Waiting, always waiting...

Donavynn has his 6th and final Erwiinia shot for about 4 weeks. But last night started a crazy whirlwind for our family. It started when Donavynn's temp kept fluctuating between 100.6 and normal. So irritating, b/c it was 11:30 before we finally went to bed if you want to call it that, and the nurse on call wouldn't budge on their "protocol". So we know Monday has ANC was 0, so this is really concerning to me. Donavynn, Rachael and I finally head to bed (she went w/ me this am so stayed here last night) at 1:30 I wake up to Donavynn screaming that he is going to be sick, so off to the bathroom we run. Thankfully my husband was home by then and came to our rescue, as loving and supportive as always. We got things settled down and headed back to bed. But for the next 2 hours or so Donavynn was incredibly antsty (btw we are monitoring his temp throughout this and it's still bouncing) and whining in my ear. He says he is scared, but that is all. Dave finally comes to get him at 3:30 when he realizes that we are still up, and then Dave comes to get me at 5:30 because Donavynn's screaming that his butt hurts, and it is at this point that I wish these oncologists could spend just one of these nights w/ our kids so that they would understand why we are so frustrated when we hear "call me back when it hits 101.5" We are worried, and nausea and vomiting (2 weeks after finishing chemo), "almost" fevers, and booty pain sure don't help us to relieve that worry. Anyway, we were back up at 7 to head up to clinic. Thankfully they drew cultures, and all went well w/ his shot. But his ANC is 10, platelets are 29, and so we have to go back up on Friday, b/c the cut off for platelet transfusions is 20. We were supposed to be done for 1 week, going back up again next Thursday for his LP, but no such luck. Provided he doesn't spike (he's still hovering at 100.5) we have to check his counts locally tomorrow night to save some time Friday morning. The only reason I'm not totally freaking out is b/c they drew cultures so even if he doesn't spike at least they will be watching for a problem and can call us to come up. Oh and the booty pain, he has a small laceration on his bottom thanks to all the poo from the chemo. They said it is itty bitty so just keep it clean and give him sitz baths to help soothe him. So I'm praying that that doesn't become a bigger issue. I guess that is all for now. One crazy night, and now we wait, for culture results, for platelets, for the fever to go away or come full force and take us back to the hospital. It is heartbreaking to see him like this. I couldn't even get him to walk into clinic this am b/c his legs are so sore from getting daily or BID shots for 2 weeks. So please send up prayers that he starts to feel better and that his cultures are negative. I'll post an update when there is news to share.

Update

It has been a long week beginning w/ coming home Sunday night to turn around and head back up Monday morning and then blowing a tire on the way home! lol But he did great w/ his Erwinia shots this week and has 2 more next week. (Monday and Wednesday) He has been on the GCSF and his counts still tanked but we are hoping that they are recovering now and that we won't have an illness this time. I made a boo boo last night, forgetting that he has tubes in his ears I encouraged him to lay down. Consequently his ears will killing him last night. The doctor told me to use his Ciprodex ear drops to prevent an ear infection, so hoping that will help. I felt so bad, he's had them for a year and it just slipped my mind. Other than that all is going good here. He and all of us are missing his sissy. But she is having a blast w/ her GG. That's all for now, please pray that he remains fever free so we can stay home and stay on track w/ his treatment schedule.

A Long Night

Donavynn was up most of the night b/c of his upset stomach, diarrhea and fever. He finished his last dose of Ara-C this morning at 5. So I'm hoping that these symptoms will clear up now but after his ANC jumped so much overnight I'm not sure. We are waiting on a stool sample b/c as of right now his blood culture is still negative (Thank God). The doctor explained this am that their counts can do that as a simple stress response to a fever, however this has never happened to Donavynn. If his counts jump, there is a reason. So anyway, w/ his diarrhea we are trying to rule out other possible sites of infection. Right now he is sleeping. I'm hoping this afternoon will be a better one for him, and that the diarrhea, and vomiting will clear up. I am praying that for once he did something atypical for him and his counts are a reaction to his fever. Just once, I want my fears to be wrong. If they are we could be home tomorrow, if not who knows... so right now things are still pretty up in the air and time will tell. I'll post again when I have more information. Unfortunately if we don't get his stool sample soon we won't know anything today as they only run the C-diff tests once a day. But as soon as I know something I'll post it.

So Much For That...

Ok so he did great until 3 o'clock this afternoon - his temp rose up to 102.2. So they drew a CBC and cultured him. His ANC was 1140 yesterday and jumped to 4770 today, which shouldn't have happened since he had cytoxan a week ago, if anything they should be tanking, which tells me he likely has an infection. So my guess is his culture will pop positive by morning. I just hope it isn't anything too bad, and am thankful that we are here so they can nip it in the bud. So chances are we won't be going home tomorrow. Other than that he has been doing pretty well today. He has slept alot but he did perk up for awhile, talk to daddy on skype, sit up in the chair and play his DS, let me give him a sponge bath and even played w/ his lego's so overall he seems to be feeling pretty good. He just got his first evening dose of Benadryl/Reglan b/c he was getting sick and now he's resting again. Please pray that whatever is going on isn't anything major and is easy to fix. My poor kid, I would just like for something to be easy for him.

So Here We Are...

