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.

Waiting To Go Home

He finished his methotrexate last night and then they drew a methotrexate level. It is currently 19.59 and has to be below 0.1 before we can go home. Hopefully he will clear it quickly like last time. They'll draw another level tonight at 2 and that should give us a better idea of how fast he is clearing. Then I believe they will draw again at 8. I'm going to see if Dr. Shore would mind doing a CBC before we leave as well because Donavynn was invited to a birthday party this weekend and I don't want to take him if he is neutropenic so we'll see. He has been so good as usual. Continuing to amaze the medical staff with how cooperative and happy he is. He has found an animal alphabet puzzle and has been playing with that on and off throughout our entire stay. He loves telling everyone what animals are what.

Last night was a little more restful, because he actually had to be woken to pee. The night before he just had to go like every 1/2 hour. He is shy though so he wouldn't let the aid help him, she had to wake me last night when she woke him! lol He said he was embarrassed. Which I think is cute. It's nice to see he has some modesty!

So that is about all for now. No great news, just happy that he is doing well and praying that he stays free of mouth sores again and clears quickly. If he follows the same path as last time we'll be home tomorrow, if he clears faster we could be home tonight but I'm not counting on that, because that is practically unheard of. I wish I could remember what his initial level was last time, that would give me a better idea. Oh well. I'll post later with his next level.

We Are Here!

We got into a room much faster this time! And he is getting into hospital mode where he just wants to sit back and relax for a little while. I think he'll be taking a nap today. He was so sad to leave the new dog today. It was so sweet he gave him a hug and a kiss. But it made him feel better to learn that Daddy took him for a ride today. Daddy really loves Cocoa. :) So we are basically just hanging out now. Hopefully all will go well.

On the home front there has been a fun issue for my family to deal with. My car doesn't want to start, thankfully my mom let me bring hers up here. And hopefully Dave can figure out what is wrong with it and be able to fix it for not too much because school starts next week. I tell ya, when it rains it pours. First the bathroom, now this. It is so frustrating. Either way, I'm trying to keep my mind off of all that and enjoy my time with little D. We played Candy Land while we were waiting for our room and Donavynn seemed to really like that game. It was so cute! He was very excited that he beat me. lol

Oh a little funny. As I've mentioned before Derek and Donavynn are pretty inseparable. If they don't see each other every day it is an issue. Derek was sad to learn that Donavynn was going to the hospital and this morning when we were on our way up here he told my mom "Nana, I talked to Donavynn and he said he is done with his pokey and on his way home. He said I have to meet him there." LOL I thought that was so sweet! I'm glad that they love each other so much. They are so much like brothers.

I guess that is all for now. Please pray that he is able to clear the medication quickly so we don't have to be here for too long, and that he doesn't get any nasty mouth sores.

Methotrexate Tomorrow!

I'm going to try to make this brief as I still have a lot to get done before tomorrow. We had Donavynn's counts checked today and his ANC is 1000! Yeah! I'm so very happy because Cheyenne, Dave and I have all been sick and he has only come down with a cough so we got so lucky this time. His platelets are 344 so he is good to go for the next round of treatment. Which is good. Of course I'm not looking forward to it, I much preferred when all of his treatments were outpatient, but at least he feels well during this treatment. Please pray that he doesn't get any mouth sores this time either. I hate for him to have to endure any more than he already does. As you can see from the picture above New Years was great. He had a ball! And has been so happy because he got to spend some time with friends. It is cold now, but the last two days have been beautiful so we've gotten to get some good quality time outside. We even went to the park the other day with Aden.

My mom with Cocoa

We also have a new addition to the family. I decided that I wanted a dog of my own, because Jake and Penny are the kids dogs. But I didn't really want a puppy because we just don't have that kind of time. And I wanted something small because we don't have room for a big dog. And I wanted a dog who was good with other animals and kids. So I started looking and found this perfect Chihuahua - Cocoa. He is 1 1/2 years old and the most mellow dog! He has been the perfect addition to the family. I think that he will fit in perfectly even with all we have going on. It helps the kids too to have pets. Some people think I'm nuts with all we have going on, but inspite of all of that we still have lots of time to spend with the animals and they are our therapy. We cuddle with them and play with them, and when we are sad they are there. And the nice thing is that when Donavynn ends up in the hospital, if Dave goes with me as well my mom keeps the dogs so they don't have to be boarded. They get to stay with family and they love it over there where they are just as spoiled as they are at home! lol We took Cocoa over tonight to see how he would do while we had dinner and he fit right in. I was amazed, he just made himself at home. So it seems that he adjusts just as well as Penny and Jake. They just love everyone and are happy no matter where they are. So that was the highlight of our week. Donavynn has been loving on him so much. I better get going. Hope all is well with everyone. Please keep sending up prayers that all goes well and remember to keep an eye on the blogspot if you wish to be updated after tonight