Today started out slow for Micayah and me as I hit snooze a few times and skipped the gym and he refused to get up until the 3rd time I called him.  Our days are basically early mornings (7:30ish) with Naomi and doctor rounds; treatment begins at 8am and school and activities, then side effects and necessary care; we leave at 5:30pm for dinner back at the RMH and then go back to CHW to help Naomi prepare for bed and finish her care routine.  Then we FaceTime with the family in NV and crash around 11pm.  We walked into her room a little after 8am.  She was out of bed, sitting on the sofa and coloring!  She had dressed and was ready to go…. more than us.  She had no fever overnight.  Rounds with her care team went well.  Everything is going as planned.  She told her Dr this morning that she took all 6 of her pills on the first try today.  He responded with “great, but who’s counting?”  She made quite the face.

Naomi’s day went really well.  She did quite a bit of school work on IXL.  That is our adapted academic plan for her right now.  We also do some reading and religious education.

We also decorated her window today.  While we did that, fearless as she is, she climbed the walls.  Literally.  I cannot believe the nurses let her do this…. but they didn’t even mention it when they came into the room!  At one point Naomi even joked about playing jump rope with her lines.

This next video was added on accident, but her voice is cute.  So we will keep it.

 

I have never considered myself an artist, but Naomi has pushed me to grow and do things beyond my comfort zone – like leaving 5 children and my husband and going 1800 miles away from home to a specialist who deals with her disease daily.  I’ve also grown as an artist spending so much time around the talented Naomi. In addition to drawing with me, she had a visit from a dog for pet therapy and spent some time with the music therapist. I was not available during therapy sessions as I was making calls and taking Micayah for lunch.

Around 3pm, her nurse changed all the tubes in her line.  That gave her about 20 minutes of freedom.  Naomi chose to get a bath during that time.  So I massaged her with warm water and a rag and she just relaxed in waist high water keeping her catheter out of the water.  When she was dressed and back in her room the nurse said she would get new tubes to connect her to the pole.  Naomi said, “don’t rush now.  Take your time!” Even the nurse laughed.  I then asked her if I should braid her hair.  She said, “No.  I don’t want to waste my time while I have a little freedom!”

After being hooked back to the pole, we walked around the hallways for a while.

Then the playroom was free FINALLY for the first time we’ve ever found it that way.  There is only one patient allowed in there at a time.  So we hung out in there for about an hour, playing half the time and Naomi organizing the other half!  She said “a cleaned up room is a healthy room and a healthy room is better is for sick children.”  I think it allowed her to feel some sense of ownership there and taking care of other kids.  The room looked dynamic when we left it.

When we returned to the room, we were sitting and relaxing while talking to everyone at home on FaceTime but the alarms on her pumps kept beeping.  There had been some of her blood that back flowed into the tubes while the nurse was putting all her tubing together.  It was freaky, annoying and took forever to change the tubing earlier in the day; then Naomi and I noticed some blood in the tubes while we were in the playroom, but the alarms didn’t start beeping until we sat and tried to rest.  The alarms went off REPEATEDLY and we were all getting really annoyed.  The nurses were in and out of the room.  They were still doing vitals fairly often to monitor her after chemo.  Then with the blood in the line, some tubes had to be changed AGAIN because it had clotted….So it was stressful.  It was also at that point that Naomi’s stomach started to hurt.  So the nurse got her more medicine and by time Micayah and I came back from dinner Naomi was feeling much better.  The stomachache was her only side effect from chemo today.

Earlier in the week we ordered some photos, frames and an album.  They arrived today.  So tonight we put all that together to help her room feel more loving.  Her waterless diffuser arrived and she used that today.  I don’t love it.  I miss the water one but they said the waterless one is safer against fungal infections and bacteria growth….. ok, then.

Today was Caitríona’s birthday.  We celebrated by opening gifts together on FaceTime that I’d left there hidden with Lauryn.  When I ordered Naomi’s food today, I asked the nutritionist if I could buy some cupcakes to celebrate my daughter’s birthday who is at home.  They were generous enough to send us cupcakes for no charge.  I am repeatedly feeling Blessed to be here in this hospital, with this care team, among these people.  They have been very good to us.

Naomi’s appetite was sporadic throughout the day but overall decent.  She ate yogurt, fruit, applesauce, lemonade, 3 sausage links, 4 french toast sticks, orange juice and the contents inside of a tuna sub and 1/4 of the sub roll.  Her care team looks at the amount of nutrients she is taking in each day and has been very happy with her appetite.  Her days are very full and for that I am thankful. While the days certainly are long, we fit a lot into that time and we’ve never had a moment to be bored or lacking things to do.

This evening, Naomi was extremely tired.  She couldn’t even sit up to eat or feed herself.  As her eyes closed, I fed her dinner.  She would keep her eyes closed as she opened her mouth.  We are half way through chemo today.  She had fludarabine and campath again today.  Tomorrow is the last day of campath.  On Saturday, she begins cytoxan.  Please continue to keep her in your thoughts and prayers.  I can say without a doubt that the chemo is affecting her more this transplant than it did with her first.  She is exhausted at the end of the day and I don’t remember that being an issue the first transplant.  In fact, I remember her needing melatonin to fall asleep last time….

This was our beautiful view outside the playroom window today.  It may be beautiful but it was also C.O.L.D.

I’ve attempted to make shorter more frequent readable blog entries.  I just can’t.  I’m needed mostly all day and the only time I can write is in the evenings when she is asleep.  It is therapy for me to get it all out and this blog will serve as my template for her book…. So, you’re stuck with long posts if you choose to read here.  I will try to break them up all the details of the day with fun photos and videos of which I got both today.  🙂