We have had a great week. Wednesday Cheyenne left for Georgia. It gets a little easier for me every year, b/c I know that these breaks are good for her w/ all the turmoil in our lives from clinic appointments and light night trips to the hospital. However, it gets harder on Donavynn as he is now old enough to understand and to miss her. She had a safe trip there and we are thankful for Skype, so we can video conference. After that we hung out w/ Abbey and Meghan and waited for my parents plan to land so that we could all go out to dinner. It was a wonderful night. We stayed w/ Abbey and Meghan that night b/c we knew that he was going to be admitted yesterday, so they were kind enough to give us a place to crash so we didn't have to drive all the way home and all the way back. It made Donavynn very happy to spend the night there. Yesterday we ended up in the clinic from 9:30 until 4:50, it was a long draining day. But they got his chemo started 2 hours sooner than they usually do which was nice. He has had some nausea but we are keeping his antiemetics scheduled so that hopefully it won't be as bad as usual. He will get ativan and zofran through the day and Benadryl, reglan and zofran through the night. The ativan seems to work better but it also keeps him up all night so that is reserved for the daytime. So far he hasn't gotten his usual fevers that he gets from the Ara-C and we are praying that maybe this one time he won't. But he still has 2 more doses so time will tell. He had a pretty good night last night - slept very well and only got sick twice. He is still pretty wiped out this morning from the benadryl but I'm hoping he'll perk up a bit. I'll update again later when there is more to tell. A little side note: I am halfway through "My Sister's Keeper". I wasn't sure if I would be able to handle it b/c of the subject content. But so far I've been ok, and it is a great book. It takes a look at the how the whole family dynamics change when you have a child w/ cancer. And it really makes you think... It's a great book and I strongly recommend it so far. Can't wait to see the movie.

So far...

He made counts as of today. They will check them again on Thursday morning to make sure that they are still good but as of this morning his ANC was 1530. That is awesome and I'm really hoping he holds. Cheyenne leaves tomorrow morning for her summer w/ her grandmother in GA. And my parents get back from Florida tomorrow night so we are going to meet a couple of my friends in Independence for dinner, then we'll be crashing w/ Meghan and Abbey so we don't have to get up and drive back to the city Thursday morning. So it should be a fun night before he is admitted again. He is NOT happy about any of this. He is tired of being in the hospital and I don't blame him. Especially for the Ara-C, that is so hard on him. We usually wait until his ANC starts to drop after the Ara-C before we begin the GCSF, but being that he just got Cytoxan last week they are going to drop faster if he holds until Thursday so we'll hopefully start them sooner. He will also start the Erwinia shots up again, all these leg pokey's are so brutal for him.

His hair is doing some weird stuff! lol He has a bald spot in the back that is growing back in, the top is growing longer by the minute it seems and then in between all that he has a few small bald spots. The Ara-C will very likely wipe the rest of it out again, which he is happy about. He likes the bald look. But let me tell you, after he finishes treatment buzz cuts will be off limits! lol I would be happy if he never had to be bald again. That is the hardest part about his treatment, when he is bald he looks so sick, but when he really was sick, before he was in remission he didn't look sick b/c the relapse was in his CNS and he had so signs or symptoms. Well that is about all for now, we all have a busy week ahead of us. So I'll post again once we get to the hospital and find out if his ANC held for admission or not.

Latest Update

Donavynn is supposed to be admitted for HD Ara-C on Thursday. We will have his counts checked on Tuesday (Cheyenne leaves for Georgia on Wednesday so we can't check them then.) It is very unlikely that he will make counts b/c he just received Cytoxan on Thursday. But his hemoglobin was low (9.6) so we may need to stop in after seeing Cheyenne off and get some blood. After he does get the Ara-C we start the Erwinia and GCSF shots up again. He hates that so much, b/c both of them burn. I just pray that he tolerates them well and stays healthy this time, last cycle left him w/ an E. Coli infection which he thankfully fought off pretty quickly. That was a relief since the infections that he had the last time he had Ara-C prior to that were really nasty and left him hospitalized for weeks. This month is hard as he was supposed to be finishing treatment had he not relapsed. That is such a hard pill to swallow. But we are getting close to his schedule lightening up again. At least we can see a light at the end of this tunnel. He should finish up this insane round of treatment in October, maybe later depending on delays b/c of low counts. Then he'll have his 2 weeks of radiation (which we are dreading b/c of all the side effects of that in the short and long term) and then he'll begin maintenance again for 1 year. I want to be happy that maintenance doesn't seem so far off but I also worry about what all of these drugs are doing to his body and what the future will hold... these high doses of chemo and the radiation can cause secondary cancers, heart defects etc. I try not to think about all of that, but it is hard to be happy b/c the last time we got close and started to relax we heard that nasty R word. It is hard to believe that it has been more than 3 years since Donavynn started this battle. Time has gone by so quickly and I remember a time when it just seemed to stand still. Well I guess that is all for now. We are enjoying this week home - trying to find fun things to do before his sissy leaves. I hope everyone is enjoying their weekend.

At Clinic

Donavynn gets his Cytoxan and Etoposide infusions today.  So counts will be dropping this week.  :(  Lets pray for no fevers!  We have a week of fun planned, because Derek is staying with us while Nana and Grumpy are on vacation in Florida.  Last night I got my tattoo for Donavynn that I have wanted to get for a long time now.  I planned on doing it when he finished treatment but since that is at least 1 1/2 years away and he was supposed to finish treatment this month had things gone as planned I decided to get it done now.   That's all the information for right now.  Hope everyone is doing well and I'll post an update when there is more to tell.  Lets pray that we will have a quiet, uneventful couple of weeks!