Chemotherapy and Radiation

I have alot to discuss, but I'm not sure how much I'll get out tonight as I am so exhausted. We had to leave by 6 am and just got home at 6 pm. Donavynn had to get chemotherapy and hydration from 8 this morning until 2 and then we had to head over to Overland Park to meet w/ his radiation team. They were great and he was so brave as usual. I was a little concerned because a couple months ago when we showed him the video of another child getting radiation he kind of freaked out. But today while they were fitting his mask I had to remind him repeatedly to keep his mouth closed because he kept laughing. He was just incredible as always. He's super excited that he gets to keep his mask when he finishes radiation lol. I spoke with the doctor and she took the time to answer all of our questions. He can be in the sun, which at first we didn't know about, but because his dose is so low it should be just fine. The success rate of this protocol is very promising - so here's hoping. And secondary cancers are very rare and if they occur it is usually 20+ years down the road so lets hope he stays healthy after this as it is such a low dose. They also don't believe it will affect his counts, though it can and that he shouldn't have any skin burns though that is possible as well, especially with as fair as his skin is but with the dose as low as it is hopefully he'll be just fine. His schedule for the next month is as follows

10/23 - Bone marrow biopsy - if he makes counts he'll start week 51 which means Vincristine, starting Dex and Erwinia shot number 1

10/26 - Erwinia 2 10/28 - Erwinia 3

10/30 - Erwinia 4 (wk 52 Vincristine)

11/2 - Erwinia 5 11/4 - Erwinia 6 and if he makes counts will start radiation

11/5 - Radiation

11/6 - Radiation and Erwinia 1 (wk 53) (start 2nd round of Dexamethasone)

11/9 - Radiation and Erwinia 2

11/10 - Radiation

11/11 - Radiation and Erwinia 3

11/12 - Radiation

11/13 - Final Radiation and Erwinia 4

11/16 - Erwinia 5

11/18 - Erwinia 6

Then we see how his counts are and they determine if GCSF is needed to boost counts to at least 500. The next round after this craziness is long term maintenance. I'll try to update again when I have time and am not quite so tired. Please continue to pray for my little boy!

Ara-C stay updates from morning to early evening

This stay, as with all Ara-C stays has been a rough one. The diarrhea started last night, the fevers are starting the morning and the N/V has been going on since before we even started the chemo yesterday. He is feeling ok for the moment, but his temp is rising. However, we look at it as... if it is making him feel this bad then it must be doing it's job. We got the GCSF shots delivered today and he will be starting those tomorrow after his Erwinia shot. We are supposed to go home tomorrow but w/ the fevers and vomiting it isn't likely. They usually keep us at least one extra day if not 2 b/c he gets his Erwinia tomorrow and then he is due again Monday so they hate to send us home Sunday to turn around and come back up Monday. But during these two weeks it doesn't really matter a whole lot, we are here at least every other day anyway. We just pray that he doesn't get sick and we are happy. But it took the GCSF 2 weeks last time to makes his counts recover... We really hate the nightly shots of GCSF followed by the every other day shots of Erwinia but he understands that it is all to make him better. That is about all for now, just overall sick feeling. Praying he starts to feel better soon... at least as soon as he finishes his last dose of Ara-C at 6 am tomorrow. Thanks for the prayers.

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Late Morning

His temp is now 104.7, and he is a little hypovolemic. His feet are pale and he's tachycardic so they are giving him a bolus of normal saline now. They gave him trilasate to take the fever down and hopefully that will start working soon. They are also going to schedule Benadryl. One of the doctors feels that the fevers from the Ara-C may have an allergic component. So we are going to try that, I hope it works but if it does I just wish we had figured that out sooner as we only have 1 more Ara-C stay after that. They drew cultures which is standard when they spike a fever, and a CBC if he is neutropenic they will start antibiotics as a precaution. They are monitoring his BP, last check was 85/63 which is a little low but he usually runs low anyway. I'll keep you posted with any new updates.

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4pm

His fever is on it's way down. It has been fluctuating most of the afternoon and he ended up getting 2 bolus's of NS. But they did the trick. His capillary refill is good now and so is his coloring. His temp was back up to 104.7, so they gave Tylenol and have that scheduled for every 4 hours in hopes that once we get it down it will stay there. The last time they checked it it was down to 102.5 which was a big improvement in just 30 minutes or so. He is playing with his cars in his bed now which is a huge improvement from the rest of the day. That is about all for now.

Hr 42 Level

Is 0.65 - not low enough. They will draw another level between 3 and 4 tonight (hr 48) and they want that to be at least 0.4 or less if not they up the leucovorin I believe. So he isn't clearing as fast as last time, which I don't understand b/c he is doing so much better this time w/ eating and voiding and BM's - which he needs to do to clear it from his system. Oh well. Hopefully it will be below 0.1 sometime tomorrow so we can go home. We are tired of being here already, ready to get home and enjoy the little time we have between now and our next admission. Keep praying that he clears fast! Thanks for all the support!

My Child is Brilliant!!!

Ok so Dr. Shore asked why I have a giant NO COLACE sign on his wipeoff board. Well it's because he doesn't need a stool softener that has never been an issue. The chemo never stops him up if anything it has the complete opposite affect. And I have always thought that it is so sad that he knows the name of his meds and what they look like. That he can call them by name. But this morning while I was in the shower the nurse brought in colace. Thankfully he told her he doesn't take a red pill! lol So I think she left to get it in another form and he called me and said "Mommy, she's making me take a red pill" so I told him I'd be right out and if she came back to tell her that I said he doesn't need that. Now he is always so polite and cooperative but if he knows he isn't supposed to have it, he isn't so nice apparently. She came back in and I heard him. "I DON'T NEED THAT!" Then he screamed for me! lol I am so proud of my little man for speaking up for himself. If more patients were as aware and would question things, there would probably be alot less errors. As we are only human and humans make mistakes but we need to trust ourselves that as the pt we know more about ourselves than others. I have no problem when a pt has asked me... "what's that for?" "I don't usually take this" Then I can put them at ease by explaining why &/or look again and make sure there wasn't an error b/c often time doctors order things in the hospital that the pts don't take at home. Ok, off the soap box, just thought I would share my little moment that my son showed me once again how amazingly smart he is!!! Off to play in the playroom now!

Methotrexate Stay AGAIN

We got here yesterday at 8am and were in our room by 9:30. He finished his chemo at 3:30 today and drew his initial level which Is 70.11, and it needs to be below 0.1 before we can go home. So now we wait. He has done really well this time around. He has been eating and drinking. Not much, but anything is better than his usual nothing. He has had a little nausea but other than that it has been a good stay. I'll keep you posted w/ his levels when they are checked. I believe they will be checked again at 4 in the morning or so, but I'll have to double check. Thanks for all the prayers!

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.