  I am looking forward to not having to get up at midnight and 1 to do his antibiotic.  I think he will be happy about that too.  For the past few nights, when I would be hooking him up he would say “Just let me SLEEP!!”.

Owen woke up this morning, hungry and asking for breakfast before even getting out of bed.  When I wake him up to do his IV at midnight and 1 am, he asks for food then or talks about breakfast and what he is going to have.  He eats so much at breakfast, but then this morning he complained of his belly hurting all morning.  He kept thinking he had to go to the bathroom, or throw up, but neither was happening.  It wasn’t until he finally took his medicine late morning, that not long after we saw all of the breakfast.  I think we are now learning that even if he wants more, we have to really try to restrict how much he eats so that he doesn’t over do it.  The nurses and doctors kept saying, “if he’s hungry, feed him… because soon enough, he won’t want to eat for days.”

The Physical Therapist came today to work with him on his leg strength and trying to get him to walk.  She spent a lot of the time playing with him and trying to get him to do things to strengthen his legs without him thinking about it.  He did really good.  He really needs a lot of support from someone behind him holding his hips or arms, but he was using this little wagon we have to walk some.  She thinks that they are more weak than anything… it has been so long since he has used them.  It was so great to see him be a little mobile.  She is going to come twice a week for probably the next 6 weeks.  She was saying that sometime with the kids, when they are on the steroids they actually make the muscles weak (unlike how adults take them to get strong).  The chemo also might be causing some joint pain too, so it is hard to say what the actual problem is.  I just miss seeing him run around the house….

Owen really loves to do crafts and activities, so Nanny has been providing him with things to do every couple of days to keep him busy.  Today we had a gingerbread house to put together!!!  He loved it and had so much fun building it. 

Tonight he did awesome at taking his medicine.  He took all 3 so quick and didn’t even flinch.  Oh how I wish every medicine time would be that easy…

Sorry that the previous posts are all out of order in the case of days.  I am so new to this blogging thing and haven’t been able to figure out how to reorder them.

Friday Owen woke up and said he wasn’t feeling good… he ended up being sick.  Since he wasn’t feeling good, we wanted him to take the medicine that helps with the nausea and sickness, but that just adds to the quantity that he has to take.  Friday’s are one of the days that he has to take 3 medicines to begin with, so adding another on top of that isn’t easy.  With him, it is all about quantity…

The home nurse came today to take a blood sample, and he did so good for her.  Very cooperative.  She said that they were able to get him approved for a Physical Therapist to start next week to help him with his walking.  This was such good news!

His Oncologist called this afternoon and said that they have the results of the genetics testing.  She said that the results showed movement of the TEL gene on chromosome 12 to the AML-1 gene on chromosome 21, which is most often found in children his age.  She said that this scenario typically responds well to the chemo.  That is really good news, but it doesn’t mean too much until they get the results at the end of this first month on how HIS body is responding to the chemo.  Once they know that, they take that information along with this genetics information and they use that to come up with the plan for the future treatment.

Saturday, he woke up and was SOOOO hungry.  He ended up eating a bagel, piece of cinnamon bread, pudding and mac & cheese for breakfast!  This is more than he would normally eat in a whole day!!  Since the Saturday before he went in the hospital, he has been wearing pajamas, and today he actually wanted to get dressed!  He was really wanting to get out of the house today, so Daddy took him in the car to go through the car wash.  He loved it.  I think just getting out of the house was good for him.  He wanted to play with Logan today too, but he still can’t do much and tires easily.  He and I did do a craft that was making an ornament for the Christmas tree and he and Daddy hung it.

He seemed to feel pretty good for the most part today… the only side effects were the jaw pain and stomach hurting.  His stomach seems hard, but he is having normal bowel movements, so I am not sure if it is just because he is eating the majority of the day or what.  We are going to ask the Doctor in clinic on Wednesday.

Today (Sunday) he did an awesome job taking his medicine!! He only had 2 to take this morning, but he did them really quick and got them out of the way.  It was so nice to not have to spend half of the morning trying to coax him to take it.  We have a sticker chart for his medicine, so when he takes it, he gets to put stickers on it.  We started it last Monday, so we gave him a prize for filling up the week.  I gave him the CandyLand game and we all played.  How fun!!  He was feeling pretty good today… still not walking, but we are looking forward to PT coming tomorrow.  Another of the yucky side effects from the steroid is his heart will beat fast at different times.  He doesn’t like that either and was complaining about that today.  We keep telling him “It’s hard work to get better.”

Early this morning they came in and gave him another blood transfusion.  (Leukemia patients need lots of blood and platelets, so if you are ever wondering what you can do to help, GIVE BLOOD!  It is so important to these kids to have it)

Dana came in to explain to him what is going to happen today with the surgery and what the port is that he is going to have in his chest.  She also brought him all of the beads of courage that he has earned up until today.  It is crazy when you see how many beads there are, and you realize that each one represents something that he had to endure.  It is heart wrenching as a parent to have to watch your child go through this…

He fought the anesthetic when they were trying to put him to sleep.  They say that is a good sign that he is such a fighter  The Doctors came out after the surgery and said everything went well.  They came and got us when he was in recovery… we got in there and he was screaming!  So scared since he didn’t know anyone and everything looked so different than his room.

Aunt Kimi came to visit this afternoon and he had a lot of fun playing with her on the mat.

This afternoon was when he got his first push of the chemo.  They put it right through his port and he never even knew.  The kind that he got today is said to not make the kids as sick, but they still give them a drug to help with the nausea.

That night, as I was getting ready to leave he says “Always remember to take care of baby Logan”… what a loving boy.

Today is the day we found out what type of Leukemia he has.  The Doctor’s came around for their morning rounds and Dr. Chuk told us that he has Pre-B Acute Lymphoblastic Leukemia (ALL).  They said that this is the most common type in children his age and has a very high success rate of remission.  She would be back later in the day to discuss the plan.

Uncle Rusty stopped by to visit this morning and gave him a little truck to squeeze when he had pain.  He was also shooting the Nerf darts at the target on the window that the Child Life girls drew and he got a Bullseye! He was so excited.  He really loves the Child Life girls and couldn’t wait to show them.  They have quite an amazing program for the children.  There is a playroom on all of the floors and the one on the Oncology floor is open 24 hours a day.  They have the Child Life Specialists who are wonderful with the kids.  They are the ones who explain procedures, diagnoses and such all through play to get the kids to understand what is going on with them.  Dana and Erica are the two girls that come by and they are always bringing some kind of gift / prize.  (They rely solely on donations, so if anyone is interested in donating, let me know and I can get you information)

Dr. Chuk came back to explain about the the first stage of the treatment process.  It is a month long phase and usually the most intensive.  It is called induction.  It will begin tomorrow with the installation of his port in his chest in the morning, then chemo in the afternoon. They gave you some platelets to make sure that his body is strong for the surgery tomorrow.

He has spent a lot of time in his bed since his legs still hurt and he can’t walk.