Melinda S in TX Posted July 19, 2011 Share Posted July 19, 2011 Hannah has had five chemo treatments so far. The easy chemo weeks don't seem to cause problems for her. She had easy chemo yesterday and is busy playing house with Naomi(3dd) right now. She was hungry when she woke up and sat impatiently at the table while I cooked her breakfast. She ate a huge lunch. Thankfully she hasn't lost any weight so far. Hard chemo weeks are very hard on Hannah. These happen every three weeks (weeks 1,4,7, and 10). The first week they gave chemo in the clinic and admitted her to the hospital overnight. They kept her on fluids to protect her bladder, mesna (for her bladder), and iv Kytril (for nausea). She did great with only a couple of throwing up episodes. Last hard chemo (week 4), they gave chemo and fluids in the clinic, sent her home overnight, and wanted her back the next day. Hannah did terrible. She couldn't keep anything down, including the Zofran for nausea. When we took her back, they immediately put her on fluids and iv Kytril. She slept for a few hours and then was much better. If it hadn't been so serious, it would have been funny. When Hannah is getting chemo, or in the hospital, she likes to watch the people. She makes them leave her door open, and she is usually sitting on a stool, waving and talking to everyone in the hall. When she was so sick last week, I took her in and she immediately went and laid on the couch in her room. Everyone came in and started taking care of her. They knew this was not Hannah. After she felt better, she got on her stool in the doorway. It made me smile hearing the first person to see Hannah at her usual post, telling everyone Hannah was better now. A small area of the tumor margin was not clear, so Hannah will need radiation. We are petitioning our insurance company for proton radiation, instead of photon radiation. Our insurance company does cover proton, but only for certain cancers (and not the one Hannah has). Proton is better for several reasons. Pray we find favor with the insurance company and they will cover the proton therapy. Also pray that after they approve it, they will let us get it done in Texas and not have to get it done in Oklahoma. If we can do it in Texas, we can come home on the weekends. If it's in Oklahoma we will be gone the whole month. Within the next two months, Hannah will need surgery to move her ovaries out of the radiation zone. We are not sure when this will be, but sometime mid September is likely. The surgeons will use the same incision that they used for removing the tumor, but this is not supposed to be as hard on Hannah. She will be in the hospital at least five days. We've had to deal with some different problems with the smaller children. Hannah was becoming a bit entitled feeling from all the attention. After she figured out the rules still stand, she doesn't even push it anymore. Naomi (3dd) doesn't really understand what's going on. She sees Hannah gets to eat lots of pudding and ice cream in the hospital, play in the playroom, watch lots of dvds, play playdough in the clinic, gets presents, and does all this fun stuff. Naomi broke my heart the other day when Hannah got a box in the mail. She wanted to know if other people loved her too or just Hannah. Last week the older children planned a Best Littlest Sister Day. They wrapped up some presents and made some party food. Hannah wrapped up some of her things for Naomi. Everyone had a great time. The next day we had a Best Littlest Brother Day for Caleb(8). Things are much better since the parties, and I'm making sure that the others get special things too and not just Hannah. Things are crazy busy around here, but we are settling into our new normal. Hannah's surgery will cause a bump in our normal, but that will quickly be over. Our biggest challenge will be the month of radiation. Whether we are here getting photon radiation or gone somewhere getting proton radiation, it will be hard. I'm trying to make sure that routines, chores, menus, and everything are going well. A day here and there are ok, but I find that anything over a day or so off routine makes life miserable. My mil will be here to supervise and Steven will be working from home some. I need for the children to do some school while I'm gone, otherwise they have too much free time. I'm stopping teacher intensive things (like TOG) and trying to find some school lite options that my mil can do while I'm gone. We have set up a Caringbridge site for Hannah. We just started it, so there's not much on it, but we will be adding as we go along. Things are going pretty well here. Thanks for thinking of us and praying for us. Quote Link to comment Share on other sites More sharing options...
Parrothead Posted July 19, 2011 Share Posted July 19, 2011 (edited) :grouphug: Sounds like you guys are doing great. I've probably missed a few updates. Is the prognosis good? What type of cancer does she have? ETA: I went back and searched your previous posts. I've gotten all caught up. Edited July 19, 2011 by Parrothead Quote Link to comment Share on other sites More sharing options...
cindergretta Posted July 19, 2011 Share Posted July 19, 2011 Thank you for the update. :grouphug: Keeping your family in my thoughts and prayers!!! Quote Link to comment Share on other sites More sharing options...
