Didn't Make Counts

We checked his counts today, because he was supposed to be admitted for his next round of Methotrexate tomorrow.  But his ANC is only 400 so we'll be waiting at least another week.  The upside is that his hemoglobin came back up on it's own, didn't need any blood this round!  And his platelets are 515 so other than being neutropenic he is doing good.  He has a lot of energy and is feeling great.  He does have pink eye though, so we have an eye ointment we are using, so hopefully that will clear it up soon.  We have been really busy, so blogging hasn't been a top priority.  So I wanted to log on and at least post a quick update to let everyone know that all is well here.  I'll update again when I have more info.

Today's Clinic

Donavynn just finished his LP, and now he is getting his pentamadine.  I'm happy to say that he doesn't need blood this week, so we are really happy about that.  His ANC is 790 so he is neutropenic, but his hemoglobin was 10 and his platelets are 126 so all pretty good.  So we should be out of here in about an hour.  There was a big highlight to my day today.  I can't tolerate staying in the room for his LP so Rachael and I decided to go to the cafeteria, much to my surprise they were doing free registration for the National Bone Marrow Registry.  I've wanted to do that forever, but haven't had the extra money so this made my day.  I am now on the registry and so is Rachael.  I think that they should do this more often.  I'm sure that the cost prevents others from registering as well.  I am a huge advocate for this so if you are able do it!  You never know who you could end up helping.

He is really tired now, so he's napping while he finishes his med and then we'll be on our way home.  I post again when I have more time and more to say.

This Weeks Clinic Appointment and The Start of The New Semester

Donavynn had clinic on Monday for his Cytoxan and Etoposide. He did really well as always and we were there for about 3-4 hours. Dr. Shore took a look in his mouth and apparently he has a small sore. I looked at it and it looks like it was already deep in the healing process, because it wasn't open anymore. So that must have happened pretty fast because I check his mouth frequently. And I ask him everyday if his mouth hurts. The good thing is that this one didn't bother him, and is healing quickly so I'm hoping that this is the only one he is going to get because not only can the Methotrexate cause them but so can the meds he just got, especially the Cytoxan. Getting him to eat yogurt has been like pulling teeth recently. His ANC was 1500 so at least he went into this week with good counts, I'm hoping that they won't drop too much but time will tell. Nancy gave me another copy of his complete protocol and it looks like we have a few more weeks of this round before he is back on the steroids again. The good thing is that from now on he won't have to take a full month of steroids it is 1 week on, 1 week off, 1 week on. So that should help a lot. And between this round and that one that should get me through the semester and then we start the Ara-C, Erwinia cycles again over the summer providing he stays pretty close to on schedule. I'm dreading that. The Erwinia scares me because of the potential to react, and it means driving up there every other day. But we'll get through it like we did last time. I learned a few things about radiation this week and how it is going to and may affect him. As many of you may know radiation can be brutal, we are hoping it won't be too bad, because if I am correct he isn't getting very much. I believe he'll be getting 12 gy. Either way, Mercy doesn't do it. He will have to go to Kansas Cancer Center in Overland Park for that. Nancy said that they will likely anesthetize him because he will be at an age where it might scare him and he may not hold as still as he should. They want to make sure that the radiation is going where they want it to. I also learned that many children recieving cranial radiation go through something called somnolence syndrome. It is where they can experience anything from drowsiness up to simply passing out for days and only waking up to eat and use the bathroom. The exact definition is Periods of drowsiness, lethargy, loss of appetite, and irritability in children following radiation therapy treatment to the head. However I have heard that some children have passed out for 4 days after radiation. But I don't know a ton about it yet so I'm still researching. I'm just glad that I learned about it before so that I didn't freak out if it happens. He is my little trooper, he has handled all of this rough chemo so far, I'm sure that he will be able to handle this because I'll be there for him!

Yesterday was my first day of this semester. And I'm so happy that I can finally say I'm officially a senior in college!!! I never thought that would happen! lol Yesterday went well, long, but good. And I'm hoping that though this is going to be a hard semester it will be a good one. Every semester we have to take a calc exam on the 1st day and you have to get 100% before you can go to clinical. I got my 100% so at least it has gotten off on the right foot.

The Weekend Draws To A Close

I am happy to say that our last weekend before classes start has been a good one. Donavynn has felt great and we went to his friend Jacob's birthday party yesterday. He had a great time bowling and eating cake, or rather the icing on the cake! lol He was so happy to see his friend. And they just love each other so much when Jacob saw him he ran up and gave him a big hug. Today was spent mostly getting ready for the week. He has treatment tomorrow. Cytoxin and Etoposide. So we'll be there for awhile, but at least it isn't inpatient. Then Tuesday is my first day of the semester and things get crazy with 12 hour clinical days and classes in the city it's going to be rough on all of us, but it will pay off in the end. I'm hoping that his counts will still be good, if I remember correctly this time during the last round he needed blood. So hopefully he won't need any blood products and his platelets will stay up. He really hates when he can't play like he wants to because he can get hurt. But he has been feeling really good. He was so happy that Daddy was off this weekend, he (daddy) wasn't feeling well yesterday but he was today so they had so much fun playing together as always. So those are the only updates for now. A good weekend, a happy boy and a busy week ahead. Oh, and please continue to pray for no mouth sores, so far so good, but you never know. Thanks for all of the love and support!

Tired of Being Here!!!

Ok so we got his levels drawn at 8:30 which was 60 hours, and it is .15 and it is supposed to be < .10 so we are waiting around now for it to drop .05 - seriously! UGH! I don't know when they will be drawing a level again.

The good thing is that he got to see a special showing of Bolt yesterday. Apparently Disney sends them new movies every now and then and that was the one that they got this time. So that was fun. But now I'm ready to go home. I'll post again when we find out what is going on.

8 o'clock level

His level is now .76. So hopefully he'll clear the rest of that tonight so we can go home tomorrow. He is sleeping for the moment but probably will be up a lot tonight with his IV going at 150 ml/hr. That is all for now.

New Level

Ok finally got the 2 o'clock results it is 1.17. They want it at least 1 by now so they are upping his hydration a little from 92 ml/hr to 150 ml/hr. They'll check it again at 8 and then again at 8 am. They also did a CBC his ANC is 1260, and the docs okay'd his trip to the birthday party this weekend. So it looks like we'll be here one more night. But first thing in the morning I'll be packing up this room so we can be out of here asap!!!
His other labs
WBC - 2.78
Hgb - 12.4
Hct - 35.9
Platelets - 266

That's all for now. Will update again later.