Random Posted July 19, 2011 Share Posted July 19, 2011 We will be praying! :grouphug: Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted July 19, 2011 Share Posted July 19, 2011 It has been awhile but when I worked in the hospital, we had sibling events so they didn't feel left/unloved/etc. Do they have anything like that? Also, do you have a friend with a teenage child who you could hire just as a special playmate for the other kids. One who could just play games, do stuff you normally don't do. Can you pick a day and maybe take each child out for just a few hours of only mommy time? A friend's little girl used to take a tape recorder and make up stories on it while she was getting chemo. Her siblings loved it. She was about Hannah's age. It was get for them as they still felt that she was at home with them during bedtime routine. Quote Link to comment Share on other sites More sharing options...
AmyP Posted July 19, 2011 Share Posted July 19, 2011 :grouphug: Quote Link to comment Share on other sites More sharing options...
Starr Posted July 19, 2011 Share Posted July 19, 2011 I'm praying for Hannah and your family. You are doing a great job managing such difficult times! Quote Link to comment Share on other sites More sharing options...
gingersmom Posted July 19, 2011 Share Posted July 19, 2011 I remember when my brother was young and very very sick with asthma. He was in/out of the hospital and I was so jealous. I was too young to go visit in his room so I had to sit on a bench in the hall. He came home with a pile of toys always. I thought the hospital must be the best place ever. Sending :grouphug: to you and your family and precious daughter. Quote Link to comment Share on other sites More sharing options...
Teachin'Mine Posted July 19, 2011 Share Posted July 19, 2011 What a great spirit she has! I'm praying that you get the approval from the insurance for the proton radiation and it can be done closer to home. What a great thing you did for the other children in making them feel special too. :) We've been including Hannah in our prayers every day and will continue to do so. :grouphug: Quote Link to comment Share on other sites More sharing options...
catz Posted July 19, 2011 Share Posted July 19, 2011 Thank you for your update. Continued strength and healing thoughts coming your way! :grouphug: Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted July 19, 2011 Share Posted July 19, 2011 Continuing to pray for you and for Hannah. Quote Link to comment Share on other sites More sharing options...
ELaurie Posted July 19, 2011 Share Posted July 19, 2011 I am praying for her! :grouphug: Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted July 19, 2011 Share Posted July 19, 2011 :grouphug: and prayers. Quote Link to comment Share on other sites More sharing options...
JudoMom Posted July 19, 2011 Share Posted July 19, 2011 Praying for Hannah, and your sweet family as you adjust to the new normal--also that the insurance is favorable. Quote Link to comment Share on other sites More sharing options...
Ginevra Posted July 19, 2011 Share Posted July 19, 2011 Thank you for the update. I will continue to send healing energy to Hannah. Naomi's statement broke my heart! The parties for the little ones was a great idea. :grouphug: Quote Link to comment Share on other sites More sharing options...
LizzyBee Posted July 19, 2011 Share Posted July 19, 2011 I'm glad to hear that treatment is going well. It must be so hard to watch your child go through this. :grouphug: Quote Link to comment Share on other sites More sharing options...
lisamarie Posted July 19, 2011 Share Posted July 19, 2011 I'm so glad that she's doing well with her treatment and will pray that the insurance comes through for you. I remember when my brother was young and very very sick with asthma. He was in/out of the hospital and I was so jealous. I was too young to go visit in his room so I had to sit on a bench in the hall. He came home with a pile of toys always. I thought the hospital must be the best place ever. :iagree: My brother had 6 surgeries and would always get really cool presents--a sega, a pup tent, a really big stuffed dog (bigger than my DD3). 25 years later and I still remember exactly what he got and that my sister and I got nothing. Which makes the Best Littlest Sister/Brother days such a great idea! I'm glad they thought of that. Quote Link to comment Share on other sites More sharing options...
Mommy22alyns Posted July 20, 2011 Share Posted July 20, 2011 :grouphug: Quote Link to comment Share on other sites More sharing options...
lmrich Posted July 20, 2011 Share Posted July 20, 2011 Thanks for taking the time to update. She and your family are in my prayers. I love hearing that she is so social at the hospital. Your story of her sitting on her stool reminds me of Heidi and how she always kept a good attitude and strong faith. Quote Link to comment Share on other sites More sharing options...
kwickimom Posted July 20, 2011 Share Posted July 20, 2011 It is great to hear she has such spirit. We are praying! Quote Link to comment Share on other sites More sharing options...
chickenpatty Posted July 20, 2011 Share Posted July 20, 2011 Thank you for the update! Your kids' Best Littlest Sister Day story brought tears to my eyes. What a sweet family you have! Quote Link to comment Share on other sites More sharing options...
Little Nyssa Posted July 20, 2011 Share Posted July 20, 2011 :grouphug: Quote Link to comment Share on other sites More sharing options...
ma23peas Posted July 20, 2011 Share Posted July 20, 2011 :grouphug:Hugs to you, momma...prayers for all.. Can we send pictures or cards? My girls draw uplifting pictures they send in cases like yours...it is not much, but cool to get mail from kids. Quote Link to comment Share on other sites More sharing options...
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